ORCID Profile
0000-0003-2322-7817
Current Organisations
University of Melbourne
,
Peter MacCallum Cancer Centre
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Publisher: JMIR Publications Inc.
Date: 23-04-2023
DOI: 10.2196/48432
Publisher: JMIR Publications Inc.
Date: 26-07-2018
Abstract: any patients choose to audio-record their medical consultations so that they can relisten to them at home and share them with family. Consultation audio-recordings can improve patients’ recall and understanding of medical information and increase their involvement in decision making. A hospital-endorsed consultation audio-recording mobile app would provide patients with the permission and means to audio-record their consultations. The Theory of Planned Behavior provides a framework for understanding how patients can be encouraged to appropriately audio-record consultations. he aim of this study was to use a co-design process to develop a consultation audio-recording mobile app called SecondEars. pp development began with stakeholder engagement, followed by a series of 6 co-design workshops and then user acceptance testing. Stakeholder engagement included advice from legal, information technology (IT), clinical and allied health leads digital strategy and medical records. he co-design workshops were attended by: patient consumers, members of the research team, IT staff, the app designers, clinicians, and staff from medical records. During workshops 1 to 4, the purpose and scope of the app were refined, possible pitfalls were addressed, and design features were discussed. The app designers then incorporated the results from these workshops to produce a wireframe mock-up of the proposed SecondEars app, which was presented for feedback at workshops 5 and 6. he stakeholders identified 6 requirements for the app, including that it be patient driven, secure, clear in terms of legal responsibilities, linked to the patient’s medical record, and that it should require minimal upfront and ongoing resources. These requirements informed the scope of the co-design workshops. The workshops were attended by between 4 and 13 people. The workshop attendees developed a list of required features and suggestions for user interface design. The app developers used these requirements and recommendations to develop a prototype of the SecondEars app in iOS, which was then refined through user acceptance testing. he SecondEars app allows patients to have control and autonomy over audio-recording and sharing their consultations while maintaining privacy and safety for medical information and legal protection for clinicians. The app has been designed to have low upkeep and minimal impact on clinical processes. The SecondEars prototype is currently being tested with patients in a clinical setting.
Publisher: Springer Science and Business Media LLC
Date: 11-01-2021
DOI: 10.1186/S13063-020-04986-9
Abstract: Active surveillance (AS) is the disease management option of choice for low-risk prostate cancer. Despite this, men with low-risk prostate cancer (LRPC) find management decisions distressing and confusing. We developed Navigate , an online decision aid to help men and their partners make management decisions consistent with their values. The aims are to evaluate the impact of Navigate on uptake of AS decision-making preparedness decisional conflict, regret and satisfaction quality of illness communication and prostate cancer-specific quality of life and anxiety. In addition, the healthcare cost impact, cost-effectiveness and patterns of use of Navigate will be assessed. This paper describes the study protocol. Three hundred four men and their partners are randomly assigned one-to-one to Navigate or to the control arm. Randomisation is electronically generated and stratified by site. Navigate is an online decision aid that presents up-to-date, unbiased information on LRPC tailored to Australian men and their partners including each management option and potential side-effects, and an interactive values clarification exercise. Participants in the control arm will be directed to the website of Australia’s peak national body for prostate cancer. Eligible patients will be men within 3 months of being diagnosed with LRPC, aged 18 years or older, and who are yet to make a treatment decision, who are deemed eligible for AS by their treating clinician and who have Internet access and sufficient English to participate. The primary outcome is self-reported uptake of AS as the first-line management option. Secondary outcomes include self-reported preparedness for decision-making decisional conflict, regret and satisfaction quality of illness communication and prostate cancer-specific quality of life. Uptake of AS 1 month after consent will be determined through patient self-report. Men and their partners will complete study outcome measures before randomisation and 1, 3 and 6 months after study consent. The Navigate online decision aid has the potential to increase the choice of AS in LRPC, avoiding or delaying unnecessary radical treatments and associated side effects. In addition, Navigate is likely to reduce patients’ and partners’ confusion and distress in management decision-making and increase their quality of life. Australian and New Zealand Clinical Trial Registry ACTRN12616001665426 . Registered on 2 December 2016. All items from the WHO Trial Registration Data set can be found in this manuscript.
