Healthcare Transition Research: Families

Addressing transition to adult health care for adolescents with special health care needs.

Scal P, Ireland M.  Division of General Pediatrics and Adolescent Health, University of Minnesota Medical School, Minneapolis, Minnesota 55455, USA.  Pediatrics. 2005 Jun;115(6):1607-12.

OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs.

METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the 2000-2001 National Survey of Children With Special Health Care Needs were used. The adequacy of transition services was determined by parent self-report. Explanatory variables, including parental education, family poverty status, race/ethnicity, measures of the severity and complexity of conditions, health insurance status, having a personal doctor, and the quality of the parent’s relationship with the adolescent’s doctor, were entered into a regression model.

RESULTS: Overall, 50.2% of parents reported that they had discussed transition issues with their adolescent’s doctor and 16.4% had discussed and developed a plan for addressing those needs. In a multivariate regression analysis, correlates of the adequacy of transition services included older age, female gender, complexity of health care needs, and higher quality of the parent-doctor relationship.

CONCLUSIONS: Among adolescents with special health care needs, those who were older and those with more complicated needs were more likely to have addressed the transition from a pediatric to adult-oriented system of care. Furthermore, this analysis demonstrated a strong association between a high-quality parent-provider relationship and the extent to which transition issues were addressed. The importance of transition services for adolescents with less complex needs and the overall impact of health care transition services were not assessed in this study and remain important questions for future investigations.


Growing up ready: a shared management approach.

Gall C, Kingsnorth S, Healy H.  Life Skills Institute at Bloorview Kids Rehab, Tronto, Ontario, Canada.  Phys Occup Ther Pediatr. 2006;26(4):47-62.

In order to help youth with physical disabilities and their families to plan for the transition to adulthood, well-planned service delivery is essential. This paper provides an account of the work of a children’s rehabilitation centre to develop a transition framework reflecting evidence-based practice. Examination of current transition practices, a review of the literature, and site visits to health care facilities and universities were conducted to identify promising practices in the field of transition to adult services. A transition framework was designed to facilitate the adoption of a shared management approach for helping families and their children to grow up ready. Key elements of the transition framework are described and future plans discussed.


Health care transition: youth, family, and provider perspectives.

Reiss JG, Gibson RW, Walker LR.  Institute for Child Health Policy, University of Florida, Gainesville, FL 32608, USA.  Pediatrics. 2005 Jan;115(1):112-20.  Comment in:  Pediatrics. 2005 May;115(5):1449-50; author reply 1450.

OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT?

METHODS: A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti.

RESULTS: Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers.

CONCLUSION: This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults’ and family members’ lack of preparation for successful participation in the adult health care system contributes to problems with HCT.



Portfolio of health advice for young people with disabilities transferring to adult care.

Tan MJ, Klimach VJ.  Paediatric Department, Colwyn Bay Hospital, Conwy, UK.  Child Care Health Dev. 2004 May;30(3):291-6.

BACKGROUND: The transition from paediatric to adult services for young people with complex disabilities is fraught with anxieties for families. To facilitate the transition process a portfolio comprising reports from parents, paediatrician and therapists was collected and given to the young person and family on leaving school.

AIM: To evaluate the young people and their parents’ views of the usefulness of portfolios in providing comprehensive picture of their health needs.

METHODS: A prospective study was performed. Eight families were interviewed and semi-quantitative feedback obtained using standardized questionnaires.

RESULTS: Seven out of eight young people and their families were satisfied with the portfolios they received. All of them found the portfolios worthwhile and useful. A quarter of the families would like to have been consulted more about the content of the individual reports.

CONCLUSIONS: Portfolios of health reports facilitate transfer of information when young people with disabilities move from paediatric to adult services. Ideally portfolios should be interagency, and include reports from education and social services.


Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs.

Lotstein DS, McPherson M, Strickland B, Newacheck PW.  Department of Pediatrics, David Geffen School of Medicine, University of California, Los Angeles, CA 90095-1752, USA.  Pediatrics. 2005 Jun;115(6):1562-8.

OBJECTIVE: To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition services.

METHODS: We analyzed responses to questions about medical transitions from the 2001 National Survey of Children With Special Health Care Needs (NS-CSHCN). Parents or guardians of youth aged 13 to 17 years who screened positive for the survey were asked (1) whether they had discussed with health care providers how their child’s health care needs might change in adulthood, (2) if they had a plan to address these changing needs, and (3) if their child’s health care providers had discussed having their child eventually see a doctor who treats adults. Bivariate and multivariate associations were estimated to identify sociodemographic and health care factors related to receiving medical-transition services.

RESULTS: Overall, 50% of respondents had discussed their child’s changing health care needs with their physicians, although significantly fewer Hispanic youth compared with other youth reported these discussions. Youth who met criteria for a medical home were more likely to have discussed changing needs and to have a plan addressing these needs. Of those who had discussed changing needs, 59% had a plan to address these needs and approximately 42% had reported discussing shifting care to adult-oriented providers. Younger teens and non-Hispanic black children were less likely to have discussed changing providers. Fifteen percent of YSHCN met the Maternal and Child Health Bureau’s core outcome for medical transitions. A multivariate logistic-regression model found that older age and having a medical home were significantly associated with increased odds of meeting the outcome measure.

CONCLUSION: The proportion of YSHCN meeting the medical-transition outcome measure is quite low, particularly for youth from ethnic minorities. Higher rates are seen for older teens and those receiving care within a medical home. Significant efforts will be required to meet the proposed goal of all YSHCN receiving the services necessary to transition to adult health care.