Value in care: The contribution of supportive care to value-based lung cancer services-A qualitative semistructured interview study.

INTRODUCTION: Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value-based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value-based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. METHODS: This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. RESULTS: Data analysis generated three key themes: valued components of care; benefits of receiving valued care components and consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person-centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value-based care. CONCLUSIONS: This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value-based cancer care. PATIENT OR PUBLIC CONTRIBUTION: This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co-design approaches are embedded in our work.

Development of consensus quality indicators for cancer supportive care: a Delphi study and pilot testing.

BACKGROUND: High quality supportive care is fundamental to achieve optimal health outcomes for people affected by cancer. Use of quality indicators provides comparative information for monitoring, management, and improvement of care within and across healthcare systems. The aim of this Australian study was to develop and test a minimum viable set of cancer supportive care quality indicators that would be feasible to implement and generate usable data for policy and practice. METHODS: A two-round, modified reactive Delphi process was employed firstto develop the proposed indicators. Participants with expertise in cancer control in Australia, the United Kingdom, and Canada rated their level of agreement on a 7-point Likert scale against criteria assessing the importance, feasibility, and usability of proposed indicators. Relative response frequencies were assessed against pre-specified consensus criteria and a ranking exercise, which delivered the list of proposed indicators. Draft indicators were then presented to a purposive sample of clinicial and health management staff via qualitative interviews at two acute care settings in Melbourne, Australia for feedback regarding feasibility. Desktop audits of online published health service policy and practice descriptions were also conducted at participating acute care settings to confirm health service data availability and feasibility of collection to report against proposed indicators. RESULTS: Sixteen quality indicators associated with the delivery of quality cancer supportive care in Australian acute healthcare settings met pre-specified criteria for inclusion. Indicators deemed 'necessary' were mapped and ranked across five key categories: Screening, Referrals, Data Management, Communication and Training, and Culturally Safe and Accessible Care. Testing confirmed indicators were viewed as feasible by clinical and health management staff, and desktop audits could provide a fast and reasonably effective method to assess general adherence and performance. CONCLUSIONS: The development of quality indicators specific to cancer supportive care provides a strong framework for measurement and monitoring, service improvement, and practice change with the potential to improve health outcomes for people affected by cancer. Evaluation of implementation feasibility of these expert consensus generated quality indicators is recommended.

Availability and accessibility of services to address financial toxicity described by Australian lung cancer patients and healthcare professionals.

PURPOSE: Although the financial burden and impact of a cancer diagnosis has been widely described in international literature, less understood is the availability and accessibility of services to ameliorate this need. This study reports the experiences of Australian lung cancer patients and health professionals delivering care, regarding factors that exacerbate and mitigate financial stress, and availability and accessibility of services to support people following a cancer diagnosis. METHODS: Qualitative semi-structured interviews with twenty-three lung cancer patients attending two metropolitan tertiary health services and eleven health professionals delivering care were undertaken during July-August 2021. RESULTS: Neither health service systematically screened for financial toxicity nor routinely provided information regarding potential financial impacts during consultations. Patients experienced lengthy delays in accessing welfare supports, provoking financial stress and worry. Health professionals reported limited resources and referral services to support patients with financial need; this was especially problematic for patients with lung cancer. They described its psychological impact on patients and their family members or carers and warned of its impact on ability to adhere to treatment. CONCLUSION: Available and accessibility of services addressing financial toxicity in Australian lung cancer patients is inadequate. Although financial stress is a common, distressing problem, health professionals feel hampered in their ability to help due to limited service availability. Left unaddressed, financial toxicity can impact treatment adherence, directly influencing health outcomes, and increase risk of poverty, amplifying social inequities. Findings highlight opportunity for actionable interventions like financial consent and routine screening and discussion of financial toxicity across care pathways.

Drivers and barriers to COVID-19 vaccination in Australians with cancer.

