The Pediatric INTERMED: A New Clinical-Decision Making Tool

for Operationalizing Biopsychosocial Case Complexity

in Children and Youth with Chronic Physical Conditions

Janice S. Cohen, Ph.D., C. Psych.Janice S. Cohen, Ph.D., C. Psych.David Mack, MD,.FAAP, FRCPC David Mack, MD,.FAAP, FRCPC

John Lyons, Ph.DJohn Lyons, Ph.DChildren’s Hospital of Eastern OntarioChildren’s Hospital of Eastern Ontario

University of OttawaUniversity of Ottawa

CollaboratorsCollaborators Frits Huyse, MD, Ph.D. University Hospital Frits Huyse, MD, Ph.D. University Hospital

GronigenGronigen Lise Bisnaire, Ph.D., C. Psych.Lise Bisnaire, Ph.D., C. Psych. Derek Puddester, MD, FRCPC.Derek Puddester, MD, FRCPC. Mario Cappeli, Ph.D., C. Psych.Mario Cappeli, Ph.D., C. Psych. Lynn Grandmaison-Dumond, Lynn Grandmaison-Dumond, RN (EC), BScN, RN (EC), BScN,

MScNMScN Roger Kathol, Cartesian SolutionsRoger Kathol, Cartesian Solutions Joe Reisman, Joe Reisman, MD, FRCP(C), MBAMD, FRCP(C), MBA

Also like to acknowledge support of Also like to acknowledge support of the members of our research team:the members of our research team: Lisa Smith, BscN.Lisa Smith, BscN. Brian GrantBrian Grant Shamira PiraShamira Pira Hardie Rath-WilsonHardie Rath-Wilson

FundingFunding

CHEO Research InstituteCHEO Research Institute 3-C Foundation of Canada3-C Foundation of Canada CHEO Psychiatry AssociatesCHEO Psychiatry Associates Provincial Centre of Excellence for Provincial Centre of Excellence for

Child and Youth Mental Health at the Child and Youth Mental Health at the Children’s Hospital of Eastern OntarioChildren’s Hospital of Eastern Ontario

CHEO Department of GastroenterologyCHEO Department of Gastroenterology AHSC AFP Innovation Fund, Children’s AHSC AFP Innovation Fund, Children’s

Hospital of Eastern Ontario Hospital of Eastern Ontario

Origins of Project Origins of Project Behavioural Neurosicences and Consultation Behavioural Neurosicences and Consultation

Liason Team (BNCL) at CHEO provides mental Liason Team (BNCL) at CHEO provides mental health services to children/youth with complex health services to children/youth with complex medical issuesmedical issues

Embarking on ongoing program evaluation Embarking on ongoing program evaluation activitiesactivities Wondered which children/youth were being referred Wondered which children/youth were being referred

to our team ?to our team ? How referring health professionals were screening How referring health professionals were screening

for mental health problems and psychosocial/issues for mental health problems and psychosocial/issues in children/youth?in children/youth?

Committed to providing collaborative integrated Committed to providing collaborative integrated care, that captured the complex interplay care, that captured the complex interplay between physical and mental healthbetween physical and mental health

Interplay between Interplay between Physical and Mental Physical and Mental

HealthHealth Chronic illness affects 10-20% of Chronic illness affects 10-20% of

children/youthchildren/youth Children/youth living with a chronic Children/youth living with a chronic

illness at heightened risk for the illness at heightened risk for the development of mental health development of mental health problems (Cadman, Boyle & Offord, problems (Cadman, Boyle & Offord, 1988; Bilfied, S., Wildman, et al., 1988; Bilfied, S., Wildman, et al., 2006))2006))

Also impacts on family systemAlso impacts on family system Uncertainty about child’s health Uncertainty about child’s health

outcomes, daily hassles related to outcomes, daily hassles related to ensuring compliance with management ensuring compliance with management regimes, social, role and financial regimes, social, role and financial strains, challenges of navigating complex strains, challenges of navigating complex system of care (Drotar , 2000)system of care (Drotar , 2000)

Failure to address psychosocial Failure to address psychosocial issues increases risk of poor issues increases risk of poor treatment adherence, increased treatment adherence, increased health care utilization, psychiatric co-health care utilization, psychiatric co-morbiditymorbidity

Issues in the Assessment Issues in the Assessment and Identification of and Identification of Psychosocial NeedsPsychosocial Needs

