Development of quality indicators for transition from pediatric to adult care in sickle cell disease: A modified Delphi survey of adult providers

Sobota, Amy; Shah, Nishita; Mack, Jennifer W.

doi:10.1002/pbc.26374

Cited by 33 publications

(30 citation statements)

References 40 publications

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“…AYA in this study were supported by a multidisciplinary team to better understand their health condition and develop their self‐management skills by receiving tailored coaching and in‐person education during clinic appointments. These elements have been highlighted in the literature as key components of a successful transition program . Because the multifaceted, structured transition program and the TN role were implemented simultaneously in August 2014, it is difficult to separate the impact of the TN role on patient outcomes from other components of the model.…”

Section: Discussionmentioning

confidence: 99%

Impact of a transition program with navigator on loss to follow‐up, medication adherence, and appointment attendance in hemoglobinopathies

Allemang

Allan

Johnson

et al. 2019

Pediatric Blood & Cancer

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Background Transition from pediatric to adult care is a period of high risk for loss to follow‐up, morbidity, and mortality in adolescents and young adults (AYA) with hemoglobinopathies. The purpose of this study was to determine whether a transition program with transition navigator (TN) reduced loss to follow‐up and hospitalizations and improved medication adherence and appointment attendance compared with an unstructured transfer. Procedure A retrospective observational study compared all AYA with hemoglobinopathies who turned 18 one year prior to (n = 51) and one year after (n = 61) the initiation of the transition program. Data from one year prior to last pediatric appointment and one year following first adult appointment were collected from each patient. Results The transition program with TN reduced loss to follow‐up from 29% to 7% (P = 0.034). A greater proportion of patients in the transition cohort maintained or improved adherence to hydroxyurea or iron chelation to ≥4 days/week; exposure to the program was independently associated with such improvement (P = 0.047). A trend toward improvement or maintenance of ≥90% attendance to appointments was observed (P = 0.096). Frequency of hospitalization was not significantly different between the two cohorts (P = 0.985). Conclusions A transition program with TN significantly reduced loss to follow‐up, and significantly improved and maintained fair to good medication adherence. Further analysis of economic benefit and patient satisfaction will be conducted.

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Section: Discussionmentioning

confidence: 99%

Impact of a transition program with navigator on loss to follow‐up, medication adherence, and appointment attendance in hemoglobinopathies

Allemang

Allan

Johnson

et al. 2019

Pediatric Blood & Cancer

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“…This may improve the success of the transition of care and foster increased trust in the new provider, an essential aspect to transition. 19,37 Additionally, increased perception of preparedness was associated with higher levels of satisfaction and trust in adult providers.…”

Section: Discussionmentioning

confidence: 99%

“…20,36 Studies in SCD patients specifically have also demonstrated this association between communication and trust, which are essential quality of care indicators associated with a successful transition of care. 19,27 There was a trend towards increased trust in the hematologist, which result from the increased experience those providers have with these complex diagnoses. However, contrary to results from the PISCES study, there was no difference in satisfaction with care when comparing the PCP to the hematologist.…”

Section: Discussionmentioning

confidence: 99%

“…17 Developing a transition plan that addresses key quality indicators such as improving communication between adult and pediatric providers, building trust between patients and new providers, and ensuring long-term follow-up are essential for improved outcomes for this population. 18,19 It is clear that the research focus needs to shift towards new models of care to provide best practices regarding comprehensive care and patient outcomes for this high-risk population. It is unclear is how well SCD patients are currently transitioning to adult health care and how this process impacts the patient-provider relationship as well as future health care utilization.…”

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confidence: 99%

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Utilization, trust and satisfaction with health care in adult sickle cell disease patients

Baskin

Nørd

Canada

et al. 2020

Preprint

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Introduction: Transition from pediatric to adult care for emerging adults with sickle cell disease (SCD) has been challenging due to limited availability of experienced adult providers and patient difficulty navigating the adult health care system. The purpose of this study was to determine among adults with SCD, healthcare utilization and their trust and satisfaction with their health care provider. Methods: We surveyed adult patients greater than 21 years old with SCD previously transitioned from Children's Hospital Los Angeles. Assessments of provider trust and satisfaction were conducted along with health care utilization and the transition experience. Results: Of 31 participants, 61% and 68% identified having an adult primary care provider (PCP) and adult hematologist respectively. Increased satisfaction with care was associated with increased trust in the adult hematologist (r=0.72 p<0.001) and PCP (r=0.76 p=0.001) and improved communication (p< 0.001). Trust in their hematologist was greater than PCP (76.5 vs 64.2, p = 0.058). For SCD complications, 65% of participants visited the ED, 80% of whom had negative experiences including sub-optimal pain management. Regarding transition experience, 55% felt unprepared for adult care. Discussion: More than 30% of adult SCD patients transferred out of pediatric care are not receiving regular hematology care for their SCD, resulting in fragmented medical care. Increased trust in their adult hematologist and clear communication are associated with higher levels of satisfaction with care. These findings will be utilized to develop a transition program to improve patient preparation and build on partnerships with adult providers to improve long-term outcomes. Introduction: Sickle cell disease (SCD) is one of the more common genetic conditions. It is characterized by intermittent exacerbation of vaso-occlusion by sickled red blood cells, leading to complications such as painful crisis, acute chest syndrome, stroke, and premature death. There are approximately 100,000 patients with this disease in the United States and as a result of its genetic predisposition, it disproportionately affects those of African and Hispanic descent. 1,2 With newborn screening, vaccinations, prophylactic antibiotics, and hydroxyurea, the mortality in children with SCD decreased by 68% from 1983 to 2002. 3,4 As a result, more than 90% of patients are living to age 20 and the median survival has increased, now 58 years of age in patients with hemoglobin SS or S-beta thalassemia zero and 66 years of age in hemoglobin SC or S-beta thalassemia plus disease. 5 However, studies have shown that morbidity and mortality increases dramatically in the 18-30 year old population, immediately after patients are transitioned from pediatric to adult centered care. 6,7 Transition of care for patients with rare, genetic conditions, like SCD, whose manifestations start early in childhood has additional layers of complexity due to the limited availability of adult specialists with the necessary domain expertise t...

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“…A Delphi process of HCT experts classified high priority outcome categories for evaluation of HCT practices as individual patient-reported outcomes, health services outcomes, and social functioning outcomes [73], and similar outcomes were proposed for SCD [74]. Patient-reported outcomes for HCT include quality of life [65], satisfaction with care and patient experience, transition skills and readiness assessments, adherence to therapies, and health condition and self-management knowledge and skills.…”

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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Development of quality indicators for transition from pediatric to adult care in sickle cell disease: A modified Delphi survey of adult providers

Abstract: By using these quality indicators chosen by the majority of respondents, we can better develop and evaluate transition programs for young adults with SCD and improve health outcomes for these vulnerable patients.

Cited by 33 publications

References 40 publications

Impact of a transition program with navigator on loss to follow‐up, medication adherence, and appointment attendance in hemoglobinopathies

Impact of a transition program with navigator on loss to follow‐up, medication adherence, and appointment attendance in hemoglobinopathies

Utilization, trust and satisfaction with health care in adult sickle cell disease patients

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

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