Function, Adjustment, Quality of Life and Symptoms (FAQS) in Allogeneic Hematopoietic Stem Cell Transplantation (HSCT) Survivors: A Study Protocol

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• 作者：Margaret F Bevans (1)
  Sandra A Mitchell (2)
  A John Barrett (3)
  Michael Bishop (4)
  Richard Childs (3)
  Daniel Fowler (4)
  Michael Krumlauf (1)
  Patricia Prince (1)
  Nonniekaye Shelburne (2)
  Leslie Wehrlen (1)
  
• 刊名：Health and Quality of Life Outcomes
• 出版年：2011
• 出版时间：December 2011
• 年：2011
• 卷：9
• 期：1
• 全文大小：290KB
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• 作者单位：Margaret F Bevans (1)
  Sandra A Mitchell (2)
  A John Barrett (3)
  Michael Bishop (4)
  Richard Childs (3)
  Daniel Fowler (4)
  Michael Krumlauf (1)
  Patricia Prince (1)
  Nonniekaye Shelburne (2)
  Leslie Wehrlen (1)
  
  1. National Institutes of Health Clinical Center, 10 Center Drive, Bethesda, MD, USA
  2. National Institutes of Health, National Cancer Institute, 6130 Executive Blvd, Bethesda, MD, USA
  3. National Institutes of Health, National Heart, Lung, and Blood Institute, 10 Center Drive, Bethesda, MD, USA
  4. National Institutes of Health, National Cancer Institute, 10 Center Drive, Bethesda, MD, USA
  

文摘

Background 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). Methods 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. Conclusions 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. Trial Registration ClinicalTrials.gov: NCT00128960