PURPOSE: To understand the drivers and barriers for COVID-19 vaccination in people with cancer in Australia. METHODS: A cross-sectional, online survey, distributed nationally following the establishment of community vaccination programs, wider availability of COVID-19 vaccines and emergence of new variants. Consisting of 21 questions, the survey was designed to determine the behavioural and social drivers of vaccination, participant demographics, underlying disease and treatment, and vaccination status. It was open from the 10th of August 2021 to the 7th of September 2021, recruiting people who had a previous history of cancer (diagnosed or treated in the past 5 years). RESULTS: A total of 1506 responses were included in the final analysis. Overall, 87.8% reported a positive attitude toward vaccination and 83.1% had received at least one dose of a COVID-19 vaccine. Perceived risk of COVID-19 infection (for self and others) and engagement with a trusted health professional were key drivers for vaccination, while concerns about vaccine development, safety and side effects were barriers. Concerns about vaccination mostly stemmed from a place of misinformation, rather than a broader disregard of vaccines. Just over a third (497, 34.3%) of the respondents were concerned that the vaccine would impact their cancer treatment. CONCLUSION: Overall, participants had positive attitudes toward COVID-19 vaccination and thought it was safe. Findings supported the role of health professionals and cancer organisations as trusted information providers and calls for more, credible information to help people with cancer make informed decisions about the COVID-19 vaccine.

Refocusing cancer supportive care: a framework for integrated cancer care.

OBJECTIVE: Cancer supportive care comprises an integrative field of multidisciplinary services necessary for people affected by cancer to manage the impact of their disease and treatment and achieve optimal health outcomes. The concept of supportive care, largely driven by Margaret Fitch's seminal supportive care framework, was developed with the intent to provide health service planners with a conceptual platform to plan and deliver services. However, over time, this concept has been eroded, impacting implementation and practice of supportive care. This study therefore aimed to examine expert contemporary views of supportive care with the view to refocusing the definition and conceptual framework of cancer supportive care to enhance relevance to present-day cancer care. METHODS: A two-round online modified reactive Delphi survey was employed to achieve consensus regarding terminology to develop a contemporary conceptual framework. A listing of relevant cancer supportive care terms identified through a scoping review were presented for assessment by experts. Terms that achieved ≥ 75% expert agreement as 'necessary' were then assessed using Theory of Change (ToC) to develop consensus statements and a conceptual framework. RESULTS: A total of 55 experts in cancer control with experience in developing, advising on, delivering, or receiving supportive care in cancer took part in the Delphi surveys. Expert consensus assessed current terminology via Delphi round 1, with 124 terms deemed relevant and 'necessary' per pre-specified criteria. ToC was applied to consensus terms to develop three key statements of definition, and a comprehensive conceptual framework, which were presented for expert consensus review in Delphi round 2. CONCLUSION: Finalised definitions and conceptual framework are strongly aligned with relevant international policy and advocacy documents, and strengthen focus on early identification, timely intervention, multidisciplinary collaboration, and end-to-end, cross-sector, cancer supportive care.

Social return on investment economic evaluation of supportive care for lung cancer patients in acute care settings in Australia.

BACKGROUND: Unmanaged consequences of cancer and its treatment are high among patients with lung cancer and their informal carers, resulting in avoidable healthcare use and financial burden. Provision of cancer supportive care addressing the impacts of cancer and its treatment has demonstrated efficacy in mitigating these consequences; however, globally, there is a lack of investment in these services. Paucity of robust economic evidence regarding benefit of cancer supportive care has limited policy impact and allocation of resources. This study therefore utilised a Social Return on Investment (SROI) methodology to conduct a forecast evaluation of lung cancer supportive care services, to ascertain potential social value and return on investment. METHODS: An SROI economic evaluation model was developed using qualitative stakeholder consultations synthesised with published evidence to develop the inputs, outcomes and financial value associated with the delivery of a hypothetical model of quality lung cancer supportive care services over a one and five year period. SROI ratios were generated to determine the social value and cost savings associated per every $1AUD invested in cancer supportive care for both the healthcare system and patients. Deadweight, drop off and attribution were calculated, and sensitivity analysis was performed to confirm the stability of the model. RESULTS: The value generated from modelled supportive care service investments in a one-year period resulted in an SROI ratio of 1:9; that is, for every dollar invested in supportive care, AUD$9.00 social return is obtained when savings to the healthcare system and benefits to the patients are combined. At five-years, these same investments resulted in greater cumulative value generated for both the patient and the healthcare system, with a SROI ratio of 1:11. CONCLUSION: Our study provides strong evidence for policy makers, clinicians and consumers to advocate for further investment in cancer supportive care, as demonstrated cost savings could be achieved through implementation of the proposed supportive care service model, with these accruing over a five-year period. The SROI model provides a comprehensive framework detailing supportive care services and the health workforce necessary to achieve value-based outcomes for patients and the healthcare system.

