Qualitative investigation of disease course, characteristics and lived experience of generalized pustular psoriasis.

IF 3.7 4区医学 Q1 DERMATOLOGY Clinical and Experimental Dermatology Pub Date : 2024-10-24 DOI:10.1093/ced/llae194

Emily A Parks, Mallory L Zaino, Bettina Trettin, Steven R Feldman

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Abstract

Background: Generalized pustular psoriasis (GPP) is a relapsing-remitting chronic disease characterized by painful pustules with systemic symptoms that has a negative impact on quality of life. The psychosocial and economic burden of this rare condition is not well characterized.

Objectives: To qualitatively characterize the cumulative burden of GPP on patients' quality of life and psychosocial wellbeing.

Methods: A retrospective chart review of patients with GPP was performed to collect demographic information, followed by prospective semistructured clinical interviews. Interview transcripts were analysed using thematic analysis.

Results: Three major themes were revealed: (i) burden of having a chronic disease with an unpredictable course, (ii) an inability to fulfil societal roles results in a loss of identity, and (iii) a physician-patient relationship grounded in trust and transparency can be invaluable in helping patients endure chronic disease.

Conclusions: GPP has a negative impact on patients' quality of life and psychosocial wellbeing. Impairments in daily function and mental health primarily affect patients during flares and influence behaviour during periods of quiescence. A strong patient-physician relationship may help mitigate the impact of GPP.

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对泛发性脓疱型银屑病的病程、特征和生活经历进行定性调查。

背景：泛发性脓疱型银屑病（GPP）是一种复发性-缓解性慢性疾病，以疼痛性脓疱为特征，伴有全身症状，对生活质量造成负面影响。这种罕见疾病造成的社会心理和经济负担尚未得到很好的描述：定性分析泛发性脓疱型银屑病对患者生活质量和社会心理健康造成的累积负担：方法：对泛发性脓疱型银屑病患者进行回顾性病历审查，收集人口统计学信息，然后进行前瞻性半结构化临床访谈。采用主题分析法对访谈记录进行分析：结果：揭示了三大主题：(1) 罹患慢性疾病且病程难以预测所带来的负担；(2) 无法履行社会角色导致身份认同感缺失；(3) 以信任和透明为基础的医患关系对于帮助患者忍受慢性疾病是非常宝贵的：GPP对患者的生活质量和社会心理健康有负面影响。日常功能和心理健康的损害主要在疾病发作时影响患者，并在静止期影响患者的行为。稳固的医患关系有助于减轻 GPP 的影响。

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来源期刊

Clinical and Experimental Dermatology 医学-皮肤病学

CiteScore

3.20

自引率

2.40%

发文量

389

审稿时长

3-8 weeks

期刊介绍： Clinical and Experimental Dermatology (CED) is a unique provider of relevant and educational material for practising clinicians and dermatological researchers. We support continuing professional development (CPD) of dermatology specialists to advance the understanding, management and treatment of skin disease in order to improve patient outcomes.