A self-management program for veterans and spouses living with Parkinson’s disease

Post on 29-Sep-2016

212 views 0 download

Transcript of A self-management program for veterans and spouses living with Parkinson’s disease

ORIGINAL ARTICLE doi: 10.1111/j.1752-9824.2011.01125.x

A self-management program for veterans and spouses living with

Parkinson’s disease

Naomi Nelson PhD, RN

Co-Associate Director of Education, Parkinson’s Disease Research, Education & Clinical Center, Michael E. DeBakey Veteran

Affairs Medical Center, Houston, Texas, USA

Dorothy Wong PhD

Committee Member, Parkinson’s Disease Research, Education and Clinical Center, Michael E. DeBakey Veteran Affairs

Medical Center, Houston, Texas, USA

Eugene Lai MD, PhD

Director, Parkinson’s Disease Research, Education and Clinical Center, Michael E. DeBakey Veteran Affairs Medical Center,

Houston, Texas, USA

Submitted for publication: 28 July 2010

Accepted for publication: 18 December 2010

Correspondence:

Naomi Nelson

PADRECC 127PD, Michael E. DeBakey

Veteran Affairs Medical Center,

2002 Holcombe Blvd.

Houston, TX 77030

USA

Telephone: +1 713 523-6375

E-mail: naominelson29@gmail.com

Source of research funding:

Parkinson’s Disease Research, Education,

and Clinical Center (PADRECC),

Department of Veteran Affairs, USA.

NELSON NNELSON N, WONG D & LAI E (2011)WONG D & LAI E (2011) Journal of Nursing and Healthcare of

Chronic Illness 3, 496–503

A self-management program for veterans and spouses living with Parkinson’s

disease

Aims and objectives. The objective of this study was to determine whether Veterans

and their spouses would participate in a self-management educational programme

where they would practise the principles of self-efficacy for managing their chronic

illnesses. The programme was designed using the Chronic Disease Self-Management

Program of Stanford University in Palo Alto, California.

Background. Whereas programmes for self-management of chronic conditions

(arthritis, AIDS, diabetes) have been established for some time, only a few specific

programmes for Parkinson’s disease had been cited in the literature at the time of this

study. In this report,wedescribeour initial attemptsat recruitment, administrationand

evaluationof thisprogrammeforasmallgroupofparticipantswith thespecific intentof

assessing its feasibility and appropriateness for Veterans seen in an outpatient setting.

Conclusions. Our study revealed that participants were willing to commit to an

intensive interventionalprogramme,andwithin thegroupsettingwereable toapply the

principles of self-efficacy with guidance from their peers and facilitator. The support of

the group was a strong motivator for continued participation and the practice of self-

management skills. However, the progression of Parkinson’s disease and the lack of

long-term follow-up prevented the identification of measurable significant changes.

Relevance toclinicalpractice. Patients livingwithchronic illnessappear tobenefit from

groupeducationalprogrammes, and this format couldbeadapted forothers livingwith

neurodegenerative illnesses and other chronic conditions.

Key words: Parkinson’s disease, patients, self-management, veterans

496 � 2011 Blackwell Publishing Ltd

Introduction

Chronic disease extracts substantial burden on patients, their

families and health care resources. Researchers in the fields of

health care economics (Agarwal 2005, Linnell 2005), health

care policies (Committee on Quality of Life in America 2001)

and health care education (Lorig et al. 2007) encourage an

active partnership between patients and health care profes-

sionals wherein the patient assumes more knowledge and

responsibility for care, and the professional assumes the role

of a teacher who supports the patient in developing skilled

practices of self-management. With Parkinson’s disease (PD),

even when the course of the disease is addressed with optimal

medical and surgical therapies, patients have progressive

disability and endure a difficult array of disease sequelae.

Although there is some disability that is an inescapably part

of the disease process, psychological and physical challenges

also exist that might be reduced with short-term appropriate

exercise interventions and/or lifestyle modifications (Hou &

Lai 2008). The management of lifestyle health habits,

medication administration, exercise regimens, stress manage-

ment and communication strategies may be particularly

challenging for patients who have PD (Nelson 2008). Chronic

Disease Self-Management workshops may provide the most

beneficial format for learning disease-specific self-manage-

ment skills (Sawyer 2007).

