Blome C, Costanzo A, Dauden E, Ferrandiz C, Girolomoni G, Gniadecki R, Iversen L, Menter A, Michaelis-Wittern K, Morita A, Nakagawa H, Reich K, Augustin M
Institute for Health Services Research in Dermatology and Nursing (IVDP), German Center of Health Services Research in Dermatology (CVderm), University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Germany.
Dermatology Unit, NESMOS Department, Department of Dermatology, University of Rome 'Tor Vergata', Rome, Italy.
Qual Life Res. 2016 May;25(5):1179-88. doi: 10.1007/s11136-015-1136-y. Epub 2015 Oct 3.
Patient-centered health care implies that medical decisions are made jointly by physician and patient, based on patient needs. Aims were to (a) identify treatment goals for a new questionnaire on patient needs and benefits in nail psoriasis treatment; (b) analyze the importance of treatment goals in patients with nail psoriasis in general and in defined subgroups; and (c) determine the association between overall treatment goal importance and quality of life.
The study comprised the following steps: qualitative survey on needs and burdens in 120 patients; development of items by an interdisciplinary expert group; item testing in 55 patients in four countries; revision of the questionnaire and assessment in 203 patients in six countries (Germany, Denmark, Italy, Spain, USA, Japan). The percentage of patients rating the goals as 'quite/very important' was compared between various patient subgroups.
Based on 692 free-text statements, 26 items were developed which were reduced to 24 items after pilot testing. Each of these treatment goals applied to the majority of patients in the multi-center study. Goal importance increased with severity of nail psoriasis, but not with age or disease duration. Manual dexterity and social interaction were of particular importance. Goal importance and quality of life were associated, but not redundant (r = 0.612, p < 0.001).
Patients with nail psoriasis have manifold and specific treatment goals. Goal importance is a construct different from disease-specific quality of life and should be assessed separately. The new questionnaire can support goal setting in clinical practice.
以患者为中心的医疗保健意味着医疗决策由医生和患者根据患者需求共同做出。本研究旨在：（a）确定一份关于甲银屑病治疗中患者需求和益处的新问卷的治疗目标；（b）分析治疗目标在一般甲银屑病患者及特定亚组患者中的重要性；（c）确定总体治疗目标重要性与生活质量之间的关联。
本研究包括以下步骤：对120名患者的需求和负担进行定性调查；由跨学科专家组制定条目；在四个国家的55名患者中进行条目测试；对问卷进行修订并在六个国家（德国、丹麦、意大利、西班牙、美国、日本）的203名患者中进行评估。比较不同患者亚组中认为目标“相当/非常重要”的患者百分比。
基于692条自由文本陈述，制定了26个条目，经过预试验后减少至24个条目。这些治疗目标中的每一个都适用于多中心研究中的大多数患者。目标重要性随甲银屑病严重程度增加而增加，但不随年龄或病程增加。手部灵活性和社交互动尤为重要。目标重要性与生活质量相关，但并非冗余相关（r = 0.612，p < 0.001）。
甲银屑病患者有多种特定的治疗目标。目标重要性是一个不同于疾病特异性生活质量的概念，应单独评估。新问卷可支持临床实践中的目标设定。
