A Changed Life: The Life Experiences of Patients With Psoriasis Receiving Biological Treatment

B. Trettin; S.R. Feldman; F. Andersen; D.B. Danbjørg; H. Agerskov

Disclosures

The British Journal of Dermatology. 2020;183(3):516-523. 

In This Article

Abstract and Introduction

Abstract

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.

Introduction

Psoriasis has a large negative impact on quality of life,[1–3] and is associated with depression and anxiety.[4] When it is complicated by psoriatic arthritis, patients have even poorer quality of life,[5] higher healthcare costs, lower income, higher unemployment rates, higher risk for disability, and more comorbidities.[6] Despite improvements in treatment, the majority of patients even with well-controlled psoriasis are still not satisfied with their treatment.[7–9] This may be due to patients' dissatisfaction with psoriasis management, including lack of empathy and support by healthcare professionals (HCPs) who fail to recognize psoriasis as a complex long-term condition,[9] not acknowledging that living with psoriasis goes beyond the skin.

Living with psoriasis can affect self-image and is associated with stigmatization and social isolation.[10–12] Patients with psoriasis experience pain, redness and flares and struggle with altered body image.[13,14] Psoriasis may affect patients' major life-changing decisions and shape their lives in ways that might have been different in the absence of psoriasis.[15] These illness perceptions can be related to the common-sense model of self-regulation, which states that the ways in which patients perceive their condition are related to a certain pattern of how they structure their perceptions of illness.[16] These illness perceptions are cognitive representations, consisting of personal experiences based on patients' cultural and social contexts. Scharloo et al. found that patients with psoriasis with lower levels of perceived control and curability of illness have worse health outcomes.[17] These patients have been shown to have difficulties in controlling negative emotions;[18] also, the illness perceptions are associated with disease severity.[19] In contrast, disease severity is perceived differently among patients and HCPs.[20,21] Thus, exploring patients' experiences may contribute towards a shared understanding of illness perceptions.

The introduction of biologics has improved treatment outcomes and health-related quality of life,[22,23] and offers long-lasting benefits.[24] The use of biologics leads to physical improvement and greater confidence, but some psychosocial impact may remain.[25] While biologics may change patients' lives and their illness perception, how patients perceive these changes is not well characterized. Therefore, the objective of this study was to investigate the everyday life experiences of patients with psoriasis receiving biological treatment.

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