Background

The theoretical foundation of this self-management pro-

gramme is rooted in Bandura’s social cognitive theory

(Bandura 1986). The cornerstone of social cognitive theory

is self-efficacy (SE) or the belief that self-reflective thought

affects one’s behaviour. More simply stated, how one believes

essentially predicts the outcomes. Perceived SE is resilient and

can predict change in different areas that are essential to

managing chronic illness such as social and coping skills,

depression and health behaviours. Social modelling, or

learning from the behaviour and problem-solving of others,

is another important construct of this theory and an integral

component of the Chronic Disease Self-Management Pro-

gram (CDSMP) (Bandura 1997).

The CDSMP is a community-based intervention workshop,

developed by Dr. Kate Lorig at the Stanford Patient Educa-

tion Research Center (SPERC) in Palo Alto, California, USA,

and based on social-efficacy theory (Lorig et al. 1999a). In

Lorig’s structured programme, learning is facilitated in five

core areas – problem-solving, decision-making, resource

utilisation, patient–provider partnerships and action plans.

The formulation of action plans (something the participant

‘wants to do’) is the core strategy by which behavioural

changes are promoted (Lorig et al. 2001, Lorig 2003). After

the action plans are developed, a confidence level is estab-

lished by the participant which helps to determine the

likelihood that the action plan will be completed. In

subsequent weekly group sessions, the action plans are

reviewed, modified and discussed in the group with the

expectation that belief in one’s mastery of new skills will also

promote changes in the behaviour for other health habits.

(Lorig et al. 1999a, Lorig & Holman 2003). Training for this

programme involves a one-week didactic and experience-

based workshop session taught by Dr. Lorig and her

colleagues.

Programmes for self-management of chronic conditions

(arthritis, AIDS, diabetes) have been established for some

time (Lorig & Holman 1989, 1993, Lorig et al. 1998, 2007,

2009), but only a few programmes specifically for PD had

been reported in the literature at the time of this study (Fujii

et al. 1997, Lindskov et al. 2007, Montgomery et al. 1994)

none of which involved the Veteran population. In this

report, we describe our initial attempts at recruitment,

administration and evaluation of this programme for a small

group of participants with the specific intent of assessing its

feasibility and appropriateness for Veterans living with a

chronic illness.

Methods

Twenty participants, including 13 patients with PD and seven

of their spouses, were recruited for this study from the

Parkinson’s Disease Research, Education, and Clinical Center

(PADRECC) at the Michael E. DeBakey Veterans Affairs

Medical Center (MEDVAMC) in Houston, Texas, USA.

Eight potential participants declined to participate citing the

high cost of gasoline, distance from the VA, and difficulty to

commit to the programme for the whole duration.

Patients were included in the study if they had been

diagnosed with PD by a movement disorders specialist and

had mild to moderate disease as measured by the Hoehn &

Yahr Staging (H&Y) of 2Æ0–3Æ0 (Hoehn & Yahr 1967). At

baseline, we also measured the participants’ functional

capabilities by the Schwab and England Activities of Daily

Living Scale (S&E) that is considered a disability measure and

is influenced by comorbid conditions, the patient’s mental

state and the effect of medications (Schwab & England

1960). Screening criteria also included scores on the mini–

mental status examination (MMSE > 24) (Folstein et al.

1975) and a depression score <12 as measured by the

20-item Center for Epidemiologic Studies Depression Scale

(CES-D) (Radloff 1977). All 13 Veterans who were screened

Original article Self-management

� 2011 Blackwell Publishing Ltd 497

with these measures qualified to enroll in the study. Similarly,

all spouses met the criteria for enrolment admission, which

included the absence of dementia and depression and the

presence of at least one chronic medical condition.

The primary purpose of the workshop was to determine the

feasibility of recruitment, retention, appropriateness of mea-

sures and the usefulness of CDSMP for this group of Veterans

and their spouses. We conducted a pretest–post-test pilot

study entitled ‘Self-Management Training for Veterans with

PD and their Spouses’ that involved six weekly workshops

based on the Stanford University Chronic Disease Self-

Management Program. Testing was conducted at baseline,

six weeks later, and six months following the completion of

the intervention. The PD-specific measures were not admin-

istered to the spouses. Each session lasted 1½–2 hours and

was facilitated by two psychologists who were educated and

certified as Master Trainers in the CDSMP at Stanford

University. For almost twenty years, one of the co-facilitators

had lived with PD; this situation met the CDSMP require-

ment of at least one facilitator presently living with a chronic

illness (Lorig et al. 1999b).

