The Pediatric INTERMED: A New Clinical-Decision Making Tool for Operationalizing Biopsychosocial Case Complexity in Children and Youth with Chronic Physical Conditions

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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
• Childrens Hospital of Eastern Ontario
• University of Ottawa

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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

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

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Funding

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

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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

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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))

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• Also impacts on family system
• Uncertainty about childs 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

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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

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• 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

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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

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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

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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

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

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INTERMED Domains and Variables
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Communimetric Measurement Approach

• Clinically relevant
• Facilitate decision-making
• Items anchored in operationally created
  definitions that translate directly into action
  levels

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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

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• 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

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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.

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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

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Phase IItem 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

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• 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.
• .

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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

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• 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

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• 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.

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• Parenting Skills
• 0- Parents/caregiver have good monitoring and
  discipline skills, and have no difficulty
  supervisring child/youths medical care
• 1- Parents/caregivers provide generally adequate
  monitoring/discipline, but they may occasionally
  encounter difficulty supervising child/youths
  medical care
• 2- Parents/caregivers reportdifficulties
  monitoring and/or disciplining the child/youth,
  and have problems supervising child/youths
  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.

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• 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

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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 (Crohns, Ulcerative Colitis)

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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

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• 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

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Methodology

• Subjects Children/youth between the ages of 8
  and 17 with confirmed diagnoses of IBD n47
• N47 (26 Males, 21 Females)
• 24 with Crohns 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

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• Children/Youth and Parents will complete a
  battery of self-report measures that tap domains
  assessed by the PED-INTERMED.
• Psychological Domain
• Childrens 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.

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• 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 childs 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.

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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

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Internal Consistencyof PIM Domains (N47)
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Distribution of Scores
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PIM - Complexity
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Biological Domain
45
Psychological Domain
46
Social Domain
47
Caregiver/Family Domain
48
Health System Domain
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Biological Domain
50
PIM Psychological Domain
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PIM Social Domain
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PIM Caregiver-Family Domain
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IBD Specific Quality of Life
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Correlations of PIM Domains and Complexity Score
with Health Care Utilization Indices
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Next Steps

• Continue current project to expand sample size
• Second phase
• Will examine health care outcomes (disease
  severity and course, and health care utilization)
  during 6 month period following completion of the
  PIM
• Will examine the extent to which PIM identified
  needs are addressed in health care plan (e.g.,
  referral for mental health services
• Implementation of the PIM with other populations
  (e.g., general GI problems, complex pain,
  adolescent health)
• Further refinement of the tool
• Look at issues related to clinical implementation

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Anticipated Applications of New Indicator of
Biopsychosocial Case Complexity

• Total Clinical Outcomes Model TCOM (Lyons 2004)
• Outcome indicators inform decision support and
  quality improvement at all levels of the health
  care system.

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• Child/Youth/Family Level
• Facilitate optimal clinical care, development of
  individualized treatment plans, including
  appropriate level of mental health and
  psychosocial services
• Facilitate communication between professionals
  about childs care (within team, with primary
  prividers)
• Program/Hospital Level
• Promote integrated interdisciplinary care
• Delineate complexity in clinic population, and
  allow for planning of appropriate services and
  resource allocation
• Continuous quality improvement

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• Community/Network Level
• Triage of cases at the community level and to
  inform resource planning (e.g., services for
  adolescents)
• Full System Level (provincial, federal, network
  of paediatric hospitals)
• Indicator of biopsychosocial case complexity
  would allow for the development of a
  collaborative network for monitoring the
  interface of health and mental health across
  institutions and in different populations
• Identify gaps in the system
• Inform policy and planning
• Valuable tool for conducting research on chronic
  illness and the determinants of health outcomes