Mental health needs of children with chronic illness Mental health needs of children with chronic illness often under detected and underserved, both in often under detected and underserved, both in primary and tertiary care settingsprimary and tertiary care settings

ReasonsReasons Mental health and medical services are often Mental health and medical services are often

distinct entitiesdistinct entities Mental health services available on consultation only basisMental health services available on consultation only basis Often triggered by a crisisOften triggered by a crisis

Onus for identifying children who require services Onus for identifying children who require services rests with medical specialist or primary care rests with medical specialist or primary care physicianphysician Variability in extent to which physicians address Variability in extent to which physicians address

psychosocial issuespsychosocial issues

Recent study examined barriers to the Recent study examined barriers to the identification of psychosocial factors in identification of psychosocial factors in patient care (Astin, Soeken et al., 2006)patient care (Astin, Soeken et al., 2006) Low self-efficacy to address psychosocial Low self-efficacy to address psychosocial

issuesissues Perception that psychosocial factors are Perception that psychosocial factors are

difficult to control or impactdifficult to control or impact Lack of knowledge of the evidence base Lack of knowledge of the evidence base

supporting the use of mind-body methodssupporting the use of mind-body methods Lack of time to adequately address such Lack of time to adequately address such

issuesissues

Pilot Program Evaluation Pilot Program Evaluation Project Project

Conducted by Kara Olineck, Psychology Conducted by Kara Olineck, Psychology Resident Resident

Focus group at CHEO, GI ServiceFocus group at CHEO, GI Service Health professionals indicated that they know Health professionals indicated that they know

patients well, sensitive to psychosocial issues, patients well, sensitive to psychosocial issues, but have no systemic way of addressing but have no systemic way of addressing approach to assessing theseapproach to assessing these

Referrals often generated by crisisReferrals often generated by crisis Not all patients requiring mental health Not all patients requiring mental health

services have been identified and/or referred services have been identified and/or referred for these servicesfor these services

Objectives of the Current Objectives of the Current Research Program Research Program

Develop a reliable and valid clinical decision-Develop a reliable and valid clinical decision-support tool to assist health care professionals in support tool to assist health care professionals in screening for case complexity and patient/family screening for case complexity and patient/family needs to facilitate shared communication, care needs to facilitate shared communication, care planning and referral to appropriate mental health planning and referral to appropriate mental health services or other resources.services or other resources.

Case Complexity: Case Complexity: Defined as the presence of Defined as the presence of coexisting conditions (biologic, psychologic, social coexisting conditions (biologic, psychologic, social or related to the health care system) that interfere or related to the health care system) that interfere with standard care and require a shift from with standard care and require a shift from standard care to individualized care (Huyse, Stiefel, standard care to individualized care (Huyse, Stiefel, de Jonge, 2006).de Jonge, 2006).

Care Complexity: cases require an integrated care plan:

The INTERMED The INTERMED Approach Approach

Tool developed to assess health care risks and related Tool developed to assess health care risks and related health needs in adult population (Huyse, Lyons et al., health needs in adult population (Huyse, Lyons et al., 1999). 1999).

Operationalizes three domains germaine to the Operationalizes three domains germaine to the biopsychosocial model of illness: biopsychosocial model of illness: the biologicalthe biological the psychological, the psychological, socialsocial patients/families interactions with the health care systempatients/families interactions with the health care system

Life-span perspective within each domain: Life-span perspective within each domain: history/past functioning: comprehensive background history/past functioning: comprehensive background

assessmentassessment current status that drives treatment plancurrent status that drives treatment plan anticipated future prognosis and challengesanticipated future prognosis and challenges

Information obtained from semi-Information obtained from semi-structured interview, review of structured interview, review of available chart information, and available chart information, and input from members of the health input from members of the health care teamcare team

INTERMED Domains and INTERMED Domains and VariablesVariables

Communimetric Communimetric Measurement ApproachMeasurement Approach

Clinically relevantClinically relevant Facilitate decision-making Facilitate decision-making Items anchored in operationally Items anchored in operationally

created definitions that translate created definitions that translate directly into action levelsdirectly into action levels

Score Labels for Score Labels for INTERMEDINTERMED

____________________________________________________________________________________________________________________________________________________________________ Numerical VisualNumerical Visual ScoreScore Action Action

____________________________________________________________________________________________________________________________________________________________________