The task of ‘taking action’ or developing a weekly action

plan (a contract) was one of the most important compo-

nents of the CDSMP. Each week, participants identified

what they wished to accomplish in the following week,

developed reasonable and behaviour-specific action steps

and monitored their confidence for successfully implement-

ing the plan.

Permission to conduct this research project was approved

by the Baylor College of Medicine Institutional Review Board

and the MEDVAMC Research and Development Committee.

Demographics

Participants completed questionnaires at baseline with the

following information being assessed: sex, age, education,

ethnicity, marital status and Veteran status.

Quality of life

The primary outcome measure for determining the Veteran’s

quality of life was an eight-item instrument – The Short Form

Parkinson’s Disease Questionnaire (PDQ-8). This is derived

from the original 39 items of the Parkinson Questionnaire

(PDQ-39), which was tested on 359 persons with PD

(Jenkinson et al. 1997). The content and construct validity

of the PDQ-39 and PDQ-8 scores have been well established,

and in the original studies, the mean PDQ-8 index score was

47Æ25 and the mean PDQ-39 index score was 44Æ7. A higher

score on both instruments indicates a less favourable quality

of life. We chose to use the PDQ-8 because of our preference

for an overall index and its high correlation and strong

statistical properties with the PDQ-39 and the Hoehn and

Yahr Scale (Jenkinson et al. 1997).

Self-efficacy

For the outcome measure of self-efficacy, we used the six-item

scale recommended by the Stanford Patient Education

Research Center (SPERC) that assesses confidence in manag-

ing disease in general (Lorig et al. 1996). The Likert response

scale is 0–10 with a higher score indicating greater self-

confidence in managing illness. This scale was developed

from several scales of self-efficacy and was originally tested

on 605 participants with chronic illness (mean score of 5Æ17

and internal consistency 0Æ91) (Lorig et al. 1996).

Depression

To measure depression, we chose the 20-item Center for

Epidemiologic Studies Depression Scale (CES-D). The CES-D

measures self-reported dimensions of depression experienced

in the past week with a higher score indicating more

depression (Radloff 1977). The CDSMP previously used the

20-item scale and tested it on 237 chronically ill individuals

with a mean score of 16Æ72 (Lorig et al. 2001, Radloff 1977).

The CES-D has been shown to be an appropriate instrument

for the older people as physical disability does not signifi-

cantly affect its validity (Lorig et al. 1996).

Fatigue and pain

We used the one-item SPERC visual numeric scales to

measure pain and fatigue, with a higher number indicating

more severity. These scales are modified versions of the visual

analogue scales, which are suggested as health approxima-

tions and preferences for health states (Lorig et al. 1996). The

degree of pain was originally tested on 237 persons with pain

(mean score 4Æ50), and fatigue was tested on 122 persons

with a mean score 4Æ89 (Lorig et al. 1996).

Exercise

The SPERC exercise behaviour scale is a six-item Likert

instrument that records the weekly amount of time spent on

stretching/strengthening and aerobic exercise (<30 minutes/

week to more than 3 hours/week). The SPERC tested this

instrument on 1130 participants with mean scores of 40Æ1 for

stretching and 90Æ6 minutes for aerobic exercise (Lorig et al.

1996).

N Nelson et al.

498 � 2011 Blackwell Publishing Ltd

Self-rated health status

We also measured the participants’ self-rated health by a five-

point scale ranging from 1 (excellent) to 5 (poor). This scale

was used in the National Health Interview Survey and tested

on 1129 participants with a mean score of 3Æ29 and test–

retest reliability of 0Æ92 (Lorig et al. 1996, 1999b). The lower

number indicates better health with the severity of illness

increasing with a higher number.

The Statistical Package for the Social Sciences (SPSSSPSS),

version 16, was used for analysis in this study (Field 2009).

Descriptive statistics were used to describe measures of

central tendency. Repeated measures for non-parametric data

were analysed using Friedman’s analysis of variance. All

participants served as their own controls. The investigators

generated a brief survey for the participants’ evaluation of the

programme.

Results

Thirteen male Veterans with PD and seven of their spouses

were enrolled and completed the screening instruments

(n = 20). One Veteran dropped out after the first session

stating that he became discouraged after observing a more

rapid progression of PD in a younger patient. The mean age

was 73Æ8 years (Veterans) and 73Æ4 years (spouses). Eighty-

five per cent (n = 17) were White-American, and 15% (n = 3)

were Hispanic-American. Eighty-five per cent had attended

some college. Twelve Veterans were married, and one was

widowed. One Veteran and two spouses were referred for

professional follow-up based on their self-reported depres-

sion scores. Patient and spouse characteristics are presented

in Table 1.

