Analysis of an Online Cystic Fibrosis Forum; Common Nutritional Concerns and Quality of Information Shared

Background: Cystic Fibrosis (CF) is an autosomal recessive genetic disease characterised by a respiratory decline and pancreatic insufficiency. Research advances include aggressive use of antibiotics, mucolytics and nutritional interventions, extending the median age of survival to 41.5 years [1]. Nutritional status is a prognostic indicator of survival and remains central to treatment and care. Despite advances, nutritional compromise associated with fat malabsorption and anorexia and co-morbidities such as cystic fibrosis related diabetes (CFRD) and osteoporosis remain common areas of concern to patients. Lake [2] reported that patients themselves identify weight, pancreatic enzyme replacement therapy (PERT), gastrostomy feeding, CFRD and knowledge of the dietitian’s input and role as important areas to them. Their nutritional concerns remain part of a complex picture where high levels of depression and anxiety are common [3]. A policy of rigid infection control which prohibits patient contact compounds these issues, resulting in isolation and a lack of peer support. Online communication between people with CF is therefore common. Although studies have examined social networking and concerns about pregnancy online in CF, there are none that examine nutrition. The aim of this study was to examine the nutritional concerns shared on an online CF forum; identifying the nutritional themes important to patients and assessing the quality of information shared between online participants. Methods: The CF Trust online forum was identified to analyse posts concerning nutritional queries raised by online participants over a defined six months period and anonymised to protect each participant’s identity. Framework analysis was used as an inductive approach for analysis, allowing for the inclusion of a priori as well as emergent concepts. A priori concepts were identified from the key nutritional themes identified by Lake [2] i.e. weight, PERT, gastrostomy feeding, CFRD and knowledge of the dietitian. Initial posts and responses were systematically recorded, quantified and analysed. Their content was compared to the evidence-base and best practice in CF in each identified area. The CF Trust forum is open and publically available, therefore ethical approval was gained through Leeds Metropolitan University ethics committee only. Results: The most frequently discussed topics with corresponding number of initial posts were CFRD (24), weight (21), PERT (17), Dietitian (6) and gastrostomy feeding (2). Key themes of nutritional concern identified included; insulin use (CFRD), being underweight (Weight) and Creon and dose adjustment (PERT). A poor understanding of CFRD was evident, with 13 instances of non-understanding of CFRD identified. Further concepts emerged, including driving with CFRD, exercise and desire for healthier, high energy snacks. Of 253 total responses to posts, 251 (99.2%) contained safe, non-harmful advice in line with the evidence-base which was well received by participants. Only 2 of 253 responses (0.8%) contained incorrect and potentially harmful advice; re-use of insulin needles and use of cannabis as an alternative medication for CFRD. Discussion: This study confirms that online networks provide an opportunity for CF patients to share information. In doing so, they provided safe and supportive nutritional advice in areas which aligned with previously identified themes. CFRD was the most frequently identified subject raised and a lack of understanding of this co-morbidity was frequently identified. Patients were predominantly well informed and shared safe information in line with the current evidence base. However potentially harmful advice or information was also present. Conclusion: Online fora are a useful resource from which to extract service user concerns which can inform service development. Shared posts demonstrate common themes previously reported but extend this to identify practical aspects of CFRD as a chief concern, identifying a need for further patient education on all aspects of CFRD. With increased longevity a focus on food and exercise was evident, including healthier suggestions for high energy foods than those historically advocated. These findings can be used to inform future service design and provision.

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