Publisher: Wiley
Date: 16-05-2014
DOI: 10.1002/PON.3576
Abstract: 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. 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. 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. 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.
Publisher: Springer Science and Business Media LLC
Date: 13-06-2023
DOI: 10.1186/S13063-023-07284-2
Abstract: 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. 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. 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. 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.
Publisher: JMIR Publications Inc.
Date: 24-07-2019
Abstract: ealth care systems are increasingly looking to mobile device technologies (mobile health) to improve patient experience and health outcomes. SecondEars is a smartphone app designed to allow patients to audio-record medical consultations to improve recall, understanding, and health care self-management. Novel health interventions such as SecondEars often fail to be implemented post pilot-testing owing to inadequate user experience (UX) assessment, a key component of a comprehensive implementation strategy. his study aimed to pilot the SecondEars app within an active clinical setting to identify factors necessary for optimal implementation. Objectives were to (1) investigate patient UX and acceptability, utility, and satisfaction with the SecondEars app, and (2) understand health professional perspectives on issues, solutions, and strategies for effective implementation of SecondEars. mixed methods implementation study was employed. Patients were invited to test the app to record consultations with participating oncology health professionals. Follow-up interviews were conducted with all participating patients (or carers) and health professionals, regarding uptake and extent of app use. Responses to the Mobile App Rating Scale (MARS) were also collected. Interviews were analyzed using interpretive descriptive methodology all quantitative data were analyzed descriptively. total of 24 patients used SecondEars to record consultations with 10 multidisciplinary health professionals. In all, 22 of these patients used SecondEars to listen to all or part of the recording, either alone or with family. All 100% of patient participants reported in the MARS that they would use SecondEars again and recommend it to others. A total of 3 themes were identified from the patient interviews relating to the UX of SecondEars: empowerment, facilitating support in cancer care, and usability. Further, 5 themes were identified from the health professional interviews relating to implementation of SecondEars: changing hospital culture, mitigating medico-legal concerns, improving patient care, communication, and practical implementation solutions. ata collected during pilot testing regarding recording use, UX, and health professional and patient perspectives will be important for designing an effective implementation strategy for SecondEars. Those testing the app found it useful and felt that it could facilitate the benefits of consultation recordings, along with providing patient empowerment and support. Potential issues regarding implementation were discussed, and solutions were generated. ustralia and New Zealand Clinical Trials Registry ACTRN12618000730202 www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373915& isClinicalTrial=False
Publisher: Springer Science and Business Media LLC
Date: 23-11-2022
DOI: 10.1186/S12913-022-08800-X
Abstract: 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. 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. 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. 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.
Publisher: Springer Science and Business Media LLC
Date: 03-05-2021
DOI: 10.1007/S00520-021-06164-2
Abstract: 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. 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. 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. 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. Until the theoretical construct of health literacy is better defined, measurement of health literacy may not be clinically useful.
