Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers.

BACKGROUND: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. OBJECTIVE: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. METHODS: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). RESULTS: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. CONCLUSIONS: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.

Ayahuasca ceremony leaders' perspectives on special considerations for eating disorders.

Eating disorders (EDs) are difficult conditions to resolve, necessitating novel treatments. Ayahuasca, a psychedelic plant medicine originating in Indigenous Amazonian communities, is being investigated. Aspects of ceremonial ayahuasca use (purging, dietary restrictions) appear similar to ED behaviors, raising questions about ayahuasca's suitability as an intervention for individuals with EDs. This study explored the perspectives of ayahuasca ceremony leaders on these and other considerations for ceremonial ayahuasca drinking among individuals with EDs. A qualitative content analysis of interviews was undertaken with 15 ayahuasca ceremony leaders, the majority of whom were from the West/Global North. Screening for EDs, purging and dietary restrictions, potential risks and dangers, and complementarity with conventional ED treatment emerged as categories. The findings offer ideas, including careful screening and extra support, to promote safe and beneficial ceremony experiences for ceremony participants with EDs. More research is needed to clarify the impacts of ceremony-related purging and preparatory diets. To evolve conventional models of treatment, the ED field could consider Indigenous approaches to mental health whereby ayahuasca ceremony leaders and ED researchers and clinicians collaborate in a decolonizing, bidirectional bridging process between Western and Indigenous paradigms of healing.

AAV capsid bioengineering in primary human retina models.

Adeno-associated viral (AAV) vector-mediated retinal gene therapy is an active field of both pre-clinical as well as clinical research. As with other gene therapy clinical targets, novel bioengineered AAV variants developed by directed evolution or rational design to possess unique desirable properties, are entering retinal gene therapy translational programs. However, it is becoming increasingly evident that predictive preclinical models are required to develop and functionally validate these novel AAVs prior to clinical studies. To investigate if, and to what extent, primary retinal explant culture could be used for AAV capsid development, this study performed a large high-throughput screen of 51 existing AAV capsids in primary human retina explants and other models of the human retina. Furthermore, we applied transgene expression-based directed evolution to develop novel capsids for more efficient transduction of primary human retina cells and compared the top variants to the strongest existing benchmarks identified in the screening described above. A direct side-by-side comparison of the newly developed capsids in four different in vitro and ex vivo model systems of the human retina allowed us to identify novel AAV variants capable of high transgene expression in primary human retina cells.

The role of epigenetic changes in the pathology and treatment of inherited retinal diseases.

Elucidation of the cellular changes that occur in degenerating photoreceptors of people with inherited retinal diseases (IRDs) has been a focus for many research teams, leading to numerous theories on how these changes affect the cell death process. What is clearly emerging from these studies is that there are common denominators across multiple models of IRD, regardless of the underlying genetic mutation. These common markers could open avenues for broad neuroprotective therapeutics to prevent photoreceptor loss and preserve functional vision. In recent years, the role of epigenetic modifications contributing to the pathology of IRDs has been a particular point of interest, due to many studies noting changes in these epigenetic modifications, which coincide with photoreceptor cell death. This review will discuss the two broad categories of epigenetic changes, DNA methylation and histone modifications, that have received particular attention in IRD models. We will review the altered epigenetic regulatory events that are believed to contribute to cell death in IRDs and discuss the therapeutic potential of targeting these alterations.

The Clinical Trials Assistance Pilot: reducing the financial burden of cancer clinical trials for patients in regional New South Wales.

Objective This study investigated whether the provision of financial assistance to patients living in regional New South Wales influenced patients' decisions to participate in a cancer clinical trial (cancer treatment or supportive care) and resulted in improved psychosocial outcomes. Methods Administrative data were collected from participants, including demographics, travel distances and the value of financial support provided. Qualitative interviews were then conducted with a subset of consenting patients who received financial assistance for a clinical trial. Results Sixty-four patients with cancer received financial support for a clinical trial, 27 (42%) of whom were interviewed. Participants whose distance to a trial site was over 400 km received almost three times as much financial support (M = A$3194.20, s.d. = A$1597.60) as participants whose distance to a trial site was between 50 and 100 km (M = A$1116.29, s.d. = $A1311.23). Half of participants indicated that receiving financial assistance influenced their decision to participate in a clinical trial, and most indicated the support alleviated the financial burden of clinical trial participation. Conclusions The provision of financial assistance to patients living in regional areas may reduce inequities in cancer clinical trial participation and improve psychosocial outcomes.

