School of Biomedical Sciences, Ulster University, Londonderry, Northern Ireland, UK.
Northern Ireland Regional Adult Cystic Fibrosis Centre, Belfast, Northern Ireland, UK.
Can J Diet Pract Res. 2023 Sep 1;84(3):149-153. doi: 10.3148/cjdpr-2022-044. Epub 2023 Mar 29.
Cystic fibrosis (CF) is a chronic condition requiring continued input from the CF dietitian as an integral part of the CF multidisciplinary team. In recent years, the longer life expectancy experienced by people with CF (PwCF) means that nutrition advice and therapy are evolving from a focus on nutrition support to prevention and management of comorbidities. Little has been reported regarding the perceived role of the CF dietitian amongst PwCF. We report the responses to 11 questions that were part of a larger international survey distributed to members of national CF charities in 2018-2019. These questions evaluated PwCFs' perspectives on () the importance of the CF diet, () how often PwCF obtain dietary/nutritional advice from their dietitian, () the perceived reliability of information given by the dietitian, () other sources of CF information and their perceived reliability, and () how CF nutrition/diet, as well as CF-related diabetes, ranked as research priorities. There were 295 respondents from 13 countries. Almost half of the respondents (46.8%) contacted their CF dietitian on a frequent/more regular basis, compared to medical/scientific journals/medical/scientific search engines. The CF dietitian was considered a reliable source of information, as 84% of the respondents indicated that the information provided was very/generally reliable. At a time when CF care and expectations are changing rapidly, PwCF are in need of trusted and reliable information to make positive changes in lifestyle and habits. Dietitians working with PwCF should appreciate the pivotal and valued role they perform as purveyors of robust evidence-based information to this chronic disease population.
囊性纤维化（CF）是一种慢性疾病，需要 CF 营养师作为 CF 多学科团队的重要组成部分，持续投入。近年来，CF 患者（PwCF）的预期寿命延长，意味着营养建议和治疗正在从营养支持的重点转向预防和管理合并症。关于 CF 营养师在 PwCF 中的作用，鲜有报道。我们报告了对 2018-2019 年期间分发给各国 CF 慈善机构成员的一项更大的国际调查中 11 个问题的回答。这些问题评估了 PwCF 对以下方面的看法：（1）CF 饮食的重要性；（2）PwCF 从营养师那里获得饮食/营养建议的频率；（3）营养师提供的信息的可靠性感知；（4）CF 信息的其他来源及其可靠性感知；以及（5）CF 营养/饮食以及 CF 相关糖尿病作为研究重点的重要性。来自 13 个国家的 295 名受访者回答了这些问题。近一半的受访者（46.8%）经常/更频繁地联系他们的 CF 营养师，而不是医疗/科学期刊/医疗/科学搜索引擎。CF 营养师被认为是可靠的信息来源，因为 84%的受访者表示提供的信息非常/通常是可靠的。在 CF 护理和期望迅速变化的时代，PwCF 需要值得信赖和可靠的信息，以在生活方式和习惯上做出积极的改变。与 PwCF 合作的营养师应该意识到他们作为提供强大循证信息的关键和有价值的角色，这对慢性疾病患者群体至关重要。
