My Health Career is pleased to present a guest blog post from Accredited Practicing Dietitian Nicole Micallef. Nicole coordinates a state-wide cystic fibrosis service (Tasmania). This role allows her to combine her passions for clinical dietetics, interdisciplinary practice, leadership, chronic condition self-management, and research. She is currently the Cystic Fibrosis Interest Group Convenor for the Dietitians Association of Australia and is completing her PhD in the area of children’s chronic condition self-management.
“With a little help from health professionals, anything is possible for a person with cystic fibrosis (CF). People with this condition can – go to university, have successful careers, be parents, write piano concertos, win modelling competitions, play professional rugby, and ride a bike from Paris to Istanbul.
CF is a complex condition that affects many part of the body, mostly the lungs and digestive system. Approximately 3000 Australians have CF. Despite new and continually improving treatments, CF remains an incurable and life limiting condition. A simple cold can lead to a serious lung infection and a lengthy hospital admission. If that doesn’t sound bad enough, to remain healthy individuals with CF spend up two hours a day completing preventative treatments. Being a multi-system condition, optimal management involves many different health professionals and care is usually provided at a specialist CF centre. The core ‘CF team’ consists of a doctor, nurse, physiotherapist, social worker and dietitian.
Good nutrition helps people with CF to fight infections and maintain overall good health.
What does a cystic fibrosis dietitian do?
As a CF dietitian, I ‘custom design’ nutrition treatment plans to make sure that every child in my care receives the nutrients and energy (calories) they need. If a child is not growing well, I may recommend the addition of nutritional supplements to their diet, that they eat extra McDonalds (yes, we currently promote a high-fat and high-salt diet) or the placement of a feeding tube. A lot of my clinical time is spent discussing poo, diarrhoea, abdominal cramps, and farting. Approximately 90% of people with CF have difficulty breaking down their food and need to take pancreatic enzymes; it is the role of the dietitian to adjust enzyme doses to alleviate gastrointestinal symptoms. In addition, people with CF often have additional nutritional needs caused by diabetes, osteoporosis (thinning of the bones), liver disease, pregnancy, transplant or even additional exercise.
How can I see my role as a cystic fibrosis dietitian changing in the future?
Change is inevitable. While I can’t predict the future, there are five trends that I think will continue to change the way that CF dietitians work. These are:
- Emerging gene-therapies for CF. In 2013, the Australian government approved Ivacaftor* for people with CF who have a specific genetic mutation (genotype G551D, 5% of the CF population). This drug is the first to address the cause of CF and opens the door for more research into gene-therapies. From a nutrition perspective, overseas data show that once people start on Ivacaftor they gain substantial weight and require less or no pancreatic enzymes. More individualised tailored dietary management based on CF genotypes will be required.
*Ivacaftor is currently not reimbursed for Australians and is estimated to cost $300,000 per year, per patient.
- An aging, better nourished CF population. Due to malnutrition being less and less prevalent, I predict that CF dietitians will start recommending a Mediterranean style diet similar to what we currently suggest for the general Australian population. Studies completed in non CF populations, and some in CF, show that a Mediterranean style diet (or its components) reduces inflammation and promotes longevity.
- An external quality focus and benchmarking. Peer review (our colleagues and clients reviewing our work and determining if it is at a high enough standard) and openly published benchmarking results (comparisons of the performance of CF centres) will help to identify better ways of providing nutrition care.
- A team based approach to nutrition. Good nutritional outcomes require the support whole CF team. Great CF teams consist of people who complement each other and push the group’s performance above that that could be achieved by an individual alone. Dietitians have the training and expertise to play a both a decisive role in the direct nutrition treatment of people with CF and in mentoring of the other disciplines involved.
- Telemedicine and technology. Many people with CF live far away from their specialist CF centre. CF Dietitians in Queensland and Tasmanian have recently started successfully using videoconferencing to reach patients in regional/remote areas. Email consultations may also help facilitate communication between CF dietitians and their clients. In addition, increasing technologies (e.g. apps designed for tablets) will empower people with CF to manage their own diet. Dietitians who can embrace and/or develop these technologies will be well ahead of the pack.
Do I have any advice for people considering becoming cystic fibrosis dietitian?
All dietetics courses accredited by the Dietitians Association of Australia will teach you the basic skills to work with clients with CF. However, to secure a job in a specialist CF team you generally require a minimum of 5 years clinical dietetic experience and you need to demonstrate considerable advanced dietetic skills. Many CF dietitians have additional (post graduate) qualifications in areas such as paediatric dietetics, diabetes education, chronic condition management, research, and public health. Mentoring is available to all new CF dietitians.
Photo: 10th Australasian Cystic Fibrosis Conference. Left to right = Dr Carli Armstrong (intern), Dr Ingrid Els (paediatrician) and Nicole Micallef (dietitian). Written permission to use photo has been provided via email.
Nicole Micallef B.Bio.Med.Sci (Hons 1), M. Nutr. Diet., G.Cert.Health. (Self-management), APD/AN”
When we first published this article, we had people on social media who asked questions about why a dietitian would be recommending McDonalds! Nicole has clarified this in the comments below. Amanda – Founder MHC :-)