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Concerns of patients with systemic lupus erythematosus and adherence to therapy – a qualitative study

Farinha, F; Freitas, F; Águeda, A; Cunha, I; Barcelos, A; (2017) Concerns of patients with systemic lupus erythematosus and adherence to therapy – a qualitative study. Patient Preference and Adherence , 11 pp. 1213-1219. 10.2147/PPA.S137544. Green open access

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Abstract

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.

Type: Article
Title: Concerns of patients with systemic lupus erythematosus and adherence to therapy – a qualitative study
Open access status: An open access version is available from UCL Discovery
DOI: 10.2147/PPA.S137544
Publisher version: https://doi.org/10.2147/PPA.S137544
Language: English
Additional information: This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License (http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms (https://www.dovepress.com/terms.php).
Keywords: Illness perception, adherence, communication, patients’ perspectives, qualitative research
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine
URI: https://discovery.ucl.ac.uk/id/eprint/10059396
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