Sickle Cell Virtual Support Group Program for Adults: An Implementation Evaluation.

Sickle cell disease (SCD) is associated with medical and psychosocial challenges. SCD in adulthood is characterized by increased morbidity and mortality, vulnerability, inadequate self-management preparation, and limited social support. This study evaluated the implementation of a virtual support group during the COVID-19 pandemic using an intervention parameters framework evaluation. Participants included six adults living with SCD. Content analysis was conducted for each of the six intervention parameters, and satisfaction scores were summarized. Participants positively evaluated all intervention parameters of the virtual support group. Findings confirmed that a community-engaged intervention supports self-management and establishes key social networks for adult participants.

American Society of Hematology 2019 guidelines for sickle cell disease: cardiopulmonary and kidney disease.

BACKGROUND: Prevention and management of end-organ disease represent major challenges facing providers of children and adults with sickle cell disease (SCD). Uncertainty and variability in the screening, diagnosis, and management of cardiopulmonary and renal complications in SCD lead to varying outcomes for affected individuals. OBJECTIVE: These evidence-based guidelines of the American Society of Hematology (ASH) are intended to support patients, clinicians, and other health care professionals in their decisions about screening, diagnosis, and management of cardiopulmonary and renal complications of SCD. METHODS: ASH formed a multidisciplinary guideline panel that included 2 patient representatives and was balanced to minimize potential bias from conflicts of interest. The Mayo Evidence-Based Practice Research Program supported the guideline development process, including performing systematic evidence reviews up to September 2017. The panel prioritized clinical questions and outcomes according to their importance for clinicians and patients. The panel used the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach, including GRADE evidence-to-decision frameworks, to assess evidence and make recommendations, which were subject to public comment. RESULTS: The panel agreed on 10 recommendations for screening, diagnosis, and management of cardiopulmonary and renal complications of SCD. Recommendations related to anticoagulation duration for adults with SCD and venous thromboembolism were also developed. CONCLUSIONS: Most recommendations were conditional due to a paucity of direct, high-quality evidence for outcomes of interest. Future research was identified, including the need for prospective studies to better understand the natural history of cardiopulmonary and renal disease, their relationship to patient-important outcomes, and optimal management.