ABSTRACT
INTRODUCTION AND OBJECTIVES: The COVID-19 pandemic is causing great social and health impact. We need to involve patients in identifying their new needs in this situation. The aim of this study was to assess the perception of organisations associated with the Spanish Patients' Forum regarding the pandemic. MATERIAL AND METHODS: A descriptive cross-sectional study using an online survey. Organisations associated with the FEP participated over the second half of May 2020. The questionnaire was pre-assessed by professionals and patients. The subject areas were overall effect of the pandemic, impact, the role of patient associations, limitations, and challenges. A descriptive analysis of the quantitative variables and a content analysis of the qualitative information were performed. RESULTS: The participation rate was 88.7%. The respondents highlighted the impact of the pandemic on the quality of life and well-being of patients and their families. They also reported the effect of the baseline disease and delay in treatment and testing. The pandemic has also affected patient associations. CONCLUSIONS: The pandemic has had an impact at the level of healthcare and other spheres of society. Patients' health, quality of life and use of health services have been affected. The need is highlighted to involve patients, their families, and legal representatives in the search for solutions adapted to the current needs of these groups.
