Department of Dermatology, Brigham and Women's Hospital and Harvard Medical School, 221 Longwood Ave, Boston, MA, 02115, USA.
Department of Dermatology, Boston University, Boston, MA, USA.
Arch Dermatol Res. 2020 Sep;312(7):527-531. doi: 10.1007/s00403-019-02006-8. Epub 2019 Nov 26.
Cutaneous lupus erythematosus (CLE) is a chronic skin disease that significantly impacts quality of life (QOL). This study tested a novel method to measure QOL in CLE using willingness-to-pay (WTP) stated preferences, and aimed to determine which of nine domains of life are most affected by CLE. Twenty-one participants with CLE ranked the domains in order of impact on CLE-related QOL, and then stated how many United States dollars they would be willing to pay for a hypothetical cure for each domain. Eighty-one percent of participants were female; mean age was 42.4 years. Photosensitivity was ranked highest by 71.4% of respondents. Participants were willing to pay the most for a hypothetical cure for CLE specific to photosensitivity (median = $200,000), the least for a cure specific to self-care (median = $0). Participants were willing to pay a median of $1,000,000 for an overall cure for CLE. Limitations include a small sample size for this pilot study and that willingness-to-pay may be influenced by individual perception of money and socioeconomic factors. This study successfully pilot-tested a WTP method and ranking task for health-related QOL. Photosensitivity was the domain of life most affected by CLE, which is a domain unique to our novel tool.
皮肤红斑狼疮（CLE）是一种慢性皮肤病，严重影响生活质量（QOL）。本研究采用意愿支付（WTP）陈述偏好测试了一种新的 CLE 患者 QOL 评估方法，并旨在确定 CLE 对生活的九个领域中哪一个受到的影响最大。21 名 CLE 患者按照对 CLE 相关 QOL 的影响程度对这些领域进行了排序，然后表明他们愿意为每个领域的假设治疗支付多少美元。81%的参与者为女性；平均年龄为 42.4 岁。71.4%的受访者将光敏感性列为首位。受访者最愿意为光敏感性的假设治疗支付（中位数=200,000 美元），而最不愿意为自我护理的假设治疗支付（中位数=0 美元）。受访者愿意支付 100 万美元的中位数用于 CLE 的整体治疗。本研究的局限性包括该初步研究的样本量较小，并且意愿支付可能受到个人对金钱和社会经济因素的看法的影响。本研究成功地测试了 WTP 方法和与健康相关的 QOL 排名任务。光敏感性是 CLE 影响最大的生活领域，这是我们新工具独有的领域。
