Coping Skills, Hospitalizations, and Hopefulness in Youths with Sickle Cell Disease Treated in a Regional Outpatient Comprehensive Pediatric Center

Background/Objectives: Sickle cell disease (SCD) is the most prevalent inherited pediatric hematologic disease. Pain is the most common complaint and primary reason for emergency care. Effective coping is critical to improved quality of life for individuals with SCD and other chronic illnesses. Hope, engendered by provision of comprehensive care, may explain the positive impact of effective coping and improved health outcomes. The relevance of effective coping skills and hope’s impact on repeated hospitalizations and/or length of hospitalization stay (LOS) among adolescents with SCD is considered. A regional, comprehensive pediatric sickle cell center (RCPSCC) provided the services. Methods: Patients with SCD, ages 13 through 21 years seen in a university RCPSCC (URCPCC-SCD), completed surveys: a general scale providing a broad range of positive and maladaptive coping-related issues, and KIDCOPE, a standardized scale measuring pediatric coping strategies. Medical records were reviewed for frequency of hospitalization and length of stay (LOS) for the eight months before study entry. Results: Thirty-four URCPCC-SCD outpatients, mean/median age of 16 years, entered the study, and data were analyzed for 33. All reported some sense of future hopefulness, and almost half reported feeling “tense or wound up” most of the time. Use of avoidant or negative coping strategies in response to daily stress correlated positively with increased LOS. Conclusions: Youths with SCD require effective coping strategies to improve self-efficacy and related hope for brighter futures. Individualized, comprehensive treatment and support to families and individuals at risk for sickle cell crisis are uniquely offered in a URCPCC-SCD. Their contributions to service delivery and clinical outcome are expected to enhance hope, mitigate prolonged hospitalizations, and improve adherence to treatment (N = 268).