Abstract
BackgroundThe 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).MethodsIn 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.ConclusionsThis 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.Trial RegistrationClinicalTrials.gov: NCT00128960
Highlights
Allogeneic hematopoietic stem cell transplantation (HSCT) is an established and potentially curative treatment for various hematologic diseases [1,2,3]
Significant toxicities result from the intense chemotherapy and radiotherapy utilized to prepare recipients, and from acute and chronic graftversus-host disease (GVHD) that results from donor anti-host immune response against normal host tissues
There are an estimated 150,000 individuals living in the US who have survived 5 years or more following allogeneic HSCT [6], the patterns of recovery relative to functional status, psychosocial adjustment, quality of life and symptom distress in survivors 3 or more years following transplant are not fully understood
Summary
Allogeneic hematopoietic stem cell transplantation (HSCT) is an established and potentially curative treatment for various hematologic diseases [1,2,3]. Whereas the early recovery period following autologous and allogeneic HSCT may be somewhat comparable, allogeneic HSCT survivors encounter unique complications, such as acute and chronic GVHD and opportunistic infections related to the need for prolonged courses of immunosuppression These conditions can be anticipated to substantially shape the symptom experience, functional status, psychosocial health, and health-related quality of life (HRQL) experienced by long-term survivors of allogeneic HSCT. Despite reports of negative physical and psychosocial sequelae and poor health-related quality of life (HRQL) early after HSCT [17,18], several studies suggest that by the fifth year of recovery, the majority of longterm allogeneic HSCT survivors report good to excellent HRQL relative to healthy populations and relative to patients with other chronic diseases [19,20,21,22]. Residual difficulties reported by survivors include impairments in physical and cognitive function [24,31,32,33], as well as restricted role and occupational functioning [24,27,33,34]
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