A comprehensive literature review of patient-reported outcomes for adults with SCD revealed broad categories of the impact of SCD and its treatment on the lives of adults [19]. Categories included pain and pain management, emotional distress, poor social role functioning, diminished overall quality of life, and poor quality of care. Follow-up individual and group interviews with adults with SCD ( n = 122) as well as individual interviews with their providers ( n = 15) revealed findings consistent with the literature review on the major effects of pain on the lives of adults with SCD, interwoven with emotional distress, poor quality of care, and stigmatization [19].
In the present study, our goal was to describe variables associated with physical and mental HRQL in SCD within the context of the recently published comprehensive conceptual model of broad clinical and life effects associated with SCD [19]. The present analysis uses an existing clinical database and evaluates the effects of the relations between clinical complications of SCD, emotional distress, health care utilization, and HRQL. Our model includes barriers to health care that might prevent vulnerable patients from accessing needed health care services. Sociodemographic variables including ethnic and racial minority status and lower socioeconomic status and educational attainment may create barriers to health care for patients with SCD, as they do for individuals with other chronic conditions [20–23]. Over 60% of patients with SCD are on public insurance [24] and can have difficulties with accessing quality health care [25]. Negative provider attitudes and stigmatization when patients are seeking care for acute pain episodes have been highlighted by patients as major barriers to seeking health care [19,26–28]. In a qualitative study, 45 youth with SCD reported that competing school or peer-group activities, “feeling good,” poor patient-provider relationships, adverse clinic experiences, and forgetting were barriers to clinic attendance [29]. Limited research suggests that barriers to accessing health care are associated with poorer HRQL [30,31]; however no studies were identified that directly evaluated the relation between barriers to care and HRQL for populations with SCD.
We hypothesized that clinical complications of SCD, including pain, and barriers to accessing health care would be independently associated with the physical component of HRQL for adult patients with SCD, controlling for demographic variables. Further, we hypothesized that emotional distress, clinical complications of SCD, and barriers to accessing health care would be independently associated with the mental component of HRQL for adult patients with SCD, controlling for demographic variables.
Methods
Patient Recruitment
Participants were 18 years and older and were a subgroup selected from a larger prospective cohort enrolled in the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) funded by the Health Resources and Services Administration (HRSA). As 1 of 7 SCDTDP grantees, our network collected common demographic, disease-related, and HRQL data as the other grantees to examine sickle cell health and health care [32]. Enrollment at our site was n = 115 from birth through adult, with data collection occurring at baseline in 2010 and annually through 2014. Participants were eligible for enrollment if they had any confirmed diagnosis of SCD and if they were seen at any facility treating SCD in the San Francisco Bay Area region. Interpreter services were available where English was a second language; however, no participant requested those services. The data collection site was an urban comprehensive sickle cell center. Participants were recruited through mailings, posted flyers, or were introduced to the project by their clinical providers. The institutional review boards of the sponsoring hospitals approved all procedures. This report describes analyses from the baseline data collected in 2010 and excludes pediatric patients under the age of 18 years, as we developed our conceptual model based on the adult SCD literature.