For those who can't make it to Sydney in August 2015 for the Australasian CF Conferene, we will endeavour to keep you up-to-date throughout both the Lay and the Scientific Conferences.
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The reality of cystic fibrosis (CF) is that things could always be better. CF health professionals are always looking for their patients to have greater lung function, to reach the perfect body mass index (BMI), to adhere completely to prescribe medications and physiotherapy regimens and more. However members of the CF multi-disciplinary team (MDT) ask as much, if not more, of themselves and their colleagues as they do of their patients. They want to do better so that those living with CF can live better.
Day Three of the 11th Australasian CF Conference, with the medical and scientific program in full swing, began with discussion on the development of Australian Standards of Care and the implementation of a Peer Review process around the country.
Professor Scott Bell from the Prince Charles Hospital in Brisbane was quite apologetic over the delay in release of a Standards of Care report for Australian CF Centres. Paradoxically in some ways the pace and ever-changing face of CF management, the rapid development of new medications, the emergence of telehealth and the ageing CF population, the fact that working with CF can be “in the fast lane” as this conference is themed, have actually slowed down the development of Standard of Care guidelines. Much work is needed to reassess the scope of this document to ensure it is relevant and accurate. Stay tuned for 2017!
A Peer Review of the quality of healthcare service at CF Centres in Australia has been in progress for a number of years. It has looked at staffing levels, infrastructure and accessibility, amongst other things, to assess the capacity of each centre to produce a desired outcome for patients. Work to date has highlighted areas that are lacking in each Centre and already we are seeing measures to address these problems in both Queensland and Victoria.
Furthermore throughout the day, a plethora of high quality, innovative research projects undertaken by CF health professionals were presented as posters and oral presentations. Two projects in which CFV has participated - the Carrier Screening awareness campaign and the development of SPILL, the sexual health reference for adolescents with CF, were on display.
The Alfred, Monash and Royal Children’s all showcased their research on a wide range of topics including the use of telehealth, the benefits of Kalydeco, the impact and perception of Allied Health services, post transplant health, infection management, nutrition and diet, development of a wellness score tool, new strategies for inserting lines into veins in paediatric patients, managing transition, and training to help clinicians support patients with their adherence to treatment.
So much happening to move good to better to best! Everyone wants the same thing – for people with CF to not only survive but to thrive!
What are the real costs of cystic fibrosis (CF)? We know the expenses associated with CF medical care are significant. The growing cost of medicines and treatments, the cost of equipment to test, monitor and maintain the disease, and the money spent on additional food and other items needed by someone with disease are widely acknowledged as the financial burden of CF. Healthcare systems are bearing the cost of the large interdisciplinary team that help manage each person’s experience of CF, as well as the cost of lengthy and ongoing hospital admissions.
But the cost of CF for the individual, the family and society are far greater than the dollars and cents spent in these ways, as a panel discussed in an afternoon plenary session combining the lay and medical/scientific Australasian CF conferences in Sydney on Sunday.
Professor Barry Plant from Cork University Hospital in Ireland spoke on both the emotional drain and the time that adults with CF must spend managing their disease.
Professor Pradeep Singh from the University of Washington highlighted how CF threatens a person’s capacity to reach their full potential.
Sian Ellett, a young adult with CF, touched on the cost to a person’s self awareness and loss of ability to look beyond the disease as required healthcare regimen is a constant reminder of a person’s illness. She highlighted the loss of control and the vulnerability associated with being sick and need for more consultation and recognition in the management of her own disease.
Susan Biggar, who has two sons with CF, spoke of the chronic sadness that CF brings to a family as well as the loss of a parent’s (usually mother’s) ability to fulfill her own career and life dreams.
Frances Hollander, dietician from University Medical Centre Utrecht in The Netherlands mentioned the ever-increasing demand on the time of clinicians and health professionals to adequately address the complex needs of the growing CF population.
Professor Eleanor Main, physiotherapist from the Institute of Child Health in London, spoke on the cost of research and clinical trials, which are not only expensive to conduct but can also be an added burden for trial participants. Yet no comprehensive solutions have been reached.
Associate Professor John Massie, Royal Children’s Hospital in Melbourne, spoke of recurring grief as the disease progresses and other complications arise. He also stressed the impact CF has on the whole family and the loss of independence and need to rely on the assistance of others.
Professor David Issacs from Children’s Hospital in Westmead addressed the financial cost to society and how the healthcare system and hospitals have finite resources and hard decisions and choices have to be made in the context of the community as a whole.
Much discussion ensured around the moral, social and practical implications of these costs. But it hardly scratched the surface of the impact of CF. The topics covered fell short of providing a comprehensive look at the real costs of CF. We did not hear from social workers, mental health professionals, nurses or CF state organisations. Siblings, grandparents and other relatives were not represented on the panel. However the message was clear – CF is an extremely costly condition and the wider impact of the disease cannot and should not be ignored.
Day one of the Lay Program at the 11th Australasian Cystic Fibrosis Conference in Sydney ended with the airing an old TV “Life. Be in it.” advertisement, with the iconic cartoon mascot of this campaign, Norm, taking a walk. It was a great message in many ways.
Respiratory Therapist, Michael Doumit from the Sydney Children’s Hospital showed this video to emphasize the importance of staying active. His key message was not simply on the value of participating in organised sport but on the importance of being more mobile in general. Do anything that gets you moving, makes your breathing a bit quicker and your heart rate a bit faster!
The sad reality is that the Australian population in general falls short of recommended guidelines for physical activity. It is also widely accepted that children with cystic fibrosis (CF) are less active than their peers.
Unfortunately reduced activity is more of a concern for the CF population, in many ways. Professor Eleanor Main from the Institute of Child Health in London, who also presented during this session stressed that exercise is important to build lung function, facilitate airway clearance, improve bone density and muscle mass and increase aerobic capacity. More importantly, however, it has been shown to build confidence, self-esteem and improve quality of life overall.
So how do we tackle this? Michael Doumit showed that there is a relationship between outdoor time and physical activity. Particularly in young children, the more time spent outside, the more active they are. Amount of screen time per day also has a major impact on activity levels.
Key tips for parents to get their kids to be more active
Furthermore as other presentations throughout the day demonstrated there is much happening in the world of CF care and management. The theme of this year’s conference is in fact Life in the Fast Lane (follow the social media hashtag #lifeinthefastlane). So grab the opportunities as they arrive. We all want the CF community to make the most of LIFE and BE IN IT!