Identification of low health and cancer literacy in oncology patients: a cross-sectional survey.

OBJECTIVE: Health literacy is a significant public health concern, particularly given the increased complexity of chronic disease health management and health system navigation, and documented associations between low health literacy and poor health outcomes. This study therefore aimed to identify the proportion and characteristics of outpatients visiting a specialist cancer hospital who report low health literacy and/or low cancer health literacy. METHOD: This study used a cross-sectional survey administered verbally with patients attending a specialist cancer hospital located in Melbourne, Australia over a two-week period. Process data on conducting health literacy screening within a clinical setting was collected. RESULTS: Those identified with inadequate general health literacy were different to those identified with low cancer-specific health literacy, although overall both proportions were low. Cross-sectional screening of patients was difficult, despite utilising verbal surveying methods designed to increase capacity for participation. CONCLUSION: Health literacy screening using the tools selected was not useful for identifying or describing patients with low health literacy in this setting, given the disparity in those categorised by each measure. PRACTICE IMPLICATIONS: Until the theoretical construct of health literacy is better defined, measurement of health literacy may not be clinically useful.

Culturally and linguistically diverse oncology patients' perspectives of consultation audio-recordings and question prompt lists.

OBJECTIVE: Ethnicity and migrant status result in disparities with cancer burden and survival, with communication difficulties cited as the main barrier to access. Our research team tested a communication intervention package comprising consultation audio-recordings (ARs) and question prompt lists (QPLs) for low English-speaking (LES) patients with cancer. This study explored LES patient experiences, preferences, and recommendations regarding the communication package. METHODS: Participants completed a questionnaire and qualitative interview regarding ARs and QPLs. Eligibility criteria comprised aged ≥18 years old; a consultation with an oncologist between June 1, 2015 and April 1, 2016; an Arabic, Cantonese, Greek, or Mandarin professional interpreter booked for that consultation; and randomised to receive the communication intervention. RESULTS: Eighteen patients completed the qualitative interview and 17 completed the questionnaire. Fifteen reported listening to the AR at least once. Participants reported that QPLs and ARs provide support and assistance with remembering and understanding medical information. Both resources were seen as having applicability beyond the oncology setting in regards to improving health service delivery and continuity of care. However, patients felt that individual tailoring of the resources should be considered. Patients also found it useful to share ARs with family. CONCLUSIONS: The LES participants in this study considered the ARs and QPLs useful for most, but not all contexts. Recommendations regarding delivery and use highlight that these resources should be tailored and patient-driven. Further, patients foresaw a range of additional uses for consultation ARs within the broader healthcare context.

Measuring recall of medical information in non-English-speaking people with cancer: A methodology.

BACKGROUND: Many patients who require an interpreter have difficulty remembering information from their medical consultations. Memory aids such as consultation audio-recordings may be of benefit to these patients. However, there is no established means of measuring patients' memory of medical information. OBJECTIVES: This study aimed to develop a method for eliciting and coding recall of medical information in non-English-speaking patients. DESIGN: This method, called Patient-Interpreter-Clinician coding (PICcode), was developed in the context of a phase II trial conducted in two outpatient oncology clinics in Melbourne, Australia, and was refined iteratively through consultation with an expert panel and piloting. Between-coder differences in early versions of the coding system were resolved through discussion and consensus resulting in refinements to PICcode. RESULTS: The final version of PICcode involved transcribing, translating and coding of audio-recorded consultations and semi-structured interviews (SSI). The SSIs were designed to elicit patients' free-recall of medical information. Every unit of medical information in the consultation was identified and categorized in a coding tree. SSIs were coded to identify the extent to which information was recalled from the consultation. DISCUSSION: The iterative changes involved in developing PICcode assisted in clarifying precise details of the process and produced a widely applicable coding system. PICcode is the most comprehensively described method of determining the amount of information that patients who use an interpreter recall from their medical consultations. PICcode can be adapted for English-speaking patients and other healthcare populations.

