Department of Dermatovenereology, Haukeland University Hospital, Bergen, Norway.
Department of Clinical and Experimental Medicine, Faculty of Medicine and Health Sciences, Linköping University, Linköping, Sweden.
J Eur Acad Dermatol Venereol. 2019 Feb;33(2):340-354. doi: 10.1111/jdv.15252. Epub 2018 Nov 28.
There are scarce data in Scandinavia about treatment satisfaction among patients with psoriasis (PsO) and/or psoriatic arthritis (PsA). The number of patients receiving systemic treatment is unknown.
To describe patients' experience of treatments for PsO/PsA in Sweden, Denmark and Norway, addressing communication with physicians, satisfaction with treatment and concerns regarding treatment options.
The NORdic PAtient survey of Psoriasis and Psoriatic arthritis (NORPAPP) asked 22 050 adults (randomly selected from the YouGov panels in Sweden, Denmark and Norway) whether they had PsO/PsA. A total of 1264 individuals who reported physician-diagnosed PsO/PsA were invited to participate in the full survey; 96.6% responded positively.
Systemic treatment use was reported by 14.6% (biologic: 8.1%) of respondents with PsO only and by 58.5% (biologic: 31.8%) of respondents with PsA. Biologic treatments were more frequently reported by respondents considering their disease severe (26.8% vs 6.7% non-severe) and those who were members of patient organizations (40.7% vs 6.9% non-members). Discussing systemic treatments with their physician was reported significantly more frequently by respondents with PsA, those perceiving their disease as severe (although 35.2% had never discussed systemic treatment with their physician) and those reporting being a member of a patient organization (P < 0.05). Many respondents reported health risk concerns and dissatisfaction with their treatment. Of special interest was that respondents aged 45-75 years reported less experience with biologics (8.1%) than those aged 18-44 years (21.5%). The older respondents also reported more uncertainty regarding long-term health risks related to systemic treatments (most [66.7-72.9%] responded 'do not know' when asked about the risk of systemic options).
It appears likely that substantial numbers of Scandinavians suffering from severe PsO/PsA are not receiving optimal treatment from a patient perspective, particularly older patients. Also, one-third of respondents with severe symptoms had never discussed systemic treatment with a physician.
在斯堪的纳维亚地区,有关银屑病(PsO)和/或银屑病关节炎(PsA)患者治疗满意度的数据稀缺。接受系统治疗的患者人数未知。
描述瑞典、丹麦和挪威患者接受 PsO/PsA 治疗的体验,包括与医生的沟通、对治疗的满意度以及对治疗选择的关注。
北欧银屑病和银屑病关节炎患者调查(NORPAPP)询问了来自瑞典、丹麦和挪威的 YouGov 小组中随机选择的 22050 名成年人,他们是否患有 PsO/PsA。共有 1264 名报告有医生诊断为 PsO/PsA 的个体被邀请参加全面调查;96.6%的人积极回应。
报告患有 PsO 且接受系统治疗的患者占 14.6%(生物制剂:8.1%),报告患有 PsA 且接受系统治疗的患者占 58.5%(生物制剂:31.8%)。考虑到疾病严重程度,生物制剂治疗更频繁地被报告为患者(26.8% vs 6.7%非严重)和患者组织成员(40.7% vs 6.9%非成员)。与医生讨论系统治疗的情况,报告为患有 PsA 的患者、认为自己疾病严重的患者(尽管 35.2%从未与医生讨论过系统治疗)和报告为患者组织成员的患者更为频繁(P < 0.05)。许多患者报告存在健康风险担忧和对治疗的不满。特别值得注意的是,45-75 岁的患者报告使用生物制剂的经验较少(8.1%),而 18-44 岁的患者报告使用生物制剂的经验较多(21.5%)。年龄较大的患者还报告称,他们对与系统治疗相关的长期健康风险的不确定性更大(当被问及系统治疗的风险时,大多数人[66.7-72.9%]回答“不知道”)。
从患者的角度来看,似乎有大量患有严重 PsO/PsA 的斯堪的纳维亚人没有接受最佳治疗,特别是年龄较大的患者。此外,三分之一有严重症状的患者从未与医生讨论过系统治疗。