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Linköping University Medical Dissertation No. 1208

Quality of Care in Children and Adolescents with Type 1 Diabetes

- Patients’ and Healthcare Professionals’ Perspectives

Lena Hanberger

Division of Pedatrics Department of Clinical and Experimental Medicine

Faculty of Health Science, Linköping University SE-581 85 Linköping, Sweden

Linköping, October 2010

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© Lena Hanberger, 2010 Cover illustration: Hanna Lindqvist, at 9 years of age ISBN: 978-91-7393-311-7 ISSN: 0345-0082 Paper I was reprinted with the permission from Elsevier Ltd Paper II was reprinted with the permission from John Wiley and Sons Paper III was reprinted with the permission from The American Diabetes Association Printed by LiU-Tryck, Linköping, Sweden 2010 Distributed by:

Division of Pedatrics Department of Clinical and Experimental Medicine Faculty of Health Science, Linköping University SE-581 85 Linköping, Sweden

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“Just think of how much you can see although the eyes are so small” Pelle, at 4 years of age

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CONTENTS Abstract 7 Summary in Swedish 9 Original publications 11 Abbreviations 13 Introduction 15 Background 16

Quality of care 16 Metabolic control 17 Patient satisfaction 19 Health Related Quality of Life 20 Empowerment 21 Patient education 22 eHealth 23

Hypotheses and Aims 25 Specific aims 25

Methods 27 Participants 28 Study I, II, and V 28 Study III 30 Study IV 30 Data collection 30

Questionnaires 30 Clinical variables 33 HbA1c 34 Web portal log data 34 Web portal intervention 34 Development 34 Content 35 Design of the intervention 36 Quantitative data analyses 37 Qualitative data analysis 38 Ethics 38

Results 40 Study I 40 Study II 42 Study III 45 Study IV 48 Study V 51

Discussion 53 Main findings 53 Structure of care 54 Process of care 55 Outcomes of care 56 Methodological issues 58

Conclusions 61 Future perspectives 62 Acknowledgement 63 References 65

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ABSTRACT Background: Type 1 diabetes is a chronic disease for which there is currently no cure, and high quality care is essential if acute and long-term complications are to be avoided. Many children and adolescents have inadequate metabolic control with increased risk for complications later in life, and adolescent girls have reported low quality of life. Differences in metabolic control between treatment centres have been found but the reasons for this are unclear. Diabetes is a largely self-managed disease. Patient education is central to successful self-management but little is known about how to make best use of diabetes communities on the Internet and integrate them into a practitioner-driven service. Aim: The main objective of this thesis was to gain better understanding of how to improve the quality of diabetes care for children and adolescents, aiming to have near-normal blood glucose, to prevent both acute and late complications and to have good quality of life. Methods: The geographic populations of two paediatric centres (n=400) received validated questionnaires on perceived quality of care and Health-Related Quality of Life (HRQOL). An intervention with a web portal containing diabetes-related information and social networking functions was carried out within the same population. Clinical variables from 18 651 outpatient visits registered in the Swedish paediatric diabetes quality registry, SWEDIABKIDS were analysed. Using data from SWEDIABKIDS, five centres with the lowest mean HbA1c, five with the highest, and five with the largest decrease in centre mean HbA1c between 2003 and 2007 were identified. Team members (n=128) were asked about structure, process, policy, and the messages given to patients about important diabetes issues. Results: Specific areas that were identified as needing improvement included information about self-care, waiting time at outpatient clinics and for treatment, and access to care. Diabetes seemed to reduce HRQOL. Subjects with better metabolic control and with higher frequency of injections reported slightly higher HRQOL, as did those living with both parents compared to those with separated parents. Only 35% of children and adolescents with diabetes in Sweden had an HbA1c level below the treatment target value. Mean HbA1c showed a correlation with mean insulin dose, diabetes duration, and age. A difference between centres was found, but this could not be explained by differences in insulin dose, diabetes duration, or age. Adolescent girls reported lower HRQOL, as did parents of girls aged < 8 years. Girls also had poorer metabolic control, especially during adolescence. In teams with the lowest and the most decreased mean HbA1c, members gave a clear message to patients and parents and had a lower HbA1c target value. Members of these teams appeared more engaged, with a more positive attitude and a greater sense of working as a team. Members of teams with the highest mean HbA1c gave a vaguer message, felt they needed clearer guidelines, and had a perception of poor collaboration within the team. High insulin dose, large centre population, and larger teams also seemed to characterize diabetes centres with low mean HbA1c. The most frequently visited pages on the web portal were the social networking pages, such as blogs, stories and discussions, followed by the diabetes team pages. Those who used the portal most actively were younger, had shorter diabetes duration, and lower HbA1c, and were more often girls. The web portal was not found to have any significant beneficial or adverse effects on HRQOL, empowerment or metabolic control. Conclusions: The quality of diabetes care for children and adolescents in Sweden is not sufficiently good and needs to improve further if complications in later life are to be avoided. Psychosocial support for children and adolescents with diabetes should be appropriate for age and gender. The attitudes of the members in the diabetes care team and the message they give to patients and their parents seem to influence metabolic control in children and adolescents. A clear and consistent message from a unified team appears to have beneficial effects on metabolic control. A web portal that includes comprehensive information about diabetes, and the opportunity to communicate with other people with diabetes and with healthcare professionals may be a useful complement to traditional patient education tools. Members of the diabetes team should encourage its use.

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SWEDISH SUMMARY / SAMMANFATTNING PÅ SVENSKA Bakgrund: Typ1 diabetes är en av de vanligaste kroniska sjukdomarna hos barn och går i dagsläget inte att bota. Om akuta komplikationer och sådana som kommer senare i livet ska kunna undvikas måste diabetesvården vara av hög kvalitet. Många barn och ungdomar med diabetes har inte tillräckligt god blodsockerkontroll och bland ungdomar har påverkad livskvalitet rapporterats, framförallt av flickor i tonåren. Det finns skillnader mellan kliniker när det gäller patienternas blodsockerkontroll men orsakerna till det är okända. Patientutbildning är centralt i behandlingen för att barn, ungdomar och föräldrar ska lyckas med egenvården av diabetes. Internet kan utnyttjas för att ge stöd men kunskap saknas om hur det bäst kan användas och integreras i det kliniska arbetet. Ett viktigt kvalitetsmått inom diabetesvården är graden av metabol kontroll. Det anges i HbA1c som är ett långtidsmått av blodsockernivån. Syfte: Huvudsyftet med den här avhandlingen var att få bättre förståelse för hur kvaliteten inom vården av barn och ungdomar med diabetes ska kunna förbättras, så att blodsockerkontrollen blir så nära normal som möjligt, så att både akuta och senare komplikationer förebyggs och att livskvaliteten blir god. Metod: Enkäter för att undersöka upplevd vårdkvalitet och hälsorelaterad livskvalitet (HRQOL) skickades till alla de 400 barn och ungdomar som behandlades vid två barnkliniker i Sverige. Deras föräldrar fick också enkäter. Vid de två klinikerna genomfördes en intervention med en web-portal som innehöll diabetesrelaterad information och sociala nätverksfunktioner. Kliniska data med uppgifter från 18 651 mottagningsbesök som registrerats i det nationella registret för barn- och ungdomsdiabetes 0-18 år, SWEDIABKIDS, analyserades. Data från SWEDIABKIDS användes för att hitta fem kliniker med lägst (bäst) medel-HbA1c, fem med högst och fem med den största förbättringen (största sänkningen) av medel-HbA1c mellan åren 2003 – 2007. De 128 medlemmarna i diabetesteamen vid dessa kliniker fick en enkät och besvarade frågor om struktur, process, policy och vilket budskap man ville förmedla till patienterna och deras föräldrar när det gäller viktiga områden för diabetes. Resultat: De områden som identifierades där en kvalitetsförbättring behövdes var information om egenvård, väntetid både på mottagningen och för behandlingar samt tillgängligheten till vården. Det verkade som att diabetessjukdomen försämrar HRQOL. De som hade bättre metabol kontroll och de som tog fler insulin-injektioner per dag rapporterade något högre HRQOL. De som bodde med båda sina föräldrar angav också högre HRQOL än de som bodde med en förälder. Endast 35% av barn och ungdomar med diabetes i Sverige hade HbA1c bättre än behandlingsmålet. Det fanns ett samband mellan medel-HbA1c och högre insulindos, längre varaktighet av sjukdomen (duration) och ålder. Skillnader i medel-HbA1c mellan kliniker hittades med den skillnaden kunde inte förklaras av skillnader mellan insulindos, diabetesduration eller ålder bland de patienter som behandlades vid de olika klinikerna. Flickor i tonåren, liksom föräldrar till flickor under 8 år, rapporterade lägre HRQOL. Flickor hade också sämre metabol kontroll, särskilt under tonåren. I de diabetesteam som hade lägst (bäst) medel-HbA1c och störst förbättring av medel-HbA1c gav team-medlemmarna ett tydligt budskap till patienterna och deras föräldrar och teamen hade ett lägre målvärde för HbA1c. Medlemmarna i dessa team verkade vara mer engagerade och hade en mer positiv attityd och en större känsla av att arbeta i team. Medlemmar i team med högst medel-HbA1c gav ett vagare budskap, kände att de behövde tydligare riktlinjer och hade en känsla av dåligt samarbete i teamet. Högre medel-insulindos, större antal patienter och fler team-medlemmar verkade karakterisera kliniker med lågt medel-HbA1c. Web-portalens mest besökta sidor var de sociala nätverkssidorna som t.ex. bloggar, berättelser och forum, följt av de lokala diabetesteamens sidor. De som använde portalen mer aktivt var yngre, hade kortare diabetesduration, lägre HbA1c och var oftare flickor. Web-portalen hade inga statistiskt säkerställda positiva eller negativa effekter på HRQOL, empowerment eller metabol kontroll. Slutsatser: Kvaliteten inom vården av barn och ungdomar med diabetes är inte tillfredsställande god och behöver förbättras om komplikationer senare i livet ska kunna förebyggas. Det psykosociala stödet behöver anpassas efter ålder och kön. Attityden hos diabetesteamets medlemmar och det budskap de ger till patienterna och deras föräldrar verkar påverka den metabola kontrollen hos barn och ungdomar. Ett klart och samstämmigt budskap från ett enigt team verkar ha fördelaktig effekt på den metabola

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kontrollen. En web-portal med omfattande information om diabetes och möjlighet att kommunicera med andra med diabetes och sjukvårdspersonal, kan vara ett användbart komplement till de traditionella verktyg som finns för patientutbildning. Diabetesteamets medlemmar bör uppmuntra användningen av en sådan portal.

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ORIGINAL PUBLICATIONS The present thesis is based on the following studies which will be referred to in the text by their Roman numerals:

I. Hanberger L, Ludvigsson J, Nordfeldt S: Quality of care from the patient's perspective in pediatric diabetes care. Diabetes Res Clin Pract 2006 May;72(2):197-205.

