Symptom Burden in Long-Term Hematopoietic Cell Transplantation (HCT) Survivors

Introduction: HCT survivors are at risk of elevated symptom burden. We examined demographic and treatment factors that might predict six long-term symptoms: cancer-related distress, depression, insomnia, fatigue, pain, and physical limitations.

Method: Four invitations to participate were sent by email to HCT survivors on the BMT InfoNet listserve, a patient resource and advocacy site. Eligibility criteria included >18 years old, more than two years post-HCT, without a recurrence or second cancer in the prior two years, without severe depression, able to communicate in English, and with internet and email access. Measures were the Cancer and Treatment Related Distress scale, the Symptom Checklist-90-R depression, the Insomnia Symptom Questionnaire, the Fatigue Symptom Inventory, the Brief Pain Inventory, and the Short Form-36 physical function scale. Standardized cutoffs were used for each measure to determine if participants had symptoms. A sum was computed for a potential range of scores (0-6).

Results: Of 493 registered survivors, 386 (78%) were eligible. Participants were from the U.S. (94%, N=361) and 12 other countries, treated at 136 centers, largely Caucasian and non-Hispanic (95%), on average 9 years post-HCT (SD=6, range 2-33); 70% received allogeneic HCT, 20% were receiving treatment for chronic graft versus host disease (cGVHD). Mean age was 54 (SD=12, range 19-76). Participants with elevated scores on at least one symptom comprised just over half of the sample (57%) and 27% reported 3 or more symptoms (N=105). The least commonly endorsed symptom was pain (11%) and the most common was fatigue (41%) with the other four symptoms in the 24-26% range. Multivariate logistic regression was used to analyze predictors with a cutoff of >3 symptoms. Participants currently on medication for cGVHD (OR=2.32, P=.003) and females (OR=1.72, P=.04) were more likely to report 3 or more symptoms. There was a reduced likelihood of reporting 3 or more symptoms for every 5 years post-treatment (OR=.72, P=.008) and for participants with incomes more than $60,000 per year (OR=.59, P=.04).

Discussion: Risk for long-term symptoms after HCT was associated with ongoing cGVHD treatment, being female, as well as shorter time since transplant and lower income. Future research needs to examine how treatment and demographic factors interact as either risk or protective factors for symptom burden and identify strategies to reduce symptoms.