   33 Red Red Severe vulnerability or care needs Severe vulnerability or care needs Immediate and/or Immediate and/or

intensive treatmentintensive treatment 22 Orange Moderate vulnerability or care needs Treatment Orange Moderate vulnerability or care needs Treatment 11 Yellow Mild vulnerability or care needs Monitoring or preventive Yellow Mild vulnerability or care needs Monitoring or preventive

interventionintervention 00 Green No vulnerability or care need Green No vulnerability or care needs s No action needed No action needed

Easy and accurate communication of Easy and accurate communication of relevant resultsrelevant results

Item level reliability and inter-rater Item level reliability and inter-rater reliability criticalreliability critical

Adaptable to the organization Adaptable to the organization process, easily integrated into service process, easily integrated into service deliverydelivery

Item design based on philosophy of Item design based on philosophy of “just enough information”“just enough information”

Research with the Research with the INTERMEDINTERMED

Used in a variety of health care contexts with varied Used in a variety of health care contexts with varied populationspopulations

High inter-rater reliability (approx. Kappa of .85)High inter-rater reliability (approx. Kappa of .85) Good test-retest reliability over a one-year periodGood test-retest reliability over a one-year period Overall index of case complexity associated with Overall index of case complexity associated with

varied health indicators (validity)varied health indicators (validity)e.g., length of stay, number of specialists involved, poorer e.g., length of stay, number of specialists involved, poorer quality of life at discharge, biological indicators of care quality of life at discharge, biological indicators of care (e.g., HbA1c values in a diabetic population)(e.g., HbA1c values in a diabetic population)

Recent randomized control trial to examine whether Recent randomized control trial to examine whether implementation of the INTERMED was associated implementation of the INTERMED was associated with improved health care outcomes. Benefits found with improved health care outcomes. Benefits found with regard to quality of life, treatment response with regard to quality of life, treatment response and cost-effectiveness.and cost-effectiveness.

Current ProjectCurrent Project

Develop a paediatric version of the Develop a paediatric version of the PEDIATRIC INTERMED (PIM) PEDIATRIC INTERMED (PIM)

Phase 1: Phase 1: Adaptation of the INTERMED for use with Adaptation of the INTERMED for use with

children/youth with chronic physical condition, children/youth with chronic physical condition, considering the unique developmental, social and considering the unique developmental, social and psychological contexts of children and youth -(family, psychological contexts of children and youth -(family, school, peers)school, peers)

Phase II: Phase II: Implementation of the measure within a chronic illness Implementation of the measure within a chronic illness

population – Children/Youth with Inflammatory Bowel population – Children/Youth with Inflammatory Bowel Disease (IBD)Disease (IBD)

Examine measures inter-rater reliability, internal Examine measures inter-rater reliability, internal consistency, validity of PIM consistency, validity of PIM

Phase I:Phase I:Item Generation and Item Generation and

RefinementRefinement Items determined based on clinical acumen Items determined based on clinical acumen and empirical evidenceand empirical evidence

Reviewed literature on psychosocial correlates Reviewed literature on psychosocial correlates of paediatric chronic illness and biological, of paediatric chronic illness and biological, psychological and social factors associated psychological and social factors associated with treatment responseswith treatment responses

Identified relevant indicator items for each Identified relevant indicator items for each domain domain

Delphi group consisting of a pool of Delphi group consisting of a pool of international experts, representing various international experts, representing various disciplines (paediatrics, psychiatry, disciplines (paediatrics, psychiatry, psychology, nursing) reviewed items for psychology, nursing) reviewed items for clinical relevance and utilityclinical relevance and utility

Pilot study examined inter-rater reliabilityPilot study examined inter-rater reliability Three assessors trained in the tool Three assessors trained in the tool 20 case vignettes developed from case records20 case vignettes developed from case records

(10 vignettes drawn from GI service- ½ with IBD, 10 (10 vignettes drawn from GI service- ½ with IBD, 10 vignettes children referred to neurology service for vignettes children referred to neurology service for investigation of headaches)investigation of headaches)

Each assessor assessed 10 case children, allowing Each assessor assessed 10 case children, allowing an overlap of 10 for each pair of assessorsan overlap of 10 for each pair of assessors

Initial inter-rater reliabilities were generally Initial inter-rater reliabilities were generally acceptable. Based on results further acceptable. Based on results further modifications to items were made. modifications to items were made.

..