II. Hanberger L, Ludvigsson J, Nordfeldt S: Health-related quality of life in

intensively treated young patients with type 1 diabetes. Pediatr Diabetes 2009 Sep;10(6):374-81

III. Hanberger L, Samuelsson U, Lindblad B, Ludvigsson J: A1C in Children and

adolescents with diabetes in relation to certain clinical parameters: the Swedish Childhood Diabetes Registry SWEDIABKIDS. Diabetes Care 2008 May; 31(5): 927-929

IV. Hanberger L, Samuelsson U, Berterö C, Ludvigsson J: The influence of process, structure and policy on haemoglobin A1c levels in treatment of children and adolescents with type 1 diabetes. (Submitted)

V. Hanberger L, Ludvigsson J, Nordfeldt S: Use of a web 2.0 portal to improve education and communication in young diabetes patients with families – a case study. (Manuscript)

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ABBREVIATIONS

BMI Body Mass Index

CSII Continuous Subcutaneous Insulin Infusion

DCCT The Diabetes Control and Complication Trial Research Group

HbA1c Hemoglobin A1c

HRQOL Health-Related Quality of Life

IDF International Diabetes Federation

IFCC The International Federation for Clinical Chemistry and

Laboratory Medicin

IT Information technology

ISPAD International Society for Pediatric and Adolescent Diabetes

PD Participatory design

QOL Quality of Life

QPP Quality from the Patients’ perspective

SMBG Self-monitoring of blood glucose

SMS Short message service

SWEDIABKIDS The Swedish pediatric diabetes quality registry

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INTRODUCTION Type 1 diabetes is one of the commonest chronic diseases of childhood. When a child or

adolescent is diagnosed with diabetes, all of a sudden everyday life involves multiple

injections or continuous subcutaneous injection. Blood glucose must be monitored several

times a day, and meals and activities must be planned. The blood glucose imbalance must be

quickly rectified. Diabetes management affects the life of the child or adolescent, but family,

teachers and friends are also involved. In spite of modern insulin treatment, there is a

significant risk of long-term complications. In the absence of any effective means of curing

type 1 diabetes, the health service has to provide high-quality care. Quality has to be

measured from different perspectives if it is to be improved. Quality of diabetes care is

usually measured and reported as the level of glycated haemoglobin (HbA1c). In this thesis,

the perspectives of the patients and parents are considered, as well as the process and structure

of care.

The work of the diabetes team is intended to support children and adolescents and their

families through collaboration, education, motivation, and facilitation of life with diabetes,

aiming to achieve the best possible blood glucose control, to avoid acute and late

complications and to maintain a good quality of life. Patient education is central to this, and

the information given to the child and adolescent and to the parents is vitally important. One

of the studies in this thesis addresses the message about essential areas of diabetes

management given by team members to children/adolescents and parents. In an intervention

study, modern information technology was used to enhance patient education and support.

I truly hope that some of the findings of this project will help to improve support for children

and adolescents with diabetes.

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BACKGROUND

Quality of diabetes care Interest in measuring quality of care has increased in recent years. Stakeholders and

healthcare providers are becoming increasingly aware of the importance of quality

improvements and of the relationship between quality and safety. The need for cost-

effectiveness in health-care has also brought these issues into focus. Health-care needs to be

more evidence-based and patient-centred if these demands are to be met 1, 2. In Sweden,

quality improvement is governed by legislation, and the Swedish Health and Medical Service

Act (SFS 1982:763), available at

http://www.sweden.gov.se/content/1/c6/02/31/25/a7ea8ee1.pdf, accessed Jul 8, 2010)

stipulates that quality in healthcare should be systematically and continuously developed and

assured. Quality measures can be used to identify areas that need improvement, to improve

accountability (holding providers responsible for their actions) and to empower informed

consumers 3.

The paradigm that underlies the measurement of quality of care is that of Avedis Donabedian 3, 4, who divided quality of care into three structural categories: Structure of care – the

relatively stable characteristics of the provider, i.e. equipment, resources, and the physical and

organizational settings (e.g. hospital facility, staffing ratios); process of care – what is actually

done in the process of giving and receiving care (e.g. patient seeking care, practitioner

defining diagnosis, recommending treatment); and outcome – the effect on the health status of

the patient (e.g. medical complications, health-related quality of life), patient knowledge, and

the level of patient satisfaction. These three domains are interrelated. Simply stated, good

structure and process lead to favourable outcomes 5. However, outcomes also depend on a

number of other factors beyond the practitioner’s control.

Quality of care has been defined as “fully meeting the needs of those who need the service

most, at the lowest cost to the organization, within the limits and directives set by higher

authorities and purchasers” 6. This means that patients, staff and healthcare providers must be

involved in the process of defining, measuring and improving quality of care.

This project focused on the quality of paediatric diabetes care as seen from the perspectives of

children and adolescents, parents and healthcare professionals. The process and structure of

Background

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care was addressed in Study IV. Outcomes, measured as patient-perceived quality of care

(Studies I and V), health-related quality of life (HRQOL) (Studies II and V), empowerment

(Study V) and metabolic control (Studies III and IV) were also investigated.

Metabolic control

Glycated haemoglobin (HbA1c or A1C) is the standard index of glycaemic control over the

preceding period of 8-12 weeks 7-9. Following the publication of the DCCT study in 1993 10

several countries developed national standardization programmes 11-13, and a system for

metrological traceability has been established 13. All methods used in Sweden are

standardized through EQUALIS (External Quality Assurance in Laboratory Medicine in

Sweden) and have until this year been traceable to the Mono S method. Swedish values used

up to 2010 are approximately 1 % lower than DCCT values 13. According to the consensus

statement on the worldwide standardization of the Hemoglobin A1c measurement 14, a

transition to the International Federation for Clinical Chemistry and Laboratory Medicin

(IFCC) reference method will be implemented in Sweden in 2010. HbA1c results will then be

reported in mmol/mol. Several studies have shown good correlation between HbA1c and

blood glucose levels over time 9, 15, 16.

It is well established that better glycaemic control is associated with fewer long-term

complications 10, 17. Following the DCCT study, the treatment goal of achieving near-normal

levels of HbA1c was adopted.

The aims of monitoring glycaemic control, according to The International Society for

Pediatric and Adolescent Diabetes (ISPAD) guidelines 18 are:

- To assess the level of glycaemic control achieved by each individual so that they may

benefit from attaining their most realistic glycaemic targets

- To help in preventing both the acute complication of hypoglycaemia and the chronic

complications of microvascular and macrovascular diseases

- To minimize the effect of hypoglycaemia and hyperglycaemia on cognitive function

and mood

- To collect data on glycaemic control from each diabetes centre for comparison with

stated local, national and international standards so that the performance and standards

of the interdisciplinary Diabetes Care Teams may be improved

Background

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However, it is difficult to obtain good metabolic control, especially in adolescents 19-22. Many

children and adolescents with type 1 diabetes do not achieve adequate HbA1c levels, putting

them at risk of complications 19, 22-24. Metabolic control deteriorates in adolescence 24 and it is

closely linked to metabolic control in late childhood 25. Several factors (patient-related as well

as treatment-related) affect metabolic control. Age, gender, duration of disease, number and

frequency of insulin injections, and frequency of self-monitoring of blood glucose (SMBG)

have been found to predict metabolic control 7, 10, 21, 23, 26-29. Studies have shown that socio-

demographic factors such as single-parenthood 30, 31 and lower income, and ethnic minority

status in the USA 32 are associated with greater risk for poor diabetes control. Adolescents

with diabetes have significantly higher rates of depression than their non-diabetic peers 33, 34,

and researchers have reported that depressed adolescents have poorer metabolic control 34-36.

Metabolic control differs between treatment centres, but the reasons for this remain unclear 7,

37, 38. The differences found in a large cohort in Europe, Japan and North America were

followed by feedback and comparison, which led to intensification of insulin therapy in most

clinics, but improved glycaemic control in only a few 38. A recent study suggests that a

centre’s effectiveness in implementing treatment regimens appears to influence outcomes 26.

Subsequent findings indicated that the clear and consistent setting of glycaemic targets by

diabetes teams is associated with improved outcomes as measured by HbA1c 39. Differences

found in HbA1c between clinics in Scotland could not be explained by factors such as age,

insulin regimen, body mass index (BMI), and social circumstances 37. The authors suggest

that structure and strategies of care and clinical philosophy may be determinants of good

glycaemic control. Better glycemic control was found in university-affiliated hospitals and

centres in a French study 40. Variables such as public versus private care, socio-economic

background, and urban versus rural location were not predictors of glycaemic control in

children with type 1 diabetes in New South Wales (Australia) and the Australian Capital

Territory 41.

In this project metabolic control among children and adolescents with diabetes in Sweden and

also the differences in mean centre HbA1c is addressed in study III and IV respectively.

Furthermore metabolic control is an outcome variable in study V.

Background

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Patient satisfaction

Patient satisfaction should be included in evaluations of quality of care because they are

partners in healthcare – with perceptions and opinions of their own as to whether care is good

or bad 42. They are the best judges of certain aspects of care, such as interpersonal relations.

There are also ideological reasons for their inclusion. In a democratic society, patients should

have the right to take part in decisions that influence their lives. In addition, there is a

consumer market in healthcare, in which meeting patient need is part of the definition of

quality. Furthermore, greater satisfaction has been found to be associated with better

compliance 43. Studies have found that nurses and physicians have different perceptions of

quality of care to those of patients 44, 45.

Only a few measuring instruments have been specifically developed for the assessment of

quality of care from the patient's perspective 46. These include the Quality, Satisfaction,

Performance model (QSP)47, the Quality from the Patient’s Perspective (QPP)48, and the

Picker Patient Experience questionnaire 49. It has been suggested that the QSP and QPP

models could usefully be integrated 50. The Picker Patient Experience questionnaire identifies

problems in healthcare, with lower scores indicating higher satisfaction.

The QPP questionnaire has been used in several studies to assess perceived quality of care in

adults 51-54. Factors found to be associated with improvement e.g. at an emergency

department, included information, respect, empathy, and nutrition 52. In colostomy patients

they included information and patient participation in the decision-making process 55, and in

district nursing care they included pain alleviation and patient participation in the decision-

making process 53. Short waiting time was strongly associated with positive perceived quality

of care at an emergency department 51.

As regards quality of paediatric diabetes care, many studies have been done to assess insulin

regimens and biomedical equipment using metabolic control as the outcome variable 56, 57.

Health related quality of life (HRQOL) is also often measured, and validated questionnaires

are available 58. There are validated questionnaires that assess satisfaction with treatment,

including the Diabetes Treatment Satisfaction Questionnaire (DTSQ) 59-61. Modified versions

Background

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adapted for adolescents and parents are also available 62. However, published studies of

patient and parent perspectives of paediatric diabetes care are few and far between.

Health Related Quality of Life

The demands of diabetes treatment include multiple daily insulin injections, self monitoring

of blood glucose, meal planning and physical activities. These have to be coordinated with the

social demands of school, family, and leisure activities etc. Consequently, it is important to

understand what children and adolescents with diabetes regard as good quality of life, so that

we can help them reach this goal whilst simultaneously maintaining good diabetes control.

Good quality of life is also a treatment goal and we should therefore measure it. International

guidelines recommend that HRQOL should be assessed routinely 60, 63, 64. It can be measured

reliably and prove clinically useful 65.

The World Health Organization has defined “Quality of Life” (QOL) as “individuals'

perceptions of their position in life in the context of the culture and value systems in which

they live and in relation to their goals, expectations, standards and concerns” 66. It is a broad

concept that is influenced by individual physical and psychological health. Health-related

quality of life (HRQOL) reflects the impact of illness and its treatment on an individual’s

functions. The key domains of HRQOL include physical, psychological and social function 65,

67. Generic HRQOL is independent of current health status and is useful in both healthy and

chronically ill children, and it allows for comparisons across populations. Disease-specific

HRQOL refers to illness-specific outcomes and allows for the assessment of clinically

relevant issues within a particular illness group 65, 68. Such measures of perceived HRQOL are

relevant in clinical research and practice and are done to establish patient state (a descriptive

perspective), the effects of treatments (a clinical perspective) and for quality assurance (an

evaluative perspective)68.

When HRQOL was compared across eight paediatric conditions, adolescents diagnosed with

diabetes reported higher HRQOL than those with eosinophilic gastrointestinal disorder,

obesity, and sickle cell disease 69. They reported lower HRQOL than adolescents with cystic

fibrosis, inflammatory bowel disease, epilepsy, and post-renal transplantation. When children

and adolescents with 10 different chronic diseases (diabetes, gastrointestinal conditions,

cardiac conditions, asthma, obesity, end stage renal disease, psychiatric disorders, cancer,

rheumatic conditions, and cerebral palsy) were compared in an earlier study 70, patients with

Background

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diabetes reported the highest HRQOL. In both studies, all children and adolescents with a

chronic condition reported lower HRQOL than healthy subjects. Other findings suggest that

adolescents with diabetes perceived their HRQOL to be lower than healthy peers 71.

