Perspectives of Japanese patients on psoriatic disease burden: Results from “Psoriasis and Beyond,” the Global Psoriatic Disease Survey

Masanori Okuse, Masayuki Soekawa, Asako Itakura, Taisuke Kawamura, Sicily Mburu, Susan Frade, Yukari Okubo
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Abstract

Psoriatic disease (PsD) is a chronic disease affecting skin (psoriasis) and joints (psoriatic arthritis, PsA) that has a significant impact on patients' quality of life (QOL). We report findings from the Japanese subgroup of patients included in Psoriasis and Beyond: The Global Psoriatic Disease Survey, a cross‐sectional, quantitative online survey of patients with self‐reported, healthcare professional (HCP)‐diagnosed, moderate‐to‐severe plaque psoriasis, with or without PsA. Eligible patients who were recruited online completed a 25‐min internet‐based survey in Japanese. We assessed patients' understanding of the systemic nature of PsD, disease burden, perception towards their HCPs, treatment expectations, and satisfaction with care. Of the 148 patients, 74% were females. In total, 65% of patients were aware of the systemic nature of their disease. A minority of patients (27%) were aware that PsA was related to their psoriasis, and 30% and 42% of patients were unaware of any manifestations and comorbidities, respectively, related to PsD. Overall, 21% of patients reported that their disease has a “very large” to “extremely large” impact on their QOL (assessed by Dermatology Life Quality Index score), while the majority (61%) reported a “small” effect or “no effect” at all on QOL. Patients experienced stigma and discrimination and had a negative impact on relationships due to PsD. More patients with psoriasis and concomitant PsA (66%) were satisfied with their current treatment than those with psoriasis alone (46%). Overall, 41% of patients were not involved in deciding their treatment goals. These results suggest that Japanese patients may not be fully aware of the systemic nature of PsD, its manifestations and comorbidities. While these patients were somewhat satisfied with their current treatment, they were only occasionally consulted in deciding treatment goals. Policy measures are required to address the stigma and discrimination experienced by patients. Increased patient participation in their care supports shared decision‐making and enhanced treatment outcomes.
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日本患者对银屑病疾病负担的看法:全球银屑病调查 "银屑病及其他 "的结果
银屑病(PsD)是一种影响皮肤(银屑病)和关节(银屑病关节炎,PsA)的慢性疾病,对患者的生活质量(QOL)有很大影响。我们报告了 "银屑病及其他 "全球银屑病疾病调查中日本亚组患者的调查结果:全球银屑病调查 "是一项横断面定量在线调查,调查对象为自我报告、医护人员 (HCP) 诊断为中重度斑块状银屑病、伴有或不伴有 PsA 的患者。通过网络招募的合格患者用日语完成了 25 分钟的网络调查。我们评估了患者对银屑病系统性本质的理解、疾病负担、对其主治医生的看法、对治疗的期望以及对护理的满意度。在 148 名患者中,74% 为女性。总共有 65% 的患者意识到其疾病的系统性。少数患者(27%)知道 PsA 与银屑病有关,分别有 30% 和 42% 的患者不知道与 PsD 有关的任何表现和合并症。总体而言,21% 的患者表示他们的疾病对他们的生活质量有 "非常大 "到 "极大 "的影响(通过皮肤病生活质量指数评分进行评估),而大多数患者(61%)表示对生活质量的影响 "很小 "或 "没有影响"。患者因银屑病而遭受耻辱和歧视,并对人际关系产生负面影响。对当前治疗感到满意的银屑病合并 PsA 患者(66%)多于单纯银屑病患者(46%)。总体而言,41% 的患者没有参与决定他们的治疗目标。这些结果表明,日本患者可能没有充分认识到银屑病的系统性、其表现形式和合并症。虽然这些患者对目前的治疗有些满意,但在决定治疗目标时,他们只是偶尔被咨询。需要采取政策措施来解决患者遭受的耻辱和歧视。患者更多地参与治疗有助于共同决策和提高治疗效果。
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