Pediatric Intermed (PIM)Pediatric Intermed (PIM) Final version of PIM consists of 34 items Final version of PIM consists of 34 items

organized into 5 domainsorganized into 5 domains BiologicalBiological: chronicity, diagnostic : chronicity, diagnostic

dilemma/challenge, therapeutic complexitydilemma/challenge, therapeutic complexity PsychologicalPsychological: Mental Health difficulties, : Mental Health difficulties,

resilience, coping, treatment resistance, resilience, coping, treatment resistance, cognitive/developmental level, adverse cognitive/developmental level, adverse developmental events (including trauma)developmental events (including trauma)

SocialSocial: School and social/peer functioning, : School and social/peer functioning, community participation and supportscommunity participation and supports

Caregiver/FamilyCaregiver/Family: Family : Family relationships, parental Health and relationships, parental Health and Function, Family Stress, Parenting Function, Family Stress, Parenting Skills, Caregiver/Family Support, Skills, Caregiver/Family Support, Residential StabilityResidential Stability

Health Care SystemHealth Care System: Access to : Access to Health Care, Treatment experiences, Health Care, Treatment experiences, organization and coordination of care, organization and coordination of care, transition issuestransition issues

Domain Developmental/Historical Antecedents

Current State Anticipated Needs

Total Score = Consideration Scor

eConsiderati

onScore

Consideration

Score

Biological

Chronicity (HB1)

Symptom Severity (CB1)

Complications and Life

Threat (VB1)

Diagnostic Challenge

(CB2)

Diagnostic Dilemma (HB2)

Therapeutic Complexity

(CB3)

Psychological

Barriers to Coping (HP1)

Resistance to

Treatment (CP1)

Mental Health/

Cognitive Threat (VP1)

Resiliency (HP2)

Mental Health (HP3)

Mental Health

Symptoms (CP2)

Cognitive/Intellectual

Development (HP4)

Cognitive Functional Impairment

(CP3)Adverse Developmental Events (HP5)

Social

School Functioning

(HS1)

Child/Youth Supports

(CS1)

Social System Vulnerability

(VS1)

School Attendance

(CS2)

Social Functioning

(HS2)

Educational Needs(CS3)

Community Participation

(CS4)

Caregiver/Family System

Family Relationships

(HF1)

Residential Stability (CF1)

Family/Caregiver System

Vulnerability (VF1)

Caregiver/Family

Support (CF2)

Caregiver (Parent) Health

& Function (HF2)

Family Stress (CF3)

Parenting Skills (CF4)

Health System

Access to Health Care

(HHS1)

Organization of Care (CHS1) Health System

Impediments (VHS1)Treatment

Experience (HHS2)

Coordination of Care (CHS2)

CB2

Diagnostic Challenge: Patients may not have physical symptoms that result in diagnostic questions. However, it might be that the physical complaints are related to complex physical disorder (rare or systemic disease) that requires extensive diagnostic evaluation or to a psychiatric disorder and/or psychososcial stressors.

? Unknown

0 Uncomplicated diagnosis.

1 Clear differential diagnoses and/or diagnosis expected.

2 Difficult to diagnose but physical cause/origin expected.

3 Difficult to diagnose with interfering factors other than physical cause/origin.

Symptom SeveritySymptom Severity:: This item describes severity or acuity of This item describes severity or acuity of physical symptoms related to the reason for current illness physical symptoms related to the reason for current illness presentation. In case of an acute illness most often these presentation. In case of an acute illness most often these symptoms will disappear or diminish, while in an existing symptoms will disappear or diminish, while in an existing chronic disease these symptoms might disappear, remain chronic disease these symptoms might disappear, remain or increase.or increase.

?? UnknownUnknown

00 No physical symptoms or symptoms resolve with No physical symptoms or symptoms resolve with treatment.treatment.

11 Mild symptoms, which do not interfere with current Mild symptoms, which do not interfere with current functioning. functioning.

22 Moderate symptoms, which interfere with current Moderate symptoms, which interfere with current functioning.functioning.

33 Severe symptoms leading to inability to perform most Severe symptoms leading to inability to perform most functional activities.functional activities.

CP1

Resistance to Treatment: This item evaluates child/youth’s and parents’ (caregivers) capacity to comply with treatment recommendations, including drugs, health behavior and life-style.