Publisher: Wiley
Date: 05-03-2017
DOI: 10.1111/HEX.12529
Publisher: American Society of Clinical Oncology (ASCO)
Date: 10-2018
DOI: 10.1200/JGO.18.46600
Abstract: Background: Immunotherapy has dramatically changed the treatment landscape and survival outcomes for patients with advanced melanoma. However, the success rates for immunotherapy are varied, and unpredictable. Immunotherapy can result in a range of treatment related toxicities, many of which can impact significantly on quality of life (QoL) or become life-threatening. Immunotherapies are administered in an ambulatory setting and as such, much of the responsibility for side-effect recognition, reporting, and monitoring falls to patients and their informal caregivers. Given the importance of early side-effect identification and management, it is important to understand the patient and caregiver experience of immunotherapy to facilitate patient safety. Aim: To: Explore the experiences of patients with advanced melanoma who received immunotherapy, and their informal caregivers Investigate the impact of immunotherapy treatment (in particular toxicities) on QoL of patients and their caregivers Identify behaviors and strategies patients and caregivers' used to manage immunotherapy treatment and toxicities. Methods: This cross-sectional, exploratory study used qualitative interviews with patients with stage IV melanoma who had completed, or were receiving nivolumab, pembrolizumab or ipilimumab as monotherapy, and their caregivers. Analysis used interpretive description methodology. Results: Twenty three patients and nine caregivers took part. Patients and caregivers discussed feelings of uncertainty regarding immunotherapy efficacy and toxicities and raised concerns about correctly identifying relevant and reportable symptoms. Some participants did not see the link between symptoms experienced and treatment despite being satisfied with the level of information provided by their healthcare team. This highlights a potential lack of understanding about side-effects and/or deficiencies in the way treatment education is delivered. This was particularly concerning when resulting in delayed nursing or medical intervention. Findings identified the integral role caregivers have in the care of patients receiving immunotherapy. Conclusion: Despite immunotherapy improving survival rates for many patients with melanoma their QoL, and that of their caregivers can be negatively impacted by uncertainty about efficacy and the identification and reporting of potential side effects. Patient and caregiver experience may be improved with better education about what to expect, provided in various formats and at multiple time points, in conjunction with defined pathways for rapid access to the nursing and medical advice.
Publisher: BMJ
Date: 02-2020
DOI: 10.1136/BMJOPEN-2019-036059
Abstract: There is increasing evidence demonstrating the benefits of exercise in counteracting cancer treatment-related fatigue. Immunotherapy is an established treatment for advanced melanoma, and is associated with fatigue in a third of patients. The safety and efficacy of exercise in counteracting treatment-related fatigue in patients with advanced melanoma receiving immunotherapy are yet to be determined. This study aims to assess the safety, adherence to and acceptability of a mixed-methods parallel-group, pilot randomised controlled trial of a personalised, 12-week semi-supervised exercise programme prescribed by an exercise physiologist (iMove) in 30 patients with stage IV melanoma scheduled to commence immunotherapy: single agent ipilimumab, nivolumab or pembrolizumab, or combination ipilimumab and nivolumab. The trial will be used to provide preliminary evidence of the potential efficacy of exercise for managing fatigue. Thirty participants will be recruited from a specialist cancer centre between May and September, 2019. Participants will be randomised 1:1 to receive iMove, or usual care (an information booklet about exercise for people with cancer). Feasibility data comprise: eligibility recruitment and retention rates adherence to and acceptability of exercise consultations, personalised exercise programme and study measures and exercise-related adverse events. Patient-reported outcome measures assess potential impact of the exercise intervention on: fatigue, role functioning, symptoms and quality of life. Follow-up will comprise five time points over 24 weeks. Physical assessments measure physical fitness and functioning. This study was reviewed and approved by the Peter MacCallum Cancer Centre Human Research Ethics Committee (HREC/48927/PMCC-2019). The findings from this trial will be disseminated via conference presentations and publications in peer-reviewed journals, and by engagement with clinicians, media, government and consumers. In particular, we will promote the outcomes of this work among the oncology community should this pilot indicate benefit for patients. ACTRN12619000952145 Pre-results.
Publisher: JMIR Publications Inc.
