Assessing the Health, Functional Characteristics, and Health Needs of Youth Attending a Noncategorical Transition Support Program

• Published in: Journal of adolescent health 2012-09, Vol.51 (3), p.272-278
• Main Authors: Woodward, Jason F., M.D, Swigonski, Nancy L., M.D., M.P.H, Ciccarelli, Mary R., M.D
• Format: Article
• Language: English
• Subjects: 2005–2006 National Survey of Children with Special Health Care Needs; Adolescent; Autistic Disorder - therapy; Biological and medical sciences; Cerebral Palsy - therapy; Child; Children with special health care needs; Chronic Disease - therapy; Data Collection; Developmental Disabilities - therapy; Down Syndrome - therapy; Female; Health; Health care; Health care needs; Health care surveys; Health service utilization; Health Status; Humans; Life transitions; Male; Medical sciences; Mental health; Needs Assessment; Parents; Parents - psychology; Pediatrics; Prevention. Health policy. Planification; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Social psychiatry. Ethnopsychiatry; Spinal Dysraphism - therapy; Substance abuse; Transition to Adult Care; Transition to adulthood; Young Adult; Young people
• ISSN: 1054-139X; 1879-1972
• DOI: 10.1016/j.jadohealth.2011.12.016

Abstract Purpose To assess the health, functional characteristics, and health care service needs of youth and young adults with special health care needs attending a comprehensive, noncategorical transition program. Methods A self-administered survey was developed from national health surveys and clinical experience to assess concepts identified as important for successful transition to adulthood. Surveys were mailed to 198 parents of youth and young adults with special health care needs attending the transition clinic. Parents were asked about the youth's health, functional status, and health care services needed. The clinical database provided demographic and patient health characteristics. Results were compared against the 2005–2006 National Survey of Children with Special Health Care Needs. Results Forty-four percent of surveys were returned. Average age of youth was 17.5 (11–22) years old and diagnoses included cerebral palsy (36%), spina bifida (10%), developmental delay or Down syndrome (17%), and autism (6%). Most youth needed assistance with personal care (69%) and routine needs (91%) and used assistive devices (59%). Compared with the 2005–2006 National Survey of Children with Special Health Care Needs, parents reported higher needs for all services except mental health care and tobacco or substance use counseling. Forty three percent reported at least one unmet health need. Few parents reported the need for counseling on substance use (1%), sexual health screening (16%), nutrition (34%), and exercise (41%). Conclusions Youth attending our transition program had more functional limitations, poorer reported health status, different diagnosis distribution, and higher levels of needed health services. Few parents identified needs for other recommended adolescent preventive services. Transition programs should assess patient health characteristics and service needs to design effective patient-centered services.