Previous studies of the factors that influence HRQOL in children and adolescents with

diabetes have provided generally inconsistent results. There is some evidence that girls rate

their HRQOL lower than boys but few researchers have tried to interpret or explain these

findings 72, 73. Some found that younger age was related to higher HRQOL 72, 74. Higher

HRQOL has also been associated with better metabolic control in some studies 74-76 but the

relation is complex and needs further study 77. Studies of the quality of life benefits of

continuous subcutaneous insulin infusion (CSII) have produced conflicting results 78, 79.

Lower HRQOL appears also to be related to higher levels of depression 35.

Information provided by parents as proxy-respondents is not equivalent to that reported by the

child or adolescent. Parents of children with a health condition often perceive HRQOL of

their children to be lower than the children do themselves 71, 80-82. This indicates that it is

important to obtain information directly from children and adolescents.

A variety of questionnaires have been used to assess health-related quality of life in children

and adolescents with diabetes 65, 71, 83-85. It has been suggested that a combination of generic

and disease-specific questionnaires is required for a comprehensive assessment of HRQOL in

teenagers 67, 72.

Empowerment

Empowerment is an important concept in diabetes education and has become an integral part

of the process. Diabetes is largely a self-managed disease and the patient’s role is complex

and demanding. Empowerment can be defined as “the discovery and development of one’s

inherent capacity to be responsible for one’s own life” 86. Patients are empowered when they

have the knowledge, skills, attitudes and self-awareness necessary to improve their quality of

life by changing their own behaviour and that of others 86. Empowerment requires knowledge,

and diabetes care teams must provide patients and their parents with the information and skills

they need to master their own diabetes care 87. Changes have occurred in the concept of

empowerment since the philosophy was adopted in diabetes care at the beginning of the 1990s 87, 88. The authors emphasise that health professionals should not make specific

Background

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recommendations and solve problems but should instead help patients and their parents to

reach their own solutions, making small steps towards the resolution of a greater problem.

They conclude that empowerment occurs when the goal of the healthcare professional is to

increase the ability of patients to think critically and make autonomous, informed decisions 88.

Empowerment can be described as both a process and an outcome. It is a process when the

purpose of educational intervention is to increase the ability to think critically and act

autonomously. Empowerment is an outcome when the process results in an enhanced sense of

self-efficacy 89.

Patient education

Education is the key to the successful management of diabetes 60, 64, 90 and is central to clinical

management. Achieving a balance between insulin levels, food intake and energy expenditure

are cornerstones of clinical management. Diabetes requires extensive self-management and

frequent high-quality educational input and support 91, 92. Initial education is about survival,

i.e. what the child and the family must learn in order to leave the hospital. This must be

followed by education specific to the patient’s individual circumstances. Continuing

education involves identifying gaps in theoretical or applied knowledge or barriers to

behavioural changes and promoting improved glycaemic control as the main aim 93. Diabetes

education is continuously delivered by healthcare professionals in diabetes care teams at the

onset of diabetes, at outpatient clinics, as well as during telephone consultations, group

meetings and camps.

The evidence supporting structured educational interventions has been reviewed by several

authors 85, 94-96. In a review of psycho-educational studies, Murphy et al found that research

was improving in both quantity and quality. They concluded that there is still not enough

evidence to recommend the adoption of any particular educational programme, and no

programme has been proven to be effective in randomized studies of subjects with poor

metabolic control 85. They also found that education appears to be most effective when

integrated into routine care, when parental involvement is encouraged, and when adolescent

self-efficacy is promoted. It is likely that several different programmes will be required –

targeted at different stages, ages and risk groups of individuals, groups and families.

The most commonly used sources of information, as reported by young adults and parents,

include diabetes medical teams, diabetes websites, and diabetes associations 97. Information

Background

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technology (IT) and the Internet allow rapid and easy access to sources of information for

patients, clinicians, carers and other significant persons. They also allow interactive

communication. Results of a review of interactive computer-assisted technology in adults

showed improved diabetes health outcomes 98. It has been suggested that computer-assisted

information technology (IT) could be an important tool and should be evaluated for its

potential to improve diabetes care. Interventions in children with diabetes have involved a

variety of communication methods, including the Internet, telephone, video-conferencing, e-

mail, short message service (SMS), and manual downloading of information99-103.

Behavioural management, medication management and physiological (blood glucose)

monitoring have been subjects of IT intervention. Few studies have provided definitive

evidence, which is not unexpected, as this kind of complex intervention is restricted by

methodological limitations 104.

eHealth

Information technology is developing rapidly and the Internet has become increasingly

popular 105. There is still some uncertainty about how often consumers use the Internet to

search for health-related information. By excluding non-health-related search terms, it has

been found that 5% of all Google searches are health-related. These data suggest that health

information is not one of the most commonly researched topics on the Internet. Nonetheless,

given the millions of searches performed each day, they could hardly be described as

uncommon 106. The use of Internet or Web technology in health care is called eHealth 105.

“Web 2.0” is a term for the second generation of the Internet, referring to improved

communication and collaboration between people via social networking. The main difference

between Web 1.0 (the first generation) and Web 2.0 is interaction. Web 1.0 was mainly

unidirectional while Web 2.0 allows the user to add information or content to the Web 107.

Examples of user-generated online communities include Facebook, YouTube, Flickr and

Twitter. The application of Web 2.0 technology in health and medicine is referred to as Health

2.0 or Medicine 2.0 108, 109. Examples of such websites include Patientslikeme (Patients Like

Me. URL: http://www.patientslikeme.com/ [accessed Aug 3, 2010]) and Hello Health (Hello

Health. URL: http://hellohealth.com/ [accessed Aug 3, 2010]). Health 2.0/Medicine 2.0 is still

a developing area, and no general consensus regarding the definition of Health 2.0/Medicine

2.0 has been reached110. In 2005, the World Health Assembly approved the eHealth resolution

which emphasizes the importance of eHealth and asks member states to draw up strategic

Background

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24

plans for the development and implementation of eHealth services in the various segments of

the health sector (World Health Organization Regional Office for Europe. 2005 May. World

Health Assembly resolution on eHealth (WHA58.28) URL:

http://apps.who.int/gb/ebwha/pdf_files/WHA58/WHA58_28-en.pdf [accessed: Aug 3, 2010]).

A study of patients’ needs as regards Internet interventions in long-term conditions, including

adult patients with diabetes and parents of children with diabetes, highlighted the need for

further development. It was found that the participants welcomed the potential of Internet

interventions but felt that many websites were not achieving their full potential 111.

Participants also generated detailed and specific quality criteria with regard to information

content, presentation, interactivity, and trustworthiness, criteria which could be used by

developers and purchasers of Internet interventions.

Access to relevant information is the first step to patient empowerment, and it is assumed that

Health 2.0/Medicine 2.0 will lead to empowerment of the patient as the Internet can deliver

information in vast quantities. The concept of “patient empowerment 2.0” has been described

as “the active participation of the citizen in his or her health and care pathway with the

interactive use of Information and Communication Technologies” 112.

An evaluation of an intervention with a web portal with diabetes related information and the

possibility to communicate with others with diabetes and health care professionals is

presented in this thesis (study V).

Background

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25

HYPOTHESES AND AIMS

As the outcome measured as metabolic control in children and adolescents with diabetes in

Sweden is not yet sufficiently good, areas for improvement of care need to be further

identified. Thus we hypothetisized that perceptions from children’s, adolescents’ and their

parents’ perspective reveals areas of improvement as well as groups of patients in need of

extra support. Further, we hypothetisized that the structure, process, and policy of the diabetes

care team, and the attitudes of the team-members, as well as patient education affect

metabolic control.

With this background the main objective of this thesis was to gain better understanding of

how to improve the quality of diabetes care for children and adolescents, aiming to have near-

normal blood glucose, to prevent both acute and late complications and to have good quality

of life.

The specific aims of each study were:

- To explore the quality of diabetes care as perceived by children and adolescents on

modern treatment and to evaluate the clinical usefulness of the QPP questionnaire for

identifying areas needing improvement. The third objective was to study perceived

quality of care in relation to factors such as metabolic control and severe

hypoglycaemia. (Study I)

- To analyse the impact on health-related quality of life of factors related to the disease

and its treatment in intensively treated young patients with type 1 diabetes. (Study II)

- To use detailed registry data to determine how HbA1c is related to duration of

diabetes, age, gender and BMI and to assess whether variation in insulin regimens can

explain differences in metabolic control. A further aim was to explore differences

between mean HbA1c at different paediatric clinics with similar populations. (Study

III)

Hypotheses and Aims

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26

- To identify factors for improvement of centre mean HbA1c at paediatric departments

treating children and adolescents with diabetes. A further aim was to identify any team

characteristics associated with low and high centre mean HbA1c. (Study IV)

- In a clinical experiment develop a web portal with diabetes related information and the

possibility to communicate with others, and study its use and effects in young patients

with diabetes, and their parents.( Study V)

Hypotheses and Aims

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27

METHODS Quantitative and qualitative methods have been used in the studies. An overview of the designs and methods is given in Table 1. Table 1. Overview of the design, participants, data collection years and methods used in the five studies. Study Design Participants Data

collection period (year)

Data collection method

Study I Quality of care

Observational, Cross-sectional Quantitative

The geographic population of children and adolescents with type 1 diabetes treated at the two paediatric centres in Linköping and Jönköping n=400

2003 Self-completed questionnaire Clinical variables from the Swedish paediatric diabetes quality registry, SWEDIABKIDS

Study II Quality of life

Observational, Cross-sectional Quantitative

The geographic population of children and adolescents with type 1 diabetes treated at the two paediatric centres in Linköping and Jönköping n=400

2003 Self-completed Clinical variables from the Swedish paediatric diabetes quality registry, SWEDIABKIDS

Study III HbA1c and clinical variables

Observational, Cross-sectional Quantitative

Patients < 20 years of age registered in the Swedish paediatric diabetes quality registry, SWEDIABKIDS n=3195

2001-2002 Clinical variables from the Swedish paediatric diabetes quality registry, SWEDIABKIDS

Study IV Differences between centre mean HbA1c

Observational, Cross-sectional Quantitative Qualitative

Diabetes team members at 15 paediatric centres n=128

2008 Web-based questionnaire Clinical variables from the Swedish paediatric diabetes quality registry, SWEDIABKIDS

Study V Use of a web portal

Randomized controlled intervention study Quantitative

The geographic population of children and adolescents with type 1 diabetes treated at the two paediatric centres in Linköping and Jönköping Eligible 2006: n=474

2006, 2007, 2008

Self-completed Log data from the portal Diabit.se Clinical variables from the Swedish paediatric diabetes quality registry, SWEDIABKIDS

Methods

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28

Participants

Study I, II and V Studies I, II and V included the geographic population of children and adolescents with

clinically diagnosed type 1 diabetes treated at the two paediatric centres at Linköping

University Hospital and Jönköping County Hospital. Swedish healthcare providers treat all

patients in their catchment area, so these populations are unselected.

Data on children and adolescents treated at paediatric clinics are registered in the Swedish

paediatric diabetes quality registry, SWEDIABKIDS 79. Studies I and II included all children

and adolescents at the two centres registered during 2003, n=400.

All children and adolescents < 19 years of age, treated at the two paediatric centres at

Linköping University Hospital and Jönköping County Hospital with a diabetes duration of

> 0.1 years, registered during 2005 (n=474) were considered eligible and invited to participate

at the start of the intervention study reported in Study V. A further 36 newly diagnosed

children were invited to participate after study year 1 (Figure 1).