Date: 23-04-2023
Abstract: he past decade saw remarkable advances in cancer care, treatment and outcomes, but the benefits were not experienced equally by all. Disparities are largely driven by social determinants of health and associated structural barriers. Specialist cancer nurses can 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 reducing disparities in opportunity of access for people diagnosed with cancer. The aim of this study is to understand the clinical utility of the Checklist including issues affecting adoption into routine practice. rimary objectives are to assess the appropriateness, acceptability, and practicability of the Checklist from the perspective of cancer patients and specialist nurses core aspects of each dimension were selected from Smart’s multi-dimensional model of clinical utility. Secondary objectives focus on two aspects of the practicability dimension including a preliminary investigation of the predictive value of the Checklist and concordance between specific checklist items and patient-reported outcome measures (PROMs). p to sixty newly diagnosed cancer patients and ten specialist nurses will be recruited from a specialist cancer centre into this prospective mixed-methods case series study. The Checklist will be completed by a specialist nurse with patient participants. Within two weeks of Checklist completion, patients will complete five PROMs with established psychometric properties that correspond to specific checklist items and an in idual semi-structured interview to explore its acceptability. Interviews with specialist nurses will occur 12 and 24 weeks after they first complete a checklist to explore multiple aspects of clinical utility including barriers and facilitators to effective implementation. Data regarding planned and unplanned patient service-use will be collected from patient follow-up interviews at 12 weeks and the electronic medical record (EMR) at 24 weeks after Checklist completion. Descriptive statistics will be used to summarise operational, checklist and EMR data. Contingency tables and conditional probabilities will be used to explore the predictive value of the Checklist. Descriptive statistics, Cohen’s d/U3 and plots will be used to explore the relationship between specific checklist items and relevant PROMs. Qualitative data will be analysed using a content analysis approach. his study was approved by the institution’s ethics committee. The enrolment period commenced May 2022 and ended November 2022. Thirty-seven cancer patients and seven specialist cancer nurses were recruited in this time. Data collection is scheduled for completion at the end of May 2023. his prospective mixed-methods case series study will evaluate the clinical utility 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.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 10-2018
DOI: 10.1200/JGO.18.46900
Abstract: Background: Oncology consultations can be overwhelming and information-dense. Consultation audio recordings are an effective method to promote patient participation, improve patients' recall and understanding of medical information, and can increase engagement and support through sharing with family and friends. Innovative m-health technologies such as the SecondEars consultation audio recording mobile app provide a patient-designed and controlled audio recording solution while ensuring security and legal protection for clinicians. To ensure the SecondEars app meets the needs of patients, family, clinicians and hospital administrators, the opinions of stakeholders and end users are integral to the concept and study creation, design, and testing processes. Aim: To use key elements of codesign methodology to develop and test SecondEars, a mobile app that allows patients to audio record their consultations within a clinical oncology setting. Methods: The SecondEars app concept began with consumer suggestions that consultation audio recording be used as standard practice of care using patient-driven (use is controlled/determined by patients) technologies. An app solution was conceived and the concept discussed through engagement of consumers as part of the project and research codesign team. Key health service stakeholders comprising representatives from: legal, information technology (IT), clinical service leads, digital strategy, and health information services (HIS), provided project oversight and core legal and data management requirements. The Scrum management framework was used to structure the codesign process during the development and testing phase. Six workshops were run to facilitate further user input with regard to specific app functionality and design. A wireframe version was developed and tested by the codesign team in the final workshop. Feedback was incorporated into a prototype which was circulated for acceptance testing. Results: Twenty people participated in the stakeholder engagement and workshops, comprising: oncology consumers, researchers, IT, HIS, app developers, and oncology health professionals. Key specifications necessitated that SecondEars be patient-driven, secure and confidential, have clear legal guidelines regarding audio recording sharing, be integrated with medical records, and require minimal upfront and ongoing resources. Seven people tested the prototype app during user acceptance testing and gave positive and constructive feedback. A final version of the app was then made available for clinical testing. Conclusion: The SecondEars consultation audio recording app has been successfully created by and for patients. This app gives patients permission and autonomy to audio record and share their consultations responsibly, while maintaining legal protection for clinicians. This app is currently being tested in a clinical setting prior to conducting an implementation study.
