Content Validity of a Patient Reported Experience Measure for patients with Rheumatoid Arthritis in Portugal

• Autor(a) principal: Raquel Morgado Raínho
• Data de Publicação: 2023
• Tipo de documento: Dissertação
• Idioma: eng
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: https://hdl.handle.net/10216/149037
• topic: Ciências da saúde; Health sciences

Background: Rheumatoid arthritis (RA) is an increasing major global public health challenge, with significant morbidity and mortality. The evaluation of RA patients' perceptions has a positive influence in their health outcomes and overall experience of care, which demonstrates the importance of using an instrument capable to do this assessment. The Commissioning for Quality in Rheumatoid Arthritis Patient-Reported Experience Measure (CQRA-PREM) is an instrument for that purpose that is already validated and in use in the United Kingdom (UK) and Netherlands. In Portugal, there is no validated instrument enable to evaluate the experience of patients with RA about the health care received. Objective: To translate, cultural adapt and validate the CQRA-PREM for the Portuguese population. Methods: A qualitative study using focus groups was conducted to evaluate CQRA-PREM content validity. The CQRA-PREM was first translated and cultural adapted to Portuguese by two researchers, and after back translation, a panel of experts agreed on the preliminary Portuguese version of CQRA-PREM.Patients with RA were recruited from a rheumatology center at a tertiary university hospital center to participate in focus group meetings. Before the focus group they filled in the preliminary version of CQRA-PREM. Results: Twelve participants (median 54 (44.5-58) years old; 92% female) were included in two focus groups. Participants considered the questionnaire as "simples" and with adequate questions. Patients pointed as extremely important being treated with dignity and respect and considered the awareness of the multidisciplinary team and the presentation of support programs and organizations as areas for improvement. The Cronbach's alpha was 0.94 for the total questionnaire and between 0.71 and 0.91 for the domains. Conclusion: The Portuguese version of the CQRA-PREM is acceptable and valid in the perspective of patients with RA to assess the quality of care provided by the health care services through the experience of patients with RA.