Cancer and Treatment Distress (CTXD) and Confidence in Survivorship Information (CSI) Trends in Older (≥60 Years) Allogeneic Hematopoietic Cell Transplantation (AlloHCT) Survivors

Background:

AlloHCT survivors generally report higher rates of cancer- and treatment-related distress compared to the general population, although data on cancer and treatment Distress (CTXD) and Confidence in Survivorship Information (CSI) in older alloHCT recipients are limited. We have reported that older HCT survivors have generally low levels of distress and intermediate-high level of CSI (Al-Mansour et al, abstract submitted to ASH 2021 meeting). In this study, we describe specific distress and CSI concerns reported by older alloHCT survivors and their association with other patient-reported outcomes and transplant-related factors.

Methods:

This cross-sectional retrospective secondary analysis used baseline data from two randomized controlled trials of survivorship interventions in alloHCT recipients enrolled in 18 US transplant centers (combined dataset from survivorship care plan trial [NCT00799461] and internet based self-management intervention trial [NCT01602211]). A total of 181 enrolled patients transplanted from 2003-2014 were ≥60 years of age at alloHCT and were alive and disease-free at ≥1-year post-transplant. All donor and graft types were included in this analysis. Distress was measured by CTXD scale, in which higher values indicate higher levels of distress. Survivorship confidence was based on the CSI questionnaire, in which higher values indicate greater confidence. Health-related quality of life (HQOL) was assessed with the SF-12, with high scores indicating better physical function (PCS) and mental function (MCS). Clinical and sociodemographic variables were summarized in descriptive statistics. Non-parametric test (Wilcoxon rank sum test / Kruskal-Wallis test) was conducted for comparing two or three groups for CTXD/CSI. Spearman correlation and univariate linear regression model were used to evaluate associations between CTXD/CSI and PCS/MCS. Bonferroni correlation was used to adjust for multiple pairwise comparisons within age group at transplant.

Results:

The median age of this older sample at alloHCT was 64 (range 60-81), with the largest proportions non-Hispanic (96%), White (97%), and males (57%). The majority received peripheral blood grafts (88%) from an unrelated donor (65%) for their first (96%) transplant. At the time of the survey, survivors were at a median of 3 years (range 1-9) from alloHCT. Mean CTXD overall score was 0.85 (standard deviation [SD] 0.44). Among CTXD items, highest distress was reported for "low energy" (mean 1.42, SD 0.97) followed by "feeling tired and worn out" (mean 1.32, SD 0.93) and "not being able to do what I used to do" (mean 1.28, SD 0.98), while the lowest distress was reported for "communication with medical people"(mean 0.32, SD 0.66) and "getting information when I need it" (mean 0.39, SD 0.70; Figure 1). Similarly, mean CSI overall score was 1.39 (SD 0.44) in this Among CSI items, information on "disease treated" (mean 1.79, SD 0.41) scored the highest in confidence level followed by "treatment received for transplant" (mean 1.75, SD 0.46); meanwhile, information on "community resources for long-term effects of disease" (mean 1.14, SD 0.72) followed by "strategies for treating long-term physical effects of your treatment" (mean 1.15, SD 0.71) scored the lowest in confidence level (Figure 2). There were negative correlations between CTXD and PCS/MCS (P<0.001) and positive correlation between CSI and PCS/MCS (P<0.001). Different age groups at transplant (<65, 65-<70, vs. ≥70), history of chronic graft-versus-host disease, and enrollment time from transplant (≤2 vs. >2 years) showed no apparent effect on CTXD or CSI overall scores.

Conclusion:

Older alloHCT survivors report low level of cancer- and treatment-related distress and a relatively high level of CSI. Physical and mental function were associated with lower distress and increased CSI. Survivorship intervention needs in older alloHCT recipients include management of fatigue, education on long-term effects, and improving knowledge of and access to resources for long-term recovery and reintegration to society. The CTXD and CSI scales provide opportunities to evaluate and tailor interventions to the needs of older survivors with the potential to improve alloHCT survivorship care for older adults.

Figure 1

View largeDownload slide

Figure 1

View largeDownload slide

Close modal