"Getting to the Root": Ayahuasca Ceremony Leaders' Perspectives on Eating Disorders.

Given the mortality, chronicity, and treatment drop-out rates observed among individuals with eating disorders (EDs), innovative approaches are needed. Ayahuasca, a psychedelic plant medicine from the Amazon, is currently being investigated. This study expands on prior exploratory research by describing the perspectives of ayahuasca ceremony leaders regarding their conceptualizations of EDs and the potential therapeutic mechanisms of action of ayahuasca for individuals with EDs. Qualitative content analysis of interviews with 15 ayahuasca ceremony leaders produced two main categories, with relevant subcategories. The first category encompassed the leaders' theories of EDs from a shamanic perspective, including that EDs are symptomatic of an underlying concern, serve a function and affect health in multiple domains. The second category described leaders' perspectives on the potential mechanisms of action of ayahuasca for EDs, including that ayahuasca facilitates "energetic healing"; helps identify, process, and integrate the "root" of the ED; promotes holistic healing; and enhances and/or reorganizes relationships. From the perspectives of ceremony leaders and consistent with previous exploratory research, ceremonial ayahuasca use may offer a potentially useful, novel and complementary intervention for EDs.

Examining youth participation in ongoing community and citizen science programs in 3 different out-of-school settings.

We investigated youth participation in three Community and Citizen Science (CCS) programs led by natural history museums in out-of-school settings. Using second generation Activity Theory, we looked at repeated participation over time, collecting and then qualitatively analyzing ethnographic fieldnote observations on focal youth participation and components of the activity systems. We found each program provided multiple and unique access points for youth to participate in environmental science. Further, when facilitators emphasized the scientific goals of the programs clearly and repeatedly, youth participation in the scientific processes of the CCS programs deepened. Access to scientific tools, facilitation in using them, and repeatedly applying them in authentic research, enabled youth to participate in different aspects of CCS, from exploring to submitting biological data. Repeated participation in CCS activities provided the opportunities for youth to try the same type of participation multiple times (intensification), as well as provided the opportunity for youth to try different types of participation (diversification). Our findings suggest that repeated participation in authentic scientific research in CCS contexts fosters youth development of new roles and possible development of environmental science identities.

Increased H3K27 trimethylation contributes to cone survival in a mouse model of cone dystrophy.

Inherited retinal diseases (IRDs) are a heterogeneous group of blinding disorders, which result in dysfunction or death of the light-sensing cone and rod photoreceptors. Despite individual IRDs (Inherited retinal disease) being rare, collectively, they affect up to 1:2000 people worldwide, causing a significant socioeconomic burden, especially when cone-mediated central vision is affected. This study uses the Pde6ccpfl1 mouse model of achromatopsia, a cone-specific vision loss IRD (Inherited retinal disease), to investigate the potential gene-independent therapeutic benefits of a histone demethylase inhibitor GSK-J4 on cone cell survival. We investigated the effects of GSK-J4 treatment on cone cell survival in vivo and ex vivo and changes in cone-specific gene expression via single-cell RNA sequencing. A single intravitreal GSK-J4 injection led to transcriptional changes in pathways involved in mitochondrial dysfunction, endoplasmic reticulum stress, among other key epigenetic pathways, highlighting the complex interplay between methylation and acetylation in healthy and diseased cones. Furthermore, continuous administration of GSK-J4 in retinal explants increased cone survival. Our results suggest that IRD (Inherited retinal disease)-affected cones respond positively to epigenetic modulation of histones, indicating the potential of this approach in developing a broad class of novel therapies to slow cone degeneration.

eTRIO trial: study protocol of a randomised controlled trial of online education modules to facilitate effective family caregiver involvement in oncology.

