Inherited retinal diseases (IRDs) are a broad range of diseases associated with abnormalities/degeneration of retinal cells. We aimed to identify the top 10 Australian research priorities for IRDs to ultimately facilitate more meaningful and potentially cost-effective research.
We conducted a James Lind Alliance priority setting partnership that involved two Australian-wide surveys and online workshops.
Australia-wide.
Individuals aged 16 years or older were eligible to participate if they had an IRD, were caregivers of an individual with an IRD or were health professionals providing care to this community.
In Survey 1, we gathered participants’ unanswered questions about IRDs. We grouped these into summary questions and undertook a literature review to verify if they were truly unanswered (ie, evidence uncertainties). In Survey 2, participants voted for the uncertainties that they considered a priority. Top-ranked uncertainties progressed for discussion and final prioritisation in two workshops.
In Survey 1, we collected 223 questions from 69 participants. We grouped these into 42 summary questions and confirmed 41 as evidence uncertainties. In Survey 2, 151 participants voted, with the 16 uncertainties progressing to final prioritisation. The top 10 priorities, set by the 24 workshop participants, represented (1) treatment/cure; (2) symptoms and disease progression; (3) psychosocial well-being and (4) health service delivery. The #1 priority was for treatment to prevent, slow down or stop vision loss, followed by the #2 priority to address the psychological impact of having an IRD.
The top 10 research priorities highlight the need for IRD research that takes a whole-person, systems approach. Collaborations to progress priorities will accelerate the translation of research into real-world benefits.
Public involvement in mental health research enhances research quality. The use of citizen science methods in mental health research has been described as a conclusion of a movement towards increased public involvement; however, this field is in its early stages of development. Our objective was to create a theory of change (ToC) for how citizen science can be used to enhance mental health research quality.
Iterative consultation with the stakeholders of an existing citizen mental health science study, that is, change for citizen science to achieve co-production at scale (C-STACS: https://www.researchintorecovery.com/research/c-stacs/)
We co-developed a ToC through an iterative consultation with C-STACS stakeholders who were (a) representatives of mental health community organisations (n=10), individuals with public involvement experience (n=2) and researchers (n=5). In keeping with established ToC practice, entities were identified, including long-term impacts, outcomes needed to create an impact, stakeholder assumptions and indicators for tracking progress.
A desired primary long-term impact of greater co-production of research was identified between researchers and members of the public, which would create a secondary impact of enhancing public capacity to engage in citizen mental health science. We proposed long-term outcomes needed to enable this impact: (1) greater co-production of research objectives and pathways between researcher and the public, (2) greater embedment of citizen mental health science into funder processes (eg, the creation of specific funding calls for citizen mental health science proposals, (3) greater clarity on the boundaries between citizen science and other participatory approaches (eg, so that there is not loss of impact due to conceptual confusion between these, (4) increased knowledge around effective frameworks to enable mass public participation and (5) greater availability of technology platforms, enabling safe and accessible engagement with citizen mental health science projects.
The proposed ToC is grounded in the C-STACS project, but intended to be broadly applicable. It allows the continued formation of a community of practice around citizen mental health science and should be reviewed, as greater knowledge is developed on how citizen mental health science creates change.
Thanks to the introduction of recent national guidelines for treating herpes simplex virus (HSV) encephalitis, health outcomes have improved. This paper evaluates the health system costs and the health-related quality of life implications of these guidelines.
A sub-analysis of data from a prospective, multi-centre, observational cohort ENCEPH-UK study conducted across 29 hospitals in the UK from 2012 to 2015.
Data for patients aged ≥16 years with a confirmed HSV encephalitis diagnosis admitted for treatment with aciclovir were collected at discharge, 3 and 12 months.
Patient health outcomes were measured by the Glasgow outcome score (GOS), modified ranking score (mRS) and the EuroQoL; healthcare costs were estimated per patient at discharge from hospital and at 12 months follow-up. In addition, Quality Adjusted Life Years (QALYs) were calculated from the EQ-5D utility scores. Cost–utility analysis was performed using the NHS and Social Care perspective.
A total of 49 patients were included; 35 were treated within 48 hours, ‘early’ (median (IQR) 8.25 [3.7–20.5]) and 14 were treated after 48 hours ‘delayed’ (median (IQR) 93.9 [66.7–100.1]). At discharge, 30 (86%) in the early treatment group had a good mRS outcome score (0–3) compared with 4 (29%) in the delayed group. According to GOS, 10 (29%) had a good recovery in the early treatment group, but only 1 (7%) in the delayed group. EQ-5D-3L utility value at discharge was significantly higher for early treatment (0.609 vs 0.221, p
This study suggests that early treatment may be associated with better health outcomes and reduced patient healthcare costs, with a potential for savings to the NHS with faster treatment.
