Insights into the Hospital Experiences of Patients and Caregivers Affected by Sickle Cell Disease in Ontario

Abstract

Abstract Objectives Sickle Cell Disease (SCD) is a group of inherited blood disorders affecting over 6,500 people in Canada with around 3500 residing in Ontario. Despite frequent interactions with healthcare providers (HCPs), individuals with SCD face barriers such as delays, stigma, or discrimination that reduce their willingness to seek care. This study explored experiences of patients or individuals with SCD and caregivers following their hospital encounters and identified factors influencing whether healthcare expectations were met. Methods Between July 2019 and February 2020, we conducted a cross-sectional online survey study using a 46-item questionnaire exploring perspectives following a single Ontario hospital visit. Eligible participants included adults aged 18+ living with SCD or caregivers of an individual with SCD. Data were analyzed via thematic analysis of open-text responses with descriptive statistics for close-ended responses. Results A total of 41 responses were analyzed. 19 individuals reported that their hospital experience met or exceeded expectations (ME), while 22 reported it fell below expectations (BE). The ME group noted shorter times to first analgesia and hospital bed assignment and better pain management by HCPs. Pediatric patients reported better care than adult patients across the same metrics. The ME group described their HCPs as more knowledgeable and responsive, reported less stigmatization, and fewer distressing emotions. Conclusions Overall, we found that timeliness, provider responsiveness, and psychosocial factors strongly influence perceived care quality. Regular evaluation of these factors aligned to established guidelines is necessary to ensure consistent delivery of patient-centered, equitable, and timely care for individuals living with SCD.