ProCare Trial: a phase II randomized controlled trial of shared care for follow-up of men with prostate cancer.

OBJECTIVES: To test the feasibility and efficacy of a multifaceted model of shared care for men after completion of treatment for prostate cancer. PATIENTS AND METHODS: Men who had completed treatment for low- to moderate-risk prostate cancer within the previous 8 weeks were eligible. Participants were randomized to usual care or shared care. Shared care entailed substituting two hospital visits with three visits in primary care, a survivorship care plan, recall and reminders, and screening for distress and unmet needs. Outcome measures included psychological distress, prostate cancer-specific quality of life, satisfaction and preferences for care and healthcare resource use. RESULTS: A total of 88 men were randomized (shared care n = 45; usual care n = 43). There were no clinically important or statistically significant differences between groups with regard to distress, prostate cancer-specific quality of life or satisfaction with care. At the end of the trial, men in the intervention group were significantly more likely to prefer a shared care model to hospital follow-up than those in the control group (intervention 63% vs control 24%; P<0.001). There was high compliance with prostate-specific antigen monitoring in both groups. The shared care model was cheaper than usual care (shared care AUS$1411; usual care AUS$1728; difference AUS$323 [plausible range AUS$91-554]). CONCLUSION: Well-structured shared care for men with low- to moderate-risk prostate cancer is feasible and appears to produce clinically similar outcomes to those of standard care, at a lower cost.

Communication challenges experienced by migrants with cancer: A comparison of migrant and English-speaking Australian-born cancer patients.

OBJECTIVES: Understanding the difficulties faced by different migrant groups is vital to address disparities and inform targeted health-care service delivery. Migrant oncology patients experience increased morbidity, mortality and psychological distress, with this tentatively linked to language and communication difficulties. The objective of this exploratory study was to investigate the communication barriers and challenges experienced by Arabic, Greek and Chinese (Mandarin and Cantonese) speaking oncology patients in Australia. METHODS: This study employed a cross-sectional design using patient-reported outcome survey data from migrant and English-speaking Australian-born patients with cancer. Patients were recruited through oncology clinics and Australian state cancer registries. Data were collected regarding patient clinical and demographic characteristics and health-care and communication experiences. Data from the clinics and registries were combined for analysis. RESULTS: Significant differences were found between migrant groups in demographic characteristics, communication and health-care experiences, and information and care preferences. Chinese patients cited problems with understanding medical information, the Australian health-care system, and communicating with their health-care team. Conversely, Arabic- and Greek-speaking patients reported higher understanding of the health-care system, and less communication difficulties. CONCLUSIONS: Our study findings suggest that migrant groups differ from each other in their health communication expectations and requirements. Lower education and health literacy of some groups may play a role in poorer health outcomes. Public health interventions and assistance provided to migrants should be tailored to the specific needs and characteristics of that language or cultural group. Future research directions are discussed.

'What is this active surveillance thing?' Men's and partners' reactions to treatment decision making for prostate cancer when active surveillance is the recommended treatment option.

OBJECTIVE: In the past decade, localised prostate cancer (LPC) management has been shifting from three radical treatment options (radical prostatectomy, external beam radiotherapy, or brachytherapy) to also include active surveillance (AS). This study examines men with LPC and partners' experiences of choosing between AS and radical treatments, and their experiences of AS when selected. METHODS: A qualitative descriptive research design was used. Interviewed participants were men, and partners of men, who either had chosen radical treatment immediately following diagnosis or had been on AS for at least 3 months. AS was the recommended treatment. Transcribed interviews were thematically analysed and inter-rater reliability integrated. RESULTS: Twenty-one men and 14 partners participated. Treatment decisions reflected varied reactions to prostate cancer information, regularly described as contradictory, confusing, and stressful. Men and partners commonly misunderstood AS but could describe monitoring procedures. Partners often held the perception that they were also on AS. Men and partners usually coped with AS but were sometimes encumbered by treatment decision-making memories, painful biopsies, ongoing conflicting information, and unanswered medical questions. Radical treatment was selected when cancer progression was feared or medically indicated. Some preferred doctors to select treatments. CONCLUSIONS: To reduce distress frequently experienced by men diagnosed with LPC and their partners during treatment decision making and ongoing AS monitoring, the following are needed: improved community and medical awareness of AS; consistent information about when radical treatment is required; and consistent, unbiased information on treatment options, prognostic indicators, and side effects. Regularly updated decisional support information/aids incorporating men's values are imperative.