For the Veterans, the severity of their PD was considered

mild to moderate as measured by the Hoehn & Yahr Scale

(range of 2Æ0–3Æ5) and the Schwab and England Activities of

Daily Living Scale (range 70–90%) (Hoehn & Yahr 1967,

Schwab & England 1960). The spouses were a relatively

healthy group scoring 100% on the S&E. Both groups

obtained MMSE scores >24. The frequency of self-reported

comorbid conditions included heart disease, hypertension

and hypercholesteremia (n = 10), arthritis (n = 4), cancer in

remission (n = 1), pulmonary problems (n = 2) and other

(n = 2). Diabetes was not reported by any of the participants.

The participants’ health conditions are presented in Table 1.

Outcome measures for both Veterans and spouses are listed

in Table 2 for the three testing periods. Statistics for all

variables are based on measures without missing data. Only

the fatigue variable indicated significant changes – a wors-

ening of fatigue – over time (3Æ5, 4Æ5, 4Æ6; p = 0Æ05). The

comparison results for most variables (mean scores) were

non-significant with trends at six weeks for an improved

quality of life (30Æ97, 24Æ14, 27Æ70; p = ns), increased self-

efficacy (6Æ91, 7Æ57, 6Æ33; p = ns) and less pain (3Æ69, 2Æ93,

3Æ65; p = ns). However, at the six-month post-intervention,

these variables had not shown continued improvement.

Depression increased slightly over time, and at six months,

participants did report a slight increase in the amount of time

they exercised. Self-reported health status remained essen-

tially the same throughout the study.

We considered the evaluation comments from the partic-

ipants to be equally important for our project. For example,

more than 60% of the subjects were satisfied with the

workshop format, organisation, environment, skills and

learning. Fewer, <50%, were greatly or completely satisfied

with the topics of the workshop. Several open-ended

responses also indicated the desire of the patients for

additional learning through homework and specific discus-

sions about PD. Figure 1 and Table 3 describe these findings.

The data were also analysed separately for the participants

(correlations and repeated measures), but these results are not

Table 1 Demographics and illness characteristics of veterans and

spouses (n = 20)

Variables Veterans Spouses

Gender, n (%)

Men 13 (65)

Women 7 (35)

Age, mean (range) 73Æ8 years

(59–85)

73Æ4 years

(61–84)

Ethnic background, n (%)

Anglo-Am. 11 (85) 6 (86)

Hispanic-Am. 2 (15) 1 (14)

Education, n (%)

Some college 11 (85) 6 (86)

Married, n (%) 12 (92) 7 (100)

Parkinson’s disease, n (%) 13 (100) 0

Severity of Parkinson’s disease

Hoehn & Yahr Score

Mean (range)

2Æ5 (2Æ0–3Æ5)

NA

Cognitive status

Mini–mental status examination

Mean (range)

28Æ77 (25–30) 29Æ71 (29–30)

Activities of daily living

Schwab and England

Mean (range)

85 (70–90)

100

Other medical conditions, n

Arthritis 2 2

Cancer 1 0

Hypertension 1 2

Pulmonary problems 2 0

Coronary heart disease 1 1

Hypercholesterolemia 2 1

Other 0 2

Original article Self-management

� 2011 Blackwell Publishing Ltd 499

included owing to the small number of Veterans (n = 11) and

spouses (n = 4) who had completed each outcome measure in

its totality and the random nature of their non-responses.

Discussion

Our findings present evidence that a selected group of Veterans

with PD and their spouses were committed to an educational

programme that assisted them in learning healthy behaviours

in managing their chronic conditions. This type of study was

not intended to be a measurement study, and the possibility of

statistical errors exists with such a small, non-randomised

sample size. The numbers of the three sequential assessments

are presented so that some trends may be considered. For

example, the participants showed slightly more improvement

on the measures after six weeks than after six months –

especially for QOL, self-efficacy and pain. (See Table 2). These

three factors along with the fatigue variable worsened from

six weeks to six months. Although the amount of time spent on

exercise increased slightly from six weeks to six months, it

averaged less than 30 minutes a week for all three points in

time. These trends may suggest that the CDSMP group

workshop had a positive effect on the participants initially,

but that over time, the changes were less observable. Several

possible explanations for these findings are discussed below.

