Dietetic Service Delivery and Needs in Inborn Errors of Immunity

Introduction Little is known about nutritional management in inborn errors of immunity (IEIs), including clinician and service delivery needs. This is the first study internationally to explore the service and clinician needs for the nutritional management of people living with IEIs. This study aimed to explore the knowledge, perceptions, and needs of dietetic staff involved in the care of people with IEIs and the dietetic services provided to this group in Australian tertiary health care settings. Method A cross-sectional study was developed to evaluate the knowledge, perceptions, dietetic input, and needs of dietitians and dietetic managers who are involved in the care of people with an IEI. Participants were recruited via an invitation email through the dietitian’s network group associated with the Australian Society of Clinical Immunology and Allergy (ASCIA) and via heads of department of nutrition and dietetics in tertiary services across Australia. Data were analysed descriptively. Results Nine tertiary dietitians completed the survey. Our findings revealed few dietitians working with this group across adult and paediatric populations (full-time equivalent [FTE] ranging from 0 to 0.2 FTE), with greater service delivery focus on allergy and oncology. Faltering growth, malnutrition, gastrointestinal complications (diarrhoea, gut failure), nutritional deficiencies, disordered eating behaviours, malabsorption, and impaired bone mineral density were common presenting nutrition-related symptoms for people with IEIs. Dietitians reported a high willingness to work with people with IEIs and that appropriate nutrition is a high priority for this group. However, inadequate staffing and training and high caseload were barriers. Identified needs included the availability of evidence-based nutrition guidelines, resources for both patients and healthcare professionals, and professional communities of practice. Conclusion Our exploratory study identified a range of nutrition-related symptoms impacting people with IEIs and high willingness among dietitians to engage with this group. However, inadequate staffing, limited knowledge, and lack of standardised guidelines were barriers to working with IEIs. The development of evidence-based nutrition guidelines to support clinicians in working with IEI is a priority.