title: Symptom distress predicts long-term health and well-being in allogeneic stem cell transplantation survivors.
abstract: The number of survivors after allogeneic hematopoietic stem cell transplantation (HSCT) continues to increase, yet their survivorship experience has not been fully characterized. This study examines the health status and health-related quality of life (HRQL) of HSCT survivors. The aims of the study were to: (1) explore the baseline and change over time in these health outcomes, and (2) characterize subgroups experiencing adverse outcomes. In this longitudinal study, adults who survived >3 years from date of allogeneic HSCT completed a series of patient-reported outcome measures annually, including measures of health status, HRQL, and symptoms. Data were analyzed using hierarchical linear modeling. Subjects (N = 171) were on average 44 (±13.5) years of age and primarily male (62.6%); 40% were Hispanic. Mean scores for physical and mental health and HRQL were preserved relative to population norms. Hierarchical linear modeling revealed no significant change in the mean trajectories of these outcomes, although significant between-individual variability was observed. When controlling for demographic and clinical factors, physical symptom distress negatively affected all outcomes. The impact of symptom distress on physical health varied based on time since HSCT; impairment in physical health was greatest in survivors experiencing high symptom distress and who were within the first decade post transplantation. Extended treatment with systemic immunosuppressive therapy also predicted inferior physical health. These findings suggest that patient-centered outcomes are preserved relative to normative values and are generally stable after allogeneic HSCT, although survivors with persistent symptoms and those receiving systemic immunosuppression experience impairments in health status and HRQL.
authors.affiliation: Nursing Department, National Institutes of Health Clinical Center, Bethesda, Maryland. Electronic address: mbevans@cc.nih.gov.
authors.forename: Margaret F
authors.initials: MF
authors.lastname: Bevans
authors.affiliation: Applied Research Program, Outcomes Research Branch, National Cancer Institute, NIH, Rockville, Maryland; Experimental Transplantation and Immunology Branch, National Cancer Institute, NIH, Bethesda, Maryland.
authors.forename: Sandra A
authors.initials: SA
authors.lastname: Mitchell
authors.affiliation: Hematology Branch, National Heart, Lung, and Blood Institute, NIH, Bethesda, Maryland.
authors.forename: John A
authors.initials: JA
authors.lastname: Barrett
authors.affiliation: Section of Hematology/Oncology, University of Chicago, Chicago, Illinois.
authors.forename: Michael R
authors.initials: MR
authors.lastname: Bishop
authors.affiliation: Hematology Branch, National Heart, Lung, and Blood Institute, NIH, Bethesda, Maryland.
authors.forename: Richard
authors.initials: R
authors.lastname: Childs
authors.affiliation: Experimental Transplantation and Immunology Branch, National Cancer Institute, NIH, Bethesda, Maryland.
authors.forename: Daniel
authors.initials: D
authors.lastname: Fowler
authors.affiliation: Nursing Department, National Institutes of Health Clinical Center, Bethesda, Maryland.
authors.forename: Michael
authors.initials: M
authors.lastname: Krumlauf
authors.affiliation: Nursing Department, National Institutes of Health Clinical Center, Bethesda, Maryland; Social Work Department, National Institutes of Health Clinical Center, Bethesda, Maryland.
authors.forename: Patricia
authors.initials: P
authors.lastname: Prince
authors.affiliation: Applied Research Program, Outcomes Research Branch, National Cancer Institute, NIH, Rockville, Maryland; Division of Cancer Control and Population Sciences, National Cancer Institute, NIH, Rockville, Maryland.
authors.forename: Nonniekaye
authors.initials: N
authors.lastname: Shelburne
authors.affiliation: Nursing Department, National Institutes of Health Clinical Center, Bethesda, Maryland.
authors.forename: Leslie
authors.initials: L
authors.lastname: Wehrlen
authors.affiliation: Nursing Department, National Institutes of Health Clinical Center, Bethesda, Maryland.
authors.forename: Li
authors.initials: L
authors.lastname: Yang
mesh_terms: D000328:Adult; D005260:Female; D006304:Health Status; D019337:Hematologic Neoplasms / Q000276:immunology / Q000473:pathology / Q000523:psychology* / Q000628:therapy*; D018380:Hematopoietic Stem Cell Transplantation; D006801:Humans; D007166:Immunosuppressive Agents / Q000009:adverse effects; D008137:Longitudinal Studies; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D063868:Patient Outcome Assessment; D011788:Quality of Life / Q000523:psychology*; D013315:Stress, Psychological / Q000503:physiopathology*; D017741:Survivors / Q000523:psychology*; D014184:Transplantation, Homologous
chemical_list: D007166:Immunosuppressive Agents
keywords: Allogeneic hematopoietic stem cell transplantation; Fatigue; Functional status; Health-related quality of life; Symptom experience