Motivators and Barriers to Physical Activity among Youth with Sickle Cell Disease: Brief Review.

PURPOSE: Health disparities for minority groups include a low rate of physical activity and underserved urban minority youth with chronic disease are among the least active population segments, as exemplified by sickle cell disease (SCD). "Exercise prescriptions" for youth with chronic diseases need to be evidence based and align with psychologic motivators and barriers. This scoping review sought evidence for psychosocial motivators or barriers to physical activity (PA) in youth with SCD and other chronic disease that could be relevant to SCD. METHODS: Five databases were searched for studies on urban minority youth published between 2009 and 2022. RESULTS: Keyword searching yielded no papers on SCD and PA motivation and barriers. Adding health-related quality of life (HRQL) in SCD found eleven relevant papers. Widening the search to chronic disease in minority youth resulted in a total of 49 papers. Three thematic categories and seven sub-themes emerged. PA barriers added by chronic disease include fear of triggering disease complications, negative relationships due to disease limitations on performance in sports, and lack of suitable environment for PA that accommodates the chronic disease. PA motivators are similar for youth without chronic disease: self-efficacy, autonomy, positive relationships with peers and parents and coach/teacher. CONCLUSION: Direct descriptions of PA motivations and barriers to PA in SCD are limited to fatigue and fear of sickle vaso-occlusive pain. The PA barriers and motivators found for urban youth with chronic disease overlap with themes in healthy adolescents from underserved minorities. Community-based interventions could strengthen PA motivators (self-efficacy, autonomy, positive relationships with peers and parents and coach/teacher) but need disease accommodations to overcome the barriers (fear of triggering disease complications, environmental limitations, and negative relationships). Evidence-based exercise prescriptions might incorporate educational modules to overcome disease stigma and misconceptions. Prospective studies of PA motivators and barriers could improve HRQL in SCD.

Paediatric to adult transition care for patients with sickle cell disease: a global perspective.

Sickle cell disease is a life-threatening inherited condition designated as a public health priority by WHO. Increased longevity of patients with sickle cell disease in high-income, middle-income, and low-income countries present unprecedented challenges for all settings; however, a globally standardised solution for patient transition from paediatric to adult sickle cell disease health care is unlikely to address the challenges. We established a task force of experts from a multicountry (the USA, Europe, Middle East, and Africa) consortium. We combined themes from the literature with viewpoints from members of the task force and invited experts to provide a global overview of transition care practice, highlighting barriers to effective transition care and provide baseline recommendations that can be adapted to local needs. We highlighted priorities to consider for any young person with sickle cell disease transitioning from paediatric to adult health care: skills transfer, increasing self-efficacy, coordination, knowledge transfer, linking to adult services, and evaluating readiness (the SICKLE recommendations). These recommendations aim to ensure appropriate benchmarking of transition programming, but multisite prospective studies are needed to address this growing public health need.