Patterns and Cost of Health Care Transitions to Adult Care among Youth with Chronic Conditions in Ontario: A Population Based Cohort Study Eyal Cohen, MD, MSc; Sima Gandhi, MSc; Charlotte Moore, MD; Alene Toulany, MD; Longdi Fu, MSc; Julia Orkin, MD; Deborah Levy, MD; Anne Stephenson, MD, PhD; Astrid Guttmann, MDCM, MSc Canadian Association for Health Services and Policy Research May 26 th to 28 th, 2015 Montreal, QC
The authors have no relevant financial relationships to disclose or COIs to resolve. 2
Background Increase in number of youth with chronic conditions surviving into adulthood Transitions are challenging: Emotional/Cognitive/Developmental challenges Social supports Communication/Coordination across health systems Trained providers Decline in health after transitions has been described, but usually focused on single disease populations in single centers Few studies in important subgroups (e.g. mental health, neurodevelopmental disabilities) Little population level data 3
Study Objectives 1. Describe the population of youth with chronic conditions that requiring transition to adult care 2. Examine differences in health service use and costs before and after transition to adult care 4
Study Design and Setting Retrospective cohort study in Ontario, Canada Linked population based administrative health datasets Youth w/ child onset chronic conditions: Born between April 1 st 1989 and April 1 st 1993 Alive at age 16 years Continuously residing in Ontario from ages 10 20 years 5
Study Design and Setting Conditions were sorted hierarchically into mutually exclusive disease categories, with most complex conditions at the top Subjects entered one of 11 mutually exclusive disease cohorts if specific diagnostic criteria were met using ICD 9 or ICD 10 codes, or if prevalent record in select disease registries 6
Data Sources Demographic Characteristics: Ontario Registered Persons Database (RPDB) Citizenship and Immigration Canada (CIC) Disease Registries: Systematic Lupus Erythematosus (SLE) Paediatric Inflammatory Bowel Disease (PIDB) Ontario Diabetes Database (ODD) Ontario Asthma Database (OASIS) Health Service Use: Ontario Health Insurance Plan (OHIP) Discharge Abstract Database (DAD) National Ambulatory Care Reporting System (NACRS) National Rehabilitation System (NRS) Continuing Care Reporting System (CCRS) Ontario Mental Health Reporting System (OMHRS) Home Care Database (HCD) Ontario Drug Benefit Claims (ODB) ICES Physician Database (IPDB) Client Agency Program Enrolment (CAPE) Assisted Devices Program (ADP) 7
Cohort Definitions Definition Hospital discharge records Birth to age 16 years Hospital discharge records Age 10 to 16 years Cohort Congenital Heart Disease Cystic Fibrosis Sickle Cell Disease Neurological Impairment Eating Disorders Schizophrenia Mood and Affective Disorders Records in disease registries Systemic Lupus Erythematosus Inflammatory Bowel Disease Type 1 Diabetes Asthma* 8
Clinical Groups Complex Chronic Conditions Neurologic Impairment (NI) Cystic Fibrosis (CF) Sickle Cell Disease (SCD) Systemic Lupus Erythematosus (SLE) Non Complex Chronic Conditions Asthma Type 1 Diabetes Mellitus (DM) Inflammatory Bowel Disease (IBD) Congenital Heart Disease (CHD) Chronic Mental Health Conditions Eating Disorders (ED) Schizophrenia (SCZ) Mood and Affective Disorder (MAD) 9
Outcome Measures Mortality (after age 16) Health Service Use & Costs Physician Visits Specialist visits Preventative Care Acute Care Inpatient hospital (including psychiatric) Emergency department visits Home care services Drug claims (among claimants) 10
