Transition of pediatric patients with bronchiectasis to adult medical care in the Northern Territory: A retrospective chart audit.

Background: Bronchiectasis is increasingly being recognized to exist in all settings with a high burden of disease seen in First Nations populations. With increasing numbers of pediatric patients with chronic illnesses surviving into adulthood, there is more awareness on examining the transition from pediatric to adult medical care services. We undertook a retrospective medical chart audit to describe what processes, timeframes, and supports were in place for the transition of young people (≥14 years) with bronchiectasis from pediatric to adult services in the Northern Territory (NT), Australia. Methods: Participants were identified from a larger prospective study of children investigated for bronchiectasis at the Royal Darwin Hospital, NT, from 2007 to 2022. Young people were included if they were aged ≥14 years on October 1, 2022, with a radiological diagnosis of bronchiectasis on high-resolution computed tomography scan. Electronic and paper-based hospital medical records and electronic records from NT government health clinics and, where possible, general practitioner and other medical service attendance were reviewed. We recorded any written evidence of transition planning and hospital engagement from age ≥14 to 20 years. Results: One hundred and two participants were included, 53% were males, and most were First Nations people (95%) and lived in a remote location (90.2%). Nine (8.8%) participants had some form of documented evidence of transition planning or discharge from pediatric services. Twenty-six participants had turned 18 years, yet there was no evidence in the medical records of any young person attending an adult respiratory clinic at the Royal Darwin Hospital or being seen by the adult outreach respiratory clinic. Conclusion: This study demonstrates an important gap in the documentation of delivery of care, and the need to develop an evidence-based transition framework for the transition of young people with bronchiectasis from pediatric to adult medical care services in the NT.

Utility of a personalised Bronchiectasis Action Management Plan (BAMP) for children with bronchiectasis: protocol for a multicentre, double-blind parallel, superiority randomised controlled trial.

INTRODUCTION: Bronchiectasis is no longer considered rare or irreversible in children, yet it remains relatively under-researched and neglected in respiratory health globally. Bronchiectasis (including chronic suppurative lung disease) causes substantial morbidity for patients and significant impact on caregivers, especially during acute respiratory exacerbations. In other chronic respiratory diseases (eg, asthma), empowering consumers with an individualised plan for management of acute exacerbations improves clinical outcomes. However, in the absence of any such data specific to bronchiectasis, action management plans are rarely currently used in children or adults with bronchiectasis. We hypothesise that providing an individualised bronchiectasis action management plan (BAMP) to children with bronchiectasis reduces non-scheduled doctor consultations, compared with not having a BAMP. METHODS AND ANALYSIS: This multicentre, parallel, double-blind, randomised trial involving three urban Australian hospitals commenced in June 2018 and will include 198 children, aged <19 years with bronchiectasis who had 2 or more exacerbations in the previous 18 months. Children will be randomised to having an individualised BAMP or standard care (a decoy clinic letter). Primary caregivers will then be followed up monthly for 12 months. The primary outcome is the rate of acute non-scheduled doctor visits for respiratory exacerbations by 12 months. The main secondary outcomes are cough-specific quality of life scores at 6 and 12 months, overall exacerbation rate over 12 months, and proportion of children who received timely influenza vaccination by 30 May annually. ETHICS AND DISSEMINATION: The Human Research Ethics Committees of the Northern Territory Department of Health and Menzies School of Heath Research and Queensland Children's Hospital approved the study. The results of the trial will be submitted for publication and the BAMP made available free online. TRIAL REGISTRATION NUMBER: Australia and New Zealand Clinical Trials Register ACTRN12618000604202.

Perspective: Using Bronchiectasis Action Management Plans for Children With Bronchiectasis-Can It Improve Clinical Care?

While once thought to be rare, bronchiectasis has been increasing globally over the last 15 years. Bronchiectasis is a major contributor to chronic lung morbidity and mortality but remains a neglected disease in respiratory health globally. Currently, few high-level evidence-based management strategies are available for children with bronchiectasis. Strategies to improve clinical outcomes associated with exacerbations are important. In other respiratory conditions such as asthma and chronic obstructive pulmonary disease, use of personalized written management plans have been shown to improve clinical outcomes. Personalized management plans have also been recommended as part of treatment plans in adults with bronchiectasis. We thus undertook a review of the current literature to determine available evidence, and to establish whether a personalized written bronchiectasis action management plan (BAMP) improves clinical outcomes in children with bronchiectasis. Our search identified 43 articles; 16 duplicates were removed and a further 23 were excluded on titles and abstracts alone. Four full-text articles were reviewed but excluded. In the absence of any published studies, it remains unknown whether the use of BAMP is beneficial for improving clinical outcomes for children with bronchiectasis. These results have highlighted this clinical gap and identified the need for high-quality research to inform practice. Until high-quality evidence is available, clinicians are advised to adhere to current national and/or international guidelines.

Bronchoscopy contributes to the clinical management of indigenous children newly diagnosed with bronchiectasis.

BACKGROUND: Some pediatric centers perform flexible bronchoscopy (FB) routinely when bronchiectasis is suspected. However, there are no published data evaluating this practice. OBJECTIVE: To evaluate the contribution of FB and bronchoalveolar lavage (BAL) to the initial management of children newly diagnosed with non-cystic fibrosis (CF) bronchiectasis. METHOD: We examined FB and BAL data collected prospectively in 56 children aged 0.8-9.8 years during initial investigations for bronchiectasis. Investigations contributed to management if any of the following were identified: (1) airway obstruction requiring additional intervention, (2) lower airway eosinophilia (BAL eosinophils >2.5%), or (3) BAL fluid culture >10(4) colony-forming units/ml of a respiratory bacterial pathogen requiring change from usual empiric antibiotics. RESULTS: Of the 56 children undergoing FB, there were 25 occasions in 23 children where these procedures altered empiric treatment. Lower airway eosinophilia was identified in 19 (34%) children, BAL microbiology results led to antibiotic changes in 5 (9%) and an unsuspected foreign body was found in another (2%). Strongyloides serology was performed in 38 children, including 12 of the 19 with airway eosinophilia, and was positive in 5 of these 12 children (42%). CONCLUSION: Contrary to some expert recommendations that FB should only be performed when bronchiectasis is localized, our data suggest that FB with BAL should at least be included in the initial investigations of Indigenous children with non-CF bronchiectasis.

Australian Aboriginal Birth Cohort study: follow-up processes at 20 years.

BACKGROUND: In 1987, a prospective study of an Australian Aboriginal Birth Cohort was established focusing on the relationships of fetal and childhood growth with the risk of chronic adult disease. However as the study is being conducted in a highly marginalized population it is also an important resource for cross-sectional descriptive and analytical studies. The aim of this paper is to describe the processes of the third follow up which was conducted 20 years after recruitment at birth. METHODS: Progressive steps in a multiphase protocol were used for tracing, with modifications for the expected rural or urban location of the participants. RESULTS: Of the original 686 cohort participants recruited 68 were untraced and 27 were known to have died. Of the 591 available for examination 122 were not examined; 11 of these were refusals and the remainder were not seen for logistical reasons relating to inclement weather, mobility of participants and single participants living in very remote locations. CONCLUSION: The high retention rate of this follow-up 20 years after birth recruitment is a testament to the development of successful multiphase protocols aimed at overcoming the challenges of tracing a cohort over a widespread remote area and also to the perseverance of the study personnel. We also interpret the high retention rate as a reflection of the good will of the wider Aboriginal community towards this study and that researchers interactions with the community were positive. The continued follow-up of this life course study now seems feasible and there are plans to trace and reexamine the cohort at age 25 years.