Children’s Disability and Health Care Quality James M. Perrin, MD Professor of Pediatrics Harvard Medical School

Will the Health Care Quality Movement Miss Children with Disability (Probably)

Growth in Children’s Healthcare Quality Mirroring in some ways the general growth in attention to health care quality Esp., after IOM Chasm and other reports Much supported by Medicare studies Children’s HCQ efforts supported by many groups: NACHRI/CHCA, NICHQ, ABP, AAP, CAHMI Specific hospitals Condition-specific groups – e.g., Cystic Fibrosis

Definition of Quality Degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge Assessment or improvement?

Tsunami of Childhood Chronic Conditions and Disability Quadrupling of childhood disability Indicates needs for prevention Without prevention, the nation can expect massive new expenditures for disability among young adults for pulmonary, cardiovascular, and mental health conditions

Types of Chronic Conditions Associated with Disability High prevalence Asthma, obesity, mental health (incl., ADHD, depression) Low prevalence Including cystic fibrosis, leukemia, sickle cell disease, hemophilia…. Special conditions? E.g., autism spectrum disorders – severe but common

Standards, Guidelines, and Improving Quality Some evidence for many conditions For many treatments, there may be more consensus than evidence

ICF Framework Conditions or diseases Activities and participation Body functions Body structures Activities and participation Tasks Home, interpersonal, and community life Environmental factors Products and technology Natural environment Relationships Services Personal factors

Issues in Assessment Short term vs long term outcomes Long term ED, hospital use related to care system? Or social and environmental phenomena Effective use of specialized therapies Use of psychotropic medications Long term Indicates need for good longitudinal data (registries, large datasets) Effective participation in adult life activities with as little limitation as possible from disability, pain, psychology Child, family, community Example of deaf community

Domains of Assessment Clinical measures/indicators Hemoglobin A1C Others Functioning (in developmentally appropriate ways) (WeeFIM, PEDI, FSIIR) Includes participation Quality of life (PedsQL, CHQ, Disabkids) Measuring views of consumers (or proxies) Generic or specific QoL

Efforts at Measurement CAHMI, NICHQ, NQF Children’s Health Insurance Program Reauthorization (2009) AHRQ investments Initial 24 measures Chronic conditions: ED visits in asthma; f/u for ADHD or MH hospitalization; diabetes monitoring Pediatric Quality Measurement Program – 7 centers of excellence IOM committee report CMS state experiments in quality improvement Several address chronic conditions – mainly identification and long-term management

Current State of Child Health Care Quality Mangione-Smith et al. (NEJM) Only ambulatory care Limited attention to chronic conditions Acne, asthma, ADHD, allergic rhinitis, depression, otitis media Measures all of medical care – none of functioning or health outcomes

Improvement Efforts Mainly address processes of (medical) care Outcomes marginally addressed Rarely functional or quality of life Promising work from condition-specific networks CF improving functioning as well as biologic measures Oncology recognition of substantial secondary morbidity led to involvement of groups to define and measure functioning and QoL New networks may expand this work Need to broaden the assessment and improvement frames to include disability

Affordable Care Act Medical home emphases Opportunities for improvement in childhood chronic care Homer et al. review of medical home Improvements in care effectiveness (mainly asthma), family-centeredness, health status Current measures (NCQA) emphasize IT capacity Essential to develop measurement framework that addresses disability, functioning, and quality of life

Medical Home Systematic Review 33 articles from 30 distinct studies 6 RCTs 1 pre-post with comparison; 4 without 3 cohort 16 cross-sectional Evidence for improved Health status Timeliness of care Family-centeredness Family functioning Homer et al., Pediatrics, October 2008

The (Business) Case for Improvement Little evidence of cost-savings, but Psychotropic med use ED and hospital use Use of specialized therapies Effects on parent mental health and especially workforce participation Much higher rates of limited or no employment among parents of children with disabilities Providing better care and outcomes may lead to better workforce participation and performance of parents

(Promising) Next Steps Building a library of child health measurement tools – and including functioning, quality of life, and disability measures Importance of prevention Multisite collaborations for several childhood disabling conditions Aligning incentives for comprehensive, multidisciplinary care with focus on disability improvement