Your guide to bronchiectasis resources
Many parents have not heard of bronchiectasis until their child has been diagnosed. It is often at this point that parents seek out further information, and our respiratory research group has developed several resources to support families.
Bronchiectasis Action Management Plan
In children with asthma, personalised asthma action management plans have been shown to improve quality of life, reduce doctor visits and decrease the number of asthma flare-ups. Action management plans are now used widely, with childcare centers and schools holding personalised plans to help treat children when their asthma flares up. For children with bronchiectasis, there have been no similar plans available.
With the Menzies Paediatric Respiratory Team, our group recently developed a Bronchiectasis Action Management Plan (BAMP) and conducted a study to understand if using a personalised BAMP is beneficial for children with bronchiectasis.
The BAMP details the child’s type of bronchiectasis and how many lobes are involved. It includes a daily to-do list for the child, specifying medications and airway clearance techniques through physiotherapy, and when they should obtain their annual influenza vaccine. Children with bronchiectasis often become unwell, experiencing flare-ups of coughing illness, and the BAMP provides details of what to do if there is a flare-up and when they should see a doctor.
The BAMP has been well received by parents and doctors are now using it to empower parents and patients with bronchiectasis to self-manage their illness.
Children’s Bronchiectasis, Education, Advocacy and Research Network
The Children’s Bronchiectasis, Education, Advocacy and Research Network (Child-BEAR-Net) is an international collaboration co-chaired by Prof. Anne Chang that aims to improve the care and outcomes of children with bronchiectasis. It connects children with bronchiectasis and their parents with clinicians and researchers, acting as a knowledge sharing platform to foster learning from parents and patients and helping to improve outcomes for all.
Child-BEAR-Net has compiled a list of answers to common bronchiectasis questions to support families. The FAQs include an explanation of what bronchiectasis is, how it is diagnosed, what causes it, what treatments are available and what a flare-up is. The website also features a video to help explain and demonstrate different physiotherapy techniques that are important in managing bronchiectasis, the latest bronchiectasis research news and a range of useful resources.
Bronchiectasis registry
Data on the incidence and outcomes of bronchiectasis in Australia is limited. Without this information, it is hard to identify effective new treatments and to determine the best care for children and adults with bronchiectasis. To help address this, the Lung Foundation Australia supports the Australian Bronchiectasis Registry, which collects yearly data on children and adults with bronchiectasis.
We are leading the Australian paediatric arm, and this has now been expanded through the Child-BEAR-Net registry to become an international paediatric registry that aims to understand causes, treatments and outcomes for children and adolescents with bronchiectasis. Although the international registry has only just launched, we plan to merge the registries to better understand bronchiectasis and to determine the best care for children, adolescents and their families.