Barriers to Early Diagnosis of Breast Cancer amongst women in the Fiji Islands: A Qualitative Study.

OBJECTIVE: To investigate the factors that may account for the delay in diagnosis and treatment in Fijian female breast cancer patients. METHODS: This study adopted a qualitative approach to gain an in-depth understanding of individual barriers and participants' experiences within the Fijian context. Utilising semi-structured interviews, the study interviewed breast cancer survivors, community women, healthcare professionals, and traditional healers. RESULTS: Two primary themes emerged from participants' narratives relating to barriers to early breast cancer detection: (1) individual-related factors and (2) healthcare system-related factors. Within these, five sub-themes were identified. For individual-related factors, these included: cultural & religious beliefs, social support, and awareness & misconception. For healthcare system factors, the sub-themes were: House of death and limited community accessibility to screening and awareness initiatives. CONCLUSION: The results highlighted the need for targeted interventions that consider the importance of cultural beliefs, improve awareness, and foster trust in the healthcare system.

Co-designing an online treatment decision aid for men with low-risk prostate cancer: Navigate.

Objectives: To develop an online treatment decision aid (OTDA) to assist patients with low-risk prostate cancer (LRPC) and their partners in making treatment decisions. Patients and methods: Navigate, an OTDA for LRPC, was rigorously co-designed by patients with a confirmed diagnosis or at risk of LRPC and their partners, clinicians, researchers and website designers/developers. A theoretical model guided the development process. A mixed methods approach was used incorporating (1) evidence for essential design elements for OTDAs; (2) evidence for treatment options for LRPC; (3) an iterative co-design process involving stakeholder workshops and prototype review; and (4) expert rating using the International Patient Decision Aid Standards (IPDAS). Three co-design workshops with potential users (n = 12) and research and web-design team members (n = 10) were conducted. Results from each workshop informed OTDA modifications to the OTDA for testing in the subsequent workshop. Clinician (n = 6) and consumer (n = 9) feedback on usability and content on the penultimate version was collected. Results: The initial workshops identified key content and design features that were incorporated into the draft OTDA, re-workshopped and incorporated into the penultimate OTDA. Expert feedback on usability and content was also incorporated into the final OTDA. The final OTDA was deemed comprehensive, clear and appropriate and met all IPDAS criteria. Conclusion: Navigate is an interactive and acceptable OTDA for Australian men with LRPC designed by men for men using a co-design methodology. The effectiveness of Navigate in assisting patient decision-making is currently being assessed in a randomised controlled trial with patients with LRPC and their partners.

Patient communication and experiences in cancer clinical drug trials: a mixed-method study at a specialist clinical trials unit.

BACKGROUND: As cancer therapies increase in their complexity, effective communication among patients, physicians, and research staff is critical for optimal clinical trial management. Currently, we understand little about on-trial communication practices and patient trial experiences over time. This mixed-method study explored patient experiences of participating in a clinical drug trial at different time points, focussing on patient communication with trial staff. METHODS: Patients enrolled in clinical drug trials conducted at the Parkville Cancer Clinical Trials Unit were invited to complete a tailored online survey and/or a qualitative interview. Patients were recruited to three cohorts based on time since the first trial treatment: new (≥ 1 to ≤ 13 weeks), mid- (≥ 14 to ≤ 26 weeks), and long-term (≥ 52 weeks) trial patients. Descriptive statistics were calculated for survey responses. Interview data were analysed thematically with a team-based approach. Survey and interview data were integrated at the intepretation stage. RESULTS: From May to June 2021, 210 patients completed a survey (response rate 64%, 60% male), 20 completed interviews (60% male), and 18 completed both. More long-term trial patients (46%) participated than new (29%) and mid-trial patients (26%). Survey data showed high (> 90%) patient satisfaction with the provision of trial information and communication with trial staff across trial stages, and many reported trial experiences as above and beyond standard care. Interview data indicated that written trial information could be overwhelming, and verbal communication with the staff and physicians was highly valued, especially for enrolment and side effect management among long-term patients. Patients described the key points along the clinical trial trajectory that merit close attention: clear and well-communicated randomisation practices, reliable pathways for side effect reporting and prompt response from the trial staff, and end-of-trial transition management to avoid a sense of abandonment. CONCLUSION: Patients reported high overall satisfaction with trial management but outlined key pinch points requiring improved communication practices. Establishing a range of effective communication practices among trial staff and physicians with patients in cancer clinical trials may have a wide range of positive effects on patient accrual, retention, and satisfaction.

