Mental Health Symptoms, Quality of Life and Barriers to Accessing Health Care in Sickle Cell Disease

Individuals with sickle cell disease (SCD) face a number of barriers as they attempt to access timely and appropriate health care. We previously reported that adult and pediatric patients with SCD differed on some barriers reported, with adults citing more barriers related to insurance and provider knowledge and attitudes. Patients' emotional status, including worry, frustration and anger, were also reported barriers to accessing health care. However, there has been limited research formally assessing mental health symptoms as potential barriers to accessing health care in SCD. Objective: To investigate the relation between mental health symptoms, quality of life and reported barriers to accessing healthcare. We hypothesized that 1) mental health symptoms would be predictive of reported barriers, for adults with SCD compared with children, and 2) quality of life would be inversely related to the number of reported barriers, for adults and children. Methods: 112 patients with SCD were enrolled in a cross sectional study. Pediatric patients and their parents, and adults with SCD completed screening measures of depression (Patient Health Questionnaire-9 or Children's Depression Inventory) and anxiety (Generalized Anxiety Disorder- 7 or Multidimensional Anxiety Scale for Children-10) and were categorized with no, mild, moderate or severe symptoms. They also completed quality of life measures (SF 36v2® or PedsQL®) and a validated checklist of barriers to accessing healthcare for SCD. Results: Participants were 35 children (M age 9.5, 1– 17 years) and their parents, and 77 adults (M age 31.2, 18 – 68 years); 53% female; 75% African American; 71% diagnosed with Hgb SS. Sixty one percent of adults reported moderate to severe depressive symptoms, compared with 4% of children (p <.001). Thirty-six percent of adults reported moderate to severe symptoms of anxiety, compared with 12% of children (p <.05). Adults reported significantly worse quality of life in the Physical (M =53.0, SD =23.7) and Mental Health (M =49.4, SD =23.2) domains compared with children (Physical M =65.6, SD =21.4, p <.05 and Mental Health M =66.0, SD =17.9, p <.01). In regression analyses, we found that, with gender and hemoglobin type controlled for, depression was predictive of number of barriers faced for adult (R² =.27, β = 3.57 ±.88, n = 74) but not pediatric patients (R² =.26, β = 5.68 ± 2.54, n = 26). Anxiety was predictive of number of barriers faced for adults (R² =.28, β = 3.99 ±.94, n = 75) but not pediatric patients (R² =.13, β = 2.13 ± 1.96, n = 26). Greater number of barriers faced was predictive of worse quality of life in the Mental Health domain for both adults and pediatrics, controlling for gender and hemoglobin type (R² =.19, β = −.98 ±.26, n = 73 for adults and R² =.28, β = −1.06 ±.36, n = 33 for pediatrics). In the Physical domain, greater number of barriers faced was predictive of worse quality of life for adults but not pediatrics, controlling for gender and hemoglobin type (R² =.18, β = −.97 ±.26, n = 73 for adults and R² =.15, β = −1.03 ±.46, n = 33 for pediatrics). Conclusion: Adults with SCD reported a higher prevalence of moderate to severe symptoms of depression and anxiety, compared with children with SCD and the general African American population. Mental health symptoms were predictive of difficulties with accessing health care for adult more so than pediatric patients. There is an urgent need to address barriers to health care for patients with SCD; to prevent morbidity in pediatrics that may contribute to impaired quality of life in adulthood; and to improve mental health services available to adults in particular.

No relevant conflicts of interest to declare.