Characteristics and treatment

Treatment policy consisted of multiple insulin therapy at both centres, following international

guidelines 113, and adapted individually. Active self-monitoring of blood-glucose was

recommended and patient education and psychosocial support was given by multi-disciplinary

diabetes teams. The clinical characteristics of the populations are presented in Table 2. Table 2. Characteristics of the populations in Studies I, II, and V.

# Year mean

§ At baseline

Study I & II Study V

n=400 n=474

Gender, girls/boys (%) 48% / 52% 51% / 49%

Mean (±SD, range) Mean (±SD, range)

Age (years) 13.2 (3.9, 2.6-19.6) 13.2 (3.7, 2.8-18.5)

Duration (years) 5.1 (3.8, 0.3-17.6) 5.0 (3.7, 0.1-17.7)

HbA1c (%) 7.1 (1.2, 4.0-10.7)# 6.8 (1.2, 3.8-12.5)§

Insulin dose, year mean (U/kg) 0.98 (0.31, 0.19-2.08) 0.96 (0.31, 0.22-2.09)

Number of daily doses 4.8 (0.7, 2.0-6.7) 5.3 (1.0, 2-10)

Methods

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29

Figure 1. Flow chart of the participants in the intervention and data collection.

Allocated to control n=230 (144 adolescents)

No consent n=11

Allocated to intervention n=244 (151 adolescents)

Invited to receive login n=261 (148 adolescents)

Accepted login n=484 parents (Intervention group / Control group n=230/254) (287 adolescents)

Assessed for eligibility: All children and adolescents with diabetes at the paediatric clinics at Linköping and Jönköping, n=474 (295 adolescents)

Accepted login n=233 (142 adolescents)

Transfer to other centre n=5 Transfer to

other centre n=3

Newly diagnosed n=36

Study year one

Study year two

Enrolment

Allocation

Control group n=230 (144 adolescents)

Log data Data from diabetes registry

Baseline data: Questionnaire Data from diabetes registry

Follow-up; Questionnaire

Follow-up; Questionnaire

No consent n=7

Methods

Intervention group

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30

Study III Study III included all children and adolescents aged < 20 years registered in SWEDIABKIDS,

treated at the 22 centres in Sweden that provided data to the registry in 2001 - 2002, n=3195

(1526 girls, 1669 boys).

Study IV The population in Paper IV consisted of healthcare professionals (diabetes specialist

physicians, diabetes specialist nurses, registered nurses, dieticians, physicians under training,

psychologists, social workers, healthcare assistants and preschool teachers), n=128, in 15

diabetes teams in Sweden. Between 2003 and 2007 five of these teams had the lowest centre

mean HbA1c (Low group), five teams had the geratest decrease in centre mean HbA1c

(Decrease group), and five teams had the highest centre mean HbA1c (High group) of the

centres in Sweden reporting data to SWEDIABKIDS. Mean HbA1c was 6.8% in the Low

group, 7. 3% in the Decrease group, and 7.7% in the High group. Two teams were based at

university hospitals, four at county hospitals, and nine at smaller local hospitals. Data from

the Swedish paediatric diabetes quality registry, SWEDIABKIDS, were used to identify these

teams.

Data collection

Questionnaires Quality of care from the patient’s perspective

A modified version of the questionnaire Quality of Care from the Patient’s Perspective (QPP)

was used for data collection 48, 114, 115. The original QPP questionnaire was based on grounded

theory. This theoretical model assesses quality of care by measuring both the resource

structure of the care organization and the patient’s preferences. Resource structure is made up

of person-related as well as physical and administrative environmental qualities. Based on this

rationale, the patient’s perception of service quality may be divided into four dimensions:

Medical-technical competence of health care professionals, physical-technical conditions of

the care organization, identity-oriented approach in the attitudes of healthcare professionals,

and the socio-cultural environment of the care organization48. A questionnaire was developed

in which items are evaluated in two ways by the respondents – the perceived quality of care

and the subjective importance the patient ascribes to that particular item. The possible

Methods

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31

responses range from “Do not agree at all” (1) to “Fully agree” (4). When perceived reality is

scored lower than importance, patients are considered less satisfied, implying that this area of

care is in need of improvement.

The construct validity and the internal consistency have been tested 114, 116, 117.

Using our clinical experience, we selected for our study the items in the QPP questionnaire

that we thought suitable for adolescents with diabetes and for parents of children and

adolescents with diabetes. Diabetes-specific items were added. The dimensions, factors and

number of questions in both the modified version and the original QPP questionnaire are

shown in Table 3.

Table 3. Dimensions, factors, and number of items in the QPP questionnaire, modified and original version.

Dimension Factor Number of items in the modified

QPP

Number of items in the original

QPP Medical-technical competence

Medical care

2

4

Treatment waiting time 1 2 Physical-technical conditions

Medical technical equipment

2

1

Identity-oriented approach Information before procedures 2 (4)* 3 Information after procedures 15 (30)* 3 Participation 3 3 Contact person 2 (4)* 2 Respect, all professions 15 6 Commitment, all professions 15 6 Empathy, all professions 10 6 Socio-cultural environment General atmosphere 2 4 Privacy 1 2 Routines 1 1 Context-specific items Continuity in patient-doctor relationship 2 Advice and instructions 4 Access to care, diabetes doctor 3 Access to care, diabetes nurse 3 Waiting time at the outpatient clinic 1

* Numbers of items in the questionnaire for parents

Methods

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32

Health-related quality of life

The Disabkids questionnaire was used to measure HRQOL in Studies II and V. The Disabkids

project, a cross-cultural multi-centre study in seven European countries, developed a HRQOL

questionnaire for children and adolescents with a chronic medical condition, in self-

completion and proxy versions 68, 84, 118. The reliability and validity of the questionnaire have

been established 118.

The DISABKIDS generic module includes six subscales: Physical limitation, emotion,

independence, social inclusion, social exclusion, and treatment. Disease-specific modules for

different chronic conditions are available. The module for diabetes consists of two domains of

diabetes QOL, the burden of treatment, and impact of treatment on emotional reactions. Low

values reflect low QOL, on a 5-point Likert scale.

The Disabkids generic module is available in a long 37-item version and a short 12-item

version. As Study II was carried out during the development phase of the short form, a pilot

version of the short form was used. This was provided by the Disabkids group and included

19 items. In Study V, the final 12-item version of the short form was used. The final version

of the diabetes-specific module was used in both Study II and Study V.

The Disabkids instrument has now been used in several surveys of children with chronic

health conditions, e.g. limb reduction deficiency, diabetes, urinary incontinence, asthma,

neurofibromatosis, and cancer 73, 119-124.

In Study II, the standardised EQ-5D instrument 125-127 was used in addition to measure

HRQOL. EQ-5D uses five parameters to assess HRQOL: Mobility, self-care, usual activities,

pain/discomfort, and anxiety/depression. It is applicable to a wide range of health conditions

and treatments and provides a simple descriptive profile and a single index value for health

status. EQ-5D is extensively used in adults but has also been found to be a useful instrument

in children 127-129.

Empowerment

The Swedish Diabetes Empowerment scale short form (SWE-DES-SF-10)130, developed from

the American Diabetes Empowerment scale 131, was used to asses empowerment in Study V.

It reflects four subscales: Goal achievement, self-awareness, stress management, and

readiness to change. The scores range from strongly agree (=5) to strongly disagree (=1). The

Methods

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33

instrument has been validated for adults but not for children or adolescents 131 although it has

been used previously in studies of adolescents 132. Process, structure, and treatment policy

A questionnaire was constructed covering key issues in diabetes treatment and care, based on

the hypothesis of Study IV and the author’s best clinical practice. Health professionals from

the 15 included diabetes teams were asked to report data on process, (e.g. treatment at

diagnosis, insulin treatment, routines for patient education, frequency of outpatient

attendances, process of work within the team, and follow-up of centre results), structure (e.g.

centre size, team size, paediatric and diabetes education, and professional experience) and

policy (e.g. HbA1c target value and guidelines for interventions at different levels of HbA1c).

Open-ended questions were used to obtain a deeper understanding of team policy, attitudes of

team members and the message conveyed to patients and parent, e.g. “As regards

life / diet / physical activity etc., what is the most important message you would like to convey

to children/adolescents with diabetes and their parents?” Finally respondents were asked to

“Give reasons for the mean HbA1c at your centre”.

Questionnaire administration procedure

The questionnaires in Studies I, II and V (including a stamped return envelope) were sent

from an independent department at Linköping University. Two (Studies II and V) or three

reminders (Study I) were sent to the respondents.

In Study IV a web-based questionnaire was e-mailed to each member in the diabetes teams

included in the study (three reminders). The e-mail addresses were obtained from a contact

person in each team when the team accepted our invitation to join the study.

Clinical variables

Outpatient attendance data from Swedish paediatric diabetes centres are registered in the

Swedish paediatric diabetes quality registry, SWEDIABKIDS 79. Initially, from 2000 to 2007,

data were registered locally in a specially designed program for childhood diabetes. The

registry has been web-based since 2008 and is available to all paediatric diabetes centres in

Sweden. In Study III, all the data in the analysis were obtained from this registry. In Studies I,

II, and V the registry was the source of data on age, HbA1c, duration, insulin dose, number of

insulin injections and insulin treatment. In Study IV data on HbA1c and insulin dose were

provided by the registry.

Methods

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34

HbA1c HbA1c, expressed as the percentage of haemoglobin that is glycated reflects average blood

glucose levels during the preceding 8-12 weeks 9, 15, 133-135 and is the gold standard for long-

term follow-up of glycaemic control. The data on HbA1c obtained from SWEDIABKIDS,

were derived from capillary blood samples measured with the Bayer/Siemens DCA-2000

analyzer or by local laboratory methods. All methods were standardized through EQUALIS

(External Quality Assurance in Laboratory Medicine in Sweden) and were traceable to the

Mono-S method. At the time that the studies in this thesis were carried out, Swedish HbA1c

values used were on average 1% lower than values produced by the Diabetes Control and

Complication Trial (DCCT)/National Glycohemoglobin Standardization Program (NGSP) 13.

The normal range at age < 50 years was 3.6-5.0%. The 2007 ISPAD guidelines divides

HbA1c levels into three categories: < 6.5% (optimal), 6.5-8% (suboptimal, action suggested),

> 8% (high risk, action required) 136.

Web portal log data

A personal password was required to access the web portal during the two study periods in

Study V. Logged data were continuously stored on a server at Linköping university, and they

were analysed for frequency and temporal pattern of login and page hits.

Web portal intervention

Development

The web portal was developed in collaboration with medical informatics researchers,

paediatricians, behavioural scientists, clinicians, patients and their parents 137, 138 using

participatory oriented design (PD) 139. The design specification was developed in steps. The

inter-operability of system functions was refined after evaluations by clinical staff, children

and parents. The development process has been described by Ekberg et al 137 and started with

interviews, cultural probes method 140 and workshops to identify the needs and requirements

of children and adolescents with diabetes. The collected data were validated and evaluated by

testing prototypes. After further analysis, a system solution was defined.

Methods

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35

In the spring of 2006, the research group and the two participating diabetes teams launched

the Internet portal, called Diabit, for invited patients and parents.

Content

The Diabit portal contained specific diabetes-related information and social networking

functions such as message boards and blogs. The content of the portal was designed for the

children, parents, and practitioners of the local communities of the two respective hospitals.

For younger children, the portal was targeted at their parents, and for children aged 12 years

and over, the portal was designed to appeal to both parents and adolescents. There was a set of

rules for using the community areas of the portal, based on common sense and national laws,

with individual users being responsible for the information they provided.

