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Quality of life trajectories during the first year following hematopoietic cell transplantation: an inception cohort study

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Abstract

Background

Allogeneic hematopoietic cell transplantation (HCT) affects quality of life (QOL). Patient-reported outcomes examine symptoms, side effects, distress, and physical and social problems, but positive outcomes have been ignored. This inception cohort study followed people over the first year following HCT to document positive and negative outcomes.

Methods

People with hematologic cancers treated by HCT completed complementary self-report instruments at four milestones: (a) pre-transplant (N = 88); (b) engraftment (N = 80); (c) short-term post-discharge (N = 60); and (d) long-term post-discharge (N = 45). We examined symptoms, side effects, illness intrusiveness, depressive symptoms, positive and negative affect, and self-esteem. We compared QOL in HCT with diverse published values.

Results

QOL deteriorated following HCT. Most variables returned to baseline by short-term post-discharge, but self-esteem and illness intrusiveness required more time. Illness intrusiveness at 1 year post-discharge was higher in HCT than other cancer groups; negative affect, too, was higher, but HCT survivors also reported higher positive affect. HCT and other cancer survivors reported similar depressive symptom levels. Compared to healthy people, HCT survivors reported more severe depressive symptoms, but similar positive and negative affect.

Conclusions

QOL changes dramatically following HCT. People report more interference with valued activities and interests after 1 year than survivors of other cancers, but depressive symptoms are not higher. Positive and negative affect are equivalent to healthy community residents. Continued involvement in psychologically meaningful activities may preserve QOL.

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Funding

This study is funded by the Canadian Institutes of Health Research grant (200203MOP-99309) to G.M. Devins.

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Correspondence to Jeffrey H. Lipton.

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The authors declare that they have no conflict of interest.

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Primary data is under full control of the lead author and available to the journal for full review.

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Devins, G.M., Mah, K., Messner, H.A. et al. Quality of life trajectories during the first year following hematopoietic cell transplantation: an inception cohort study. Support Care Cancer 26, 2379–2386 (2018). https://doi.org/10.1007/s00520-018-4059-7

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  • DOI: https://doi.org/10.1007/s00520-018-4059-7

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