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

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.ClinicalTrials.gov: NCT00128960Allogeneic hematopoietic stem cell transplantation (HSCT) is an established and potentially curative treatment for various hematologic diseases [1-3]. More than 50 years after the first reports of bone marrow grafting, the National Marrow Donor Program (NMDP) reports approximately 20,000 allogeneic transplants in the U.S. annually [4]. Allogeneic HSCT has become standard therapy for patients with a wide variety of indications [5]; coupled with the increased availability of unrelated donors, and the use of cord blood as a stem cell source [6], the number of transplant recipients continues to grow.The toxicity profile associated with an allogeneic HSCT is prominent. Significant toxicities result from the intense chemotherapy and radiotherapy utilized to prepare recipients, and from acute and chronic graft-versus-host disease (GVHD) that results from don