Samm De-Arne, Macoustra Aimee, Crane Rhiannon, McWilliams Leah, Proudman Susanna, 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. 2024 Oct;9(3):216-222. doi: 10.1177/23971983241264868. Epub 2024 Aug 8.
Systemic sclerosis is a debilitating inflammatory condition synonymous with gastrointestinal symptoms which have the potential to impact dietary intake and nutritional status. This study aimed to describe symptoms experienced by patients with systemic sclerosis that may impact on dietary intake and assess nutrition education preferences in this cohort.
A 24-item online qualitative and quantitative survey distributed via REDCap was conducted in adult patients (aged ⩾18 years) living with systemic sclerosis and attending outpatient services at a single healthcare setting from January to March 2022. Data were collected on demographics, symptoms that may impact dietary intake, nutrition priorities and preferred nutrition education models. Data are mean ± standard deviation or number (%).
Of 322 eligible patients, 156 (48%) participated (63 ± 12 years, 86% female, body mass index 27 ± 7 kg/m). Most patients experienced gastrointestinal conditions (n = 123/155; 79%), which occurred daily in 26% (n = 40/155) of patients. A third of patients (n = 48/156; 31%) reported diet manipulation for symptom management. Recent weight loss was common (n = 36/154; 23% of patients). Less than a third of patients had seen a dietitian (n = 45; 29%), while 69% of patients (n = 107) desired dietetic consultancy. The preferred methods of consultation were written resources and face-to-face, respectively, and systemic sclerosis symptom management (n = 100; 64%) and losing weight (n = 53; 34%) were the most desired education topics reported.
Gastrointestinal conditions are common and occur frequently in patients with systemic sclerosis. Patients want to engage with dietetics services to better manage symptoms via face-to-face consultations and written resources. These results will inform future dietetic service delivery.
系统性硬化症是一种使人衰弱的炎症性疾病,常伴有胃肠道症状,这些症状可能会影响饮食摄入和营养状况。本研究旨在描述系统性硬化症患者可能影响饮食摄入的症状,并评估该队列患者对营养教育的偏好。
2022年1月至3月,对在单一医疗机构门诊就诊的成年系统性硬化症患者(年龄≥18岁)进行了一项通过REDCap分发的包含24个项目的在线定性和定量调查。收集了有关人口统计学、可能影响饮食摄入的症状、营养优先事项和首选营养教育模式的数据。数据以均值±标准差或数量(%)表示。
在322名符合条件的患者中,156名(48%)参与了调查(年龄63±12岁,女性占86%,体重指数27±7kg/m²)。大多数患者有胃肠道疾病(n = 123/155;79%),其中26%(n = 40/155)的患者每天都出现此类症状。三分之一的患者(n = 48/156;31%)报告为控制症状而调整饮食。近期体重减轻很常见(n = 36/154;23%的患者)。不到三分之一的患者看过营养师(n = 45;29%),而69%的患者(n = 107)希望获得饮食咨询。首选的咨询方式分别是书面资料和面对面咨询,报告中最希望了解的教育主题是系统性硬化症症状管理(n = 100;64%)和减肥(n = 53;34%)。
胃肠道疾病在系统性硬化症患者中很常见且频繁发生。患者希望通过面对面咨询和书面资料参与饮食服务,以更好地控制症状。这些结果将为未来的饮食服务提供参考。