We chose to pattern our programme closely to the goals,

methods and assessment measures recommended by the

CDSMP, and this structure generally worked well in achieving

our initial recruitment objectives. As the workshop advanced

and we became more familiar with the course and our

participants, we recognised the needs for more content

flexibility regarding PD information and greater attention

to the physical and emotional impact of disease progression.

Consequently, with the identification and assessment of other

Table 2 Outcome measures for veterans and spouses

Variables Mean Pre-test Mean six-weeks Post-test Mean six-months Post-test

PDQ-8 (n = 11) (observed range = 2Æ5–56Æ25) 30Æ97 24Æ14 27Æ70*

Depression (n = 12) (observed range = 1–21) 8Æ17 8Æ58 9Æ58*

Self-efficacy (n = 12) (observed range) 6Æ91 7Æ57 6Æ33*

Pain (n = 10) (observed range = 1–10) 3Æ60 3Æ00 3Æ60*

Health Status (n = 15) (observed range = 1–4) 2Æ63 2Æ89 2Æ50*

Fatigue (n = 10) (observed range = 1–8) 3Æ50 4Æ50 4Æ60**

Exercise (n = 12) (observed range = 0–30 minutes/weeks) <30 minutes/weeks <30 minutes/weeks <30 minutes/weeks*

*p = ns, **p = 0Æ05.

Table 3 Selected evaluation comments

In the words of the participants…The pace was perfect.

I’d spell out more homework next time, i.e. assign pages of the

book to read.

The atmosphere was very professional, informative, and pleasant.

I would give it an A+.

Allow a block of time each session to discuss a specific area of

concern about Parkinson’s disease for both caregivers and

patients.

Many thanks for the opportunity. I’ll miss the group.

I hope our group meets together again in the future.

The exercise program was excellent – especially how to get up after

falling.

6 7 7 613

7 7

47

27 27 29

7

50

13

47

6066 64

80

43

87

0

10

20

30

40

50

60

70

80

90

100

Sa sfac onwith topic

Sa sfac onwith format

Sa sfac onwith

organisa on

Sa sfac onwith

environment

Sa sfac onwith facilitators'

skills

Sa sfac onwith learning

Recommendworkshop to

veteran

Perc

enta

ge

Degree of sa sfac on

Evalua on by par cipants, n = 15

Slightly Moderately Greatly Completely

Figure 1 Chronic Disease Self-Management

Program evaluation by participants.

N Nelson et al.

500 � 2011 Blackwell Publishing Ltd

outcomes, specific health changes over time may have been

more observable. For example, a pre- and postassessment of

the impact of the Veterans’ comorbidities, feelings of control

and connectedness, the degree of disease distress, baseline

knowledge about PD and personal expectations for the

course may have strengthened our study and provided

additional outcomes that may have mediated the results.

Studies cited below present evidence that a traditional self-

management programme may benefit from consideration and

inclusion of these factors and others.

In addressing the complexity of chronic illness and the

impact of multimorbidities on self-management among the

older people, Bayliss et al. (2007) identified several significant

deterrents to self-management and quality of life outcomes.

These barriers included the overwhelming nature of multi-

morbidities, reduced social activity, greater financial difficul-

ties and the resulting impact on depressive symptoms and

disease burden.

Additionally, several provocative research studies discuss

the limitations of self-management and other patient educa-

tion programmes (Wagner et al. 1999, Weingarten et al.

2002, Elzen et al. 2007, Nolte et al. 2007, Osborne et al.

2007, Barlow et al. 2009). One study suggests using more

sensitive and operational measurements and introduces the

Health Education Impact Questionnaire (heiQ) as one

instrument designed to measure the outcomes of health

education courses (Osborne et al. 2007). Other researchers

suggest the use of more than one intervention (Weingarten

et al. 2002) and more flexibility (Jordan & Osborne 2007) in

the patient education courses. Additional outcome consider-

ations include the measurement of psychological support and

well-being, perceptions of control, social isolation and health

knowledge (Barlow et al. 2000, 2009).

