What is the Perceived Role of the Dietitian Amongst People with Cystic Fibrosis? Results of an International survey

Abstract

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 (i) the importance of the CF diet, (ii) how often PwCF obtain dietary/nutritional advice from their dietitian, (iii) the perceived reliability of information given by the dietitian, (iv) other sources of CF information and their perceived reliability, and (v) 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.