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

Abstract

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.

Aerobic physical capacity and health-related quality of life in children with sickle cell disease

“…La prise en charge multidisciplinaire et coordonnée de la drépanocytose a nettement amélioré la morbi-mortalité associée à cette maladie au cours des dernières décennies 31,32 Cependant, l'impact de la drépanocytose sur l'activité physique des patients et leur qualité de vie liée à la santé reste problématique. 33,34 En effet, les patients drépanocytaires ont une tolérance à l'effort limitée, dont l'origine est multifactorielle 35,36 : anémie 37,38 , trouble ventilatoire restrictif 39,40 , hypertension pulmonaire pré-capillaire ou post-capillaire 41 , insuffisance cardiaque [42][43][44] (ischémie myocardique, dysfonctionnement systolique et/ou diastolique) ou peur de déclenchement de symptômes liée à l'activité physique 45 . Si quelques études ont évalué l'aptitude physique aérobie chez les enfants drépanocytaires et ses facteurs de limitation, aucune n'a mis en évidence de lien avec la qualité de vie liée à la santé.…”

“…58 Psychometric properties showed reliability, validity, and responsiveness to clinical change over time, including for the French version of the PedsQL. 59,60 The self-reported level of physical activity was assessed by the Ricci and Gagnon questionnaire, composed of 9 items, with a total score ranging from 9 to 45 ([9-18] = physical inactivity; [18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35] = moderate physical activity; [36][37][38][39][40][41][42][43][44][45] = intensive physical activity). 61,62 We also used a sickle cell disease knowledge questionnaire, a non-validated instrument used in patient education in our institution (47 questions, 5 domains, 7 scores, sickle cell knowledge overview score of 70, Appendix 1).…”

“…33,34 Indeed, patients with sickle cell disease have limited exercise tolerance, the origin of which being multifactorial: 36,49 anemia, 37,38 restrictive lung disease, 39,40 precapillary or postcapillary pulmonary hypertension 41 , heart failure (myocardial ischemia, systolic and/or diastolic dysfunction) [42][43][44] , or fear-related barrier to physical activity. 45 Aerobic fitness assessed by cardiopulmonary exercise test (CPET) best reflects physical capacity in children and adolescents with chronic conditions, providing an analysis of cardiac, respiratory, and peripheral exercise limitations. [17][18][19]50 Indeed, maximum oxygen uptake (VO2max) measured by CPET is a predictor of prognosis and HRQoL in various childhood diseases.…”

Diaphragm excursion correlates with performance and ventilation on the 6‐min walk test in children with sickle cell disease

“…Over time, these pulmonary complications can also develop into chronic lung injury and lead to exercise intolerance 4,5 . This complicates the promotion of adequate physical activity to reduce the known cardiometabolic risk factors that affect this population 6 . Thus, a better understanding of the pulmonary mechanisms behind exercise intolerance in children with SCD is needed to create more effective exercise intervention strategies.…”