Significant changes in the health behaviours and QOL of

patients with PD and spouses may be less observable over a

six-month period of time when compared with patients living

with other more stable chronic conditions. As PD is a

fluctuating, degenerative condition, assessment measures may

reflect the experience of worsening symptoms on the days of

testing that could influence the results. For example, if the

six-month assessments occurred during a physical decline in

health, the scores on the outcome measures may reflect the

abrupt, unpredictable nature of change in PD more than the

effects of the educational programme. A remark by one of

the facilitators who has lived with PD for over twenty years

best explains this trajectory: ‘Acceptance of the disease is very

important. With each unpredictable gradual and abrupt

decline, you are learning to live with a different disease.

Precipitous drops in functioning resulting in increased

dependency and loss are not uncommon.’

The participants expressed strong support and enthusiasm

for the group cohesiveness that formed during the workshop

and that eagerness continued throughout the duration of the

programme. In the workshop, participants effectively used

self-management principles, but on their own and with less

direction, their eagerness to learn and to monitor health

behaviours became more difficult. We believe that the

CDSMP educational programme may have been strengthened

by a longer duration of the workshop subsequently followed

by strategic scheduling of telephone calls or clinic visits. Pre-

and poststudy interviews with the participants would also

have provided an opportunity for them to compare their

preworkshop expectations with their completed goals. Sub-

sequent longer-term follow-up was difficult because four

Veterans in the group died within two years after completion

and one subject moved out of state.

The fact that the attrition rate for completion of the study

was low and that the participants wanted the course to be

continued enhances the appropriateness of this self-manage-

ment educational programme that provides group support

and cohesiveness. By enrolling spouses in this programme,

many of the Veterans were encouraged to attend each session

and received additional support for their goal attainment

outside of the group workshop. It is perhaps not surprising

that the results from some of the variables (quality of life,

depression and pain) showed an improvement after the six-

week course only to drop again after six months. This lends

support to the belief that the group goal-setting and

accountability had an influence on participants’ perceptions

of their chronic conditions.

Conclusion

In conclusion, the study demonstrated the ability to actively

recruit and retain Veterans and their spouses who were

committed to a research-based educational programme that

involved a considerable time commitment. Participants were

genuinely pleased with the CDSMP as evidenced by their

subjective evaluation (See Fig. 1 and Table 3). Even though

their comments differed substantially from the test scores, the

core format and organisation of the CDSMP were valued by

the participants. Almost 90% of the evaluation respondents

were greatly satisfied with what they had learnt, and 96%

would recommend the workshop to another Veteran.

We learnt from this study that the use of self-efficacy as

a construct in formulating self-management skills is

worthwhile in learning to live with chronic illness (Marks

et al. 2005). We also learnt that the progression of neurode-

generative diseases is different from the trajectory of many

other chronic illnesses such as diabetes and arthritis and that

Original article Self-management

� 2011 Blackwell Publishing Ltd 501

the measurements of change may need to be adapted for

greater sensitivity of individual decline. Although the self-

reported measures of our study indicated little change, we

cannot assume that true changes in health behaviours did not

occur. For example, because the quantitative measures did

not detect noticeable change, qualitative methods may have

added another dimension in assessing adjustment, self-

efficacy, problem-solving and goal-setting and other health

behaviours. Additionally, these older, less active Veterans

were experiencing a relatively stable course of their illness

and that obvious and immediate changes in managing their

health were difficult to quantify. To improve the efficacy of

future studies for Veterans with PD, we also recommend a

larger randomised sample of participants, a control group

and more robust measurements for self-management.

Relevance to clinical practice

This pilot study supports the belief that the degenerative

aspect of PD makes the education and management of this

disease somewhat different from dealing with a more stable

chronic illness.

Living with chronic illness is complex, and the use of self-

management skills, when learnt through CDSMP, has been

shown to be efficacious (Marks et al. 2005). However, the

CDSMP programme alone may not be sufficient for those living

with the degenerative nature of PD. Future studies that focus on

PD and other progressive neurological conditions such as

multiple sclerosis may call for a more flexible, adapted version

of the CDSMP. A specific PD educational programme could

conceivably incorporate CDSMP skills training plus funda-

mental knowledge about all stages of the disease process

incorporating medical treatment (Hou & Lai 2008), speech

and rehabilitation therapies (Fox et al. 2008, Trail 2006), the

implications of activation for goal-setting (Hibbard et al.

2007) and practical application of psychological tools that

assist in the emotional adaptation to the illness (Suzukamo

et al. 2006). More opportunities for observing reactions to

physical changes and ways of coping with disease-related stress

could be integrated into the group format without difficulty.

Contribution

Study design: NN, DW, EL; data analysis: NN, DW, EL and

manuscript preparation: NN, DW, EL.