? Unknown

0 Parents (caregivers) and/or child/youth are interested in receiving treatment and cooperate actively

1 Some parent and/or child/youth ambivalence, though willing to cooperate with the treatment

2 Considerable parent and/or child/youth resistance with non-adherence, hostility or indifference towards health care professionals and/or treatments

3 Active parent and/or child/youth resistance to important medical care.

Parenting SkillsParenting Skills

0- Parents/caregiver have good monitoring and discipline 0- Parents/caregiver have good monitoring and discipline skills, and have no difficulty supervisring child/youth’s skills, and have no difficulty supervisring child/youth’s medical caremedical care

1- Parents/caregivers provide generally adequate 1- Parents/caregivers provide generally adequate monitoring/discipline, but they may occasionally monitoring/discipline, but they may occasionally encounter difficulty supervising child/youth’s medical careencounter difficulty supervising child/youth’s medical care

2- Parents/caregivers reportdifficulties monitoring and/or 2- Parents/caregivers reportdifficulties monitoring and/or disciplining the child/youth, and have problems disciplining the child/youth, and have problems supervising child/youth’s medical care.supervising child/youth’s medical care.

3- Parents/caregivers are unable to discipline and monitor 3- Parents/caregivers are unable to discipline and monitor the child/youth and the child/youth is at medical risk due the child/youth and the child/youth is at medical risk due to the absence of supervision of his/her medical care.to the absence of supervision of his/her medical care.

HHS1

Access to Health Care: This item refers to anything in the past that served as an obstacle, hindering the family’s access to healthcare. This can include, but is not limited to financial/insurance problems, geographic location, family issues, and language or cultural barriers.

? Unknown

0 Adequate access to care with insurance coverage stability.

1 Some limitations in access to heath care due to financial/insurance problems, geographic reasons, family issues, language or cultural barriers.

2 Difficulties in accessing care due to financial/insurance problems, geographic reasons, family issues, language or cultural barriers.

3 No adequate access to care due to financial/insurance problems, geographic reasons, family issues, language or cultural barriers.

VHS1

Health System Impediments: This item anticipates the problems that the child/youth may encounter in receiving the services he/she requires. These include, but are not limited to, insurance restrictions, distant services access, and inconsistent or limited provider communication.

? Unknown

0 No risk of impediments to coordinated physical and mental health care

1 Mild risk of impediments to care (e.g., insurance restrictions, distant service assess, limited provider communication and/or care coordination/transition.)

2 Moderate risk of impediments to care (e.g., potential insurance loss, inconsistent practitioners, communication barriers, poor care coordination/transition.)

3 Severe risk of impediments to care (e.g., little or no insurance, resistance to communication and or/disruptive work processes that lead to poor coordination/transition among providers.)

Developed manual and glossery to Developed manual and glossery to accompany toolaccompany tool

Also developed semi-structured Also developed semi-structured interview – conducted with child and interview – conducted with child and parent(s)parent(s)

Interview takes about 35-45 minutes Interview takes about 35-45 minutes to completeto complete

Phase II: Phase II: Validation/Feasibility StudyValidation/Feasibility Study

Examine inter-rater reliability, Examine inter-rater reliability, internal consistency, and construct internal consistency, and construct validity of the PED-INTERMEDvalidity of the PED-INTERMED

Utilize measure within Utilize measure within multidisciplinary CHEO Paediatric multidisciplinary CHEO Paediatric Gastroenterology Service Gastroenterology Service

Children/youth diagnosed with Children/youth diagnosed with Inflammatory Bowel Diseases Inflammatory Bowel Diseases (Crohn’s, Ulcerative Colitis)(Crohn’s, Ulcerative Colitis)

Choice of IBD PopulationChoice of IBD Population One of most frequent groups One of most frequent groups

referred to BNCL Teamreferred to BNCL Team GI Team had approached BNCL GI Team had approached BNCL

Team to discuss strategies for Team to discuss strategies for enhancing mental health support to enhancing mental health support to this population, including need for this population, including need for enhanced screeningenhanced screening

Children with IBD complex symptom Children with IBD complex symptom presentation (abdominal pain, bloody diarrhea, presentation (abdominal pain, bloody diarrhea, weight loss) that lead to disruption in daily weight loss) that lead to disruption in daily activitiesactivities

Disease course is quite unpredictableDisease course is quite unpredictable Varied treatment approaches, many quite Varied treatment approaches, many quite

demanding demanding At increased risk for psychosocial difficulties At increased risk for psychosocial difficulties

(e.g., low self-esteem, depression, anxiety)(e.g., low self-esteem, depression, anxiety) Complex interaction between coping and stress Complex interaction between coping and stress

reactions and disease processreactions and disease process

MethodologyMethodology Subjects: Children/youth between the ages of Subjects: Children/youth between the ages of

