A changed life: the life experiences of patients with psoriasis receiving biological treatment

被引:16
作者
Trettin, B. [1 ,2 ,4 ]
Feldman, S. R. [5 ]
Andersen, F. [4 ,6 ]
Danbjorg, D. B. [4 ]
Agerskov, H. [3 ,4 ]
机构
[1] Odense Univ Hosp, Dept Dermatol, Odense, Denmark
[2] Odense Univ Hosp, Allergy Ctr, Odense, Denmark
[3] Odense Univ Hosp, Dept Nephrol, Odense, Denmark
[4] Univ Southern Denmark, Dept Clin Res, Odense, Denmark
[5] Wake Forest Sch Med, Winston Salem, NC 27101 USA
[6] Private Hosp, Molholm, Denmark
关键词
QUALITY-OF-LIFE; ANTI-TNF THERAPY; ILLNESS PERCEPTIONS; RHEUMATOID-ARTHRITIS; MULTICENTER; INTERVIEWS; SEVERITY; NEEDS; CARE;
D O I
10.1111/bjd.18876
中图分类号
R75 [皮肤病学与性病学];
学科分类号
100206 ;
摘要
Background Psoriasis has a large negative impact on quality of life and is associated with both depression and anxiety. The introduction of biologics has improved treatment outcomes, but the ways in which patients perceive these improvements are not well characterized. Objectives To investigate the everyday life experiences of patients with psoriasis receiving biological treatment in order to gain an understanding of their needs and to improve the quality of care. Methods A qualitative narrative methodology was utilized. In total 48 h of participant observations during consultations, and 15 semistructured interviews, were conducted with patients receiving biological treatment. Data were analysed according to Ricoeur's theory of interpretation. Results Receiving biological treatment was experienced as a turning point, with a significant impact on physical, psychological and emotional levels. However, psychological consequences, such as isolation and social withdrawal, seemed to be a part of the patient's identity; the negative perceptions of psoriasis left marks behind that affected the patient's self-image. Perceived fear of discontinuation of the biological treatment resulted in insecurity, and patients were reluctant to initiate discussion about these concerns with healthcare professionals. Conclusions Providing assistance when patients enter the transition of receiving biological treatment may be important. Patients' fear of biological treatment being discontinued is an ongoing issue that healthcare professionals could address.
引用
收藏
页码:516 / 523
页数:8
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