References

Agarwal M (November, 2005) Meeting the Challenges of Veterans

with Chronic Illnesses. Forum: U.S. Health Services Research &

Development Service, VA Office of Research & Development

Service, U.S. Government, Washington, DC, pp. 1–3.

Bandura A (1986) Social Foundations of Thought and Action: A

Social Cognitive Theory. Prentice-Hall Inc., Englewood Cliffs, NJ.

Bandura A (1997) Self-Efficacy: The Exercise of Control. W. H.

Freeman, New York, NY.

Barlow JH, Turner AP & Wright CC (2000) A randomized con-

trolled study of the Arthritis Self-Management Programme in the

UK. Health Education Research 15, 665–680.

Barlow J, Turner A, Swaby L, Gilchrist M, Wright C & Doherty M

(2009) An 8-yr follow-up of Arthritis Self-Management Program

participants. Rheumatology 48, 128–133.

Bayliss E, Ellis J & Steiner JF (2007) Barriers to self-management and

quality-of-life outcomes in seniors with multimorbidities. Annals

of Family Medicine 5, 395–402.

Committee on Quality of Life in America (2001) Crossing the

Quality Chasm A New Health Care System for 21st Century,

Institute of Medicine, National Academic Press, Washington, DC,

pp. 1–8.

Elzen H, Slaets JPJ, Snijders TAB & Steverink N (2007) Evaluation of

the chronic disease self-management program (CDSMP) among

chronically ill older people in the Netherlands. Social Science &

Medicine 64, 1832–1841.

Field A (2009) Discovering Statistics Using SPSS, 3rd edn. Sage

Publishing, Los Angeles.

Folstein MF, Folstein SE & McHugh PR (1975) Mini-mental state: a

practical method for grading the cognitive state of patients for the

clinician. Journal of Psychiatric Research 12, 189–198.

Fox C, Ramig L, Sapi S, Halpern A, Cable J, Mahler LA & Farley B

(2008) Voice and speech disorders in Parkinson’s disease and their

treatment. In Neurorehabilitation in Parkinson’s Disease: An

Evidence-Based Treatment Model (Trail M, Protas EJ & Lai EC

eds). Slack Inc., Thorofare, NJ, pp. 248–252.

Fujii C, Aoshima T, Sato S, Mori N, Ohkoshi N & Oda S (1997) Self-

efficacy and related factors in Parkinson’s disease patients. Nippon

Koshu Eisei Zasshi 44, 817–826.

Hibbard JH, Mahoney ER, Stock R & Tusler M (2007) Self-

management and health care utilization: do increases in patient

activation result in improved self-management behaviors? Health

Services Research 42, 1443–1463.

Hoehn MM & Yahr MD (1967) Parkinsonism: onset, progression

and mortality. Neurology 17, 427–442.

Hou JG & Lai EC (2008) Overview of Parkinson’s disease: clinical

features, diagnosis, and management. In Neurorehabilitation in

Parkinson’s Disease: An Evidence-Based Treatment Model (Trail

M, Protas EJ & Lai EC eds). Slack Inc., Thorofare, NJ, pp. 2–24.

Jenkinson C, Fitzpatrick R, Peto V, Greenhall R & Hyman N (1997)

The Parkinson’s disease questionnaire (PDQ-39): development and

validation of a Parkinson’s disease summary index score. Age and

Ageing 26, 353–357.

Jordan JE & Osborne RH (2007) Chronic disease self-management

education programs: challenges ahead. The Medical Journal of

Australia 186, 84–87.

Lindskov S, Westergren A & Hagell P (2007) A controlled trial of an

educational programme for people with Parkinson’s disease.

Journal of Clinical Nursing 16, 368–376.

Linnell K (2005) Chronic disease self-management: one successful

program. Nursing Economics 23, 189–198.

N Nelson et al.

502 � 2011 Blackwell Publishing Ltd

Lorig K (2003) Self management education: More than a nice extra

Medical Care 41, 699–701.

Lorig K & Holman H (1989) Long-term outcomes of an arthritis self-

management study: effects of reinforcement efforts. Social Science

Medicine 29, 221–224.

Lorig K & Holman H (1993) Arthritis self-management studies: a

twelve-year review. Health Education Quarterly 20, 17–28.

Lorig KR & Holman H (2003) Self-management education: history,

definition, outcomes, and mechanisms. Annals of Behavioral

Medicine 26, 1–7.