OBJECTIVE: Informal family caregivers play a crucial role in cancer care. Effective caregiver involvement in cancer care can improve both patient and caregiver outcomes. Despite this, interventions improving the caregiver involvement are sparse. This protocol describes a randomised controlled trial evaluating the combined effectiveness of novel online caregiver communication education modules for: (1) oncology clinicians (eTRIO) and (2) patients with cancer and caregivers (eTRIO-pc). METHODS AND ANALYSIS: Thirty medical/radiation/surgical oncology or haematology doctors and nurses will be randomly allocated to either intervention (eTRIO) or control (an Australian State Government Health website on caregivers) education conditions. Following completion of education, each clinician will recruit nine patient-caregiver pairs, who will be allocated to the same condition as their recruiting clinician. Eligibility includes any new adult patient diagnosed with any type/stage cancer attending consultations with a caregiver. Approximately 270 patient-caregiver pairs will be recruited. The primary outcome is caregiver self-efficacy in triadic (clinician-patient-caregiver) communication. Patient and clinician self-efficacy in triadic communication are secondary outcomes. Additional secondary outcomes for clinicians include preferences for caregiver involvement, perceived module usability/acceptability, analysis of module use, satisfaction with the module, knowledge of strategies and feedback interviews. Secondary outcomes for caregivers and patients include preferences for caregiver involvement, satisfaction with clinician communication, distress, quality of life, healthcare expenditure, perceived module usability/acceptability and analysis of module use. A subset of patients and caregivers will complete feedback interviews. Secondary outcomes for caregivers include preparedness for caregiving, patient-caregiver communication and caring experience. Assessments will be conducted at baseline, and 1 week, 12 weeks and 26 weeks post-intervention. ETHICS AND DISSEMINATION: Ethical approval has been received by the Sydney Local Health District Human Research Ethics Committee (REGIS project ID number: 2019/PID09787), with site-specific approval from each recruitment site. Protocol V.7 (dated 1 September 2020) is currently approved and reported in this manuscript. Findings will be disseminated via presentations and peer-reviewed publications. Engagement with clinicians, media, government, consumers and peak cancer groups will facilitate widespread dissemination and long-term availability of the educational modules. TRIAL REGISTRATION NUMBER: ACTRN12619001507178.

Psychosocial impact of COVID-19 on cancer patients, survivors, and carers in Australia: a real-time assessment of cancer support services.

PURPOSE: This study aimed to explore the psychosocial impacts of the coronavirus disease (COVID-19) pandemic on cancer patients, survivors, and carers in Australia. METHODS: Using real-time insights from two Cancer Council NSW services-131120 Information and Support Line and Online Community (CCOC) forums-we assessed service demand trends, distress levels (using the distress thermometer), and content from 131120 calls and online posts between 01 December 2019 and 31 May 2020. Emergent themes were identified through an inductive conventional content analysis with 131120 call notes, followed by a deductive directed content analysis on CCOC posts. RESULTS: In total, 688 COVID-19-related 131120 calls (n = 496) and online posts (n = 192) were analysed. Service demand peaked in March 2020 and self-reported distress peaked in May 2020 at an average of 8/10 [Mean = 7.5; SD = 0.9]. Five themes emerged from the qualitative analysis: psychological distress and fear of virus susceptibility, practical issues, cancer service disruptions, information needs, and carer Issues. CONCLUSIONS: The psychosocial impacts of COVID-19 on people affected by cancer are multifaceted and likely to have long-lasting consequences. Our findings drove the development of six recommendations across three domains of support, information, and access. Cancer patients, survivors, and carers already face stressful challenges dealing with a cancer diagnosis or survivorship. The added complexity of restrictions and uncertainty associated with the pandemic may compound this. It is important that healthcare providers are equipped to provide patient-centred care during and after this crisis. Our recommendations provide points of consideration to ensure care is tailored and patient oriented.

Exploring the participation of young citizen scientists in scientific research: The case of iNaturalist.

