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

1. 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. David Mack, MD,.FAAP, FRCPC John Lyons, Ph.D Children’s Hospital of Eastern Ontario University of Ottawa

2. Collaborators • Frits Huyse, MD, Ph.D. University Hospital Gronigen • Lise Bisnaire, Ph.D., C. Psych. • Derek Puddester, MD, FRCPC. • Mario Cappeli, Ph.D., C. Psych. • Lynn Grandmaison-Dumond, RN (EC), BScN, MScN • Roger Kathol, Cartesian Solutions • Joe Reisman, MD, FRCP(C), MBA

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

4. Funding • CHEO Research Institute • 3-C Foundation of Canada • CHEO Psychiatry Associates • Provincial Centre of Excellence for Child and Youth Mental Health at the Children’s Hospital of Eastern Ontario • CHEO Department of Gastroenterology • AHSC AFP Innovation Fund, Children’s Hospital of Eastern Ontario

5. Origins of Project • Behavioural Neurosicences and Consultation Liason Team (BNCL) at CHEO provides mental health services to children/youth with complex medical issues • Embarking on ongoing program evaluation activities • Wondered which children/youth were being referred to our team ? • How referring health professionals were screening for mental health problems and psychosocial/issues in children/youth? • Committed to providing collaborative integrated care, that captured the complex interplay between physical and mental health

6. Interplay between Physical and Mental Health • Chronic illness affects 10-20% of children/youth • Children/youth living with a chronic illness at heightened risk for the development of mental health problems (Cadman, Boyle & Offord, 1988; Bilfied, S., Wildman, et al., 2006))

7. Also impacts on family system • Uncertainty about child’s health outcomes, daily hassles related to ensuring compliance with management regimes, social, role and financial strains, challenges of navigating complex system of care (Drotar , 2000) • Failure to address psychosocial issues increases risk of poor treatment adherence, increased health care utilization, psychiatric co-morbidity

8. Issues in the Assessment and Identification of Psychosocial Needs • Mental health needs of children with chronic illness often under detected and underserved, both in primary and tertiary care settings Reasons • Mental health and medical services are often distinct entities • Mental health services available on consultation only basis • Often triggered by a crisis • Onus for identifying children who require services rests with medical specialist or primary care physician • Variability in extent to which physicians address psychosocial issues

9. Recent study examined barriers to the identification of psychosocial factors in patient care (Astin, Soeken et al., 2006) • Low self-efficacy to address psychosocial issues • Perception that psychosocial factors are difficult to control or impact • Lack of knowledge of the evidence base supporting the use of mind-body methods • Lack of time to adequately address such issues

10. Pilot Program Evaluation Project • Conducted by Kara Olineck, Psychology Resident • Focus group at CHEO, GI Service • Health professionals indicated that they know patients well, sensitive to psychosocial issues, but have no systemic way of addressing approach to assessing these • Referrals often generated by crisis • Not all patients requiring mental health services have been identified and/or referred for these services

11. Objectives of the Current Research Program • Develop a reliable and valid clinical decision-support tool to assist health care professionals in screening for case complexity and patient/family needs to facilitate shared communication, care planning and referral to appropriate mental health services or other resources. • Case Complexity: Defined as the presence of coexisting conditions (biologic, psychologic, social or related to the health care system) that interfere with standard care and require a shift from standard care to individualized care (Huyse, Stiefel, de Jonge, 2006). • Care Complexity: cases require an integrated care plan:

12. The INTERMED Approach • Tool developed to assess health care risks and related health needs in adult population (Huyse, Lyons et al., 1999). • Operationalizes three domains germaine to the biopsychosocial model of illness: • the biological • the psychological, • social • patients/families interactions with the health care system • Life-span perspective within each domain: • history/past functioning: comprehensive background assessment • current status that drives treatment plan • anticipated future prognosis and challenges

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

14. INTERMED Domains and Variables

15. Communimetric Measurement Approach • Clinically relevant • Facilitate decision-making • Items anchored in operationally created definitions that translate directly into action levels

16. Score Labels for INTERMED • __________________________________________________________________________________ • Numerical Visual Score Action __________________________________________________________________________________ • 3 Red Severe vulnerability or care needs Immediate and/or intensive treatment • 2 Orange Moderate vulnerability or care needs Treatment • 1 Yellow Mild vulnerability or care needs Monitoring or preventive intervention • 0 Green No vulnerability or care needs No action needed

17. Easy and accurate communication of relevant results • Item level reliability and inter-rater reliability critical • Adaptable to the organization process, easily integrated into service delivery • Item design based on philosophy of “just enough information”

19. Research with the INTERMED • Used in a variety of health care contexts with varied populations • High inter-rater reliability (approx. Kappa of .85) • Good test-retest reliability over a one-year period • Overall index of case complexity associated with varied health indicators (validity) e.g., length of stay, number of specialists involved, poorer quality of life at discharge, biological indicators of care (e.g., HbA1c values in a diabetic population) • Recent randomized control trial to examine whether implementation of the INTERMED was associated with improved health care outcomes. Benefits found with regard to quality of life, treatment response and cost-effectiveness.

