Concerns of patients with systemic lupus erythematosus and adherence to therapy – a qualitative study
Received 20 March 2017
Accepted for publication 13 June 2017
Published 14 July 2017 Volume 2017:11 Pages 1213—1219
Checked for plagiarism Yes
Review by Single anonymous peer review
Peer reviewer comments 2
Editor who approved publication: Dr Johnny Chen
Filipa Farinha,1 Francisco Freitas,2 Ana Águeda,1 Inês Cunha,1 Anabela Barcelos1
1Rheumatology Department, Centro Hospitalar do Baixo Vouga EPE, Aveiro, Portugal; 2Centre for Social Studies, Universidade de Coimbra, Coimbra, Portugal
Purpose: The objectives of this study were 1) to identify the impact of systemic lupus erythematosus (SLE) on patients’ lives and their reactions to this, as well as their main concerns and expectations regarding their disease and treatments; and 2) to assess the relationship between these concerns and the adherence to treatments, medical visits, and diagnostic tests.
Patients and methods: Qualitative study, using a convenient sample of SLE patients attending an outpatient rheumatology clinic. Semistructured interviews were conducted and audiotaped. The full transcripts were analyzed by two different coders using content analysis methodology.
Results: Fifteen participants were included. SLE had a major impact on these patients’ lives. Their main concerns were fear of disease worsening and becoming dependent on other people, fear of not being able to take care of their children or provide for the family, and the possibility of transmitting SLE to their offspring. The main reasons for adherence to therapy were the wish to avoid manifestations of SLE and trust in the rheumatologist and routine. Nonadherence was more common in the beginning of the treatment because of the difficulty in accepting a chronic disease that requires lifelong therapy.
Conclusion: Our data underlined the important interplay between adherence to medication and the possibility to gather accurate information and proper support during the treatment process. Good communication and efficient patient education strategies, focused on improving their knowledge about the disease and its treatments, may be important to improve adherence to therapy in SLE.
Keywords: illness perception, adherence, communication, patients’ perspectives, qualitative research
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