Monninkhof Evelyn, van der Aa Maaike, van der Valk Paul, van der Palen Job, Zielhuis Gerhard, Koning Karen, Pieterse Marcel
Department of Pulmonary Medicine, Medisch Spectrum Twente, P.O. Box 50000, 7500 KA Enschede, The Netherlands.
Patient Educ Couns. 2004 Nov;55(2):177-84. doi: 10.1016/j.pec.2003.09.001.
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.
COPE自我管理项目，包括自我管理教育课程、病情加重时的自我治疗以及健身项目，根据圣乔治呼吸问卷（SGRQ）测量，似乎对健康相关生活质量（HRQoL）没有显著影响。这与我们的假设相反，尽管患者对医护人员表达了满意。为了理解这种差异，我们进行了一项定性研究。采用深入的半结构化访谈，对COPE自我管理项目的20名参与者进行了有目的抽样访谈，并在家中进行。访谈进行了录音并逐字转录，然后根据扎根理论进行分析。由于患者感觉运动能力增强以及团体训练的社交方面，健身项目得到了最积极的评价。患者报告的自我管理教育课程的主要成效是均匀分配精力和倾听身体信号的技能。大多数患者对病情加重时的自我治疗评价良好。能够及早开始、无需呼叫医生以及自主性被视为重要优势。此外，几名患者报告称，COPE项目的重要成效是自信心增强和应对行为改善。最后，许多患者报告称，由于频繁的随访和24小时可联系医院，他们感到很安心，并且这一点被证明非常重要。在本研究中，定性访谈表明，SGRQ以及其他可能现有的HRQoL工具可能无法全面反映自我管理研究中患者的完整体验。这表明需要对该主题进行更详尽的定性研究。