20. Current Project • Develop a paediatric version of the PEDIATRIC INTERMED (PIM) • Phase 1: • Adaptation of the INTERMED for use with children/youth with chronic physical condition, considering the unique developmental, social and psychological contexts of children and youth -(family, school, peers) • Phase II: • Implementation of the measure within a chronic illness population – Children/Youth with Inflammatory Bowel Disease (IBD) • Examine measures inter-rater reliability, internal consistency, validity of PIM

21. Phase I:Item Generation and Refinement • Items determined based on clinical acumen and empirical evidence • Reviewed literature on psychosocial correlates of paediatric chronic illness and biological, psychological and social factors associated with treatment responses • Identified relevant indicator items for each domain • Delphi group consisting of a pool of international experts, representing various disciplines (paediatrics, psychiatry, psychology, nursing) reviewed items for clinical relevance and utility

22. Pilot study examined inter-rater reliability • Three assessors trained in the tool • 20 case vignettes developed from case records (10 vignettes drawn from GI service- ½ with IBD, 10 vignettes children referred to neurology service for investigation of headaches) • Each assessor assessed 10 case children, allowing an overlap of 10 for each pair of assessors • Initial inter-rater reliabilities were generally acceptable. Based on results further modifications to items were made. .

23. Pediatric Intermed (PIM) • Final version of PIM consists of 34 items organized into 5 domains • Biological: chronicity, diagnostic dilemma/challenge, therapeutic complexity • Psychological: Mental Health difficulties, resilience, coping, treatment resistance, cognitive/developmental level, adverse developmental events (including trauma) • Social: School and social/peer functioning, community participation and supports

24. Caregiver/Family: Family relationships, parental Health and Function, Family Stress, Parenting Skills, Caregiver/Family Support, Residential Stability • Health Care System: Access to Health Care, Treatment experiences, organization and coordination of care, transition issues

28. Symptom Severity: This item describes severity or acuity of physical symptoms related to the reason for current illness presentation. In case of an acute illness most often these symptoms will disappear or diminish, while in an existing chronic disease these symptoms might disappear, remain or increase. ? Unknown 0 No physical symptoms or symptoms resolve with treatment. 1 Mild symptoms, which do not interfere with current functioning. 2 Moderate symptoms, which interfere with current functioning. 3 Severe symptoms leading to inability to perform most functional activities.

30. Parenting Skills 0- Parents/caregiver have good monitoring and discipline skills, and have no difficulty supervisring child/youth’s medical care 1- Parents/caregivers provide generally adequate monitoring/discipline, but they may occasionally encounter difficulty supervising child/youth’s medical care 2- Parents/caregivers reportdifficulties monitoring and/or disciplining the child/youth, and have problems supervising child/youth’s medical care. 3- Parents/caregivers are unable to discipline and monitor the child/youth and the child/youth is at medical risk due to the absence of supervision of his/her medical care.

33. Developed manual and glossery to accompany tool • Also developed semi-structured interview – conducted with child and parent(s) • Interview takes about 35-45 minutes to complete

34. Phase II: Validation/Feasibility Study • Examine inter-rater reliability, internal consistency, and construct validity of the PED-INTERMED • Utilize measure within multidisciplinary CHEO Paediatric Gastroenterology Service • Children/youth diagnosed with Inflammatory Bowel Diseases (Crohn’s, Ulcerative Colitis)

35. Choice of IBD Population • One of most frequent groups referred to BNCL Team • GI Team had approached BNCL Team to discuss strategies for enhancing mental health support to this population, including need for enhanced screening

36. Children with IBD complex symptom presentation (abdominal pain, bloody diarrhea, weight loss) that lead to disruption in daily activities • Disease course is quite unpredictable • Varied treatment approaches, many quite demanding • At increased risk for psychosocial difficulties (e.g., low self-esteem, depression, anxiety) • Complex interaction between coping and stress reactions and disease process

37. Methodology • Subjects: Children/youth between the ages of 8 and 17 with confirmed diagnoses of IBD n=47 • N=47 (26 Males, 21 Females) • 24 with Crohn’s Disease • 22 with Ulcerative Colitis • Mean age at Interview: 14.47 years; Range from 8-18 • Mean age at Diagnosis: 10.64 years • Participating parent: Primarily mothers • Semi-structured PIM interview conducted and scored by a trained clinical research nurse • Children/Youth and Parents completed a battery of questionnaires that tap domains assessed by the PIM

38. Children/Youth and Parents will complete a battery of self-report measures that tap domains assessed by the PED-INTERMED. Psychological Domain: Children’s Depression Inventory Multidimensional Anxiety Scale for Children Child Behaviour Checklist Social Domain Functional Disability Inventory (involvement in daily activities/tasks) Competence Scales from the Child Behaviour Checklist Caregiver/Family Domain Pediatric Inventory for Parents Family Inventory of Life Events and Changes (family stresses and functioning) Family Inventory of Resources for Management (family strengths) IMPACT – III -A quality of life measure specific to paediatric IBD.

39. Biological Domain: • Paediatric Crohn Disease Activity Index (PCDAI) • Paediatric Ulcerative Colitis Activity Index • Use of Montreal classification of inflammatory bowel disease • information about diagnosis, treatment regime and disease complications (provided by GI physicians) Health Care Domain: • Prospective chart review for 6 month period following acceptance into study and completion of PED-INTERMED • number of services involved in child’s care • Number of calls to the GI clinic nurse • Number of extra appointments with the GI team (unscheduled/unplanned) • Number of visits to the emergency department • Admissions to hospital and surgeries performed.

40. Inter-rater Reliability • Videotaped 7 interviews scored by a send assessor trained on the PIM Average Inter-rater reliability = .82 Range from .64-90, with 5/7 reliabilities falling between .86 and .90

41. Internal Consistencyof PIM Domains (N=47)

42. Distribution of Scores

43. PIM - Complexity

44. Biological Domain

45. Psychological Domain

46. Social Domain

47. Caregiver/Family Domain

48. Health System Domain

49. Biological Domain

50. PIM Psychological Domain