title: Conditional and unconditional estimation of multidimensional quality of life after hematopoietic stem cell transplantation: a longitudinal follow-up of 415 patients.
abstract: Emerging literature suggests that quality of life (QOL) after bone marrow transplantation is relatively good but is accompanied in some patients by a variety of residual difficulties. The studies supporting this finding, however, have been somewhat limited in scale, scope, design, and analysis. We comprehensively measured changes in multidimensional QOL in a 4-year longitudinal follow-up of 415 adult patients who received hematopoietic stem cell transplants at Fred Hutchinson Cancer Research Center. Questionnaire packets containing 271 items were mailed annually posttransplantation to patients' homes. Standard methods of analysis yielded conditional estimates depending on compliance and survival, whereas new, likelihood-based methods generated unconditional estimates applicable to the full intent-to-treat population. Typical QOL levels generally remained high over the entire study period. Most QOL functioning significantly improved over 4 years, with the remainder showing no important decrement. Although isolated problem areas, such as sexual dissatisfaction, did emerge, the level of dysfunction for most physical and psychological scales remained below 30% of scale maxima. Broadly similar results were obtained for conditional estimation, which may contain an optimistic bias, and for unconditional estimation, which largely avoids the bias. Because concurrence was obtained between the 2 types of estimation, we conclude that most patients really do experience good levels of QOL in the 4 years after transplantation. Although some problems can be anticipated, typical patients can look forward to a QOL after transplantation that is broadly comparable to that of the normal population.
authors.affiliation: Fred Hutchinson Cancer Research Center, Seattle, Washington 98109-1024, USA. nbush@fhcrc.org
authors.forename: N E
authors.initials: NE
authors.lastname: Bush
authors.forename: G W
authors.initials: GW
authors.lastname: Donaldson
authors.forename: M H
authors.initials: MH
authors.lastname: Haberman
authors.forename: R
authors.initials: R
authors.lastname: Dacanay
authors.forename: K M
authors.initials: KM
authors.lastname: Sullivan
mesh_terms: D000328:Adult; D000339:Affect; D003072:Cognition Disorders / Q000453:epidemiology / Q000209:etiology; D005221:Fatigue / Q000453:epidemiology / Q000209:etiology; D005260:Female; D005500:Follow-Up Studies; D005767:Gastrointestinal Diseases / Q000453:epidemiology / Q000209:etiology; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects / Q000191:economics / Q000523:psychology; D006801:Humans; D016013:Likelihood Functions; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000453:epidemiology / Q000209:etiology; D011446:Prospective Studies; D011788:Quality of Life; D012735:Sexual Dysfunction, Physiological / Q000453:epidemiology / Q000209:etiology; D012893:Sleep Wake Disorders / Q000453:epidemiology / Q000209:etiology; D012944:Social Support; D013315:Stress, Psychological / Q000453:epidemiology / Q000209:etiology; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*