Currently, hematopoietic stem cell transplant (HCT) is the only treatment for sickle cell disease (SCD) with a curative intent. A qualitative study using semi-structured interviews of patient-caregiver dyads and two focus group sessions of adult long-term survivors of HCT has found that participants were satisfied with their decision to pursue HCT.
The objective of the study was to determine patients’ and caregivers’ knowledge of HCT, the factors influencing the decision to pursue HCT, their experiences and the impact of a successful HCT on their daily living. Children’s Healthcare of Atlanta researchers enrolled eleven patient-caregiver dyads (n=6, female patients, n=10, mothers) in the qualitative interviews, and focus groups with five (n=2, females) and seven (n=3, females) participants in each group.
The study found that the major influential factors to pursue HCT included the unpredictable onset of SCD complications and the need to manage those complications on a regular basis. Other factors included:
- Progression of disease-related complications
- The long-term health consequences of SCD-related complications
- Availability of a matched donor
- Education received from transplant physicians
The researchers noted that although patients and caregivers had to deal with the complexity of the HCT process and transplant-related morbidities, participants were satisfied with their decision and expressed no decisional regrets.
The researchers concluded that understanding the key influential factors in decision-making and the impact HCT has on patients and their families “will generate crucial insights that can guide the care of future patients and research studies.”