https://orcid.org/0000-0002-4371-7525
Abstract
Purpose
There is little research on care-seeking preferences during active pain crises for sickle cell disease (SCD) patients and their caregivers. The objective of this study was to identify relevant, patient or caregiver narratives of the pain crisis experience, to understand the factors that contribute to care-seeking during a pain crisis, and to identify preferences when making care-seeking decisions during a pain crisis.
Patients and Methods
Qualitative semi-structured interviews were conducted with Canadian residents with a self-reported SCD diagnosis, who were either ≥18 years of age or an adolescent between the ages of 12–18. Interviews were hosted virtually, audio-recorded, and transcribed verbatim.
Results
A total of 23 individuals participated (74% female; 26% male), including six adolescents with parent dyads and 11 adults. Almost all (N = 21, 91.3%) participants were Black/African American. Participants mentioned many factors that influenced care-seeking decisions, mainly the symptom and pain experience; institutional factors (waiting time, the presence of and adherence to treatment guidelines, and the empathy or racial bias felt from medical staff); and subject-level factors (age and a flexibility in daily responsibilities).
Conclusion
This study identified important institutional and subject-level considerations involved in care-seeking decisions. Most importantly, this study highlights the racial stigma faced by many patients when care-seeking in the ER and the lack of care protocol implemented, which hinders care-seeking in a dedicated medical facility. From the patient perspective, these are clear gaps to fill to encourage patients to seek and receive the care they deserve.
Compliance with Ethics Guidelines and Informed Consent
This study was approved by Versiti (formerly Salus), of Austin, TX. Given the non-interventional nature of this qualitative study, no medical emergencies were anticipated as part of this research. Study objectives and methods of this study were explained to the participants during recruitment and verbal informed consent was obtained by all the participants at the start of the interview, before data collection. All verbal permissions confirming consent were audio-recorded from all participants and included in the transcription. All participants were informed that their personal information would remain anonymous in all written reports or publications. All participants were assured they could withdraw from the study at any time without impacting their treatment or medical care. No participants ended their participation or withdrew from the study. We confirm all procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1964, as revised in 2013.
Author Contributions
All named authors meet the International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this manuscript, take responsibility for the integrity of the work as a whole, and have given final approval to the version to be published.
Disclosure
Neha Durgam, Hannah Lewis, and Triza Brion are employed by ICON plc, of whom were commissioned by Pfizer Canada to perform the study and develop this manuscript. Chantal Cadieux and Mark Lundie are employees of Pfizer. Biba Tinga and Wilson Sanon are affiliated with the Sickle Cell Disease Association of Canada and the Association d’Anémie Falciforme du Québec and aided in patient recruitment. The authors report no other conflicts of interest in this work.