Patient- or Participant-Generated Registries

Terry, Sharon F.; D, Runkle; Ricks, Paul H.

doi:10.23970/ahrqregistriesgenerated

Cited by 2 publications

(1 citation statement)

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“…Pragmatic clinical trials may be suitable for the study of transition care but are less feasible for patients who are seen within both primary care and subspecialty practices and have high utilization of acute care hospitals. Given the disadvantages posed by these study designs toward understanding what HCT practices are associated with optimal outcomes, we propose that comparative effectiveness studies, registries that include patient-reported outcomes [ 76 , 77 ], and quality improvement approaches utilizing available and novel tools and strategies are feasible and amenable to rapid translation into practice. Two comparative effectiveness research studies were funded for SCD in 2017–2024 by the Patient-Centered Outcomes Research Institute, comparing two interventions that have proven effective in facilitating HCT for people with other conditions ( ).…”

Section: Research Prioritiesmentioning

confidence: 99%

Transition to adulthood and adult health care for patients with sickle cell disease or cystic fibrosis: Current practices and research priorities

Lanzkron

Sawicki

Hassell³

et al. 2018

J. Clin. Trans. Sci.

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IntroductionA growing population of adults living with severe, chronic childhood-onset health conditions has created a need for specialized health care delivered by providers who have expertise both in adult medicine and in those conditions. Optimal care of these patients requires systematic approaches to healthcare transition (HCT). Guidelines for HCT exist, but gaps in care occur, and there are limited data on outcomes of HCT processes.MethodsThe Single Disease Workgroup of the Lifespan Domain Task Force of the National Center for Advancing Translational Sciences Clinical and Translational Science Award programs convened a group to review the current state of HCT and to identify gaps in research and practice. Using cystic fibrosis and sickle cell disease as models, key themes were developed. A literature search identified general and disease-specific articles. We summarized key findings.ResultsWe identified literature characterizing patient, parent and healthcare provider perspectives, recommendations for transition care, and barriers to effective transition.ConclusionsWith increased survival of patients with severe childhood onset diseases, ongoing study of effective transition practices is essential as survival increases for severe childhood onset diseases. We propose pragmatic methods to enhance transition research to improve health and key outcomes.

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Section: Research Prioritiesmentioning

confidence: 99%