Connect AREST CF

From the Management Teams Desk

News from the psychosocial subgroup

After months of frustration due to database related obstacles we are finally analyzing data from the cross sectional study into the psychosocial determinants of health in preschool children and infants. The aim of this primary study is to detect associations between various psychosocial measures within the environment of the growing child with CF and clinical outcomes. These results will inform the design of a larger longitudinal study of key psychosocial factors to establish causal relationships and eventually intervention studies. Watch this space. Cindy Branch Smith is making excellent progress with her qualitative study of the experiences of parents of children undergoing intensive early pulmonary surveillance. She returned from studying families in Melbourne before Xmas and is immersed in detailed thematic analysis to determine the dominant experiences. These data will then inform the development of family and child centered clinical pathways to support families and improve their experiences. Themes emerging to date include anxiety, fear and uncertainty, somewhat balanced by the perception that knowing about their child’s covert disease progression is better than not knowing, as it may lead to intervention. Presentation of her work nationally and internationally has stimulated significant interest and discussion.

Linda Shields has initiated a study into family centred care practices among health institutes in QLD and Australia wide. This will provide the preliminary data to further explore the role of FCC in the delivery of CF care in children. The information needs study, examining information priorities and information seeking practices of parents beyond newborn screening, is recruiting for the pilot study in Perth. These data will undergo statistical analysis to confirm the validity of a questionnaire instrument that will be distributed nationally (NEAF drafted). The aim of this study is to inform and direct the education process for families of newly diagnosed infants and will lead to examination of health literacy and competency in parents of young children with CF.

We are conducting an agenda setting systematic literature review of the psychosocial determinants of health in CF for publication, with Assoc Prof Reinie Cordier, an academic and clinical psychologist at ECU. We have one published paper and three draft manuscripts in progress. After all the effort involved in establishing this new subgroup and its multidisciplinary team, and the trials of staff relocating interstate, it is good to finally see data analysed and results heading our way.

cheers Tonia

TSANZ, who will be speaking.........

If you are attending TSANZ in Adelaide (4th - 9th April), please look out for the following AREST CF speakers;

Kat Ramsay: Lung clearance index is sensitive to detect structural lung disease on computed tomography in preschool children with cystic fibrosis.’

She is presenting data on how outcomes from the multiple breath washout test correlate with the presence and extent of bronchiectasis on CT in infants and children with CF.

Tim Rosenow: PRAGMA: A New Method of Quantifying Structural Lung Disease in Young Children with Cystic Fibrosis.

Luke Garratt: In the Young Investigator session, “Alpha 1-antitrypsin mitigates neutrophil elastase inhibition of airway epithelial wound repair in children with cystic fibrosis”

These are all the editor knew of at the time of publication...............

The bouquet's go to.......

Graham Hall, who has received a USCF grant, our congratulations to you Graham. Well done to the entire team who were involved in the grant writing process.

Catherine Gangell manuscript has been accepted to the Journal of Cystic Fibrosis, titled Feasibility of parental collected nasal swabs for virus detection in young child with CF. Huge applause from the entire team, well done.

Have something you want to brag about? Please let Annemarie know at

Excuse me while we change!!

The Telethon Institute for Child Health Research is changing in the next month. While there is a BIG launch and we can't tell you too much right now, we can tell you that there will be a new logo and a new name. Watch out for more information in next months edition.

CI meeting has been changed to 1st April 2014, more details to come soon.

Perth Local Meeting

Tuesday, March 18th, 12pm

100 Roberts Rd

Subiaco, WA

Please send all agenda items to