New trial helping CF patients breathe easy
July 13 2017, 2:58 pm

CysticFibrosis(CF)isthe most common life-shortening disease affecting young Australians today. Diagnosed shortly after birth and currently without a cure, CF requires a rigorous, lifelong routine of daily medications, supplements and physiotherapy, as well as regular antibiotic treatment. Frequent visits to the hospital are also needed, which can often bring additional complications, not to mention long journeys, with 48 per cent of CF patients at RCH located in regional Victoria.

Luckily, thanks to a new program being trialled by RCH Respiratory Medicine, this burden could be dramatically reduced with the introduction of RCH Telehealth. Led by Respiratory Scientist Karla Logie, the program equips families with their own spirometer (a machine which measures lung function) and has them log onto a video call with Karla, which allows the patients to attend appointments without having to visit the hospital.

“Telehealth allows me to simulate the in-hospital check-ups in a comfortable environment for the patient, at a time that is convenient to them” says Karla. “Patients can easily fit the appointments into their lifestyles and often saves both them and their families days off school, work, as well as the long commute.”

Through the support of the Estate of Donald Ratcliffe and Phyllis McLeod the pilot program was equipped with 10 spirometers which were dispersed to eligible families across regional Victoria. Karla then works with families to ensure they are comfortable with the technology and they work together to capture the results.

“Despite some initial hesitation the families may have with the technology, we’ve found the system works extremely well, with some kids mastering the programs in no time at all!” says Karla.

The pilot program not only allows the participants to minimise infection and improve recovery time by reducing hospital visits, it also allows parents to easily share concerns about their child’s health.

“I can't speak highly enough about the Telehealth Spirometry and the difference it has made to us,” said Sue, a parent of one of the participants. “It is great because it has meant less trips to Melbourne, which is a three and a half hour drive each way. It also allows me to make an appointment with the team if I am concerned about Sarah's lung function. It is easy to use and a great way for us and her specialists to keep up to date with her condition and plan treatment accordingly.”

The success of the pilot is the first step in offering the complete schedule of specialists via Telehealth, which includes connecting doctors, physio, dietician and social workers via computer to offer at home care. Karla will share the results in a journal article, as well as at the upcoming Australasian Cystic Fibrosis conference in August.

“We’re so grateful for the support of the Estate of Donald Ratcliffe and Phyllis McLeod, and the RCH Foundation for making this possible, and we look forward to sharing our learnings and progressing to the next stage” Karla said.

Cystic Fibrosis (CF) is the most common life-shortening disease affecting young Australians today. Diagnosed shortly after birth and currently without a cure, CF requires a rigorous, lifelong routine of daily medications, supplements and physiotherapy, as well as regular antibiotic treatment. Frequent visits to the hospital are also needed, which can often bring additional complications, not to mention long journeys, with 48 per cent of CF patients at RCH located in regional Victoria.

 

Luckily, thanks to a new program being trialled by RCH Respiratory Medicine, this burden could be dramatically reduced with the introduction of Telehealth Spirometry Testing. Led by Respiratory Scientist Karla Logie, the program equips families with their own spirometer (a machine which measures lung function) and has them log onto a video call with Karla, which allows the patients to attend appointments without having to visit the hospital.