Clinical Utility Assessment of a Nursing Checklist Identifying Complex Care Needs Due to Inequities Among Ambulatory Patients With Cancer: Protocol for a Mixed Methods Study.

BACKGROUND: Disparities in cancer incidence, complex care needs, and poor health outcomes are largely driven by structural inequities stemming from social determinants of health. To date, no evidence-based clinical tool has been developed to identify newly diagnosed patients at risk of poorer outcomes. Specialist cancer nurses are well-positioned to ameliorate inequity of opportunity for optimal care, treatment, and outcomes through timely screening, assessment, and intervention. We designed a nursing complexity checklist (the "Checklist") to support these activities, with the ultimate goal of improving equitable experiences and outcomes of care. This study aims to generate evidence regarding the clinical utility of the Checklist. OBJECTIVE: The primary objectives of this study are to provide qualitative evidence regarding key aspects of the Checklist's clinical utility (appropriateness, acceptability, and practicability), informed by Smart's multidimensional model of clinical utility. Secondary objectives explore the predictive value of the Checklist and concordance between specific checklist items and patient-reported outcome measures. METHODS: This prospective mixed methods case series study will recruit up to 60 newly diagnosed patients with cancer and 10 specialist nurses from a specialist cancer center. Nurses will complete the Checklist with patient participants. Within 2 weeks of Checklist completion, patients will complete 5 patient-reported outcome measures with established psychometric properties that correspond to specific checklist items and an individual semistructured interview to explore Checklist clinical utility. Interviews with nurses will occur 12 and 24 weeks after they first complete a checklist, exploring perceptions of the Checklist's clinical utility including barriers and facilitators to implementation. Data describing planned and unplanned patient service use will be collected from patient follow-up interviews at 12 weeks and the electronic medical record at 24 weeks after Checklist completion. Descriptive statistics will summarize operational, checklist, and electronic medical record data. The predictive value of the Checklist and the relationship between specific checklist items and relevant patient-reported outcome measures will be examined using descriptive statistics, contingency tables, measures of association, and plots as appropriate. Qualitative data will be analyzed using a content analysis approach. RESULTS: This study was approved by the institution's ethics committee. The enrollment period commenced in May 2022 and ended in November 2022. In total, 37 patients with cancer and 7 specialist cancer nurses were recruited at this time. Data collection is scheduled for completion at the end of May 2023. CONCLUSIONS: This study will evaluate key clinical utility dimensions of a nursing complexity checklist. It will also provide preliminary evidence on its predictive value and information to support its seamless implementation into everyday practice including, but not limited to, possible revisions to the Checklist, instructions, and training for relevant personnel. Future implementation of this Checklist may improve equity of opportunity of access to care for patients with cancer. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/48432.

Why is advance care planning underused in oncology settings? A systematic overview of reviews to identify the benefits, barriers, enablers, and interventions to improve uptake.

Background: Advance care planning (ACP) centres on supporting people to define and discuss their individual goals and preferences for future medical care, and to record and review these as appropriate. Despite recommendations from guidelines, rates of documentation for people with cancer are considerably low. Aim: To systematically clarify and consolidate the evidence base of ACP in cancer care by exploring how it is defined; identifying benefits, and known barriers and enablers across patient, clinical and healthcare services levels; as well as interventions that improve advance care planning and are their effectiveness. Methods: A systematic overview of reviews was conducted and was prospectively registered on PROSPERO. PubMed, Medline, PsycInfo, CINAHL, and EMBASE were searched for review related to ACP in cancer. Content analysis and narrative synthesis were used for data analysis. The Theoretical Domains Framework (TDF) was used to code barriers and enablers of ACP as well as the implied barriers targeted by each of the interventions. Results: Eighteen reviews met the inclusion criteria. Definitions were inconsistent across reviews that defined ACP (n=16). Proposed benefits identified in 15/18 reviews were rarely empirically supported. Interventions reported in seven reviews tended to target the patient, even though more barriers were associated with healthcare providers (n=40 versus n=60, respectively). Conclusion: To improve ACP uptake in oncology settings; the definition should include key categories that clarify the utility and benefits. Interventions need to target healthcare providers and empirically identified barriers to be most effective in improving uptake. Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?, identifier CRD42021288825.