8 and 17 with confirmed diagnoses of IBD 8 and 17 with confirmed diagnoses of IBD n=47n=47 N=47 (26 Males, 21 Females)N=47 (26 Males, 21 Females)

24 with Crohn’s Disease24 with Crohn’s Disease 22 with Ulcerative Colitis22 with Ulcerative Colitis

Mean age at Interview: 14.47 years; Range from 8-Mean age at Interview: 14.47 years; Range from 8-1818

Mean age at Diagnosis: 10.64 years Mean age at Diagnosis: 10.64 years Participating parent: Primarily mothersParticipating parent: Primarily mothers

Semi-structured PIM interview conducted and Semi-structured PIM interview conducted and scored by a trained clinical research nursescored by a trained clinical research nurse

Children/Youth and Parents completed a battery of Children/Youth and Parents completed a battery of questionnaires that tap domains assessed by the PIMquestionnaires that tap domains assessed by the PIM

Children/Youth and Parents will complete a battery of self-Children/Youth and Parents will complete a battery of self-report measures that tap domains assessed by the PED-report measures that tap domains assessed by the PED-INTERMED.INTERMED.Psychological DomainPsychological Domain: : Children’s Depression InventoryChildren’s Depression InventoryMultidimensional Anxiety Scale for ChildrenMultidimensional Anxiety Scale for ChildrenChild Behaviour ChecklistChild Behaviour ChecklistSocial DomainSocial DomainFunctional Disability Inventory (involvement in daily activities/tasks)Functional Disability Inventory (involvement in daily activities/tasks)Competence Scales from the Child Behaviour ChecklistCompetence Scales from the Child Behaviour Checklist

Caregiver/Family DomainCaregiver/Family DomainPediatric Inventory for ParentsPediatric Inventory for ParentsFamily Inventory of Life Events and Changes (family stresses and Family Inventory of Life Events and Changes (family stresses and

functioning)functioning)Family Inventory of Resources for Management (family strengths)Family Inventory of Resources for Management (family strengths)

IMPACT – III -A quality of life measure specific to paediatric IBD.IMPACT – III -A quality of life measure specific to paediatric IBD.

Biological Domain:Biological Domain: Paediatric Crohn Disease Activity Index (PCDAI)Paediatric Crohn Disease Activity Index (PCDAI) Paediatric Ulcerative Colitis Activity IndexPaediatric Ulcerative Colitis Activity Index Use of Montreal classification of inflammatory bowel Use of Montreal classification of inflammatory bowel

diseasedisease information about diagnosis, treatment regime and disease information about diagnosis, treatment regime and disease

complications (provided by GI physicians)complications (provided by GI physicians)

Health Care Domain:Health Care Domain: Prospective chart review for 6 month period following Prospective chart review for 6 month period following

acceptance into study and completion of PED-INTERMEDacceptance into study and completion of PED-INTERMED- number of services involved in child’s carenumber of services involved in child’s care- Number of calls to the GI clinic nurseNumber of calls to the GI clinic nurse- Number of extra appointments with the GI team Number of extra appointments with the GI team

(unscheduled/unplanned)(unscheduled/unplanned)- Number of visits to the emergency departmentNumber of visits to the emergency department- Admissions to hospital and surgeries performed.Admissions to hospital and surgeries performed.

Inter-rater ReliabilityInter-rater Reliability

Videotaped 7 interviews scored by a Videotaped 7 interviews scored by a send assessor trained on the PIMsend assessor trained on the PIM

Average Inter-rater reliability = .82 Average Inter-rater reliability = .82

Range from .64-90, with 5/7 reliabilities Range from .64-90, with 5/7 reliabilities falling between .86 and .90falling between .86 and .90

Internal ConsistencyInternal Consistencyof PIM Domains of PIM Domains (N=47)(N=47)

DomainDomain Cronbach’s AlphaCronbach’s Alpha

Biological – 6 itemsBiological – 6 items(removal of Treatment Complexity (removal of Treatment Complexity Item Item

.30.30

(.56)(.56)

