Health‐Related Quality of Life in Adult and Pediatric Survivors of Hematopoietic Stem Cell Transplantation

Can we agree on patient-reported outcome measures for assessing hematopoietic cell transplantation patients? A study from the CIBMTR and BMT CTN

“…In fact, virtually all recent reviews addressing PROs in HCT point out the limitations in comparing studies due to heterogeneity in the measures used, but to date no collaborative groups have adopted proactive strategies to address this issue in a definitive manner. 2,7,10,12 An additional problem, highlighted by Pidala et al, 9 is that although some of the PRO measures used are specific for the HCT population, many were designed for the general population. This leads to the incorporation of multiple measures within a single study to address both HCT-specific issues and also cover more general concerns.…”

“…In addition to survival, the American Society of Clinical Oncology recognizes the importance of HRQoL. 1 There is general agreement that using PROs to assess HRQoL is the gold standard: accuracy and completeness are enhanced when patients report on their health status directly, 2 physicians frequently overestimate HRQoL compared with patients' self-reports 3 and parents underestimate the HRQoL of their children. 4,5 There are collateral benefits too.…”

Predictors of health‐related quality of life over time among pediatric hematopoietic stem cell transplant recipients

“…The few studies in pediatric HSCT have found varied HRQOL trajectories; however, some consistencies have been documented. Specifically, compromised functioning is evident prior to and soon after transplant, with improvements in HRQOL starting between 4 and 6 months after HSCT …”

“…Specifically, compromised functioning is evident prior to and soon after transplant, with improvements in HRQOL starting between 4 and 6 months after HSCT. [7][8][9] Given the variable impact of HSCT on individual patients and families, past research has sought to identify predictors of HRQOL after transplant. A recent review of the literature 10 identified several demographic and medical risk factors for poor HRQOL after HSCT, including older age, lower socioeconomic status (SES), allogenic transplant, and unrelated donor status.…”