Abstract
Introduction: Sickle cell disease (SCD) is a disabling condition that affects about one out of every 500 African American births in the United States. Children and adolescents with SCD have high rates of school absenteeism and poor academic achievement, yet there are very few studies that have investigated the impact of SCD on adult patients’ academic achievement. Since SCD mostly affects individuals of African descent, the possible risk factors for poor academic achievement and school absenteeism are an intricate combination of disease, demographic, and socio-economic variables. Potential associates of poor academic performance and school absenteeism in adults with SCD include health-related (pain frequency and intensity, health-care utilization), psychosocial (support system, coping mechanism), and poverty (many with SCD have low socioeconomic status). The goal of this study is to compare SCD patients’ academic achievement and school absenteeism with their unaffected siblings.
Patients and Methods: Forty adult SCD patients (28 hemoglobin SS, 8 hemoglobin SC, 1 Sβ0 and 3 Sβ+; age: median = 29, range 19-56 years; sex: 20 males, 20 females) completed questionnaires relating to their academic performance. Patients on chronic transfusion therapy and those with other disabling conditions unrelated to SCD were excluded. Surveys, gathered during routine clinic visits, assessed demographics, use of hydroxyurea, current school status, highest grade completed, average number of school days missed per different time periods, average number of exams missed per school year, academic goal, and academic satisfaction. The survey also asked the patient to provide the academic achievement information for a healthy sibling, if they had a sibling within five years of age. Additional clinical measures were gathered by chart review. These included number of days in the health care facilities for acute illness and for routine clinic appointments in the previous year, and SCD-related laboratory and tests results.
Results: Twenty-three out of forty patients (57.5%) were on hydroxyurea therapy and 24/40 (60%) had 3 or more hospitalizations in the previous one year. Twenty-seven (68%) of patients reported missing at least one important exam each year. Thirty-four of the forty (85%) SCD patients reported missing school on average once per week while this is true of 8/40 (13%) of their healthy siblings (p < .001, all patient/sibling comparisons tested by McNemar’s Exact (binomial) test). Six out of forty SCD patients (15%) are college graduates as compared to 14/40 (35%) of their healthy siblings (p < .001). Twenty-one of the 34 SCD patients (62%) who are not college graduates reported that they had some college education. Six out of forty SCD patients (15%) are currently in school. Five out of forty (33%) SCD patients compared with 8/40 (43%) siblings have GED or less education (not statistically different, p= .55). Nineteen (48%) of the patients reported that they were not satisfied with their academic achievement.
Conclusions: School absenteeism and poor academic achievement are profound for adult patients with SCD. There is a significant difference in the school absenteeism between SCD patients and their healthy siblings. It is important to note that 62% of patients who are not college graduate reported to have had some college education; disability accommodations seem very likely to assist higher-education goals. Our future studies will focus on developing specific interventions that may improve academic support and accommodation of SCD patients. This will certainly require collaboration between patients, families, medical providers, and educational institutions.
Disclosures
No relevant conflicts of interest to declare.
Health Care Transitions for Children with Sickle Cell Disease: Interventions, Perspectives of Health Care Providers and Caregivers