Psychological- 9 itemsPsychological- 9 items .82.82

Social- 7 items Social- 7 items .79.79

Caregiver/Family- 7 Caregiver/Family- 7 itemsitems

.74.74

Health Care System – Health Care System – 5 items5 items

.60.60

Overall Complexity – Overall Complexity – 34 items34 items

.90.90

Distribution of ScoresDistribution of Scores

PIM - ComplexityPIM - Complexity

Biological DomainBiological Domain

Psychological DomainPsychological Domain

Social DomainSocial Domain

Caregiver/Family DomainCaregiver/Family Domain

Health System DomainHealth System Domain

Biological DomainBiological DomainCrohn’s Crohn’s Severity Severity Index at Index at DiagnosDiagnosisis

Crohn’s Crohn’s Severity Severity Index at Index at PIMPIM

Colitis Colitis Severity Severity Index at Index at DiagnosisDiagnosis

Colitis Colitis Severity Severity Index at Index at PIMPIM

FunctionaFunctional l Disability Disability Index- Index- ChildChild

FunctionaFunctional l Disability Disability Index- Index- ParentParent

Total Total BiologicalBiological

-.38-.38 .72**.72** .19.19 .20.20 .37*.37* .53**.53**

ChronicityChronicity -.27-.27 .27.27 .44*.44* .05.05 .15.15 .32*.32*

Diagnostic Diagnostic ComplexityComplexity

-.57**-.57** .43.43++ .22.22 .05.05 .13.13 .30.30

Current Current physical physical symptomssymptoms

-.09-.09 .43.43++ .15.15 .17.17 .45**.45** .40**.40**

Current Current Diagnostic Diagnostic DilemmaDilemma

-.44-.44++ .57**.57** -.17-.17 .22.22 .10.10 .30*.30*

TherapeutiTherapeutic c ComplexityComplexity

-.19-.19 .20.20 -.01-.01 -.01-.01 -.10-.10 -.10-.10

VulnerabiliVulnerabilityty

-.01-.01 .48**.48** .30.30 -.01-.01 .45**.45** .50**.50**

PIM Psychological PIM Psychological DomainDomain

InternaliziInternalizingng

(CBCL)(CBCL)

ExternaliziExternalizing ng

(CBCL)(CBCL)

CDICDI MASCMASC

Psychological Psychological DomainDomain

*p<.05*p<.05

**P<.001**P<.001

.62**.62** .46**.46** .55**.55** .25.25++

PIM Social DomainPIM Social DomainFunctional Functional DisabilityDisability

Index Index (Child (Child

Rating)Rating)

FunctionFunctional al

DisabilitDisability Index y Index (Parent (Parent Rating)Rating)

Social Social CompetenCompetence CBCLce CBCL

AcademiAcademic c

CompeteCompetencence

CBCLCBCL

ActivitiesActivities

CBCLCBCL

PIM PIM SociSocialal

.31*.31* .34*.34* -.58**-.58** -.66**-.66** -.19-.19

(but (but significansignifican

t t correlatiocorrelatio

n with n with PIMPIM

CommuniCommunity ty

participatparticipation item ion item (r=-.39*)(r=-.39*)

PIM Caregiver-Family PIM Caregiver-Family DomainDomain

Pediatric Pediatric Inventory Inventory

for for Parents Parents

(Parentin(Parenting Stress) g Stress)

TotalTotal

Pediatric Pediatric Inventory Inventory

for for Parents Parents

(Parentin(Parenting Stress) g Stress)

DifficultyDifficulty

Family Family Inventory Inventory

of Life of Life EventsEvents

(Family (Family Stress)Stress)

Family Family Inventory Inventory

of of Resources Resources

for for ManagemManagem

entent

(Family (Family ResourcesResources

))

PIM PIM CaregiverCaregiver-Family-Family .23.23++ .30*.30* .30*.30* -.44**-.44**

IBD Specific Quality of LifeIBD Specific Quality of Life

PIMPIM

DomainDomainTotal Total

Quality Quality of Lifeof Life

Bowel Bowel SystemicSystemic EmotionEmotionalal

SocialSocial TreatmenTreatmentt

BiologicaBiological l

-.27-.27++ -.33*-.33* -.19-.19 -.13-.13 -.42**-.42** -.24-.24

PsycholoPsychologicalgical

-.41**-.41** -.27-.27++ -.33*-.33* -.29-.29++ -.46**-.46** -.40**-.40**

SocialSocial -.32*-.32* -.24-.24 -.31*-.31* -.25-.25 -.39**-.39** -.38*-.38*CaregiverCaregiver

