Abstract
Central European IPF All Patients Network (CIPFAPANET) is the organization created by patients, caregivers and doctors to support others in coping with IPF.
A structured questionnaire was developed to find out, how IPF patients evaluate the cooperation with doctors, where they get disease related information from and what are their main problems.
Results: Anonymous questionnaire containing 24 questions was distributed to 279 IPF patients from 6 countries (Czech Republic, Poland, Hungary, Croatia, Israel, Austria). 68% of responders were male, 55% aged between 66 and 75. A half of the patients were diagnosed with IPF within a year from the beginning of symptoms. Majority of patients were treated in hospital or by respiratory physician. Above 90% were satisfied with the information received from their physician about disease, treatment options and time dedicated for them by doctors. 78% and 55% were satisfied with the information about side – effects of drugs management and palliative care respectively. All of the patients declared always to follow doctors’ advice and never to change the dose / interrupt treatment by themselves. The main source of information was treating physician, followed by internet and printed media. Only 12% had a contact with patients’ support group, of these who did not, 37% were interested in it. 66% of patients found their health condition good / rather good, 26% rather bad, similar proportions were noted for quality of life assessment.
Conclusion: This is the first study from this part of Europe, showing that patients are satisfied with the health care and they relay on a doctor in most issues regarding their disease. The knowledge about patients’ support groups should become widespread.
Footnotes
Cite this article as: European Respiratory Journal 2019; 54: Suppl. 63, PA1314.
This is an ERS International Congress abstract. No full-text version is available. Further material to accompany this abstract may be available at www.ers-education.org (ERS member access only).
- Copyright ©the authors 2019