Extensive information was provided in text pages, short educational films and online

simulation software 141. Information for doctors was evidence-based and relied on best clinical

practice to try to create trusted and reliable sources of information. Specific diabetes-related

information on 13 main topics, divided into 99 subtopics/web pages, had been written by

members of the two local diabetes teams. Links to diabetes-related information included

Acute situations, What is diabetes, Relationships, Late complications, Insulin, Devices, Food,

Blood glucose, Exercise and sports, Living with diabetes, This can affect, Research and

External links. Each section was revised by other team-members from the two hospitals. The

names and affiliations of the authors and editors of the text were displayed at the bottom of

the screen, with the date of the latest update (Figure 2).

Methods

___________________________________________________________________________

36

Figure 2. A screen shot of the Diabit portal. The text in grey lists the authors and reviewers of the content, and

the date of the latest update.

The portal also provided functions for repeat prescriptions, making appointments, asking

questions, viewing questions and answers, contact information, photos of staff, and other

general information about the local diabetes teams and their services. In addition, each local

diabetes team provided a personalised summary of important basic information, e.g. “What I

might say to newly diagnosed children and their parents”.

Design of the intervention

The flow of participants and follow-up is presented in Figure 1. Children and adolescents with

diabetes treated at the paediatric clinics in Linköping and Jönköping were randomized either

to the intervention group or the control group. The intervention group gained access to the

web portal at the start of the first study period in year one (April 2006), using a personal

password. Subjects in the control group were offered a personal password after the first study

period.

The first study period started in April 11, 2006 and was planned to last 12 months but, due to

the slow inclusion of active users, it was extended to September 25, 2007. The second study

period, year two, lasted from September 26, 2007 until September 25, 2008.

Methods

___________________________________________________________________________

37

Surveys were conducted at baseline, after study year one and after study year two. Logged

data from the portal were registered continuously. Clinical variables were registered in

SWEDIABKIDS at outpatient attendances during the study periods and included in the

analysis.

Quantitative data analyses

All analyses were performed using the SPSS program, version 10.0-17.0. A p-value of < 0.05

was considered statistically significant.

Student’s t-test was used when data were normally distributed. Student’s t-test (one-way) was

used for comparison of a group mean value to grand means in Studies I and II and Student’s t-

test (independent) was used for comparisons of mean values between different groups. The

Mann-Whitney U test was used for comparisons between groups when data were not normally

distributed. Mean values before and after the intervention in Study V were compared using

Student’s paired test (normally distributed data) and the Wilcoxon signed rank test (non-

normally distributed data). Categorical variables were compared by Chi-square test.

Correlations were assessed with Pearson’s correlation. ANOVA was used for comparisons

between multiple variables.

Stepwise multiple linear regression analysis was done to identify predictor variables of

HRQOL and HbA1c in Study II and Study III respectively.

Reliability and internal consistency in factors in Study I were measured by using Cronbach’s

alpha. Active users of the web portal

In a separate analysis before and after the firs t year of access, activ e users were defined as

those where som eone in the fam ily logged in five times or more during their first year with

access to th e portal. This cut-off level for active use was defined retros pectively taking into

account the distribution of frequency of use.

The group of active users were compared to those with zero to four site visits during the same

time period. Thus we merged da ta for the inte rvention group at baselin e and after one year

only (study year one), and for th e previous control group b efore and after one year of access

respectively (study year two).

Methods

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38

Qualitative data analysis

The open-ended questions in Study IV were analysed by summative content analysis 142.

Researchers were blinded to hospital groups. The written answers were reviewed by the main

author and a co-author. The analysis began with the identification and quantification of

certain words or phrases in the text. Next, these words or phrases were categorised according

to their perceived meaning. A latent content analysis was then carried out, with the aim of

capturing the meaning of each category. Latent content analysis is a term for the process of

interpretation of content with the aim of discovering underlying meanings of words or

phrases. This analysis was performed independently by the main author and co-author.

Categorisations were compared and reviewed until consensus was reached.

Ethics

The studies were approved by the Research Ethics Committee of the Faculty of Health

Sciences at Linköping University, Sweden.

The participants in Studies I and II were given written information about the studies. They

were informed that participation was voluntary, that data would be treated confidentially and

that the findings could not be traced back to specific individuals, which meant that patient and

parent responses to the questionnaires about perception of quality of care and HRQOL could

not affect care provision.

Parents and adolescents were given written information about the registration of data in the

SWEDIABKIDS at the time of diabetes diagnosis, and they gave written consent to

registration of data in this registry. Values registered in the quality registry were generated

during routine clinical consultations and did not involve any extra measurements.

The participants (both parents and adolescents) in the web portal intervention study were

given written information. They were informed that they could withdraw from the

intervention at any time without giving a reason. Parents and adolescents gave written consent

to participate. Diabetes team members did not have access to the message board in order to

provide a secure and comfortable environment for the patients and parents who formed this

community.

Methods

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39

The rules for the community areas (message board and blogs) were listed on the web portal

along with information about the user’s personal responsibilities. One researcher was assigned

the role of message board moderator with the task of monitoring postings and removing

inappropriate content.

Methods

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40

RESULTS

Quality of care from the patient’s perspective (Study I)

The results indicated high perceived quality in general in both parents and adolescents.

Figures 3 and 4 show the highest and the lowest ranked factors as measured by mean

perceived reality along with the ascribed importance of each, in adolescents and parents.

In both parents and adolescents, discrepancies were found between perceived reality and

importance for the factors:

- information about self-care

- waiting time at the outpatient clinic

- treatment waiting time

- access to care

Parents

0

1

2

3

4

Speak

in priv

acy

Respect

(all p

rofes

sions

)

Genera

l atm

osphe

re

Continuit

y

Treatm

ent w

aiting t

ime

Waitin

g tim

e at th

e clin

ic

Info a

bout

self c

are

Acces

s to c

are

Reality

Importance

Discrepancy

0

1

2

3

4

Speak

in p

rivacy

Respect

(all p

rofe

ssion

s)

Gener

al at

mos

phere

Continuit

y

Info

abo

ut se

lf ca

re

Treatm

ent w

aiting

time

Waitin

g tim

e at th

e clin

ic

Acces

s to

care

Reality

Importance

Discrepancy

Adolescents

Figure 3. Grand mean for perceived reality and

importance for factors in parents. Arrowed factors

show a discrepancy between perceived reality and

importance.

Figure 4. Grand mean for perceived reality and

importance for factors in adolescents. Arrowed

factors show a discrepancy between perceived

reality and importance.

Parents generally rated reality significantly higher and importance even higher than

adolescents did. Grand mean for reality in parents and adolescents was 3.35, SD ±0.46 and

3.27, SD ±0.45 respectively (p=0.012). Grand mean for importance in parents and adolescents

was 3.67, SD± 0.36 and 3.42, SD± 0.46 respectively (p<0.001).

Results

___________________________________________________________________________

41

0

1

2

3

4

Insu

lin

Inje

ction

pen

/pum

p

Treat

men

t of h

ypos

Blood

glu

cose

dev

ice

Blood

/ ur

ine

gluco

se te

st

Alcohol

Late

com

plica

tions

Preve

ntio

n of

keto

acid

osis

Preve

ntio

n of

late

com

plica

tions

Infe

ctio

ns

Reality

Importance

Adolescents

Discrepancy

Figures 5 and 6 show items within the factor of information about self-care. Differences

between reality and importance were found in information provided about:

- alcohol

- late complications

- prevention of complications

- prevention of ketoacidosis

- infections

Parents

0

1

2

3

4

Inje

ction

pen

/pum

p

Insu

lin

Blood

glu

cose

dev

ice

Treat

men

t of h

ypos

Blood

/ ur

ine

gluco

se te

st

Preve

ntio

n of

keto

acid

osis

Late

com

plica

tions

Infe

ctio

ns

Alcohol

Preve

ntio

n of

late

com

plica

tions

Reality

Importance

Discrepancy

Figure 5. Grand mean for perceived reality and

importance in parents for items within the factor of

information about self-care. Arrowed items show a

discrepancy between perceived reality and

importance.

Figure 6. Grand mean for perceived reality and

importance in adolescents for items within the

factor of information about self-care. Arrowed

items show a discrepancy between perceived reality

and importance

.

Grand mean of reality in parents reporting that their child had had severe hypoglycemia

(needing help from another person) during the last year (n=101) was lower than in those

reporting that their child had not had severe hypoglycemia during the same period (n=110)

(3.18 SD ±0.47 v. 3.41 SD ±0.44, p<0.001). No correlation was found between HbA1c,

insulin dose, number of doses, age, duration or BMI and the grand mean of factors for either

perceived reality or importance.

Results

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42

Less satisfied subjects

Less satisfied subjects were defined as those who reported a mean reality lower than the grand

mean combined with a mean importance higher than the grand mean. HbA1c was higher in

the less satisfied subjects than in all other subjects (7.3%, ±SD 1.2 v. 6.9%, ±SD1.2, p =

0.037).

Health-Related Quality of Life (Study II)

Parents and adolescents reported lower HRQOL for diabetes-specific parameters (dimensions

not included in the questionnaire for children 8-12 years) than for generic parameters.

Diabetes-specific HRQOL in adolescents correlated inversely with HbA1c, as did generic

HRQOL in boys aged 8-12 years.

Differences between groups regarding generic HRQOL and diabetes-specific HRQOL are

shown in Table 4. Higher generic and diabetes-specific HRQOL scores were found in parents

of adolescents who reported that their child had not had severe hypoglycemia during the

previous year than in those who reported that their child had suffered severe hypoglycaemia

during the same period, but this difference was not seen in the adolescents’ own reports. The

pattern was the same in parents of children aged 8-12 years. This pattern was repeated in the

EQ-5D scores of parents of adolescents. Generic HRQOL in adolescents correlated with the

number of insulin doses (Table 5).

A gender difference was found in that adolescent girls reported a lower grand mean of generic

and diabetes-specific parameters compared to boys. Parents of girls aged < 8 years reported

lower grand means of diabetes-specific parameters than parents of boys aged < 8 years.

Adolescents and children aged 8-12 years reported higher grand means of GeHRQOL than

did their parents.

Adolescents with parents living together reported higher generic and higher diabetes-specific

HRQOL than those with separated parents.

Results

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43

Both GeHRQOL and DiHRQOL were inversely correlated with self-estimated degree of

disease severity in adolescents, parents of adolescents, and parents of children aged 8-12 years

(Table 5). The same was found for frequency of diabetic problems in adolescents, parents of

adolescent, and parents of children aged 8-12 years. EQ-5D in both adolescents and their

parents was inversely correlated with the degree of disease severity. EQ-5D was also

inversely correlated with the frequency of diabetic problems, in adolescents and in their

parents.

Table 4. Differences in generic HRQOL (GeHRQOL) and diabetes-specific HRQOL (DiHRQOL) between

groups. GeHRQOL DiHRQOL Mean, SD p Mean, SD p Parents of adolescents: child not had severe hypoglycemia

80.8, ±11.2

0.014

60.2, ± 15.4

0.047 child had severe hypoglycaemia 75.9, ± 12.4 55.9, ± 16.3

Parents of children aged 8-12 years: child not had severe hypoglycemia

82.9, ± 10.0

0.005

62.6, ± 14.1

0.007 child had severe hypoglycaemia 75.9, ± 12.5 53.0, ± 17.8 Adolescent girls 79.5, ± 12.0 0.041 53.5, ± 19.8 0.001 Adolescent boys 83.4, ± 11.3 63.9, ± 17.6 Parents of girls aged <8 years 58.7, ± 11.5 0.047 Parents of boys aged <8 years 68.0, ± 12.5 Adolescents

81.5, ± 11.8

0.019

Parents of adolescents 78.7, ± 12.1 Children aged 8-12 years 82.7, ± 11.7 <0.001 Parents of children aged 8-12 years 78.6, ± 12.0 Adolescents with parents living together 82.8, ± 10.4 0.027 60.9, ± 18.0 0.043 Adolescents with separated parents 71.7, ± 14.9 46.7, ± 24.2

Results

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44

Table 5. Variables that correlate with EQ-5D, Generic HRQOL (GeHRQOL) and Diabetes-specific HRQOL

(DiHRQOL) in different groups.