Online citizen science projects have broadened options for accessing science and enabled different forms of participation in scientific research for adult and young volunteers. Yet, little is known regarding participation patterns among youth participants. Quantitative approaches were used to investigate the contribution of 183 young volunteers to citizen science on the iNaturalist platform and the participation behaviour that relates to their contribution. The participants accessed and used iNaturalist as part of one-day field-based events (bioblitzes) facilitated by museums. Compared to the observation behaviour of all iNaturalist users, as documented on the platform, the young volunteers observe fewer plants and birds, and more molluscs, arachnids and insects. The average daily contributions of young volunteers were found to be positively associated with a large proportion of active days on iNaturalist and a systematic contribution behaviour, yet negatively related to a long duration on the platform. This study enhances our understanding of young volunteers' contributions to citizen science and provides insights for research on participation in online citizen science. Our findings have implications on how museums design the field-based events to encourage follow-up systematic participation and maintain active contribution.

Step by step towards citizen science - deconstructing youth participation in BioBlitzes.

BioBlitzes, typically one-day citizen science (CS) events, provide opportunities for the public to participate in data collection for research and conservation, potentially promoting deeper engagement with science. We observed 81 youth at 15 BioBlitzes in the U.S. and U.K., identifying five steps participants use to create a biological record (Exploring, Observing, Identifying, Documenting and Recording). We found 67 youth engaged in at least one of the steps, but seldom in all, with rare participation in Recording which is crucial for contributing data to CS. These findings suggest BioBlitzes should reduce barriers to Recording for youth to increase engagement with science.

How Do Young Community and Citizen Science Volunteers Support Scientific Research on Biodiversity? The Case of iNaturalist.

Online community and citizen science (CCS) projects have broadened access to scientific research and enabled different forms of participation in biodiversity research; however, little is known about whether and how such opportunities are taken up by young people (aged 5-19). Furthermore, when they do participate, there is little research on whether their online activity makes a tangible contribution to scientific research. We addressed these knowledge gaps using quantitative analytical approaches and visualisations to investigate 249 youths' contributions to CCS on the iNaturalist platform, and the potential for the scientific use of their contributions. We found that nearly all the young volunteers' observations were 'verifiable' (included a photo, location, and date/time) and therefore potentially useful to biodiversity research. Furthermore, more than half were designated as 'Research Grade', with a community agreed-upon identification, making them more valuable and accessible to biodiversity science researchers. Our findings show that young volunteers with lasting participation on the platform and those aged 16-19 years are more likely to have a higher proportion of Research Grade observations than younger, or more ephemeral participants. This study enhances our understanding of young volunteers' contributions to biodiversity research, as well as the important role professional scientists and data users can play in helping verify youths' contributions to make them more accessible for biodiversity research.

Validating Fluorescent Chrnb4.EGFP Mouse Models for the Study of Cone Photoreceptor Degeneration.

Purpose: To validate the application of a known transgenic mouse line with green fluorescent cones (Chrnb4.EGFP) to study cone photoreceptor biology and function in health and disease. Methods: Chrnb4.EGFP retinas containing GFP+ cones were compared with retinas without the GFP transgene via immunohistochemistry, quantitative real-time polymerase chain reaction, electroretinograms, and flow cytometry. The Chrnb4.EGFP line was backcrossed to the mouse models of cone degeneration, Pde6ccpfl1 and Gnat2cpfl3 , generating the new lines Gnat2.GFP and Pde6c.GFP, which were also studied as described. Results: GFP expression spanned the length of the cone cell in the Chrnb4.EGFP line, as well as in the novel Gnat2.GFP and Pde6c.GFP lines. The effect of GFP expression showed no significant changes to outer nuclear layer cell death, cone-specific gene expression, and immune response activation. A temporal decrease in GFP expression over time was observed, but GFP fluorescence was still detected through flow cytometry as late as 6 months. Furthermore, a functional analysis of photopic and scotopic electroretinogram responses of the Chrnb4 mouse showed no significant difference between GFP- and GFP+ mice, whereas electroretinogram recordings for the Pde6c.GFP and Gnat2.GFP lines matched previous reports from the original lines. Conclusions: This study demonstrates that the Chrnb4.EGFP mouse can be a powerful tool to overcome the limitations of studying cone biology, including the use of this line to study different types of cone degeneration. Translational Relevance: This work validates research tools that could potentially offer more reliable preclinical data in the development of treatments for cone-mediated vision loss conditions, shortening the gap to clinical translation.

Challenges and perceived unmet needs of Chinese migrants affected by cancer: Focus group findings.

