Department of Pediatrics and Adolescent Medicine, Juntendo University Graduate School of Medicine, 2-1-1, Hongo, Bunkyo-ku, Tokyo, 113-8421, Japan.
Department of Pediatrics, Faculty of Medicine, Kyoto University, Kyoto, Japan.
Rheumatol Int. 2023 Nov;43(11):2021-2030. doi: 10.1007/s00296-023-05425-z. Epub 2023 Aug 19.
To optimize patient prognosis, patient needs, including unmet needs, should be adequately assessed. However, such needs are more challenging to report and, consequently, more likely to go unmet compared with the needs reported by physicians. We aimed to determine the appropriate direction of future research on unmet medical needs in rheumatic diseases in Japan by conducting a literature review. We searched PubMed and Web of Science using 23 terms linked to unmet medical needs for major rheumatic diseases in Japan. Further, we collected articles on health-related quality of life and investigated the scales used for assessment, as well as whether the terms "unmet needs" or "unmet medical needs" were used. We identified 949 papers on 10 diseases, including systemic lupus erythematosus, systemic sclerosis, dermatomyositis, juvenile idiopathic arthritis, adult-onset Still's disease, antiphospholipid syndrome, mixed connective tissue disease, Takayasu arteritis, Sjögren's syndrome, and Behçet's disease; 25 of the 949 papers were selected for full-text review. Fifteen articles on five diseases were related to health-related quality of life. The term "unmet needs" was used in only one article. Six out of 15 studies used the 36-item short form survey, whereas the scales used in other studies differed. The optimal treatment plan determined by a physician may not necessarily align with the best interests of the patient. In clinical research, cross sectional and standardized indicators of health-related quality of life should be employed along with highly discretionary questionnaires to assess and optimize resource allocation in healthcare and simultaneously achieve patient-desired outcomes.
为优化患者预后，应充分评估患者需求，包括未满足的需求。然而，与医生报告的需求相比，这些需求更难报告，因此更有可能得不到满足。我们旨在通过文献回顾，确定日本风湿性疾病中未满足的医疗需求未来研究的适当方向。我们使用与日本主要风湿性疾病未满足医疗需求相关的 23 个术语，在 PubMed 和 Web of Science 上进行了搜索。此外，我们还收集了关于健康相关生活质量的文章，并调查了评估中使用的量表，以及是否使用了“未满足的需求”或“未满足的医疗需求”这两个术语。我们确定了 10 种疾病（包括红斑狼疮、系统性硬化症、皮肌炎、青少年特发性关节炎、成人Still 病、抗磷脂综合征、混合性结缔组织病、大动脉炎、干燥综合征和贝赫切特病）的 949 篇论文，其中 25 篇论文进行了全文审查。在这 949 篇论文中，有 15 篇涉及健康相关生活质量的论文来自 5 种疾病。只有一篇文章使用了“未满足的需求”这一术语。在涉及五种疾病的 15 篇文章中，有 6 篇使用了 36 项简短调查，而其他研究中使用的量表则有所不同。医生确定的最佳治疗方案不一定符合患者的最佳利益。在临床研究中，应同时使用横断面和标准化的健康相关生活质量指标以及高度自由裁量的问卷，以评估和优化医疗资源分配，并同时实现患者期望的结果。
