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Hematologic cancersHematOpOietic stem ceLL traNspLaNtatiON

Samara Perez, phD candidate, Department of psychology, mcgill university

Trial Summary: Psychosocial sequelae Devins gm, mah K, gauvin L et al. Quality of life during the first year following bone marrow transplantation: a differentiated analysis. capO 2014, abstract B-274.

This study examined 3 research questions: 1) Does quality of life (QOL) change during the first year following hemato-poietic stem cell transplantation (HSCT)? Do complementary QOL variables (e.g. self-esteem) follow similar trajectories? How do symptoms relate to overall QOL? Using a prospective, longitudinal inception cohort design, 92 patients completed a series of measurements at 4 time points: baseline/T1 (pretransplant), T2 (posttransplant), T3 (1 month postdis-charge) and T4 (1 year postdischarge). Well-established measures were administered either by interview or self-

administered, which included the Illness Intrusiveness Ratings Scale, Affect Balance Scale, Center for Epidemiologic Studies Depression (CES-D) Scale, Rosenberg Self-Esteem Inventory and the Modified Symptom Assessment Scale. Multilevel modeling was used to examine changes across 4 milestones during the first year. Results indicate that following HSCT, QOL changed systematically over the first year. QOL mea-sures and positive facets were lowest during hospitalization (T2), returned to near-baseline at 1 year (T4), but remained lower than in cancer-free people. Results also show that illness intrusiveness was exceptionally high at all 4 time points. There were distinct, but complementary QOL trajectories. The trajectory of symptoms corresponds to QOL trajectories, but incremental effects related to treatment factors such as being in isolation remain to be tested.

CommenTary: The psychosocial stressors and adaptive demands for individuals undergoing HSCT are well docu-mented.1,2 The treatment is arduous, risky and unpleasant, affects the patient’s relationships, imposes financial burdens and demands readjustment. Approximately 80% of individuals undergoing HSCT report distress, with one-third reporting symptoms consistent with clinical depression.1 The treatment also requires tremendous investments in technology and resources. Given the investment by patients and the healthcare system, it seems reasonable to ask: Is HSCT preserving life? Is it helping people to continue enjoying life and deriving happiness from life?

The authors highlighted how most randomized clinical trials evaluating new transplant treatments measure QOL. Importantly, many of these studies only assess health-related quality of life (HRQOL), tracking symptoms and side effects. The authors emphasize that there are important facets to QOL beyond symptom management, such as engaging in and/or resuming meaningful life activities, which have been overlooked.

As such, the study aimed to answer: To what extent are the individuals who underwent HSCT able to resume psycho-logically meaningful activities? How do these individuals feel about themselves post treatment?

Research has shown that QOL trajectories in those who undergo transplants report the highest levels of distress during isolation and short-term recovery (days 30–100).3 There is some evidence supporting a trajectory of recovery, whereby QOL returns to baseline (notably baseline is at the time of cancer diagnosis) 1-year post treatment. However, patients assessed at variable time points, i.e. months to years post transplantation, do not represent a homogeneous group. In one study, 53% percent of patients reported not being

“back to normal” 3.5 years post-HSCT.3 This suggests that something may be lingering many years post treatment that needs to be understood.

The study by Devins et al. reveals that illness intrusiveness, including relationship, intimacy and instrumental (life/financial) intrusiveness, was exceptionally high across all 4 time points, peaking at T2. Illness intrusiveness immediately post transplant (T2) was comparable to that experienced by day hospital patients with schizophrenia; although it decreased by 1 year post treatment (T4), illness intrusiveness remained as high as that seen in multiple sclerosis patients.

The trajectory of symptoms followed illness intrusiveness, such that symptoms similarly peaked during periods of hos-pitalization (T2). Other QOL outcomes, such as emotional distress, followed similar trajectories. Distress peaked at T2, and corresponded with the symptom trajectory. This is important since the number of symptoms, the fact that the patient is in hospital, and isolation may be confounding fac-tors with QOL. Additional QOL variables like happiness and self-esteem show corresponding trajectories over the course of treatment, but do not have as striking a corre-spondence with the symptom trajectory.