This study aimed to co-design a model of brilliant care for older people that provides clear, actionable principles to guide how brilliant care for older people can be realised.
As the demand for and international importance of care for older people grows, so too does the negative discourse about care for older people. This ongoing focus on deficiencies can have implications for patients, carers, clinicians, health services, and policymakers, overshadowing opportunities for innovation and positive change.
Experience-based co-design informed this study, grounded in the lived experiences of key stakeholders.
Three scaffolded co-design workshops were facilitated, involving lived experience experts, managers, professionals, clinicians, and an academic (n= 13). The data collected during these workshops were analysed using a qualitative descriptive method and documented according to COREQ guidelines to optimise rigour and transparency.
The participants co-designed a model of brilliant care for older people, comprising principles to promote connection and innovation. To promote connection, the model includes protecting staff member time to deliver meaningful care and demonstrating that everyone matters. To promote innovation, it encourages role flexibility, curiosity, small improvements, and the recognition of brilliant practices.
This article presents a co-designed model of brilliant care for older people, incorporating principles of connection and innovation that can be enacted through simple, resource-efficient practices.
For those who manage and deliver care for older people, the model encompasses simple, accessible, and cost-effective principles to: positively deviate from norms within the sector, offering care to older people; and to deliver brilliant care for older people. Furthermore, given that the model was co-designed with lived experience experts, managers, professionals, and clinicians, its principles are imbued with their experiential insights, which served to bring particular priorities to the fore.
The co-designers, who included lived experience experts, were invited to participate in workshops to co-design a model of brilliant care for older people, during which they discussed and critiqued the findings constructed from the data and co-designed the model.
Approximately 1 in 13 Australian children have a neurodevelopmental disability. This project aims to assess the effectiveness and implementation of an online parenting support programme, Parenting Acceptance and Commitment Therapy (PACT) Online, for parents of children with neurodevelopmental disabilities for improving the parent–child relationship and parent and child outcomes.
This hybrid type 1 randomised controlled trial will focus on evaluating intervention effectiveness and understanding the context for implementation. The primary outcome is observed emotional availability within parent–child interactions assessed at postintervention (12 weeks postbaseline) with additional measurement at follow-up (6 months postbaseline). Secondary outcomes include (1) parent-reported emotional availability, (2) parental mindfulness, (3) parent mental health, (4) psychological flexibility, (5) adjustment to child’s disability, (6) health behaviour and (7) regulatory abilities as well as child outcomes of (1) mental health, (2) adaptive behaviour and (3) regulatory abilities. Evaluation of implementation will include an economic evaluation of costs and consequences, and an implementation analysis grounded in the consolidated framework for implementation research with a focus on contextual factors influencing implementation.
Ethical approval has been obtained from the University of Queensland Human Research Ethics Committee (023/HE000040). Dissemination of study outcomes will occur through the appropriate scientific channels. Long-term implementation will be grounded within the implementation analysis and occur in partnership with the partner organisations and consumer engagement panel. This will include releasing the PACT Online intervention as a massive open online course on the edX platform if support for intervention effectiveness and implementation is found.
ACTRN12623000612617; this trial has been registered with the Australian New Zealand Clinical Trials Registry.
by Shaleesa Ledlie, Alice Holton, Pamela Leece, Bisola Hamzat, Joanna Yang, Gillian Kolla, Nikki Bozinoff, Rob Boyd, Mike Franklyn, Ashley Smoke, Paul Newcombe, Tara Gomes
ObjectiveTo investigate trends and the circumstances surrounding fatal substance-related toxicities directly attributed to alcohol, stimulants, benzodiazepines or opioids and combinations of substances in Ontario, Canada.
MethodsWe conducted a population-based cross-sectional study of all accidental substance-related toxicity deaths in Ontario, Canada from January 1, 2018 to June 30, 2022. We reported monthly rates of substance-related toxicity deaths and investigated the combination of substances most commonly involved in deaths. Demographic characteristics, location of incident, and prior healthcare encounters for non-fatal toxicities and substance use disorders were examined.
