While our sample was similar to previous samples in mean age and percentage of women participants, our patients reported significantly higher physical HRQL scores, and a wider range of HRQL scores (eg, 53.6,
SD = 24.1 compared with 39.6, SD = 10.0 [16]). The mean Physical Component Summary score was in fact similar to the general population mean of 50. This may reflect improvements in quality of care and subsequent overall improved patient health and HRQL given that these data were collected in year 2 of the HRSA SCDTDP. As an SCDTDP grantee, we implemented goals to improve coordination of service delivery and to increase access to care. However, it should also be considered that there was a selection bias in our study, in favor of those with better HRQL. Nevertheless, as already noted, our findings are consistent with previous literature with regard to inter-relations between variables, ie, associations between lower physical HRQL ratings and symptoms of depression, older age, and increased ED utilization [15]. Future studies in SCD that directly evaluate reported access to a medical home in relation to HRQL are needed to assess the impact of access to care and care coordination on HRQL ratings.
Our use of a data collection tool that focused on lifetime rather than acute history of complications may have contributed to our failure to find a relation between clinical manifestations and physical HRQL. Further, we were not able to assess the effects of pain separately from other complications, since almost every participant reported a lifetime history of pain. However, our findings were consistent with those of researchers who have found psychosocial and sociodemographic factors, versus clinical manifestations, to be major influences on both physical and mental HRQL for individuals with SCD and other chronic and life-threatening conditions [15, 16, 50]. Our confidence is increased in this finding, given that we were able to verify self-reports of clinical manifestations with our clinical database. Our results contribute to the developing body of knowledge that emphasizes the importance of understanding the broad impact on the lives of adults of living with SCD, not just the physical symptomatology.
There has been limited research on barriers to accessing health care as associated with HRQL for SCD populations. Health care barriers have been identified for ethnic minorities, even within patient-centered medical homes, with minority status moderating the effect of barriers to care on HRQL [30]. Our findings that barriers to health care were correlated with depression and anxiety symptoms, mental HRQL, and greater ED utilization support the need to view SCD care within a biobehavioral framework. Health care provider negative attitudes and lack of knowledge were the most frequently cited barriers for adults in our study, particularly in the context of ED and inpatient care. These findings are similar to other studies that have highlighted the impact of these provider variables on quality of care [26,51]. We were not able to separate out effects of ethnic minority status, given that our patients were predominantly African American.
Contributors to poor HRQL that have been identified in SCD are poverty [42] and public insurance status [49]. While over half of our participants had family incomes of less than $30,000, despite a mean household size of 3 members, we did not find that income contributed to either of our models predicting physical or mental HRQL. Over half of our patients were well educated, which could have moderated the effect of their low incomes, but we did not measure other potential moderators such as active coping and supportive relationships [19]. These analyses were beyond the scope of our existing database, but future studies are needed on such resilience factors and processes. Our adults were predominantly on public insurance and we did find that private insurance status was positively associated with higher ratings of mental HRQL, consistent with other SCD research [49]. Taken together, our findings underscore the importance of considering the interplay between emotional distress, sociodemographic and clinical factors and quality of care in order to address risk factors for poor patient-reported outcomes [52,53].