Pearson correlations between QOL outcomes at the 4 time points (mono-trait hetero-time correlations) were low to moderate (0.28–0.73). Cross-sectional correlations between QOL and symptoms at the 4 time points (mono-time correlations between QOL and symptoms) were also low to moderate (0.07–0.58). This suggests that symptoms are systematically related to many facets of QOL, but do not explain the whole story. Whether it is isolation, or the threat of recurrence, QOL is not simply a function of symptoms.

This study contributes to the growing literature on the

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impact of QOL in distinct cancer poulations. It is important to note that despite reduced QOL, as illustrated by high illness instrusiveness, it may be ‘normal’ that patients are working through life difficulties, and ultimately (upwards of 1 year post transplant), patients may reinterpret the adversity of HSCT as a meaningful life experience and show a positive impact on psychologic growth.

QOL is a dynamic, multifaceted concept related to physical, cognitive, emotional, and social functioning and wellbeing. At present, there is no consensus on which QOL measure-

ment should be used. Future research should continue to assess general QOL components, but also HSCT-specific QOL measures (e.g. City of Hope/Stanford Longterm Bone Marrow Transplantation [BMT] Survivor Index).5 Additionally, systematic differences have been reported from the way QOL measures are administered, with inter-view administration generally resulting in better reported QOL than paper-and-pencil administration. It might be important to use both interviews and self administered test-ing, and systematically compare these groups. Lastly, there was no comparator group in this study, and it may be worthwhile to compare HSCT patients to other cancer populations and/or Canadian population norms.

In practical terms, the study suggests it may be worthwhile to educate patients about the illness trajectory. Patients would gain a greater sense of control and benefit from knowing what to expect (e.g. isolation is a difficult time). Another important implication is related to facilitating adaptation. In terms of psychosocial support and services, it may be important to employ a rehabilitation, rather than a psychopathologic, approach. As an example, psychosocial support can address how to preserve activities that give purpose and meaning to life. In turn, this can cultivate and facilitate those particular aspects of QOL which may be integral to successfully restoring satisfaction and life happi-ness in patients who undergo HSCT.

references:

1. Siegel, S. D. Psychosocial considerations in hematopoietic stem cell transplan-tation: implications for patient quality of life and post-transplant survival. Com-munity Oncology 2008;5(7):407-11.

2. Mosher, C. E., Redd, W. H., Rini, C. M., Burkhalter, J. E., & DuHamel, K. N. Physical, psychological, and social sequelae following hematopoietic stem cell transplantation: a review of the literature. Psycho-Oncology 2009;18(2):113-27.

3. Pidala, J., Anasetti, C., & Jim, H. Quality of life after allogeneic hematopoietic cell transplantation. Blood 2009;114(1), 7-19.

4. Andrykowski MA, Brady MJ, Greiner CB, Altmaier EM, Burish TG, Antin JH, Gingrich R, McGarrigle CM, Henslee-Downey PJ . Returning to normal follow-ing bone marrow transplantation: Outcomes expectations and informed con-sent. Bone Marrow Transplantation 1995;15:573-81.

5. Schmidt GM, Niland JC, Forman SJ, et al. Extended follow-up in 212 long-term allogeneic bone marrow transplant survivors: issues of quality of life. Trans-plantation 1993;55:551-7

In BrIEFalready known• a growing literature has described the impact of

hematopoietic stem cell transplantation (Hsct) on quality of life (QOL) related to symptoms, showing that this tends to stabilize within one year post trans-plant, but little is known about the impact of Hsct on happiness and satisfaction with life.

What this study showed• QOL and elements of satisfaction with life were

most negative during the period of hospitalization, but returned to baseline by one year post treatment. the QOL outcome trajectories corresponded with symptom trajectory, but not entirely.

• illness intrusiveness was very high both pre and post transplant, suggesting that facets of QOL beyond symptom management should be addressed.

next steps• incremental effects related to treatment factors such

as being in isolation should be tested to better understand patient’s QOL.

• psychosocial services/interventions aimed at pre-serving activities that give purpose and meaning to life may be key to restoring life satisfaction and hap-piness in patients post Hsct.