Health care in adults with Down syndrome: a longitudinal cohort study.

BACKGROUND Individuals with Down syndrome increasingly survive into adulthood, yet little is known about their healthcare patterns as adults. Our study sought to characterise patterns of health care among adults with Down syndrome based on whether they had fully transitioned to adult-oriented providers by their inception in this cohort. METHODS In this retrospective observational cohort study, healthcare utilisation and annualised patient charges were evaluated in patients with Down syndrome aged 18-45 years who received care in a single academic health centre from 2000 to 2008. Comparisons were made based on patients' provider mix (only adult-focused or 'mixed' child- and adult-focused providers). RESULTS The cohort included 205 patients with median index age = 28 years; 52% of these adult patients had incompletely transitioned to adult providers and received components of their care from child-focused providers. A higher proportion of these 'mixed' patients were seen exclusively by subspecialty providers (mixed = 81%, adult = 46%, P < 0.001), suggesting a need for higher intensity specialised services. Patients in the mixed provider group incurred higher annualised charges in analyses adjusted for age, mortality, total annualised encounters, and number of subspecialty disciplines accessed. These differences were most pronounced when stratified by whether patients were hospitalised during the study period (e.g., difference in adjusted means between mixed versus adult provider groups: $571 without hospitalisation, $19,061 with hospitalisation). CONCLUSIONS In this unique longitudinal cohort of over 200 adults aged 18-45 years with Down syndrome, over half demonstrated incomplete transition to adult care. Persistent use of child-focused care, often with a subspecialty emphasis, has implications for healthcare charges. Future studies must identify reasons for distinct care patterns, examine their relationship with clinical outcomes, and evaluate which provider types deliver the highest quality care for adults with Down syndrome and a wide variety of comorbidities.

[1]  M. Cabana,et al.  Physician Views on Barriers to Primary Care for Young Adults With Childhood-Onset Chronic Disease , 2010, Pediatrics.

[2]  B. Chicoine,et al.  Developmental Disabilities Grown Up: Down Syndrome , 2011, Journal of developmental and behavioral pediatrics : JDBP.

[3]  P. Newacheck,et al.  Transition Planning for Youth With Special Health Care Needs: Results From the National Survey of Children With Special Health Care Needs , 2005, Pediatrics.

[4]  M. Feingold,et al.  Health supervision for children with Down syndrome. , 2018, Pediatrics.

[5]  J. Kučera.  [Epidemiology of Down's syndrome (trisomy 21)]. , 1980, Ceskoslovenska pediatrie.

[6]  Nancy A. Okinow,et al.  Trends in transition from pediatric to adult health care services for young adults with chronic conditions. , 1999, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[7]  Susan M Sawyer,et al.  Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. , 2003, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[8]  R. Gibson,et al.  Health care transition: destinations unknown. , 2002, Pediatrics.

[9]  Matthew M Davis,et al.  State and national estimates of insurance coverage and health care utilization for adolescents with chronic conditions from the National Survey of Children's Health, 2003. , 2007, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[10]  S. Rasmussen,et al.  Understanding physicians' attitudes toward people with Down syndrome , 2011, American journal of medical genetics. Part A.

[11]  E. Depoy,et al.  Adolescents with Special Health Care Needs in Transition , 2000, Social work in health care.

[12]  Golder N Wilson,et al.  Preventive Health Care for Children with Genetic Conditions: Providing a Primary Care Medical Home , 2006 .

[13]  D. Kaplan,et al.  Transition of care provided for adolescents with special health care needs. American Academy of Pediatrics Committee on Children with Disabilities and Committee on Adolescence. , 1996, Pediatrics.

[14]  J. Hoffman,et al.  Task force 1: the changing profile of congenital heart disease in adult life. , 2001, Journal of the American College of Cardiology.

[15]  Rebecca A. Baum,et al.  Primary care of children and adolescents with down syndrome: an update. , 2008, Current problems in pediatric and adolescent health care.

[16]  P. White,et al.  Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home , 2017, Pediatrics.

[17]  J. McNamara.  CHRONIC ILLNESS IN ADOLESCENTS: TRANSFER OR TRANSITION TO ADULT SERVICES? , 1997, Journal of paediatrics and child health.

[18]  K. Steinbeck,et al.  Transition in chronic illness: Who is going where? , 2008, Journal of paediatrics and child health.

[19]  David A. Hanauer,et al.  EMERSE: The Electronic Medical Record Search Engine , 2006, AMIA.

[20]  S. Timmons,et al.  Improving Transition: a Qualitative Study Examining the Attitudes of Young People with Chronic Illness Transferring to Adult Care , 2004, Journal of child health care : for professionals working with children in the hospital and community.

[21]  J. Graham,et al.  Down syndrome--an update and review for the primary pediatrician. , 1991, Clinical pediatrics.

[22]  Robert Burke,et al.  A consensus statement on health care transitions for young adults with special health care needs. , 2002, Pediatrics.

[23]  R. Hussain,et al.  The changing survival profile of people with Down's syndrome: implications for genetic counselling , 2002, Clinical genetics.

[24]  J. Reiss,et al.  Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. , 2006, Cardiology clinics.

[25]  Joav Merrick,et al.  Health issues for adults with Down syndrome , 2006 .

[26]  David A Hanauer,et al.  Informatics and the American College of Surgeons National Surgical Quality Improvement Program: automated processes could replace manual record review. , 2009, Journal of the American College of Surgeons.

[27]  M. Bryon,et al.  Transition from Paediatric to Adult Care: Psychological Principles , 2001, Journal of the Royal Society of Medicine.

[28]  S. Rasmussen,et al.  Mortality associated with Down's syndrome in the USA from 1983 to 1997: a population-based study , 2002, The Lancet.

[29]  Craig M. Schramm,et al.  A consensus statement on health care transitions for young adults with special health care needs. , 2002, Pediatrics.