title: A qualitative evaluation of a comprehensive self-management programme for COPD patients: effectiveness from the patients' perspective.
abstract: The COPE self-management programme, including a self-management education course, self-treatment of exacerbations and a fitness programme, appeared to have no significant effect on health related quality of life (HRQoL) as measured by the St. George's Respiratory Questionnaire (SGRQ). This is in contrast to our hypothesis and despite expressions of satisfaction of patients to healthcare workers. To understand this discrepancy, a qualitative study was performed. A purposive sample of 20 participants of the COPE self-management programme were interviewed at home using in-depth, semi-structured interviews. Interviews were audio taped and transcribed verbatim and analysed according grounded theory. The fitness programme was most positively evaluated by patients due to the perceived increase of exercise capacity and the social aspect of the group training. Major effects gained by the self-management education course reported by patients were the skills to evenly distribute their energy and to listen to their body signals. Most patients thought favourable about self-treatment of exacerbations. The possibility to start early, not having to call a doctor and autonomy were raised as important advantages. Furthermore, several patients reported increased self-confidence and coping behaviour as important effects of the COPE programme. Finally, many patients reported feeling safe due to the frequent follow-up visits and 24h access to the hospital, and this aspect elicited to be very important. In this study, the qualitative interviews suggest that the SGRQ and possibly other existing HRQoL instruments might fail to capture the full experience of patients in self-management studies. The need for more elaborate qualitative research on this subject is indicated.
authors.affiliation: Department of Pulmonary Medicine, Medisch Spectrum Twente, P.O. Box 50000, 7500 KA Enschede, The Netherlands. emonminhof@introweb.nl
authors.forename: Evelyn
authors.initials: E
authors.lastname: Monninkhof
authors.forename: Maaike
authors.initials: M
authors.lastname: van der Aa
authors.forename: Paul
authors.initials: P
authors.lastname: van der Valk
authors.forename: Job
authors.initials: J
authors.lastname: van der Palen
authors.forename: Gerhard
authors.initials: G
authors.lastname: Zielhuis
authors.forename: Karen
authors.initials: K
authors.lastname: Koning
authors.forename: Marcel
authors.initials: M
authors.lastname: Pieterse
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000359:Aftercare / Q000458:organization & administration; D000368:Aged; D001294:Attitude to Health; D019468:Disease Management; D005081:Exercise Therapy / Q000458:organization & administration; D005260:Female; D005541:Forced Expiratory Volume; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic / Q000458:organization & administration*; D010809:Physical Fitness; D015397:Program Evaluation; D029424:Pulmonary Disease, Chronic Obstructive / Q000517:prevention & control / Q000523:psychology; D036301:Qualitative Research; D011788:Quality of Life; D012648:Self Care / Q000379:methods / Q000523:psychology; D020377:Self Efficacy; D011795:Surveys and Questionnaires / Q000592:standards; D014797:Vital Capacity