title: The effect of bronchiolitis obliterans syndrome on health related quality of life.
abstract: Bronchiolitis obliterans syndrome (BOS) is the most important factor limiting long-term survival after lung transplantation, and has a substantial impact on patients' daily life in terms of disability and morbidity. Aim of our study was to examine the effects of BOS on health related quality of life (HRQL) in lung transplantation patients. Data on HRQL from 29 patients who developed BOS at least 18 months earlier were studied longitudinally. HRQL measures were: the Nottingham Health Profile (NHP), the State Trait Anxiety Inventory (STAI), the Self-rating Depression Scale (ZUNG), and the Index of Well Being (IWB). Furthermore questions concerning activities of daily life and dyspnea were asked. The majority of the patients were male, and the most common diagnosis was emphysema. After the onset of BOS, significantly more restrictions were reported on the dimensions energy and mobility of the NHP. These restrictions appeared to increase over time. After the onset of BOS, STAI scores remained more or less stable and close to the value of the general population. ZUNG scores were significantly higher after the onset of BOS, and patients experienced a lower level of well being than the general population. The percentage of patients that reported to be able to perform activities of daily life without effort declined dramatically after the onset of BOS. Furthermore, the percentage of patients complaining of dyspnea increased after the onset of BOS. In conclusion, our study showed that HRQL was negatively affected by the onset of BOS. However, in spite of these less favorable long-term results, even patients who develop BOS may at least temporarily benefit from a lung transplantation.
authors.affiliation: Office for Medical Technology Assessment,Groningen University Hospital, Groningen, The Netherlands. k.m.vermeulen@mta.azg.nl
authors.forename: Karin M
authors.initials: KM
authors.lastname: Vermeulen
authors.forename: Henk
authors.initials: H
authors.lastname: Groen
authors.forename: Wim
authors.initials: W
authors.lastname: van der Bij
authors.forename: Michiel E
authors.initials: ME
authors.lastname: Erasmus
authors.forename: Gerard H
authors.initials: GH
authors.lastname: Koëter
authors.forename: Elisabeth M
authors.initials: EM
authors.lastname: TenVergert
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D001989:Bronchiolitis Obliterans / Q000503:physiopathology; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D016040:Lung Transplantation; D008297:Male; D008875:Middle Aged; D011183:Postoperative Complications; D011788:Quality of Life; D013577:Syndrome