Authors: Corinne Evans, Natalie Koskela-Staples, B.A., Elise Turner, M.S., David Fedele, Ph.D., & Vandy Black, M.D.
Faculty Mentor: David Fedele
College: College of Public Health and Health Professions
Introduction: Sickle Cell Disease (SCD), the most common genetic disorder in the U.S., primarily affects youth of African or Latino backgrounds.1 Regular clinic attendance promotes positive health outcomes in pediatric SCD.2 Caregivers of youth with SCD endorse high levels of stress which may disrupt clinic attendance.3 The current study examined whether caregiver coping with stress is associated with clinic attendance in pediatric SCD. Methods: Sixty-three caregivers and youth (Mage = 13.2, 60.3% male) completed the Responses to Stress Questionnaire – Sickle Cell Disease (RSQ-SCD). The RSQ-SCD assesses primary control engagement (PCE), secondary control engagement (SCE), and disengagement coping. We tabulated percent of pediatric hematology appointments attended over the past year via medical chart review. We conducted a regression to examine the relationship between caregiver coping styles and appointments attended. Results: Caregiver coping was characterized as 20.7% PCE, 27.9% SCE, and 12.7% disengagement. 61.1% of appointments were attended, 16.2% were canceled, and 12.2% were no-showed. Caregiver coping did not predict clinic attendance [F(4, 58)=2.114, p=0.091, R2∆=0.040]. Conclusions: Clinic attendance rates in this sample compare to samples in previous literature.3 In isolation, caregiver coping may not be a target for interventions focused on improving adherence to pediatric hematology appointments.
1. Center for Disease Control and Prevention. (2016). Sickle Cell Disease. Retrieved from https://www.cdc.gov/ncbddd/sicklecell/data.html.
2. Crosby, L.E., Modi, A.C., Lamanek, K.L., Guilfoyle, S.M., Kalinyak, K.A., & Mitchell, M.J. (2009). Perceived barriers to clinic appointments for adolescents with sickle cell disease. Journal of Pediatric Hematology and Oncology, 31, 571-576.
3. Cronin, R.M., Hankins, J.S., Byrd, J., Pernell, B.M., Kassim, A., Adams-Graves, P., Thompson, A.A., Kalinyak, K., DeBaun, M.R., & Treadwell, M. (2018). Modifying factors of the health belief model associated with missed clinic appointments among individuals with sickle cell disease. Hematology, 23(9), 683-691.