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印度银屑病患者对银屑病疾病对生活质量影响的看法:全球银屑病及其他调查的子分析

Patient Perspectives of the Impact of Psoriatic Disease on Quality-of-Life in India: Sub-analysis from the Global Psoriasis and Beyond Survey.

作者信息

Chandrashekar B S, Nayak Chitra S, Kar Bikash R, Salloju Vineeth

机构信息

Department of Dermatology, CUTIS Academy of Cutaneous Sciences, Bengaluru, Karnataka, India.

Department of Dermatology, Nair Hospital, Mumbai, Maharashtra, India.

出版信息

Indian Dermatol Online J. 2024 Feb 28;15(2):233-241. doi: 10.4103/idoj.idoj_350_23. eCollection 2024 Mar-Apr.

Abstract

BACKGROUND

Psoriatic disease (PsD), including plaque psoriasis (PsO) and psoriatic arthritis (PsA), comprises a wide spectrum of manifestations and significantly impacts quality-of-life (QoL). Here, we assessed patients' understanding of PsO and PsA as a systemic disease, its impact on their physical and emotional well-being, and patients' experiences with healthcare professionals for shared treatment decision-making.

MATERIALS AND METHODS

The Global Psoriatic Disease and Beyond Survey was a cross-sectional, qualitative, online survey conducted on patients with moderate-to-severe PsO with/without concomitant PsA. This analysis reports findings from Indian patients.

RESULTS

Of the 261 surveyed patients, 27% with PsO reported concomitant PsA, of whom 89% reported PsA severity as moderately or highly active. Overall, 92% had heard the term "PsD," and 90% knew their condition was a systemic disease. Few were aware of PsD manifestations (palmoplantar psoriasis, 49%; nail psoriasis, 43%; axial symptoms, 40%; PsA, 34%) and comorbidities (cardiovascular disease, 33%; obesity, 30%; diabetes, 28%). Eighty-nine percent of patients indicated their skin problems had a "very-large" to "extreme-large" impact on QoL. Ninety-seven percent of patients experienced discrimination and stigmatization from others. Eighty-one percent of patients were not involved in deciding treatment goals. Few (PsO, 6%; PsA, 9%) patients were dissatisfied with current treatment; ≥50% patients reported incomplete relief of skin symptoms (PsO) and joint symptoms (PsA) as the reason for dissatisfaction.

CONCLUSION

Lack of awareness of the manifestations and comorbidities associated with PsD and poor QoL highlights the need for patient education, shared treatment decision-making, and a multidimensional approach to PsD management in India.

摘要

背景

银屑病性疾病(PsD),包括斑块状银屑病(PsO)和银屑病关节炎(PsA),表现形式多样,对生活质量(QoL)有显著影响。在此,我们评估了患者对PsO和PsA作为一种全身性疾病的理解、其对患者身心健康的影响,以及患者与医护人员共同进行治疗决策的经历。

材料与方法

全球银屑病性疾病及其他情况调查是一项针对中重度PsO伴/不伴PsA患者的横断面、定性在线调查。本分析报告了印度患者的调查结果。

结果

在261名接受调查的患者中,27%的PsO患者报告伴有PsA,其中89%报告PsA严重程度为中度或高度活动。总体而言,92%的患者听说过“PsD”一词,90%的患者知道自己的病情是一种全身性疾病。很少有人了解PsD的表现(掌跖银屑病,49%;甲银屑病,43%;轴向症状,40%;PsA,34%)和合并症(心血管疾病,33%;肥胖,30%;糖尿病,28%)。89%的患者表示其皮肤问题对生活质量有“非常大”到“极其大”的影响。97%的患者经历过他人的歧视和污名化。81%的患者未参与治疗目标的决策。很少有患者(PsO患者为6%;PsA患者为9%)对当前治疗不满意;≥50%的患者报告皮肤症状(PsO)和关节症状(PsA)未完全缓解是不满意的原因。

结论

对与PsD相关的表现和合并症缺乏认识以及生活质量较差,凸显了在印度进行患者教育、共同治疗决策以及采用多维方法管理PsD的必要性。

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