Analysis Birth Health service use and costs Death, 20 th birthday, end of study (March 31 st, 2013) Pre-transition (age 16-18 years) 18 th birthday Post-transition (age 18-20 years) 11 11
Demographic Characteristics Sex 80% 70% 60% Female Male Neighbourhood Income Quintile 50% 40% 30% 25% 20% Q1 (lowest) Q2 Q3 Q4 Q5 (highest) 20% 10% 15% 0% Complex Non complex Mental Health 10% Social Assistance (Ontario Works) 5% 50% 45% 40% 35% 30% 25% 20% 15% 10% 5% 0% 0% Complex Non complex Mental Health Complex Non complex Mental Health 12
Mortality 90 80 p=.46 70 60 Mortality (n) 50 40 30 p=.81 Pre transition Post transition 20 10 p=.76 0 Complex (n=2,520) Non Complex (n=99,421) Mental Health (n=2,544) 13
Mean Total Health System Costs $25,000.00 p=.42 $20,000.00 $15,000.00 $10,000.00 p=0.04 Pre transition Post transition $5,000.00 p<.001 $0.00 Complex (n=2,520) Non Complex (n=99,421) Mental Health (n=2,544) 14
Physician Visits PCP Preventative Visit (%) Specialist Visit (%) 25% 20% 15% Pre transition Post transition p<.01 p<.001 p=.02 90% 80% 70% 60% 50% Pre transition Post transition p=.02 p<.001 p<.001 10% 40% 30% 5% 20% 10% 0% Complex (n=2,520) Non Complex (n=99,421) Mental Health (n=2,544) 0% Complex (n=2,520) Non Complex (n=99,421) Mental Health (n=2,544) 15
Acute care service use 0.8 0.7 0.6 0.5 Hospitalizations (mean) ED visits (mean) Pre transition p <.001 Post transition Pre transition 3.0 2.5 p <.001 p <.01 2.0 Post transition p=.66 0.4 1.5 p <.001 0.3 1.0 0.2 0.1 p=.17 0.5 0 Complex (n=2,520) Non Complex (n=99,421) Mental Health n=(2,544) 0.0 Complex (n=2,520) Non Complex (n=99,421) Mental Health (n=2,544) 16
Mean health system costs pre and posttransition to adult care $35,000 $30,000 ***p<.001, **p<.01, *p<.05 Mean health system cost ($) $25,000 $20,000 $15,000 $10,000 ** ** * Pre-transition Post-transition $5,000 *** ** $- NI CF SLE SCD CHD IBD DM Asthma Eating dis. Complex (n=2,520) Non-complex (n=99,421) Mental health (n=2,544) SZ MA 17
Proportion of total health system cost by sector, pre and post transition to adult care Proportion of total system cost (%) 0% 10% 20% 30% 40% 50% 60% Inpatient Complex ED Drug Outpatient ** *** *** Home care Non complex Inpatient ED Drug Outpatient Home care *** *** *** Pre transtion Post transition Mental Health Inpatient ED Drug Outpatient Home care *** * ***p<.001, **p<.01, *p<.05 18
Limitations Missed some youth without hospitalizations Incomplete outcome data private insurance (e.g. drugs and homecare) non health funded services (e.g. rehabilitation) Out of province services Disease specific (e.g. HbA1C) or patient reported outcomes Short outcome period Statistical Power 19
Conclusions/ Future study Overall patterns of healthcare use after transition to adult care are relatively stable Decline in preventative service use?access?change in health seeking behavior Decline in admission and increase ED use?different admission threshold in adult health system Studies with longer time horizon +/ other health systems will be illuminating 20
Acknowledgements Health System Performance Research Network (PI Walter Wodchis) and the Institute for Clinical Evaluative Sciences (ICES) are funded by the Ontario Ministry of Health and Long Term Care (MOHLTC). The opinions, results and conclusions reported are independent from the funding sources. No endorsement by ICES or the Ontario MOHLTC is intended or should be inferred. 21
THANK YOU! 22
Clinical Hierarchy Neurological Impairment (NI) Congenital Heart Disease (CHD) Cystic Fibrosis (CF) Systematic Lupus Erythematosus (SLE) Sickle Cell Disease (SCD) Inflammatory Bowel Disease (IBD) Type 1 Diabetes (DM) Asthma Eating disorders (ED) Schizophrenia (SCZ) Mood and Affective Disorders (MAD) 23