The sickle cell disease implementation consortium: Translating evidence‐based guidelines into practice for sickle cell disease

DiMartino, Lisa; Baumann, Ana A.; Hsu, Lewis L.; Kanter, Julie; Gordeuk, Victor R.; Glassberg, Jeffrey; Treadwell, Marsha; Melvin, Cathy L.; Telfair, Joseph; Klesges, Lisa M.; Wun, Ted; Shah, Nirmish; Gibson, Robert W.; Hankins, Jane S.

doi:10.1002/ajh.25282

Cited by 58 publications

(76 citation statements)

References 20 publications

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“…Only a few NBS programs have established activities focused on policy development and system change [47]. Despite the recently published NHLBI evidence-based clinical standards of care for SCD, the available preventative and therapeutic interventions are not reaching the affected individuals [48].…”

Section: Challenges Of Nbs For Scdmentioning

confidence: 99%

“…Despite the recently published NHLBI evidence-based clinical standards of care for SCD, the available preventative and therapeutic interventions are not reaching the affected individuals [48]. A framework for widespread application of the NHLBI guidelines, using implementation science methods, has been proposed to close the "quality gap" [47].…”

Section: Challenges Of Nbs For Scdmentioning

confidence: 99%

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Newborn Screening for SCD in the USA and Canada

El-Haj

Hoppe

2018

IJNS

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Sickle cell disease (SCD) encompasses a group of inherited red cell disorders characterized by an abnormal hemoglobin, Hb S. The most common forms of SCD in the United States and Canada are identified through universal newborn screening (NBS) programs. Now carried out in all fifty U.S. states and 8 Canadian provinces, NBS for SCD represents one of the major public health advances in North America. The current status of NBS programs for hemoglobinopathies and the screening techniques employed in many regions worldwide reflect in large part the U.S. and Canadian experiences. Although the structure, screening algorithms and laboratory procedures, as well as reporting and follow up, vary between NBS programs, the overall workflow is similar. The current review summarized the historical background, current approaches, and methods used to screen newborns for SCD in the United States and Canada.

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Section: Challenges Of Nbs For Scdmentioning

confidence: 99%

Section: Challenges Of Nbs For Scdmentioning

confidence: 99%

Newborn Screening for SCD in the USA and Canada

El-Haj

Hoppe

2018

IJNS

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“…In 2016, the NHLBI funded eight centers across the United States to participate in the Sickle Cell Disease Implementation Consortium (SCDIC) and to establish a longitudinal registry incorporating objective healthcare data with clinical and PROs 25 . The purpose of this study is to provide a baseline evaluation of the SCDIC registry PROs (pain impact, sleep impact, social functioning, emotional distress, depressive symptoms, tiredness, and cognitive function) and identify associated demographic and clinical (ie, disease and treatment) characteristics in a large, multi‐site cohort of adults with SCD.…”

Section: Introductionmentioning

confidence: 99%

Patient‐reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium

et al. 2020

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Understanding patient experiences, quality of life, and treatment needs in individuals with sickle cell disease (SCD) is essential in promoting health and well‐being. We used measures from the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ‐Me), Patient Reported Outcomes Measurement Information System (PROMIS), and Quality of Life in Neurological Disorders (NeuroQol) to evaluate pain impact, sleep impact, social functioning, depressive symptoms, tiredness, and cognitive function (collectively, patient reported outcomes [PROs]) and to identify associated demographic and clinical characteristics. Participants (n = 2201) between 18 and 45 years were recruited through the eight Sickle Cell Disease Implementation Consortium (SCDIC) sites. In multivariate models, PROs were significantly associated with one another. Pain impact was associated with age, education, employment, time since last pain attack, hydroxyurea use, opioid use, sleep impact, social functioning, and cognitive function (F = 88.74, P < .0001). Sleep impact was associated with household income, opioid use, pain impact, social functioning, depressive symptoms, and tiredness (F = 101.40, P < .0001). Social functioning was associated with employment, pain attacks in the past year, autoimmune/inflammatory comorbidities, pain impact, sleep impact, depressive symptoms, tiredness, and cognitive function (F = 121.73, P < .0001). Depressive symptoms were associated with sex, sleep impact, social functioning, tiredness, and cognitive function (F = 239.51, P < .0001). Tiredness was associated with sex, education, sleep impact, social functioning, depressive symptoms, and cognitive function (F = 129.13, P < .0001). These findings reflect the baseline PRO assessments among SCDIC registry participants. Further research is needed to better understand these outcomes and new targets for interventions to improve quality of life and function in people with SCD.

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“…It uses implementation science to identify and address barriers to quality care for people living with SCD. 6 A list of the consortium's members is included in Appendix E1 (available online at http://www.annemergmed.com). This article reports findings from the quantitative component of the patient needs assessment and provider ED survey conducted by the SCDIC.…”

Section: Methodsmentioning

confidence: 99%

“…To address this limitation, the National Heart, Lung, and Blood Institute (NHLBI)-funded Sickle Cell Disease Implementation Consortium (SCDIC) examined the demographic, socioeconomic, and social characteristics of patients living with SCD in health care institutions across the country. 6 The information from this needs assessment highlights some of the disparate perspectives of patients with SCD receiving care and the emergency physicians and nonphysician providers who treat them. By examining the different perceptions patients and providers may have toward ED care, we hope to gain better insight into barriers to optimal ED management and health care gaps leading to high ED utilization.…”

Section: Introductionmentioning

confidence: 99%

A Survey-Based Needs Assessment of Barriers to Optimal Sickle Cell Disease Care in the Emergency Department

Linton

Goodin

Hankins

et al. 2020

Annals of Emergency Medicine

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Study objective: Guided by an implementation science framework, this needs assessment identifies institutional-, provider-, and patient-level barriers to care of sickle cell disease (SCD) in the emergency department (ED) to inform future interventions conducted by the multicenter Sickle Cell Disease Implementation Consortium. Methods: The consortium developed and implemented a validated needs assessment survey administered to a cross-sectional convenience sample of patients with SCD and ED providers caring for them. In total, 516 adolescents and adults with SCD and 243 ED providers from 7 and 5 regions of the United States, respectively, responded to the ED care delivery for SCD survey. Results: Survey results demonstrated that 84.5% of respondents with SCD have an outpatient provider who treats many patients with SCD. In the ED, 54.3% reported not receiving care fast enough and 46.0% believed physicians did not care about them and believed similarly of nurses (34.9%). Consequently, 48.6% of respondents were "never" or "sometimes" satisfied with their ED care. Of surveyed ED providers, 75.1% were unaware of the National Heart, Lung, and Blood Institute recommendations for vasoocclusive crises, yet 98.1% were confident in their knowledge about caring for patients with SCD. ED providers identified the following factors as barriers to care administration: opioid epidemic (62.1%), patient behavior (60.9%), crowding (58.0%), concern about addiction (47.3%), and implicit bias (37.0%). Conclusion: The results underscore that many patients with SCD are dissatisfied with their ED care and highlight challenges to optimal care on the practice, provider, and patient levels. Exploring these differences may facilitate improvements in ED care.

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The sickle cell disease implementation consortium: Translating evidence‐based guidelines into practice for sickle cell disease

Cited by 58 publications

References 20 publications

Newborn Screening for SCD in the USA and Canada

Newborn Screening for SCD in the USA and Canada

Patient‐reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium

A Survey-Based Needs Assessment of Barriers to Optimal Sickle Cell Disease Care in the Emergency Department

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