OBJECTIVES: Chinese migrant cancer survivors and carers face multiple barriers to accessing quality cancer information and support. This study aimed to explore the challenges and unmet needs experienced by the Australian Chinese community affected by cancer, and understand the contexts that hindered optimal care for this community. METHODS: Adult cancer survivors and carers, whose native language is Mandarin or Cantonese, were recruited through community cancer support organizations. Bilingual researchers conducted focus groups with participants in either Mandarin or Cantonese. Focus groups were audio-recorded, transcribed, translated into English and thematically analyzed using qualitative methods. FINDINGS: 62 Chinese-speaking participants (34 cancer survivors and 28 carers) participated in one of the eight focus groups conducted. The three main themes were (1) unmet information and support needs (trust, wellness, and rights); (2) barriers compounding unmet needs (language, health literacy, culture); and (3) participants' recommendations regarding cancer information and support provision. Seven subthemes of unmet needs were also identified: Trust (e.g., communication barriers, health system barriers, comparison regarding the care received), wellness (e.g., cultural differences produce conflict on views about wellness, need for psychological, community, and spiritual support), and rights (e.g., low awareness of financial and legal assistance, other factors increasing or reducing vulnerability). CONCLUSIONS: This study highlights the needs and provides new insights into the impact of language, culture and health literacy barriers on the unmet information and support needs of the Chinese community affected by cancer. The key findings will inform the development of culturally targeted information and support resources for this community.

Information needs of the Chinese community affected by cancer: A systematic review.

OBJECTIVE: The information needs of patients and carers from culturally and linguistically diverse backgrounds, including from the Chinese community, are not well understood, and there has been no previous synthesis of the literature. We conducted a systematic review of the information needs of the Chinese community affected by cancer. METHODS: Database, reference list, and author searches were conducted to identify studies reporting information needs of the Chinese community affected by cancer. Data synthesis was undertaken to define categories of information needs. RESULTS: Initial searches yielded 2558 articles. Out of the 40 full-text articles reviewed, 26 met all the eligibility criteria. Cancer-specific, treatment, and prognosis information were the most frequently reported information needs across the cancer care continuum. Similarly, this information was the most commonly reported information needs across different health systems, migration statuses, and Chinese cultural values. Though less frequent, information needs related to interpersonal/social, financial/legal, and body image/sexuality were also raised. Thirteen studies quantified the prevalence of unmet needs, and the most frequently reported unmet needs were related to health system and information, followed by psychological, patient care and support, physical daily living, and sexuality needs. Language and cultural factors were identified in all studies involving Chinese migrants living in English-speaking countries. CONCLUSIONS: Failing to meet the information needs of the Chinese community members affected by cancer increases the risk for poor cancer outcomes. Potential interventions such as translated resources, bilingual advocates, an online information portal, and communication aids can be helpful in addressing the unmet needs for this community.

The impact of cancer diagnosis and treatment on employment, income, treatment decisions and financial assistance and their relationship to socioeconomic and disease factors.

PURPOSE: The financial impact of cancer diagnosis and treatment can be considerable to individuals and their households, leading to changes in treatment decision making. This study aimed to quantify effects on income and employment; describe how cost-related factors influence treatment decision making and need for financial assistance; and to identify patient sociodemographic factors associated with treatment decision making, use of financial assistance and financial effects. METHODS: A cross-sectional self-report questionnaire was administered to oncology outpatients from two hospitals in Australia: one regional and one metropolitan. RESULTS: Of 255 participants, 67 % indicated a change in employment and 63 % of those reported reduced household income since their diagnosis. Travel (15 %), loss of income (14 %) and cost of treatments (11 %) were commonly cited factors influencing treatment decision making. Seventy-four percent of participants reported that they did not access financial assistance, with more than a third (37 %) of those being unaware that financial assistance was available. Being currently not employed and more recent diagnosis were associated with a reduced income since diagnosis. After adjusting for employment status and age, patients with private health insurance had higher odds of reporting that financial factors had influenced treatment decision making (OR = 2.5). CONCLUSION: Unemployment is a major driver of the financial impact of cancer. The costs of treatment may be particularly challenging for those with private health insurance who are more likely to be treated in the private health system where out-of-pocket costs are greater. Improved access to financial assistance is required to better avoid potential inequities.