HbA1c Insulin dose frequency

Disease severity

Frequency of problems with

the diabetes r p r p r p r p Boys aged 8-12 years: GeHRQOL

-0.28

0.045

Adolescents: GeHRQOL

0.24

0.007

-0.39

<0.001

-0.33

<0.001

DiHRQOL -0.16 0.046 -0.42 <0.001 -0.33 <0.001 EQ-5D -0.41 <0.001 -0.24 0.003

Parents of adolescents: GeHRQOL

-0.39

<0.001

-0.30

<0.001

DiHRQOL -0.49 <0.001 -0.39 <0.001 EQ-5D -0.46 <0.001 -0.36 <0.001

Parents of children 8-12 years: GeHRQOL

-0.47

<0.001

-0.50

<0.001

Parents of children 8-12 years: DiHRQOL

-0.53

<0.001

-0.52

<0.001

A multiple linear regression analysis was done on the effect of different variables on generic

HRQOL, diabetes-specific HRQOL and EQ-5D in the different groups. The following

variables each accounted for 2-18% of reported HRQOL:

- gender

- age

- duration

- HbA1c

- recent severe hypoglycaemia

- frequency of blood glucose tests

- parents living together or not

- mother’s educational level

- use of insulin pump

- centre

Different patterns were found in parents, adolescents and in children aged 8-12 years.

Results

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45

0

100

200

300

400

500

600

700

800

900

<7.0 7.0-7.9 8.0-9.9 ≥10

HbA1c (%)

Num

bers

of p

atie

nts

HbA1c in children and adolescents with diabetes (Study III)

Metabolic control

For the patients registered in the Swedish paediatric diabetes quality registry,

SWEDIABKIDS, during 2001-2002, the 2-year overall mean HbA1c was 7.5% (±SEM 0.1,

n=2160), DCCT / NGSP-corrected 8.3%, and values were normally distributed.

HbA1c for girls (all ages) was 7.5 (SD 1.3, range 3.7-13.7, n=1022) and boys 7.4 (SD 1.2,

range 4.2-14.5, n=1138) (p=0.015). Glycaemic control deteriorated with increasing age, with

significant differences becoming apparent between boys and girls in adolescence, at the ages

of 14, 16, 17, and 18 (Figure 7).

35% of children and adolescents had mean HbA1c values of < 7.0% (our target value during

the data collection period) (Figure 8).

Figure 7. Mean HbA1c values in boys and

girls. P value of the difference between boys and

girls at the ages of 14, 16, 17 and 18 (*p<0.05,

**p<0.01, ***p<0.001).

Figure 8. Distribution of HbA1c into four HbA1c

categories.

ResultsM

ean

HbA

1c (%

)

___________________________________________________________________________

46

Diabetes duration correlated with mean HbA1c (r= 0.248, p<0.001), as did higher age (r=

0.222, p<0.001). However, no correlation was found between HbA1c and age- and gender-

adjusted BMI SD.

In children who had had diabetes for more than 4 years, there was a weak correlation between

duration and 2-year mean HbA1c (r=0.130, p<0.001).

Insulin regimen

Age correlated with mean insulin dose expressed as U/kg/day (r=0.263, p<0.001). The

correlation between mean insulin dose and disease duration (r=0.238, p<0.001) was more

evident in boys (r=0.316) than in girls (r=0.155).

Metabolic control and insulin regimen

HbA1c correlated with mean insulin dose expressed as U/kg body weight (r=0.341, p<0.001).

Insulin dose varied between the four categories of HbA1c (p<0.001), with the highest being

seen in those with the highest HbA1c.

Centres

As shown in Figure 9, mean HbA1c varied between centres, from 6.8% (95% CI 6.77-6.91) to

8.2% (95% CI 8.09-8.28), (p<0.001). Of the 20 centres, only one reported a mean HbA1c

below our target value (7.0%) at the time of data collection, and one centre was just above

(7.1%). The numbers of attendances at the centres did not correlate with the centre mean

HbA1c. The mean insulin dose varied between centres, from 0.92 U/kg/day (95% CI 0.86-

0.97) to 1.12 U/kg/day (95% CI 1.04-1.20), p<0.001. The mean insulin dose or duration of

diabetes for each centre did not correlate with the centre mean HbA1c. Gender, insulin dose,

number of doses, age, duration, the age- and gender-adjusted BMI SD, and the number of

patients did not differ between the centres with the five lowest and those with the five highest

mean HbA1c.

Results

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47

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20

Centre

7,0

7,5

8,0

8,5

HbA

1c (%

), 95

% C

I

Figure. 9. Mean HbA1c and 95% CI at Swedish paediatric clinics.

In a multiple regression model that included age, gender, duration of diabetes, insulin dose,

and age- and gender-adjusted BMI SD, high insulin dose (beta coefficient 1.09, p<0.001)

followed by high number of visits per patient year (beta coefficient 0.14, p<0.001), long

diabetes duration (beta coefficient 0.05, p<0.001) and age (beta coefficient 0.02, p<0.001)

were found to be significant predictors of raised HbA1c. BMI SD was not a statistically

significant predictor of raised HbA1c (beta coefficient 0.01, p=0.329). This pattern was more

obvious in girls than in boys for insulin dose (beta coefficient 1.43, p<0.001), diabetes

duration (beta coefficient 0.4, p<0.001) and age (beta coefficient 0.04, p<0.001). As expected,

mean HbA1c varied significantly between centres (p<0.001) (Figure 10). In the regression

model, this difference remained significant after adjusting for age, gender, duration of

diabetes, insulin dose, and age- and gender-adjusted BMI SD. This pattern remained when

only children of pubertal age were included.

Results

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48

Centre Mean HbA1c – Process, Structure and Policy (Study IV)

Similarities were found in the Low and the Decrease groups. Differences in structure, process,

and policy between these two groups compared to the High group are presented below.

Differences in structure:

- Shorter length of professional experience of team members. Means, in years, were

17.8 (range 15.4-21.8), 15.4 (range 14.9-27.4), and 23.1 (range 20.6-30.0) for the

Low, Decrease, and High group respectively.

- Lower proportion of team members with special paediatric education (54%, 53%, and

65% for the Low, Decrease, and High group respectively) and, similarly, diabetes

education (24%, 30%, and 34% for the Low, Decrease, and High group respectively).

- Lower proportion of team members who perceived that the team leader did not meet

their expectations (11%, 15%, and 32% in the Low, Decrease, and High group

respectively).

- A trend for larger centre size (more patients). The numbers of patients treated were

> 100 at 4, 5, and 3 of the centres in the Low, Decrease, and High group respectively.

- A trend for larger team size. The numbers of diabetes team members were > 5 at 5, 5,

and 3 of the centres in the Low, Decrease, and High group respectively. There was no

difference in ratio of patients to diabetes team member.

Differences in process

- Higher frequency of teams with mean insulin dose above the grand mean for all

Swedish paediatric centres (3 teams, 4 teams, and no team in the Low, Decrease, and

High group respectively).

- Higher compliance to guidelines on action to be taken at HbA1c levels above target

value. The proportion of team members stating that guidelines were always or often

followed were 51%, 46%, and 27% in the Low, Decrease, and High group

respectively.

Differences in policy

- A trend for lower HbA1c target value. Target value was 6% in 1 and 2 teams in the

Low and Decrease groups respectively, but this was not reported by any of the teams

Results

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49

in the High group. Target value was 6.5% in 4, 3, and 5 of the teams in the Low,

Decrease, and High group respectively.

Attitudes and policy among team members

The results of the analysis of the open-ended questions about the message conveyed to

patients and parents about important issues in diabetes management are presented in Table 6.

Similarities were found between the Low and the Decrease groups. The most frequently

reported messages in the groups are shown in Table 6. The Low and the Decrease groups are

compared with the High group.

Table 6. The commonest messages from the diabetes team members to patients and parents about important

issues in diabetes management.

Issue Low and Decrease group High group

Life with diabetes

Diabetes changes life but life can still be good. Planning and regularity was emphasized.

Diabetes does not cause a big change in life, and life will almost stay the same. You have to learn to accept the disease and you will need knowledge.

Diet Good quality food, without being specified, food everyone should be eating. Planning and regularity was emphasized.

Good quality food, without being specified, and eaten at regular times.

Sweets Sweets are acceptable, but should only be eaten on rare occasions.

Reduction if there is visible sugar was (one respondent).

Physical activity Physical activity is good and should be encouraged.

Physical activity is good and should be encouraged.

Physical activity is important; it is a part of the treatment and makes the management of diabetes easier.

Diabetes is not an obstacle to physical activity.

Planning and regularity was emphasized.

Self monitoring of blood glucose

Self-monitoring of blood glucose is required for good metabolic control and has to be interpreted and analysed.

Self-monitoring of blood glucose is required for good metabolic control and has to be interpreted and analysed.

High frequency of blood glucose tests was recommended (2-6 tests / day, day profiles every week).

Low frequency of tests was recommended (2 tests / day, day profiles every 3rd month.

Adjustment of insulin doses

Parents and children are encouraged to adjust insulin doses by testing and evaluation.

Parents and children are encouraged to adjust insulin doses by testing and evaluation. A higher proportion in this group stated that you learn to adjust doses in time.

Treatment of hypos

Dextrose is usually enough to reverse hypoglycaemia and the patient should not eat too much.

Quick action was recommended in the event of hypoglycaemia, treated with food or dextrose, depending on the situation.

Prevention of hypos

Information was given about acute complications and how to prevent and treat them. Some said that mild hypos are not dangerous.

Information was given about acute complications and how to prevent and treat them.

Prevention of late complications

Good metabolic control reduces the risk of late complications, a message used to encourage treatment concordance.

Good metabolic control reduces the risk of late complications, a message used to encourage treatment concordance. Information was given about tobacco as a risk factor.

HbA1c HbA1c reflects blood glucose levels over the previous weeks and the target value is 6.5%. Many in the Decrease group gave 6% as target value.

HbA1c reflects blood glucose levels over the previous weeks and that the target value is 6.5% but that the target value could also be individual.

Results

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50

The perceptions of reasons for centre mean HbA1c in the Low and the Decrease group

demonstrated a positive attitude to the team and a feeling of involvement (Table 7). Team

members expressed reasons for failure in the High group.

Table 7. Most frequently reported reasons for centre mean HbA1c in the Low, Decrease, and High group

respectively.

Reasons for centre mean HbA1c Low Decrease High

Cohesive team X X

Team members give the same message X X

Team members are focused on treatment targets X X

Patient follow-up X X

Patient information X X

Team members are highly involved X

Team members are accessible X

Information and care at diagnosis X

High competence of team members X

Lack of resources X

Lack of cooperation within the team X

Lack of treatment guidelines X

Guidelines need to be revised X

Characteristics of the population X

What does this mean?

Greater clarity in the message conveyed to patients and their families was found in the Low

and Decrease groups compared to the High group.

This was shown for

- HbA1c target value (most obvious in the Decrease group)

- Diet, physical activity and the treatment of hypoglycaemia

- Structured everyday life

- Diabetes requires that life must be lived within certain limits in diet, physical activity

and self-treatment.

Another difference was that team members in the Low and Decrease group displayed a high

degree of commitment and engagement in the way they formulated their answers. This was

reflected in their frequent use of capital and italic letters and exclamation marks. This was

Results

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51

also suggested by their different choice of words. In the context of physical activity positive

expressions were found in the Low and Decrease groups, e.g. “…daily physical activity which

is nice and fun…”, “…great to be active physically”, “It’s great for the disease and the

body”, while this type of expression did not feature at all in the High group.

