Pain Attitudes in Adults with Sickle Cell Disease: A Mixed Methods Study

Background: Sickle cell disease (SCD) affects over 100,000 people in the United States and about 20 million people worldwide. It is complicated by a spectrum of micro- and macrovascular complications, most commonly pain or a vaso-occlusive crisis. The episodic pain can be unpredictable and debilitating, affecting quality of life. In both pediatric and adult patients with SCD, those with more frequent chronic pain report more frequent depressive symptoms, more frequent hospital admission, and more significant functional disability.

A crucial factor that affects quality of life is self-efficacy defined as one's ability to engage in behaviors resulting in improve health outcomes and quality of life (Al Raqaishi, et.al.; 2022). Prior research has shown poor self-efficacy was negatively correlated with the number of sickle cell crises per year. A major influencer of self-efficacy among SCD patients is stigma, a social concept that leaves a person with SCD vulnerable to negative evaluation from others. Studies have suggested that stigma might cause a delay in health seeking behavior resulting in lower self-efficacy and poorer quality of life in patients with SCD.

This mixed methods pilot study sought to further explore attitudes and beliefs about the relationship between pain, discrimination, and stigma in adults with sickle cell disease. Additionally, participants were asked to evaluate a group intervention curriculum currently used for adults with chronic pain. After adapting this curriculum to be SCD specific, we plan to test its efficacy for chronic pain in adults with SCD.

Methods: Thirteen adult participants with SCD were recruited from the Center for the Special Health Care Needs at ChristianaCare Wilmington, DE during a routine clinic visit. After informed consent was obtained, participants were interviewed by the research assistant over Zoom, using a standardized interview script. Interviews were recorded and stored securely. Surveys were completed via a secure RedCap link. Survey responses were analyzed, and descriptive statistics were performed. Interviews were transcribed using Microsoft Word transcription tool and reviewed for accuracy. Analysis was done using the Rapid and Rigorous qualitative Data Analysis (RADAR) technique; three coders were involved in the process to assure intercoder-reliability.

Results: After analysis with RADAR, five themes and twenty-six codes were developed; thematic saturation was reached (Table 1). Representative quotes from the key informant interviews were identified for each theme and code. Survey responses were tabulated (Table 2- in progress).

Discussion: Review of the codes identified in the Key Informant interviews revealed most participants endorsed a connection between their emotions and pain. Most described at least one experience of racism or discrimination in the health care setting and identified perceived lack of clinician knowledge about SCD as a barrier to appropriate care. These data and participant evaluation of the current chronic pain curriculum will be used to develop a SCD-specific curriculum that will be piloted in future work.

Guarino:Novartis: Consultancy. Lanzkron:Takeda: Research Funding; CSL-behring: Research Funding; HRSA: Research Funding; Novartis: Research Funding; GBT: Research Funding; Imara: Research Funding; Glycomimetics: Consultancy; Novartis: Consultancy, Research Funding; Pfizer: Consultancy, Current equity holder in private company; Novo Nordisk: Other: Adjudication committee; bluebird bio: Other: Adjudication committee, Research Funding; Teva: Current equity holder in private company; PCORI: Research Funding.