Maybe you already attend a support group for IPF patients and are sharing your experiences. But maybe you are not and wonder if it would be helpful at all. Recently, Dutch investigators have shown that a short empowerment program for idiopathic pulmonary fibrosis (IPF) patients and their partners, focusing on coping with this devastating lung disease, yielded quite positive results!
It is widely recognized that patients with IPF need better information resources, disease education and support groups. In an academic hospital in the Netherlands, investigators determined the effect of a short empowerment program on the quality of life for IPF patients and their partners. Importantly, the program was co-developed with patients and multi-disciplinary experts. It consisted of three afternoon meetings in which IPF patients and their partners shared experiences and learned from peers.
The partners filled out a quality of life questionnaire specifically designed for them
Participating IPF patients and their partners were divided into two groups: one which attended these meetings and one which did not. They were all asked to fill out several different questionnaires at the beginning of the program, and again after three weeks and after three months. The questionnaires dealt with anxiety and depression, stress and knowledge about IPF, as well as with their health status. Also, the partners filled out a quality of life questionnaire specifically designed for them. The results of the questionnaires filled out by patients and partners attending the meetings were compared to those of patients and partners not attending the meetings.
In the end, attending the support program had a positive effect on the wellbeing of IPF-patients and their partners. Because the program consisted of small groups, personal interaction was encouraged. Patients participating in these meetings found it “informative, useful and supportive” and would certainly recommend it to others.
van Manen MJG, van ’t Spijker A, Tak NC, et al. Patient and partner empowerment programme for idiopathic pulmonary fibrosis. Eur Respir J 2017; 49: 1601596 [https://doi.org/10.1183/13993003.01596-2016].