ORIGINAL ARTICLE
Quality of life trajectories during the first year following hematopoietic
cell transplantation: an inception cohort study
Gerald M. Devins
1,2
&
Kenneth Mah
1
&
Hans A. Messner
1,2
&
Anargyros Xenocostas
3,4
&
Lise Gauvin
5
&
Jeffrey H. Lipton
1,2
Received: 13 January 2017 /Accepted: 16 January 2018 /Published online: 8 February 2018
#
Springer-Verlag GmbH Germany, part of Springer Nature 2018
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.
Keywords Cancer
.
Distress
.
Hematopoietic cell transplantation
.
Oncology
.
Patient-reported outcomes
.
Quality of life
Hematologic cancers and aplastic anemia are life-threatening
and physically devastating, often requiring intense, risky treat-
ments. Hematopoietic cell transplantation (HCT) for these
disorders introduces the threat of death, possible treatment
failure, and psychosocial stressors (e.g., dependencies, unem-
ployment, financial hardship, family impact, changing social
relationships) [1]. Many report compromised quality of life
(QOL) [2].
A growing literature documents QOL following HCT.
Longitudinal studies track people from pretreatment to long-
term post-treatment. Results are consistent: QOL deteriorates
significantly after treatment begins and reaches its lowest dur-
ing isolation and recovery (days 30–100) [3, 4]; it returns to
near baseline by 1–3years[3, 5]. Investigators interpret this to
indicate a return to normal [5, 6], but this is debatable.
First, most studies focus only on health-related QOL.
Although informative, these instruments emphasize symp-
toms, side effects, distress, and problems attributable to dis-
ease and treatment (e.g., physical and social functioning). The
absence of problems does not, however, produce high QOL.
Second, QOL comprises positive outcomes, such as the fol-
lowing: (a) participation in activities that give purpose and
meaning to life [7, 8], (b) positive mood states (e.g., happi-
ness, satisfaction) [9], and (c) positive self-percepts (e.g., self-
esteem) [10]. Longitudinal HCT studies do not typically in-
corporate these outcomes. Finally, the baseline QOL to which
* Jeffrey H. Lipton
jeff.lipton@uhn.ca
1
Princess Margaret Cancer Centre, Toronto, ON, Canada
2
University of Toronto, Toronto, ON, Canada
3
London Health Sciences Centre, London, ON, Canada
4
University of Western Ontario, London, ON, Canada
5
Université de Montréal, Montreal, QC, Canada
Supportive Care in Cancer (2018) 26:2379–2386
https://doi.org/10.1007/s00520-018-4059-7
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