Priority setting for children and young people with chronic conditions and disabilities.

BACKGROUND: The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them. METHODS: We conducted a three-stage study based on the James Lind Alliance priority-setting partnership methods. It comprised two online surveys (n = 200; n = 201) and a consensus workshop (n = 21) with these three stakeholder groups in Australia. RESULTS: In the first stage, 456 responses were submitted, which were coded and collapsed into 40 overarching themes. In the second stage, 20 themes were shortlisted, which were further refined in stage 3, before the top 10 priorities being selected. Of these, the top three priorities were improving awareness and inclusion in all aspects of their life (school, work and social relationships), improving access to treatments and support and improving the process of diagnosis. CONCLUSIONS: The top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the CCD experience when conducting research in this area. PATIENT OR PUBLIC CONTRIBUTION: This study was guided by three Advisory Groups, comprising (1) young people living with CCD; (2) parents and caregivers of a child or young person with CCD and (3) professionals working with children and young people with CCD. These groups met several times across the course of the project and provided input into study aims, materials, methods and data interpretation and reporting. Additionally, the lead author and seven members of the author group have lived and experienced CCD.

Consumer research priorities for pediatric anesthesia and perioperative medicine.

BACKGROUND: Consumer-driven research is increasingly being prioritized. AIM: Our aim was to partner with consumers to identify the top 10 research priorities for pediatric anesthesia and perioperative medicine. The ACORN (Anesthesia Consumer Research Network) was formed to collaborate with children and families across Australia. METHODS: A prospective online survey was developed to generate research ideas from consumers. The survey was developed in Qualtrics, a survey research platform. Consumers were invited to participate through poster advertising, social media posts, via consumer networks at participating hospitals and in addition 35 national consumer/patient representative organizations were approached. We also conducted a similar idea generating survey for clinicians through email invitation and via Twitter. A second round of surveys was conducted to prioritize the long list of research questions and a shortlist of priorities developed. A single consensus meeting was held, and a final consensus list of top 10 priorities emerged. RESULTS: A total of 281 research ideas were submitted between 356 consumers in the idea generating survey and from four consumer/patient representative groups. Seventy-five clinicians responded to the clinician idea generation survey. This was consolidated into 20 research ideas/themes for the second survey for each group. 566 responses were received to the consumer prioritization top 10 survey and 525 responses to the clinician survey. The consensus meeting produced the final 10 consumer research priorities. CONCLUSION: This study has given Australian consumers the opportunity to shape the anesthesia and perioperative medicine research agenda for pediatric patients both nationally and internationally.

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement.

The Fontan circulation describes the circulatory state resulting from an operation in congenital heart disease where systemic venous return is directed to the lungs without an intervening active pumping chamber. As survival increases, so too does recognition of the potential health challenges. This document aims to allow clinicians, people with a Fontan circulation, and their families to benefit from consensus agreement about management of the person with a Fontan circulation. The document was crafted with input from a multidisciplinary group of health care providers as well as individuals with a Fontan circulation and families. It is hoped that the shared common vision of long-term wellbeing will continue to drive improvements in care and quality of life in this patient population and eventually translate into improved survival. KEYPOINTS.