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Pediatric provider's perspectives on the transition to adult health care for youth with autism spectrum disorder: current strategies and promising new directions.

TitlePediatric provider's perspectives on the transition to adult health care for youth with autism spectrum disorder: current strategies and promising new directions.
Publication TypeJournal Article
Year of Publication2015
AuthorsKuhlthau, KA, Warfield, MErickson, Hurson, J, Delahaye, J, Crossman, MK
JournalAutism
Volume19
Issue3
Pagination262-71
Date Published2015 Apr
ISSN1461-7005
Abstract

Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement.

DOI10.1177/1362361313518125
Summary

Lead Author
Karen Kuhlthau, Marji Warfield

Study Aims and Objectives
To identify current strategies that pediatric providers who specialize in the treatment of Autism Spectrum Disorder (ASD) use to aid their patients with ASD in transitioning to adult health care.

Methods - Sample, Procedure, Study Measures, Analysis
The research team interviewed 19 pediatrics experts. To ensure the interviews focused on information important to the study, interview guides were designed and sent to providers before the start of the interview. A three-stage approached was used to analyze the findings. First, two members of the team read through the transcript of each interview and grouped commonly used strategies. Next, different team members independently reviewed the transcripts and refined the categories found in the first part. Last, the data was examined to find possible associations within and among the categories.

Results – Main Finding(s)
The researchers highlighted nine strategies from the interviews. These included providing families with written medical summaries to give to adult providers, compiling lists of available adult providers, coordinating care between pediatric and adult providers, making transition-specific appointments, and using checklists to monitor transition progress. While seven strategies were identified as needed, only five were commonly used.

Conclusion – Summary Statement
Pediatric providers should consider some of the activities described and endorsed in this study in order to best serve their patients in transitioning to adult health care. Further research should be done on determining the consistencies with which the identified strategies were used, as well as their general effectiveness.

Alternate JournalAutism
PubMed ID24497626
Grant ListR40 MC 19925 / / PHS HHS / United States