Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care

Abstract

IMPORTANCE Sickle cell disease (SCD) is the most common inherited red blood cell disorder in the United States, and previous studies have shown that individuals with SCD are affected by multiple health disparities, including stigmatization, inequities in funding, and worse health outcomes, which may preclude their ability to access quality health care. This needs assessment was performed as part of the Sickle Cell Disease Implementation Consortium (SCDIC) to assess barriers to care that may be faced by individuals with SCD. OBJECTIVE To assess the SCD-related medical care experience of adolescents and adults with SCD. DESIGN, SETTING, AND PARTICIPANTS This one-time survey study evaluated pain interference, quality of health care, and self-efficacy of 440 adults and adolescents (aged 15 to 50 years) with SCD of all genotypes and assessed how these variables were associated with their perceptions of outpatient and emergency department (ED) care. The surveys were administered once during office visits by trained study coordinators at 7 of 8 SCDIC sites in 2018. RESULTS The SCDIC sites did not report the number of individuals approached to participate in this study; thus, a response rate could not be calculated. In addition, respondents were not required to answer every question in the survey; thus, the response rate per question differed for each variable. Of 440 individuals with SCD, participants were primarily female (245 [55.7%]) and African American (428 [97.3%]) individuals, with a mean (SD) age of 27.8 (8.6) years. The majority of participants (306 of 435 [70.3%]) had hemoglobin SS or hemoglobin S β 0-thalassemia. Most respondents (361 of 437 [82.6%]) reported access to nonacute (usual) SCD care, and the majority of respondents (382 of 413 [92.1%]) noted satisfaction with their usual care physician. Of 435 participants, 287 (66.0%) reported requiring an ED visit for acute pain in the previous year. Respondents were less pleased with their ED care than their usual care clinician, with approximately half (146 of 287 [50.9%]) being satisfied with or perceiving having adequate quality care in the ED. Participants also noted that when they experienced severe pain or clinician lack of empathy, this was associated with a negative quality of care. Age group was associated with ED satisfaction, with younger patients (<19 vs 19-30 and 31-50 years) reporting better ED experiences. CONCLUSIONS AND RELEVANCE These results suggested that a negative perception of care may be a barrier for patients seeking care. These findings underscore the necessity of implementation studies to improve access to quality care for this population, especially in the acute care setting.

Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies

“…Findings from our needs assessment within our 5-county region mirror needs assessment results from the broader consortium. 51 The SCDIC has prioritized developing an intervention that addresses the challenges identified within the care process domain by directly enhancing provider access to patient individualized care plans in the electronic health record in the ED. Importantly, ED providers will be asked to view a short video that directly challenges bias and stigma in the ED.…”

“…However, our results are consistent with findings from the national sample of adults with SCD who participated in the ASCQ-Me field test, and with results from the SCDIC needs assessment. 33,51 Interviews and surveys are subject to self-report bias and, therefore, may or may not reflect the actual behaviors or thoughts of participants. Confidence is increased in our results given the triangulation of expressed concerns across participant groups and across data collection strategies.…”

<p>Chronic Noncancer Pain Management and Systemic Racism: Time to Move Toward Equal Care Standards</p>

“…[23][24][25][26][27][28][29][30][31][32][33] Unfortunately, recent studies continue to demonstrate that BIPOC patients presenting with painful conditions continue to face disadvantages regarding assessment and treatment in EDs, [34][35][36][37][38] with patient perceptions of this disparity serving as a barrier to even seeking emergency care. 39 Similarly, a 2018 study of traumatically injured individuals requiring emergency medical services (EMS) transport to hospitals found that significantly fewer Black patients received opioids prehospital compared to other ethnic groups. 40 Similar findings were obtained from a more recent study.…”

Improving the Quality of Care for Adolescents and Adults With Sickle Cell Disease—It’s a Long Road

“…In the survey described, participants with severe pain or 4 or more pain episodes in the previous 6 months were much less likely to be satisfied with their scheduled nonacute appointments. 2 In addition, patients with SCD that report experiences of discrimination are 53% more likely to report nonadherence to physician treatment recommendations. 3 Mistrust in health care professionals has been shown to be a mediator of the discrimination-nonadherence relationship.…”