Researchers have found the feasibility of collecting data from children with sickle cell disease (SCD) on pain, patient-reported outcomes, quality of life, and pain sensitivity before and after hematopoietic cell transplantation (HCT) possible but difficult.

The study, published in Pediatric Blood & Cancer, found the data collection to be feasible but that it could add to the patient burden in the context of HCT.

“There is limited understanding of pain, psychological comorbidities associated with pain and HRQoL [health-related quality of life] following transplantation for SCD,” the authors wrote. “This study presents novel and unique contributions to investigating outcomes after HCT for SCD by the simultaneous use of multiple modalities of pain assessment including quantitative, qualitative, and experimental pain sensitivity methods to offer a comprehensive assessment of participant pain experience.”

The research team conducted an observational cohort study and enrolled a convenience sample of 10 pediatric participants (median age, 13.5 years) with sickle cell anemia between April 2017 and November 2020. Eight patients completed the study. Data were collected at 5 timepoints, 1 before HCT and 4 after, with the last collection 2 years post-HCT.

Read more about SCD comorbidities

The patients completed several questionnaires on pain and pain-related outcomes, psychological aspects, functioning, and quality of life, and they maintained an electronic pain diary and participated in an interview at each time point.

The results revealed that although conducting the surveys and interviews was feasible, there was a notably increased burden on the participants, given that pre- and post-HCT care is already intensive and the follow-up is of long duration. The results were heterogeneous and, because of the small sample size, firm conclusions could not be made.

The authors emphasize the need for remote data collection in this type of intervention to reduce the burden on patients as well as to minimize data loss over the later time points.


Bakshi N, Astles R, Chou E, et al. Multimodal phenotyping and correlates of pain following hematopoietic cell transplant in children with sickle cell disease. Pediatr Blood Cancer. Published online November 2, 2022. doi:10.1002/pbc.30046