Lorig K, Stewart A, Ritter P & Gonzalez VM (1996) Outcome

Measures for Health Education and Other Health Care Interven-

tions. Sage Publishing, Thousand Oaks, CA, pp. 10–33.

Lorig K, Gonzalez VM, Laurent DD, Morgan L & Laris BA (1998)

Arthritis self management program variations: three studies.

Arthritis Care Research 11, 448–454.

Lorig K, Gonzalez VM & Laurent D (1999a) The Chronic Disease

Self-management Workshop Leader’s Manual. The Board of

Trustees: Leland Stanford Junior University, Palo Alto, CA.

Lorig KR, Sobel DS, Stewart A & Brown B (1999b) Evidence

suggesting that a chronic disease self-management program can

improve health status while reducing hospitalization: a randomized

trial. Medical Care 37, 5–14.

Lorig KR, Sobel DS, Ritter PL, Laurent D & Hobbs M (2001) Effect

of a self-management program on patients with chronic disease.

Effective Clinical Practice 4, 256–262.

Lorig K, Holman H, Sobel D, Laurent D, Gonzalez V & Minor M

(2007) Living a Healthy Life with Chronic Conditions: Self-

Management of Heart Disease, Arthritis, Diabetes, Asthma,

Bronchitis, Emphysema, and Others, 3rd edn. Bull Publishing,

Boulder, CO.

Lorig K, Ritter P, Villa F & Armas J (2009) Community-based peer-

led diabetes self management: a randomized trial. The Diabetes

Educator 35, 641–651.

Marks R, Allegrante JP & Lorig K (2005) A Review and synthesis of

research evidence for self-efficacy enhancing interventions for

reducing chronic disability: implications for health education

practice (Part I). Health Promotion Practice 6, 37–43.

Montgomery EB Jr, Lieberman A, Singh G & Fries JF (1994) Patient

education and health promotion can be effective in Parkinson’s

disease: a randomized controlled trial. American Journal of Med-

icine 97, 429–435.

Nelson ND (2008) Psychosocial issues in Parkinson’s disease. In

Neurorehabilitation in Parkinson’s Disease: An Evidence-Based

Treatment Model (Trail M, Protas EJ & Lai EC eds). Slack Inc.,

Thorofare, NJ, pp. 2–24.

Nolte S, Elsworth GR, Sinclair AJ & Osborne RH (2007) The extent

and breadth of benefits from participating in chronic disease self-

management courses: a national patient-reported outcomes survey.

Patient Education and Counseling 65, 351–360.

Osborne RH, Elsworth GR & Whitfield K (2007) The health edu-

cation impact questionnaire (heiQ): an outcomes and evaluation

measure for patient education and self-management interventions

for people with chronic conditions. Patient Education and Coun-

seling 66, 192–201.

Radloff LS (1977) The CES-D Scale: a self-report depression scale for

research in the general population. Applied Psychological Mea-

surement 1, 385–401.

Sawyer A (2007) Theoretical approaches to the clinical care of Par-

kinson’s disease. In Comprehensive Nursing Care for Parkinson’s

Disease (Bunting-Perry L ed). Springer, New York, pp. 43–47.

Schwab R & England A (1960) Progression and prognosis in Par-

kinson’s disease. Journal of Nervous and Mental Diseases 130,

556–566.

Suzukamo Y, Ohbu S, Kondo T, Kohmoto J & Fukuhara S (2006)

Psychological adjustment has a greater effect on health-related

quality of life than on severity of disease in Parkinson’s disease.

Movement Disorders 21, 761–766.

Trail M (2006) An occupational model of treatment for Parkinson’s

disease. In Neurorehabilitation in Parkinson’s disease: An Evi-

dence-Based Treatment Model (Trail M, Protas EJ & Lai EC eds).

Slack Inc., Thorofare, NJ, pp. 208–220.

Wagner E, Davis C, Schaefer J, Von Korff M & Austin B (1999) A

survey of leading chronic disease management programs: are they

consistent with the literature? Managed Care Quarterly 7, 56–66.

Weingarten SR, Henning JM, Badamgarav E, Knight K, Hasselblad

V, Gano A & Ofman JJ (2002) Interventions used in disease

management programmes for patients with chronic illness-which

ones work? Meta-analysis of published reports. British Medical

Journal 325, 925–928.

Original article Self-management

� 2011 Blackwell Publishing Ltd 503