The perception of reasons for centre mean HbA1c revealed feelings of self-confidence and

success, with a positive attitude to the team and the task in the Low and Decrease groups,

while the opposite was shown in the High group.

Use of a web 2.0 portal to improve education and communication in young diabetes patients with families – a case study (Study V)

The most frequently visited pages of the portal in study year one were the social networking

features such as blogs, stories and discussions, followed by the diabetes team pages and an

online disease simulator device.

No differences were found at baseline, after study year one, or after study year two between

the intervention and the control group, in either adolescents or parents, as regards the outcome

variables (HRQOL, empowerment, perception of quality of care regarding information

measured by DISABKIDS, SWE-DES-SF-10 and QPP, HbA1c, frequency of severe

hypoglycaemia, and frequency of glucose self-monitoring). No difference was found in

Internet use (aims of using, contact with others with diabetes, and searching for information

about diabetes).

Active users (those with a family member who logged in 5 or more times during the first year

of access to the portal), n=68, compared to those who were less active (n=419) were younger

(mean age 12.1 years, ±SD 3.8 v. 14.0 ±SD 3.8, p=0.008), had shorter diabetes duration

(mean years 3.9, ±SD 3.3, v. 5.5, ±SD 3.8, p= 0.006), and had lower HbA1c (mean 6.4%,

±SD 1.1, v. 6.8%, ±SD 1.2, p=0.010).

The proportion of girls was higher in the active user group than in the comparison group

(p=0.001). More mothers than fathers were active users but the difference was not statistically

Results

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52

significant. Seven active users (10%) had HbA1c > 8%, which was comparable to the

comparison group (56/419, 13%), p=0.535.

In active users, no differences were found between baseline and after intervention, in

HRQOL, empowerment, or the perceived quality of information. HbA1c, insulin dose,

frequency of glucose self-monitoring, number of injections per day, and number of severe

hypoglycaemia attacks in the previous 12 months did not differ between the groups.

Results

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53

DISCUSSION

The development and improvement of quality of care involves changing attitudes, values,

protocols and processes. Changes must be evidence-based, which requires research. The

definition of quality of care, as mentioned in the introduction, implies that the perspectives of

both patient and professional have to be taken into account 6, as this thesis has done.

The main findings are presented below in relation to the aims, followed by a discussion based

on Donabedian’s classification of quality of care: Structure, process and outcome.

Methodological issues are also addressed.

Main findings

Overall quality of care as perceived by patients and parents was high. Specific parts of care

that were considered to be in need of improvement included information about self-care,

waiting time at outpatient clinics and for treatment, and access to care. Those who were less

satisfied had poorer metabolic control than those who were more satisfied.

Diabetes seems to reduce HRQOL. Subjects with better metabolic control and on intensive

insulin treatment with higher numbers of injections did report somewhat higher HRQOL, as

did those living with both parents compared to those with separated parents.

Only 35% of children and adolescents with diabetes in Sweden had an HbA1c level below the

treatment target value. Mean HbA1c showed a correlation with mean insulin dose, diabetes

duration, and age. A pronounced difference between centres was found, but this could not be

explained by differences in insulin dose, diabetes duration, or age.

A gender difference was found in HRQOL and metabolic control. Adolescent girls reported

lower HRQOL, as did parents of girls aged < 8 years. Girls also had poorer metabolic control,

especially during adolescence.

Diabetes care teams at centres with low centre mean HbA1c had a lower HbA1c target value

than centres with high mean HbA1c. They also provided a clearer message to patients and

their families about diet, physical activity, treatment of hypoglycaemia, and structured

everyday life. Members of these teams showed greater commitment and had a positive

Discussion

___________________________________________________________________________

54

attitude to the team, reporting that team members collaborated well. Team members at centres

with high mean HbA1c gave a vaguer message and perceived a lack of collaboration within

the team. High insulin dose, large centre population, and high numbers of team members also

seem to characterize diabetes centres with low mean HbA1c.

The most frequently visited pages on the web portal were the social networking pages, such as

blogs, stories and discussions, followed by the diabetes team pages. Those who used the

portal most actively were younger, had shorter diabetes duration, and lower HbA1c, although

those with HbA1c > 8% were also found in this group of active users. A gender difference

was found, with girls and mothers visiting the portal more frequently than boys and fathers.

The web portal was not found to have any significant beneficial or adverse effects on

HRQOL, empowerment or metabolic control.

Structure of care

There is a long tradition of working in multi-disciplinary diabetes care teams. The DCCT

study concluded that this had beneficial effects on patients’ metabolic control 10. The patients

included in the present studies were all treated by teams that included several professions.

In Study IV, teams with low centre mean HbA1c tended to treat more patients, but no

significant correlation between centre population (numbers of patients treated) and centre

mean HbA1c was found, which is consistent with previous studies 7. These teams also had

more members, although the ratio of patients to team members did not differ. Some studies

have found that larger teams are more effective, whereas other studies have reported that

larger teams suffer from coordination and process inefficiencies. Taken as a whole, results

suggest that the benefits of larger teams are dependent on the nature of the task and the team

environment 143. The shorter formal education and shorter diabetes working experience found

in the Low and Decrease group could be explained by the possibility that commitment and

enthusiasm may decline with increasing length of service in the same role.

The leader in a team has an important role 144. He or she has to have the ability to clarify

goals, and to motivate and encourage team members to work towards these. In teams with

high centre mean HbA1c, a higher proportion of team members expressed dissatisfaction with

the leadership. The High group also reported a lack of collaboration within the team which

could also reflect poor leadership.

Discussion

___________________________________________________________________________

55

Process of care

Treatment at the time of diagnosis was similar at all centres included in Study IV and

followed Swedish national guidelines 145. The methods and materials that were used for

patient education were roughly the same, and no specific method was found to be more

successful, which is consistent with the findings of others 85.

In the population of 2 160 patients in Study III, insulin dose correlated with HbA1c, and this

was more evident during adolescence, indicating that there are other physiological and

psychological factors that influence metabolic control. High insulin dose was also among the

strongest predictors of high HbA1c level, but it can be reasonably assumed that insulin dose is

increased as the HbA1c level increases. On the other hand, centre mean insulin dose tended to

be higher at centres with low centre mean HbA1c in Study IV, indicating a positive effect of

unhesitatingly increasing the dose. Earlier studies have not found a clear relation between

centre mean insulin dose and HbA1c 7, 26. We do not know if there was any correlation in

Studies III and IV between insulin dose and frequency of hypoglycaemia as we did not have

the relevant data.

In Study III, numbers of attendances per patient per year was one of the strongest predictors

of high HbA1c level. A causal link is debatable, as patients with increasing HbA1c are likely

to attend the out-patient clinic more frequently.

Patient education is essential in diabetes care and is an integral part of the process. Small

differences in the content of the message delivered from healthcare professionals and the way

it is expressed can affect the recipients’ (the children, adolescents and their parents)

understanding. In Study III, members of diabetes care teams with low centre mean HbA1c

gave a clear and distinct message about treatment target values, which is consistent with

earlier studies 39, 146, 147, but the message was also clearer with regard to diet, the importance

of physical activity, structured everyday life, and high frequency of glucose self-monitoring.

Language characteristics also revealed a high level of commitment in team members of the

Low and Decrease groups. It has been found that 19% of the young adults feel that their

physician/diabetes care team do not understand their daily challenges 97.

The collaborative process within the team is important to its performance 143. Factors

associated with success, in terms of centre mean HbA1c, were, as perceived by team

Discussion

___________________________________________________________________________

56

members, a cohesive team with members giving the same message. This is consistent with the

findings of others 39, and suggests that education and professional development should aim to

facilitate this collaborative process within the team. Research has demonstrated that properly

designed team training programmes can improve team performance, but success is highly

dependent on organizational factors such as leadership support and the learning environment. 148.

Our own clinical experience tells us that there is a lack of modern teaching aids and we

therefore wanted to use the potential of the Internet in patient education. The web portal,

Diabit, that was developed for, and used in the intervention (Study V), was intended as a

complement to traditional patient education tools. Diabetes information is available on other

web sites, but we could not find any that had been developed with the involvement of users.

As both patients and practitioners took part in the development of our portal, it can be

regarded as a bottom-up-project. It was a non-commercial, multidisciplinary project and

achieved by a collaborative effort. In a qualitative study we found that patients were satisfied

with the portal and that they found the information it contained useful 149. In Study V, we

found that Diabit was used both by patients and parents. The interactive and communication

features proved popular, especially the social networking pages. Although the most active

users had better metabolic control, even those with poor metabolic control were found among

the users. In this thesis, Diabit was also evaluated for outcome variables in diabetes care and

these are discussed below.

Outcomes of care

Metabolic control

In Sweden, children and adolescents with diabetes are intensively treated with multiple

injections or CSII. However, only 35% of the population in Study III had an HbA1c below the

target value at the time of data collection. This increases the risk of late complications

affecting a large number of these children and adolescents in later life 10, 17. Mean HbA1c in

the population (DCCT-corrected value 8.3%) was comparable to the levels (DCCT-values)

found in two international multicentre studies, i.e. 8.3% 24, and 8.2% 28, and lower than a

Scottish study with 9.1% 37 and a French study with 8.97% 40. A German study 7 produced a

lower mean level of 7.8%, and a mean level of 8.18% was found in a North American

population 23.

Discussion

___________________________________________________________________________

57

Both patient-related (gender, age, duration) and treatment-related (insulin dose) factors

affected metabolic control, as shown in other studies 7, 23, 28, 40. The deterioration of HbA1c

levels during adolescence indicates that both physical and psychological factors affect

metabolic control. The association between poorer metabolic control and longer duration is

likely, to some extent, to be due to progressive loss of beta-cell function. The poorer control

seen in adolescent girls suggests that more support is needed in this particular group.

A main finding in Study III was the difference in mean HbA1c between centres. This could

not be explained by differences in characteristics in the populations. In Study IV some reasons

were found in the process of care, as described above.

Health-related quality of life

The studies that earlier have been carried out on HRQOL in children and adolescents with

diabetes have not shown consistent results, and the reasons for this are not clear. In the large

Swedish population that was studied in Study II, the findings were similar to those of others

who found a higher HRQOL in boys than in girls 72, 73, 121, 124 – again suggesting that girls

need extra support and understanding. The reason why HRQOL is higher in those with good

metabolic control 74-76 than in those with poor metabolic control is not obvious but, in any

event, those with poor metabolic control will still need to be given special attention. The

family situation must also be taken into account, as perceived HRQOL was higher when

parents were living together than when they were separated. The provision of better

understanding and support requires an awareness of the child’s social situation.

The scores for generic HRQOL in children and adolescents in the present study are

comparable to those found in another Swedish population 73, but parents in Study II rated the

generic HRQOL of their child higher. Age and gender differences have also been found in

healthy children and adolescents. It has been shown in a large representative sample of

European children and adolescents in 12 European countries that children generally have

higher HRQOL values than adolescents, and that female adolescents often score lower than

their male counterparts. Differences in HRQOL between countries point to the importance of

national contexts for the health and wellbeing of children and adolescents 150.

In Study II, groups with lower perceived HRQOL could be identified by using the Disabkids

questionnaire. In routine clinical care, this type of questionnaire can be used on an individual

level as a starting point for a discussion with the patient. On a population level, it gives useful

information about quality of care over time and between groups.

Discussion

___________________________________________________________________________

58

Patients’ perception of quality of care

Patient and parent perceptions of quality of care were the focus of Study I. As found in other

studies, the average level of quality of care was high 49, 151. The areas where low ratings for

perceived reality combined with high ratings for importance were found to be information,

access to care, and waiting-time. The intervention with the web portal Diabit (Study V) aimed

to address some of these areas. The use of the Internet in patient education has the potential to

meet some of the need for support during adolescence, as a high proportion of adolescents are

Internet users 152. In Study V, no effect on quality of care as regards information was found

following the intervention. Patients’ and parents’ perception of the need for better information

about self-care in Study I is consistent with the practitioners’ view of patient education in

diabetes management 60, 64, 90 and highlights that education is a key issue. Interestingly,

information about late complications was one information item that received lower reality

ratings combined with high importance. This is valuable information for diabetes care teams,

as it implies that candid information should be given about the risk of complications.