ResultsOverall, 10,022 accidental substance-related toxicity deaths occurred, with the annual number of deaths nearly doubling between the first and last 12 months of the study period (N = 1,570–2,702). Opioids were directly involved in the majority of deaths (84.1%; N = 8,431), followed by stimulants (60.9%; N = 6,108), alcohol (13.4%; N = 1,346) and benzodiazepines (7.8%; N = 782). In total, 56.9% (N = 5,698) of deaths involved combinations of substances. Approximately one-fifth of individuals were treated in a hospital setting for a substance-related toxicity in the past year, with the majority being opioid-related (17.4%; N = 1,748). Finally, 60.9% (N = 6,098) of people had a substance use disorder diagnosis at time of death.
ConclusionsOur study shows not only the enormous loss of life from substance-related toxicities but also the growing importance of combinations of substances in these deaths. A large proportion of people had previously interacted within an hospital setting for prior substance-related toxicity events or related to a substance use disorder, representing important missed intervention points in providing appropriate care.
The benefits of physical activity (PA) are compelling for all ages and abilities. For children with cerebral palsy (CP), two distinct health behaviours, being physically active and reducing sedentary time, are critical to target as an early intervention to reduce long-term morbidity. One approach may be to increase PA participation by empowering parents who are key to making family lifestyle changes. This study will compare Active Start Active Future, a participation-focused intervention, to usual care in a mixed-methods randomised waitlist-controlled trial.
A total of 40 children with CP (3–7 years), classified in Gross Motor Function Classification System (GMFCS) levels II–V, will be stratified (GMFCS II vs III, IV vs V) and randomised to receive either (1) Active Start Active Future, an 8-week intervention for 1 hour per week in any setting or (2) usual care followed by delayed intervention. Active Start Active Future aims to increase PA and reduce sedentary behaviour of young children with CP by providing participatory opportunities to promote PA behaviour change. Outcomes will be measured at baseline (T1), immediately postintervention at 8 weeks (T2) and at 26 weeks postbaseline (T3). The primary outcomes are the Canadian Occupational Performance Measure for both child and parent participation goals and child physical performance goal. Secondary outcomes include daily time spent in moderate to vigorous PA and sedentary time, gross motor function, quality of life, barriers to participation for the children and parents’ PA and sedentary time. Intervention acceptability and experiences of PA participation will be explored using a qualitative descriptive approach.
The Children’s Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC/23/QCHQ/100850) and The University of Queensland Human Research Ethics Committee (2024/HE000054) have approved this study. The results of the study will be disseminated to families and community agencies as guided by our advisory group and as conference abstracts and presentations, peer-reviewed articles in scientific journals and institution newsletters and media releases.
ACTRN12624000042549, Universal Trial Number: U1111-1300-7421; Australian New Zealand Clinical Trials Registry.
by Tamara Taggart, Allison Mathews, Toni Junious, Joseph A. Lindsey, Andrea Augustine, Charles Debnam, Yavonne Boyd, Seraiya Wright, Joseph D. Tucker, Manya Magnus
HIV incidence among young people (Black and Latinx women and men who have sex with men ages 16–24 years), in the United States is high. Traditional top-down approaches for pre-exposure prophylaxis (PrEP) social marketing are not effectively reaching this population. Crowdsourcing is a promising approach to engaging young people in the development of innovative solutions to raise awareness and use of PrEP among those at highest risk of HIV. This study engaged young people in the design and evaluation of an online crowdsourcing contest to promote PrEP among Washington, DC youth. The contest used standard methods recommended by the World Health Organization and feedback from our community partners. Online recruitment using social media elicited online votes and survey responses. We analyzed cross-sectional surveys using descriptive statistics, and semi-structured interviews with contest participants using thematic coding to explore barriers and facilitators to contest engagement. Approximately 82% of entries were from young people in DC. A convenience sample of 181 people voted on their favorite crowdsourced PrEP messages and shared their awareness and attitudes about PrEP. The contest website received 2,500 unique visitors and 4,600 page views. Themes from semi-structured interviews (n = 16) included the need for more community engagement in developing PrEP messaging and positive attitudes towards crowdsourcing. Survey data (n = 887) showed that the crowdsourced messages were well-liked and resonated with the community. Most preferred to see PrEP messages in social media (23%), email (17%) and videos (14%). Approximately 70% of survey participants reported that after viewing the crowdsourced message they would talk to their sexual partner or medical provider (63%) about PrEP, use PrEP (58%), and learn more about PrEP (56%). Crowdsourced messages solicit substantial online viewership. More implementation research is needed to understand the public health impact of integrating social media, crowdsourcing, and community engagement to develop PrEP promotional messages.