Samm De-Arne A, Macoustra Aimee R, Crane Rhiannon K, McWilliams Leah M, Proudman Susanna M, Chapple Lee-Anne S
Department of Nutrition and Dietetics, Royal Adelaide Hospital, Adelaide, SA, Australia.
Department of Nutrition and Dietetics, Central Adelaide Local Health Network, Royal Adelaide Hospital, Adelaide, SA, Australia.
J Scleroderma Relat Disord. 2023 Oct;8(3):203-209. doi: 10.1177/23971983231185465. Epub 2023 Jul 6.
Systemic sclerosis (scleroderma) is an incurable inflammatory condition synonymous with unique nutrition needs. As rheumatologists are frequently responsible for managing the various organ manifestations, this study aimed to understand the service needs and nutritional concerns of rheumatologists involved in the care of adults with systemic sclerosis.
A 13-item online qualitative and quantitative survey was distributed via REDCap from January to March 2022 to rheumatologists who are members of the Australian Scleroderma Interest Group and consult patients with systemic sclerosis. Data were collected on rheumatologists' demographics, and their views on symptoms observed, nutrition concerns and priorities, and preferred dietetic service provision for their patients. Data are reported as number (%).
Of 27 eligible rheumatologists, 17 (63%) completed the survey. All rheumatologists reported gastrointestinal symptoms in their patients ( = 17, 100%); predominantly reflux ( = 17, 100%) and dysphagia ( = 17, 100%). Weight loss was observed by the majority of rheumatologists ( = 15, 88%). Rheumatologists reported patients used food avoidance/special diets to manage symptoms ( = 12, 71%). Dietetic consultation was reported as potentially beneficial by all rheumatologists, with the preferred time being when symptoms increase or change ( = 15, 88%), and the preferred approaches being written resources ( = 15, 88%), face-to-face ( = 14, 82%) and telephone consultation ( = 14, 82%). Advice on gaining weight ( = 14, 82%) and systemic sclerosis symptom management ( = 13, 77%) were the most desired education topics reported.
Rheumatologists commonly observe gastrointestinal symptoms in patients with systemic sclerosis and report dietetics services would be advantageous in supporting their patients to gain weight and better manage their symptoms.
系统性硬化症（硬皮病）是一种无法治愈的炎症性疾病，伴有独特的营养需求。由于风湿病学家经常负责管理各种器官表现，本研究旨在了解参与成年系统性硬化症患者护理的风湿病学家的服务需求和营养关注点。
2022年1月至3月，通过REDCap向澳大利亚硬皮病兴趣小组的成员且为系统性硬化症患者提供咨询的风湿病学家发放了一份包含13个项目的在线定性和定量调查问卷。收集了风湿病学家的人口统计学数据，以及他们对观察到的症状、营养关注点和优先事项，以及为患者提供首选饮食服务的看法。数据以数字（%）形式报告。
在27名符合条件的风湿病学家中，17名（63%）完成了调查。所有风湿病学家都报告了他们患者的胃肠道症状（n = 17，100%）；主要是反流（n = 17，100%）和吞咽困难（n = 17，100%）。大多数风湿病学家观察到患者体重减轻（n = 15，88%）。风湿病学家报告患者采用食物回避/特殊饮食来管理症状（n = 12，71%）。所有风湿病学家都认为饮食咨询可能有益，首选时间是症状加重或改变时（n = 15，88%），首选方式是书面资料（n = 15，88%）、面对面咨询（n = 14，82%）和电话咨询（n = 14，82%）。增加体重的建议（n = 14，82%）和系统性硬化症症状管理（n = 13，77%）是报告中最希望了解的教育主题。
风湿病学家通常会观察到系统性硬化症患者的胃肠道症状，并报告饮食服务有助于支持患者增加体重并更好地管理症状。
