Dataset Information

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

ABSTRACT: The transition from pediatric to adult health care is often challenging for adolescents and young adults with sickle cell disease (SCD). Our study aimed to identify (1) measures of success for the transition to adult health care; and (2) barriers and facilitators to this process. We interviewed 13 SCD experts and asked them about their experiences caring for adolescents and young adults with SCD. Our interview guide was developed based on Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework, and interviews were coded using the constant comparative method. Our results showed that transition success was measured by health care utilization, quality of life, and continuation on a stable disease trajectory. We also found that barriers to transition include negative experiences in the emergency department, sociodemographic factors, and adolescent skills. Facilitators include a positive relationship with the provider, family support, and developmental maturity. Success in SCD transition is primarily determined by the patients' quality of relationships with their parents and providers and their developmental maturity and skills. Understanding these concepts will aid in the development of future evidence-based transition care models.

SUBMITTER: Stollon NB

PROVIDER: S-EPMC4806545 | biostudies-literature | 2015 Nov

REPOSITORIES: biostudies-literature

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Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

Stollon Natalie B NB Paine Christine W CW Lucas Matthew S MS Brumley Lauren D LD Poole Erika S ES Peyton Tamara T Grant Anne W AW Jan Sophia S Trachtenberg Symme S Zander Miriam M Bonafide Christopher P CP Schwartz Lisa A LA

Journal of pediatric hematology/oncology 20151101 8

The transition from pediatric to adult health care is often challenging for adolescents and young adults with sickle cell disease (SCD). Our study aimed to identify (1) measures of success for the transition to adult health care; and (2) barriers and facilitators to this process. We interviewed 13 SCD experts and asked them about their experiences caring for adolescents and young adults with SCD. Our interview guide was developed based on Social-Ecological Model of Adolescent and Young Adult Rea ...[more]

PMID: 26492583

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Project description:BackgroundTransitioning from pediatric care to adult-oriented care at age 18 (the age of transfer in most countries and jurisdictions) is a complex process for adolescents and young adults affected by chronic physical health and/or mental health conditions. The role of primary health care (PHC) providers for this population is poorly understood. Perspectives from these providers, such as family physicians and other members of the primary care team, have not been explored in depth.MethodsA total of 18 participants (e.g., family physicians, social workers, nurses) were recruited from 6 Primary Care Networks in Calgary, Alberta, Canada. Semi-structured individual interviews were conducted, and transcribed verbatim. A qualitative description approach was used to analyze the data, and included thematic analysis.ResultsFive distinct, yet overlapping, roles of primary health care providers for adolescents and young adults transitioning to adult care resulted from our analysis: (1) being the "common thread" (continuous accessible care); (2) caring for the "whole patient" (comprehensive care); (3) "knowing families" (family-partnered care); (4) "empowering" adolescents and young adults to develop "personal responsibility" (developmentally-appropriate care); and (5) "quarterbacking" care (coordination of specialist and/or community-based care). Participants identified potential benefits of these roles for adolescents and young adults transitioning to adult care, and barriers in practice (e.g., lack of time, having minimal involvement in pediatric care).ConclusionsInput from family physicians, who follow their patients across the lifespan and provide the majority of primary care in Canada, are critical for informing and refining recommended transition practices. Our findings provide insights, from PHC providers themselves, to bolster the rationale for primary care involvement during transitions from pediatric specialty and community-based care for AYAs. Solutions to overcome barriers for integrating primary care and specialty care for adolescents and young adults need to be identified, and tested, with input from key stakeholders.

Project description:BackgroundThere is a need for medical education on health care transitions for youth with special health care needs. The Texas Transition Toolkit (the tool) supports providers through a one-stop shop for researching literature on care transitions, a catalog of care transition tools, and guides for developing care transition programs.ObjectiveThis study aims to assess the functionality and usability of the tool with providers working with transition-aged children and youth with special health care needs (representative users).MethodsThe tool was evaluated using a triangulated mixed methods case study approach consisting of a concurrent think-aloud phase, a satisfaction survey, and a survey of problem relevance and task performance to operationalize and capture functionality and usability. Our mixed methods deep dive into the functionality and usability of the tool focused on 10 representative users from one medical home in Texas and 5 website design experts.ResultsRepresentative users found the tool to be highly relevant, as demonstrated by the satisfaction score for relevance (138/150, 92%). According to the users, the tool provided comprehensive information related to health care transitions for youth with special health care needs, with a satisfaction score of 87.3% (131/150) for comprehensive. Overall satisfaction with the tool was high at 81.92% (1065/1300) with a cutoff score of 73.33% (953.4/1300) indicating high satisfaction, but users reported relatively lower satisfaction with search (114/150, 76%) and navigation (ease of use: 114/150, 76%; hyperlinks: 163/200, 81.5%; structure: 159/200, 79.5%). They experienced search- and navigation-related problems (total problems detected: 21/31, 68%) and, based on quality checks, had a relatively low task completion rate for tasks involving finding information (60/80, 75%), which required searching and navigation. The problems identified around search and navigation functionality were relevant (relevance scores ranging from 14.5 to 22, with a cutoff score of 11.7 indicating relevance).ConclusionsThe tool may help bridge the gaps in training on health care transitions for youth with special health care needs in US medical education. The tool can be used to create structured protocols to help improve provider knowledge, collaboration across pediatric and adult care providers, and the continuity of care as youth with special health care needs transition from pediatric to adult care. The results provided a road map for optimizing the tool and highlighted the importance of evaluating eHealth technologies with representative users.

Project description:INTRODUCTION:The period of transition from pediatric to adult care has been associated with poor health outcomes among 10-19 year old adolescents living with HIV (ALHIV). This has prompted a focus on the quality of transition services, especially in high ALHIV-burden countries. Due to lack of guidelines, there are no healthcare transition standards for Nigeria's estimated 240,000 ALHIV. We conducted a nationwide survey to characterize routine transition procedures for Nigerian ALHIV. MATERIALS AND METHODS:This cross-sectional survey was conducted at public healthcare facilities supported by five local HIV service implementing partners. Comprehensive HIV treatment facilities with ≥1 year of HIV service provision and ≥20 ALHIVs enrolled were selected. A structured questionnaire assessed availability of treatment, care and transition services for ALHIV. Transition was defined as a preparatory process catering to the medical, psychosocial, and educational needs of adolescents moving from pediatric to adult care. Comprehensive transition services were defined by 6 core elements: policy, tracking and monitoring, readiness evaluation, planning, transfer of care, and follow-up. RESULTS:All 152 eligible facilities were surveyed and comprised 106 (69.7%) secondary and 46 (30.3%) tertiary centers at which 17,662 ALHIV were enrolled. The majority (73, 48.3%) of the 151 facilities responding to the "clinic type" question were family-centered and saw all clients together regardless of age. Only 42 (27.8%) facilities had an adolescent-specific HIV clinic; 53 (35.1%) had separate pediatric/adolescent and adult HIV clinics, of which 39 (73.6%) reported having a transfer/transition policy. Only 6 (15.4%) of these 39 facilities reported having a written protocol. There was a bimodal peak at 15 and 18 years for age of ALHIV transfer to adult care. No surveyed facility met the study definition for comprehensive transition services. CONCLUSIONS:Facilities surveyed were more likely to have non-specialized HIV treatment services and had loosely-defined, abrupt transfer versus transition practices, which lacked the core transition elements. Evidence-based standards of transitional care tailored to non-specialized HIV treatment programs need to be established to optimize transition outcomes among ALHIV in Nigeria and in similar settings.

Dataset Information

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

Publications

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

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