Strengthening cancer control in the South Pacific through coalition-building: a co-design framework.

Background: Cancer is a significant problem for the South Pacific region due to a range of complex health challenges. Currently gaps in diagnosis, treatment and palliative care are significant, and while governmental commitment is strong, economic constrains limit health system strengthening. Alliances have been successful in strengthening non-communicable disease and cancer control policy and services in resource constrained settings. A regional coalition approach has therefore been recommended as an effective solution to addressing many of the challenges for cancer control in the South Pacific. However, evidence regarding the effective mechanisms for development of alliances or coalitions is scarce. This study aimed to 1) create a Coalition Development Framework; 2) assess the use of the Framework in practice to co-design a South Pacific Coalition. Methods: Creation of the Coalition Development Framework commenced with a scoping review and content analysis of existing literature. Synthesis of key elements formed an evidence-informed step-by-step guide for coalition-building. Application of the Framework comprised consultation and iterative discussions with key South Pacific cancer control stakeholders in Fiji, New Caledonia, Papua New Guinea, Samoa and Tonga. Concurrent evaluation of the Framework utilising Theory of Change (ToC) and qualitative analysis of stakeholder consultations was undertaken. Findings: The finalised Coalition Development Framework comprised four phases with associated actions and deliverables: engagement, discovery, unification, action and monitoring. Application of the Framework in the South Pacific identified overwhelming support for a Cancer Control Coalition through 35 stakeholder consultations. Framework phases enabled stakeholders to confirm coalition design and purpose, strategic imperatives, structure, local foundations, barriers and facilitators, and priorities for action. ToC and thematic consultation analysis confirmed the Framework to be an effective mechanism to drive engagement, unification and action in alliance-building. Interpretation: A Coalition to drive cancer control has significant support among key Pacific stakeholders, and establishment can now be commenced. Importantly results confirm the effective application of the Coalition Development Framework in an applied setting. If momentum is continued, and a regional South Pacific Coalition established, the benefits in reducing the burden of cancer within the region will be substantial. Funding: This work was completed for a Masters of Public Health project. Cancer Council Australia provided project funding.

How can we improve information for people affected by cancer? A national survey exploring gaps in current information provision, and challenges with accessing cancer information online.

OBJECTIVE: Despite improved recognition regarding the importance and association between provision of high quality information for people affected by cancer and improved outcomes and experiences; gaps and unmet needs are still reported. As oncology health information provision increasingly moves online, understanding how service users experience and manage misinformation is important. Determining patient and carer preferences regarding cancer provision is needed to address outstanding gaps. METHODS: This study utilised a purpose-built national cross-sectional survey distributed via social media to assess perspectives regarding cancer information in Australia. Quantitative and qualitative (open text) items assessed respondents' perspectives regarding current inforation preferences and gaps, and experiences with accessing information online. RESULTS: A total of 491 people affected by cancer completed the survey. Respondents highlighted a preference for information that better addresses the diversity of cancer experience, and is more timely and responsive to personal situation and care context. Despite increasing attention to health literacy standards, complex medical jargon and terminology remains prevalent. Many respondents have concerns about misinformation, and seek improved mechanisms or skills to assist with determining the trustworthiness and relevance of information found online. CONCLUSIONS: Survey responses identified current gaps in information provision for people affected by cancer. Personalised information in formats which are more flexible, accessible, and responsive to user needs are required. PRACTICE IMPLICATIONS: Education and resources to target and improve digital health literacy and combat health misinformation are needed. Novel solutions co-designed by people affected by cancer will ensure that information is provided in a manner that is relevant, timely, and personalised.