Patients with sickle cell disease (SCD) who undergo allogeneic hematopoietic stem cell transplantation (HSCT) may experience considerable physical and psychosocial challenges, according to an article published in the journal Transplantation and Cellular Therapy.
For the purpose of this study, the authors recruited 10 adults with SCD who underwent allogeneic HSCT at least 1 year prior to the study onset.
Each participant was asked to participate in a semi-structured interview and complete a set of 9 Patient Reported Outcomes Measurement Information System (PROMIS) measures including pain interference, physical function, sleep disturbance, fatigue, anxiety, anger, depression, ability to participate in social roles and activities, and satisfaction with participation in social roles.
The interviews were thematically analyzed using MAXQDA software, while PROMIS T scores were summarized with descriptive statistics and compared with reference scores of the general population.
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According to the results, the patients experienced improvements in physical health but still struggled with transplantation-related toxicity, ongoing pain from avascular osteonecrosis, and fatigue. A need for psychological counseling was often identified as a result of frequent emotional struggles during the post-transplantation period. The participants also reported social health improvements, as well as an increased ability to pursue personal life goals.
The mean T scores of all PROMIS measures were in accordance with the normal symptom limits and the reference data of the general population. However, as suggested by the qualitative findings, large variations could be observed among the participants.
Five patients scored within normal ranges on 8 or 9 of the 9 PROMIS measures and 2 patients scored within the mild or moderate symptom range on at least 2 items, whereas the remaining 3 participants scored within mild or moderate impairment symptom limits on 6 out of 9 items.
“Adult SCD allogeneic hematopoietic stem cell transplantation recipients are confronted with a new reality after being cured. Regardless of whether this reality measures up to their expectations or is valued as an improvement, they face challenges that call for awareness,” Dovern and colleagues wrote.
“A deeper understanding of the complex consequences of undergoing a curative treatment on the physical, mental, and social health of adult SCD patients is essential to ensure optimal care.”
Patients with SCD experience a great psychological and physical burden that affects their ability to participate in social, educational, and occupational activities.
Reference
Dovern E, Nijland SJAM, van Muilekom MM, et al. Physical, mental, and social health of adult patients with sickle cell disease after allogeneic hematopoietic stem cell transplantation: a mixed-methods study. Transplant Cell Ther. Published online January 10, 2023. doi:10.1016/j.jtct.2023.01.001