Effects of the web portal intervention

We could not find any measureable beneficial effects on quality of care as regards

information, HRQOL, empowerment, or metabolic control. Nor could we find any adverse

effects on these variables. The portal aimed to increase patients’ empowerment, including

autonomy. A risk of less favourable outcomes has been found in earlier studies aiming to

increase patients’ empowerment and autonomy, e.g. on metabolic control, especially when

there was a low level of parental involvement 132, 153.

Methodological issues

The strengths of Studies I-III and V are the large unselected populations, which may increase

the precision of the study. In Study IV, the number of teams in each group is small, reducing

the chance of finding significant differences by quantitative analysis.

Study III used data from the Swedish paediatric diabetes quality registry, SWEDIABKIDS 79.

The completeness of information obtained from the register was 100% for gender and age,

93% for duration and age at onset, 90% for HbA1c, 89% for weight, 84% for length, 83% for

BMI, 81% for BMI SD, 79% for insulin dose, 76% for injections per day, and 65% for

Discussion

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59

proportion of fast acting insulin. SWEDIABKIDS started in 2000 and some of the Swedish

paediatric departments were not providing data for the register at the time of the study (2002-

2003). Even so, a large unselected, homogenous population is included and this descriptive

study is considered valid.

The QPP questionnaire used to measure patients’ perception of quality of care is based on a

grounded theory model and has been validated in an adult population but not in children 114.

We modified the questionnaire on paediatric diabetes care according to best clinical practice.

The Disabkids questionnaire used to measure HRQOL was developed in a European project

that included interviews and focus groups with children and adolescents 84. It has been

validated in children with a variety of chronic conditions, including diabetes 65 and has been

found to be applicable to the Swedish paediatric population 73. The EQ-5D questionnaire has

been proven to be reliable and valid in adults 125. Some studies have used it to measure

HRQOL in children with chronic conditions 127-129. In Study III, EQ-5D correlated with

disease severity and frequency of problems. These correlations were also found with the

Disabkids generic HRQOL and diabetes specific HRQOL, confirming the usefulness of EQ-

5D in children. A child version of the EQ-5D has recently been developed 154, 155. The SWE-

DES-SF-10 questionnaire used in Study V to investigate empowerment has not been validated

for children or adolescents but has been used in other studies of adolescents 132. To reduce the

risk of low validity, the present studies used the QPP, EQ-5D and SWE-DES-SF-10

questionnaires only in parents as proxies and in adolescents, and not in younger children.

The response rates ranged from 59% to 72% in the surveys in Studies I, II and V. In Study IV

the response rate of the e-mailed questionnaire to diabetes team members was 85%. No gold

standard for an acceptable response rate exists. When the response rate to mailed physician

questionnaires was studied, the average was 61% and remained fairly constant over time 156.

There is a risk of bias if the characteristics of the non-responders differ from the responders,

which affects generalizability. In Study I, mean HbA1c and mean age were higher in non-

responders than in responders but this is not thought to affect the conclusions drawn.

In Study V, the randomization of patients into intervention and control groups prevented

selection bias. The baseline characteristics of the two groups were comparable, reducing

confounding factors. Significant differences in outcome variables could not be found between

the intervention group and the control group in Study V. This could be due to an inadequate

Discussion

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60

number of active users in the intervention group. As diabetes team members were blinded and

did not know which patients had access to the portal, they could not promote its use. To

increase the chance of revealing the effects of intervention, active users were compared with

less active users. The obligatory password probably discouraged access and reduced the

number of users 149. A more structured intervention programme could possibly increase the

use of the portal, enabling differences to be demonstrated.

A generally high level of quality of care was found in Study I. It has previously been found

that satisfaction and dissatisfaction can be expressed simultaneously, and patients can be

satisfied with one aspect or attribute of care but still express a number of criticisms or

reservations about it 157. It has been argued that patient dissatisfaction should be an actively

measured outcome of care 151. The QPP questionnaire addresses both the perceived reality and

the importance of an issue 48. This construction makes it possible to use the QPP

questionnaire to identify areas with which patients and parents are less satisfied. It addresses

both the perceived reality and the importance of an issue 48, and the results become interesting

when a discrepancy between perceived reality and importance is found. In Study I it was

possible to identify areas in need of improvement by using the QPP questionnaire.

Qualitative content analysis is a method of analysing text data, and it is used to infer meaning

from content. It has been defined as “the subjective interpretation of the context of text data

through the systematic classification process of coding and identifying themes or patterns” 142.

In Study IV, summative content analysis was used, beginning with the identification and

quantification of words or content in the text. This was followed by latent analysis to discover

the underlying meaning of the content. This provides insight into how words and language are

actually used. To improve credibility, written answers from respondents were reviewed by

two researchers and discussed until consensus was reached. Failure to grasp broader meanings

in the text may be a limitation of this method 142. The authors who carried out the analysis

were experienced in qualitative research and diabetes clinical care respectively, which also

improved credibility 158.

Discussion

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61

CONCLUSIONS

The quality of diabetes care for children and adolescents in Sweden is not sufficiently

good and needs to improve further if complications in later life are to be avoided.

Diabetes care teams must work continuously to improve quality.

Quality of care can only be properly assessed if the perceptions of children and

adolescents, and those of their parents, are taken into account. This information is

necessary to identify areas that need improvement and those groups that need extra

support. Psychosocial support for children and adolescents with diabetes should be

appropriate for age and gender.

The attitudes of diabetes team members and the message they give patients and parents

seem to influence metabolic control in children and adolescents. Team members need

to be more aware of how their attitudes affect patients and parents. A clear and

consistent message from a unified team appears to have beneficial effects on metabolic

control.

A web portal that includes comprehensive information about diabetes, and the

opportunity to communicate with other people with diabetes and with healthcare

professionals may be a useful complement to traditional patient education tools.

Members of the diabetes team should encourage its use.

Conclusions

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62

FUTURE PERSPECTIVES

Study IV examined the structure, process, policy, and message to patients and parents

as perceived by diabetes team members. The perceptions of patients and parents of the

same processes, policies and messages conveyed were also surveyed. These results

remain to be analysed. How do children and adolescents perceive the message? Do

patients perceive messages in the way the professional intended?

Further studies of the web portal are planned. The use of the message board and blog

will be analysed. The focus will be on active users. School nurses have their own

pages on the web portal. Results of a questionnaire about their perception of the

supportive role of the portal remain to be analysed.

Supportive interventions are needed in diabetes care, and their effects must be studied.

Patient education methods must be continuously developed, and interventions are

needed to improve knowledge and empowerment in children, adolescents, and parents.

Controlled interventions should be made for certain groups such as adolescent girls

and children and adolescents with poor metabolic control. Further research on

electronic communication for young people with long-term health problems would

also be of value.

Future perspectives

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63

ACKNOWLEDGEMENTS Many people have been important to this project. I would like to express my sincere gratitude to everyone who has contributed in some way to this work. I would especially like to thank: The children, adolescents and their parents who have participated in the studies and answered many, many questions. Members in the diabetes teams in Study IV. Thank you for your answers! My three really super supervisors - who introduced me into the scientific world, inspired and supported me throughout the whole project. They have always been there for me, to answer questions and discuss matters great and small. Johnny Ludvigsson, my main supervisor. Thank you for introducing me to the scientific world and for your inspiration, your passion for research and your dedication to the care for children and adolescents with diabetes. Your creative mind, your knowledge, and optimism are enormous! Sam Nordfeldt, my co-supervisor. Thank you for sharing your knowledge of research and of writing manuscripts. Thank you for your company and friendship during the long and winding road of the Diabit project. I hope it will continue! Your calm endurance was the rock on which the project was built. Ulf Samuelsson, my co-supervisor. Thank you for sharing your knowledge in research and of writing manuscripts. Despite a heavy clinical workload, you always gave me time, always being positive and willing to help – transforming big problems into small ones. Thank you for your pleasant company on the trips to Gothenburg! The ITHS /Diabit group: Toomas Timpka, Henrik Eriksson, Leni Eriksson, Gabriella Graspemo, Linda Hassling, Johan Hedbrant and Fredrik Malm of IDA, Linköping University (Johnny Ludvigsson and Sam Nordfeldt were also part of this group). Thank you for your collaboration on the Diabit project and for giving me a small insight into other corners of the academic world. Thor Balkhed, Bildam edia, Jörgen Isberg, Ke ylab, and Anders Larsson of IDA, Linköping University, who also contributed to the design, setup and maintenance of Diabit The members in the paediatric diabetes teams at Jönköping and Linköping. Thank you for your contributions to the work on Diabit and for your collaboration and commitment during the development of the site. Olle Eriksson and John Carstensen, statisticians. Thank you for your statistically significant help and advice. Bengt Lindblad, co-author. Thank you for your thorough and prompt review of manuscript.Your idea of tidiness is beneficial for SWEDIABKIDS! Carina Berterö, co-author. You shared your great knowledge in quantitative research with me and were always accessible in your typically pleasant way! Eva Isacson and Ann-Marie Sandström, diabetes nurses, colleagues and friends. Thank you for everything you have taught me and for the fun we have had together, on duty and off! You have supported me all the way. What a great pair of diabetes nurses!

Acknowledgement

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64

The members in the paediatric diabetes team at Linköping. Your collaboration and earnest discussions about diabetes care were truly inspiring! Anki Gilmore-Ellis, administrative assistant. Thank you for invaluable help, support and great service. My past bosses at the Children’s Hospital: Thank you all for the productive teamwork and friendship during the years we have worked together! Thank you for believing in me. Karin Fälth-Magnusson, head of the Children’s Hospital at the beginning of my research studies. Thank you for encouraging me to choose this path! Nina Nelson, head of the Children’s Hospital during the bulk of this project. You have supported and encouraged me. Your dedication to paediatric care is contagious! Lena Forsén, assistant head of the Children’s Hospital during the bulk of this project. You have supported and encourage me. Thank you for your empathy and warmth. Nina Timelin, head nurse of the Outpatient clinic. I am grateful to you for accepting my absences from the diabetes outpatient clinic. I do appreciate the positive attitude and encouragement you all have shown me along the way! Anneli Frostell, Jelmer Brüggeman, Katarina Swahnberg, Humlan Svensson, Rita Dahlqvist Johanna Davidsson, Maria Nygren, Barbro Wijma, Klaas Wijma and Sabina Brohede – my young research colleagues and friends. Thank you for the funny and varied discussions (yes even about research!) during coffee breaks. What would Hälsans Hus be without you!? Evalotte Mörelius, Felix Koch, Katarina Ekholm-Selling, Eva Elmerstig, Lotta Samelius, Anneli Jonsson – we miss you! My large family: Eva, Ulla, Barbro and Anna, my sisters. I am so glad that you kept reminding me that I have to finish this work and have a party afterwards! My mother Ingrid, and my late father Olle. You have supported me my whole life. My mother: Thank you for those wonderful dinners and for always having time and for being the hub for family news. I would like to grow “old” like you! The most important people in my life: My sons Gustav, Pelle and Adam.. I am so glad that you bring me back to real life to focus on the things that really matter – love, food and skiing! Håkan, my husband. My happiness comes from your love and support, and from all the fun we have together. What would life be without you? This work was supported financially by grants from Östergötland County Council, the Swedish Child Diabetes Foundation (Barndiabetesfonden), the Medical Research Council of Southeast Sweden (FORSS) and the Swedish Diabetes Association (Svenska Diabetesförbundets forskningsfond).

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