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影响系统性硬化症患者及其医生之间治疗满意度和认知差距的因素。

Factors Influencing Treatment Satisfaction and Recognition Gaps Between Physicians and Patients with Systemic Sclerosis.

作者信息

Shima Yoshihito, Uchida-Yamada Mona, Motegi Sei-Ichiro, Shimada Taku, Ishii Haruka, Ohya Yoshito, Kanai Yasumasa

机构信息

Laboratory of Thermo-Therapeutics for Vascular Dysfunction, Osaka University Graduate School of Medicine, Osaka, Japan.

Medical Affairs, Kyowa Kirin Co., Ltd., Tokyo, Japan.

出版信息

Rheumatol Ther. 2025 Apr;12(2):297-314. doi: 10.1007/s40744-025-00745-x. Epub 2025 Feb 5.

DOI:10.1007/s40744-025-00745-x
PMID:39907912
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11920495/
Abstract

INTRODUCTION

It is important to understand the differences in patient-physician perceptions and factors affecting satisfaction with treatment in patients with systemic sclerosis (SSc).

METHODS

This web-based survey (conducted in Japan in March 2023) targeted patients aged ≥ 18 years with SSc and physicians in hospitals with ≥ 20 beds and seeing ≥ 3 patients with SSc monthly. Physicians and patients answered similar questions.

RESULTS

Responders were 301 patients (63.8% female; 47.5% limited cutaneous SSc; 44.9% diffuse cutaneous SSc) and 129 physicians (51.2% rheumatologists; 20.9% dermatologists). The most common problematic symptoms reported by patients having each symptom were Raynaud's phenomenon (RP) (59.5%), skin tightening (47.4%), and malaise (45.5%). Physicians also perceived RP as the common problematic symptoms (46.5%). Conversely, there was a large gap in the perception of malaise as problematic (5.4%). There was a ≥ 20% difference in the percentage of respondents who felt that treatments improved symptoms of reflux esophagitis (48.8% in patients vs. 76.7% in physicians), dysphagia (25.0% vs. 52.7%), constipation (35.1% vs. 62.8%), diarrhea (36.1% vs. 62.8%), and pain (47.6% vs. 69.0%). Patient characteristics associated with high satisfaction with treatment included treatment responsiveness, age ≥ 50 years, being anti-topoisomerase I antibody positive, having dermatological or digestive symptoms as problematic symptoms, and not feeling they should have seen their physician earlier.

CONCLUSIONS

Patients and physicians had different perceptions of symptoms and treatment response. Patients' perception of improvement affected their satisfaction with treatment. Reviewing treatment goals and content between patients and physicians is necessary to improve treatment satisfaction.

TRIAL REGISTRATION

UMIN000050368.

摘要

引言

了解系统性硬化症(SSc)患者与医生认知的差异以及影响患者治疗满意度的因素很重要。

方法

这项基于网络的调查(于2023年3月在日本开展)针对年龄≥18岁的SSc患者以及床位≥20张且每月诊治≥3例SSc患者的医院的医生。医生和患者回答相似的问题。

结果

301例患者(63.8%为女性;47.5%为局限性皮肤型SSc;44.9%为弥漫性皮肤型SSc)和129名医生(51.2%为风湿病学家;20.9%为皮肤科医生)参与了调查。有每种症状的患者报告的最常见的问题症状为雷诺现象(RP)(59.5%)、皮肤紧绷(47.4%)和不适(45.5%)。医生也认为RP是常见的问题症状(46.5%)。相反,对于不适是否是问题症状的认知存在很大差距(5.4%)。在认为治疗改善了反流性食管炎症状的受访者百分比方面存在≥20%的差异(患者为48.8%,医生为76.7%),吞咽困难(25.0%对52.7%)、便秘(35.1%对62.8%)、腹泻(36.1%对62.8%)和疼痛(47.6%对69.0%)。与治疗高满意度相关的患者特征包括治疗反应性、年龄≥50岁、抗拓扑异构酶I抗体阳性、有皮肤或消化系统症状作为问题症状以及不觉得自己应该更早看医生。

结论

患者和医生对症状及治疗反应有不同认知。患者对改善的认知影响其治疗满意度。有必要在患者和医生之间回顾治疗目标及内容以提高治疗满意度。

试验注册

UMIN000050368。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/bc7c/11920495/a77b7be56a77/40744_2025_745_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/bc7c/11920495/9bda6ffca62f/40744_2025_745_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/bc7c/11920495/60817d36d298/40744_2025_745_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/bc7c/11920495/a77b7be56a77/40744_2025_745_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/bc7c/11920495/9bda6ffca62f/40744_2025_745_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/bc7c/11920495/60817d36d298/40744_2025_745_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/bc7c/11920495/a77b7be56a77/40744_2025_745_Fig3_HTML.jpg

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本文引用的文献

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