Background: Acute painful episodes are a common complication in patients with sickle cell disease (SCD), often leading to emergency department visits and hospital admissions. How-ever, the severity and frequency of pain episodes are often underestimated in this population due to their recurrent nature and the perception of parents and healthcare providers. Under-standing the predictors and perception of pain among patients and providers is crucial for effective management of the condition.
Objective: The objective of this study was to determine the predictors of pain and explore the perception of severe pain among SCD patients at Bugando Medical Center (BMC) in Tanzania.
Methodology: This mixed-methods study employed a quantitative prospective cross-sectional design to determine the prevalence of severe pain among SCD patients. The study also utilized qualitative in-depth interviews to explore the perception of severe pain experienced by SCD patients, as reported by the patients themselves, their parents, and healthcare providers. The study was conducted at BMC, a hospital-based setting. A structured questionnaire was used to collect quantitative data from 72 SCD patients, while in-depth interviews were conducted with 5 SCD patients, 5 parents, and 5 healthcare providers who provided their in-formed consent to participate. Qualitative data were recorded, transcribed, translated, and analyzed using SPSS 25.
Results: The study enrolled 77 patients with sickle cell disease (SCD) from the clinic at BMC. Among the participants, the majority were female (54.5%) with a mean age of 6.49 years. Children under 5 years constituted the largest age group (46.8%). In terms of education, a significant portion of participants had not started schooling (28.6%). Parents were the primary informants (94.8%). Pain was highly prevalent among the participants, with 98.7% experiencing SCD associated pain. The severity of pain varied, with 39.0% reporting severe pain, 11.7% moderate pain, and 48.1% mild pain. The duration of pain episodes ranged from 1 to 7 days, and the number of hospital admissions due to pain varied among the participants. Qualitative interviews provided valuable insights into the challenges and impact of pain from the perspectives of healthcare providers, parents, caregivers, and children with SCD. They discussed the difficulties in assessing and treating pain, the emotional and psychological dis-tress caused by pain for both patients and their families, and the long-term effects of chronic pain on patients' lives.
Conclusion: This study highlights the importance of early diagnosis and comprehensive care for patients with sickle cell disease (SCD), particularly children under 5 years old. The prevalence of pain in SCD patients is significant, emphasizing the need for effective pain management strategies and comprehensive healthcare. Further research should explore genetic factors influencing pain perception and the impact of socio-demographic characteristics on disease severity. Family-centered care and support for patients and caregivers are crucial. Recommendations include early diagnosis, improved pain management, genomic research, family-centered care, and health professional education. Implementing these recommendations can enhance SCD management and patient outcomes.