//

FamilyFamily

-.29-.29++ -.20-.20 -.13-.13 -.16-.16 -.30*-.30* -.40**-.40**

Health Health SystemSystem

-.27-.27++ -.19-.19 -.19-.19 -.19-.19 -.22-.22 -.21-.21

Total Total ComplexiComplexity Scorety Score

-.41**-.41** -.31*-.31* -.31*-.31* -.26-.26++ -.47**-.47** -.44**-.44**

Correlations of PIM Domains and Correlations of PIM Domains and Complexity Score with Health Care Complexity Score with Health Care

Utilization IndicesUtilization IndicesPIMPIM

DomainDomainNumber Number of calls of calls to GI to GI NurseNurse

Number Number of Extra of Extra

GI GI Appts.Appts.

Number Number of ER of ER VisitsVisits

Number Number of of

Hospital Hospital AdmissiAdmissi

onsons

Number Number of of

SurgeriSurgerieses

Number Number of Hosp. of Hosp.

over over course course

of of illnessillness

BiologicalBiological .30*.30* .56**.56** .02.02 .02.02 .34*.34* .40**.40**PsychologicPsychologic

alal.33*.33* .19.19 .22.22 .14.14 -.07-.07 -.02-.02

SocialSocial .01.01 .12.12 .09.09 .12.12 -.01-.01 .18.18Caregiver/Caregiver/

FamilyFamily.27.27++ .24.24 .43**.43** .30*.30* .02.02 .20.20

Health Health SystemSystem

.33*.33* .21.21 .22.22 .34*.34* .26.26++ .35*.35*

Total Total ComplexityComplexity

.30*.30* .32*.32* .26.26++ .23.23 .09.09 .23.23

Next StepsNext Steps Continue current project to expand sample sizeContinue current project to expand sample size Second phase:Second phase:

Will examine health care outcomes (disease severity Will examine health care outcomes (disease severity and course, and health care utilization) during 6 and course, and health care utilization) during 6 month period following completion of the PIMmonth period following completion of the PIM

Will examine the extent to which PIM identified Will examine the extent to which PIM identified needs are addressed in health care plan (e.g., needs are addressed in health care plan (e.g., referral for mental health servicesreferral for mental health services

Implementation of the PIM with other populations Implementation of the PIM with other populations (e.g., general GI problems, complex pain, adolescent (e.g., general GI problems, complex pain, adolescent health) health)

Further refinement of the toolFurther refinement of the tool Look at issues related to clinical implementationLook at issues related to clinical implementation

Anticipated Applications of New Anticipated Applications of New Indicator of Biopsychosocial Case Indicator of Biopsychosocial Case

ComplexityComplexityTotal Clinical Outcomes Model – Total Clinical Outcomes Model –

TCOM (Lyons 2004)TCOM (Lyons 2004) Outcome indicators inform decision Outcome indicators inform decision

support and quality improvement at all support and quality improvement at all levels of the health care system.levels of the health care system.

Child/Youth/Family LevelChild/Youth/Family Level Facilitate optimal clinical care, Facilitate optimal clinical care,

development of individualized treatment development of individualized treatment plans, including appropriate level of mental plans, including appropriate level of mental health and psychosocial services health and psychosocial services

Facilitate communication between Facilitate communication between professionals about child’s care (within professionals about child’s care (within team, with primary prividers)team, with primary prividers)

Program/Hospital LevelProgram/Hospital Level Promote integrated interdisciplinary carePromote integrated interdisciplinary care Delineate complexity in clinic population, Delineate complexity in clinic population,

and allow for planning of appropriate and allow for planning of appropriate services and resource allocationservices and resource allocation

Continuous quality improvementContinuous quality improvement

Community/Network LevelCommunity/Network Level Triage of cases at the community level and to Triage of cases at the community level and to

inform resource planning (e.g., services for inform resource planning (e.g., services for adolescents)adolescents)

Full System Level (provincial, federal, Full System Level (provincial, federal, network of paediatric hospitals)network of paediatric hospitals) Indicator of biopsychosocial case complexity Indicator of biopsychosocial case complexity

would allow for the development of a collaborative would allow for the development of a collaborative network for monitoring the interface of health and network for monitoring the interface of health and mental health across institutions and in different mental health across institutions and in different populationspopulations

Identify gaps in the systemIdentify gaps in the system Inform policy and planningInform policy and planning Valuable tool for conducting research on chronic Valuable tool for conducting research on chronic

illness and the determinants of health outcomesillness and the determinants of health outcomes