A single-centre assessment of long-term quality-of-life status after sibling allogeneic stem cell transplantation for chronic myeloid leukaemia in first chronic phase

St. James's Hospital, Dublin, Leinster, Ireland
Bone Marrow Transplantation (Impact Factor: 3.57). 10/2004; 34(6):545-56. DOI: 10.1038/sj.bmt.1704638
Source: PubMed


A total of 75 patients underwent sibling allogeneic stem cell transplantation (SCT) for chronic myeloid leukaemia in first chronic phase from 1984 to 2000. Of these patients, 51 (68%) were alive at a median follow-up of 98 months (range 34-217 months). Nine (18%) patients relapsed and seven (14%) received donor lymphocyte transfusions. Quality of life (QoL) was assessed cross-sectionally using the EORTC QLQ-C30, a Leukaemia-BMT-specific module and questionnaires on sexual functioning, fertility and late effects. A total of 46 (90%) replied. Scores for Role (P=0.018) and Cognitive (P<0.001) function were significantly lower when compared to an age-adjusted general population. Dyspnoea (P=0.022) and Financial Difficulties (P<0.001) were significantly more common in the SCT group. No difference was found for scores in the Physical, Emotional and Social domains or the overall Global Health Status/QoL. Decreased sexual functioning was found in one-third of respondents. Although most BMT recipients reported a good QoL, a minority have difficulty with reintegration into professional roles and consequent monetary problems. Identified cognitive and sexual impairments highlight the need for long-term access to psychosocial support.

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    • "Higher scores on the function and total scores represent higher HRQoL, but higher scores on the symptoms score equal low HRQoL. As expected, the distribution of the HRQoL scores deviated substantially from normality, and scores were therefore dichotomised using median splits, as described by previous authors (Hayden et al, 2004; Snyder et al, 2009 "
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    ABSTRACT: Background: Sperm banking is recommended for all men diagnosed with cancer where treatment is associated with risk of long-term gonadatoxicity, to offer the opportunity of fatherhood and improved quality of life. However, uptake of sperm banking is lower than expected and little is known about why men refuse. Our aims were to determine: (i) demographic and medical variables associated with decisions about banking and (ii) differences in quality of life between bankers and non-bankers at diagnosis (Time 1 (T1)) and 1 year later (Time 2 (T2)). Methods: Questionnaires were completed by 91 men (response rate=86.67%) at T1 and 78 (85.71% response rate) at T2. Results: In all, 44 (56.41%) banked sperm. They were younger and less likely to have children than non-bankers. In a subset of men who were not sure if they wanted children in the future (n=36), 24 banked sperm. Among this group, those who banked were younger, more satisfied with clinic appointments and less worried about the health of future children. At T2, there were no differences in quality of life between bankers and non-bankers. Conclusion: For those who are uncertain about future reproductive plans, decisions depend on their health on diagnosis and satisfaction with clinic care. We conclude that extra care should be taken in counselling younger men who may have given little consideration to future parenting. Results support previous findings that the role of the doctor is vital in facilitating decisions, especially for those who are undecided about whether they wanted children in the future or not.
    British Journal of Cancer 03/2013; 108(5). DOI:10.1038/bjc.2013.57 · 4.84 Impact Factor
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    • "On the other hand, investigators have described functional impairments in 10-year survivors relative to population norms [25,29,30]. Residual difficulties reported by survivors include impairments in physical and cognitive function [24,31-33], as well as restricted role and occupational functioning [24,27,33,34]. "
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    ABSTRACT: The population of survivors following allogeneic HSCT continues to increase, and yet their experiences of recovery and long-term survivorship have not been fully characterized. This paper presents a study protocol examining over time the functional status, psychosocial adjustment, health-related quality of life, and symptom experience of survivors who have undergone allogeneic transplantation. The aims of the study are to: 1) explore the patterns of change in these health outcomes during the survivorship phase; 2) characterize subgroups of survivors experiencing adverse outcomes; and 3) examine relationships among outcomes and demographic and clinical factors (such as age, graft-versus-host disease (GVHD), and disease relapse). In this longitudinal observational study, adults who survive a minimum of 3 years from date of allogeneic transplantation complete a series of questionnaires annually. Demographic and clinical data are collected along with a series of patient-reported outcome measures, specifically: 1) Medical Outcomes Study SF- 36; 2) Functional Assessment of Chronic Illness Therapy (FACIT) - General, 3) FACIT-Fatigue; 4) FACIT- Spiritual; 5) Psychosocial Adjustment to Illness Scale; 6) Rotterdam Symptom Checklist-Revised; and 7) Pittsburgh Sleep Quality Index. This study will provide multidimensional patient-reported outcomes data to expand the understanding of the survivorship experience across the trajectory of allogeneic transplantation recovery. There are a number of inherent challenges in recruiting and retaining a diverse and representative sample of long-term transplant survivors. Study results will contribute to an understanding of outcomes experienced by transplant survivors, including those with chronic GVHD, malignant disease relapse, and other late effects following allogeneic transplantation. NCT00128960.
    Health and Quality of Life Outcomes 04/2011; 9(1):24. DOI:10.1186/1477-7525-9-24 · 2.12 Impact Factor
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    • "Compared to siblings, survivors had a high prevalence of long-term healthrelated complications including endocrine, ocular, oral health, gastrointestinal, musculoskeletal, neurosensory and neuromotor impairment. In a non-overlapping study of 46 CML transplant recipients, investigators observed a high incidence of late cognitive deficits and an increase in psychosexual problems compared to the general population [30]. Of interest, in a third study CML patients and physicians reported an improved Quality of Life (QOL) Index score, decreased signs and symptoms of depression and less alcohol consumption at 12 months following transplant compared to the study patients' immediate pretransplant baseline [31]. "

    Hematology 02/2005; 10 Suppl 1(Supplement-1):15-8. DOI:10.1080/10245330512331389764 · 1.25 Impact Factor
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