Publisher: SAGE Publications
Date: 2019
Abstract: Objective: Treatment with immunotherapy has positively changed the long-term outlook of many patients with advanced melanoma however, fatigue is a common and debilitating side effect. Evidence indicates exercise can improve treatment-related fatigue for patients receiving chemotherapy and radiotherapy. However, currently little is known about exercise behaviors and preferences of patients receiving immunotherapy. This project aimed to describe self-reported levels of fatigue related to immunotherapy patient perspectives of exercise behaviors and barriers and facilitators to engagement in exercise for patients receiving, or recently completed immunotherapy for unresectable stage III and stage IV melanoma. Method: A cross-sectional purpose-built survey was distributed to members of the Melanoma Patients Australia closed Facebook group via an online survey platform. The survey remained active for 1 month, with 3 posts during this time inviting members to participate. Results: A total of 55 responses were collected. Just over half the participants (n = 31 56%) described exercising while receiving immunotherapy, with walking as the most common activity (n = 24 77%). Participants described a range of physical and emotional benefits of exercise, the most predominant being fatigue reduction. Barriers to exercise also included fatigue and competing physical demands at home or work. Patient understanding of what constitutes exercise appeared to differ from clinical classifications. Conclusions: Results from this study indicate that patients are engaging in exercise while receiving immunotherapy, with the intent of mediating treatment-related fatigue. Identification of preferred exercise activities and barriers will assist in developing tailored exercise interventions for this cohort.
Publisher: Research Square Platform LLC
Date: 03-08-2021
Publisher: Informa UK Limited
Date: 02-01-2020
Publisher: BMJ
Date: 03-2014
Publisher: Elsevier BV
Date: 04-2023
Publisher: Wiley
Date: 29-08-2017
DOI: 10.1111/BJU.13593
Abstract: To test the feasibility and efficacy of a multifaceted model of shared care for men after completion of treatment for prostate cancer. 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. 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]). 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.
Publisher: Wiley
Date: 08-07-2016
DOI: 10.1002/PON.4193
Publisher: JMIR Publications Inc.
Date: 12-03-2019
DOI: 10.2196/11111
Publisher: Elsevier BV
Date: 08-2022
DOI: 10.1016/J.PEC.2022.04.009
Abstract: 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. 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. A total of 491 people affected by cancer completed the survey. Respondents highlighted a preference for information that better addresses the ersity 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. 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. 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.
Publisher: Frontiers Media SA
Date: 28-04-2023
DOI: 10.3389/FONC.2023.1040589
Abstract: Advance care planning (ACP) centres on supporting people to define and discuss their in idual 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. 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. 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. 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). 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. www.crd.york.ac.uk rospero/display_record.php? , identifier CRD42021288825.
Publisher: Wiley
Date: 11-2021
DOI: 10.5694/MJA2.50838
Publisher: Elsevier BV
Date: 08-2022
Publisher: Wiley
Date: 22-09-2018
DOI: 10.1111/HEX.12614
Publisher: JMIR Publications Inc.
Date: 21-01-2020
DOI: 10.2196/15593
Abstract: Health care systems are increasingly looking to mobile device technologies (mobile health) to improve patient experience and health outcomes. SecondEars is a smartphone app designed to allow patients to audio-record medical consultations to improve recall, understanding, and health care self-management. Novel health interventions such as SecondEars often fail to be implemented post pilot-testing owing to inadequate user experience (UX) assessment, a key component of a comprehensive implementation strategy. This study aimed to pilot the SecondEars app within an active clinical setting to identify factors necessary for optimal implementation. Objectives were to (1) investigate patient UX and acceptability, utility, and satisfaction with the SecondEars app, and (2) understand health professional perspectives on issues, solutions, and strategies for effective implementation of SecondEars. A mixed methods implementation study was employed. Patients were invited to test the app to record consultations with participating oncology health professionals. Follow-up interviews were conducted with all participating patients (or carers) and health professionals, regarding uptake and extent of app use. Responses to the Mobile App Rating Scale (MARS) were also collected. Interviews were analyzed using interpretive descriptive methodology all quantitative data were analyzed descriptively. A total of 24 patients used SecondEars to record consultations with 10 multidisciplinary health professionals. In all, 22 of these patients used SecondEars to listen to all or part of the recording, either alone or with family. All 100% of patient participants reported in the MARS that they would use SecondEars again and recommend it to others. A total of 3 themes were identified from the patient interviews relating to the UX of SecondEars: empowerment, facilitating support in cancer care, and usability. Further, 5 themes were identified from the health professional interviews relating to implementation of SecondEars: changing hospital culture, mitigating medico-legal concerns, improving patient care, communication, and practical implementation solutions. Data collected during pilot testing regarding recording use, UX, and health professional and patient perspectives will be important for designing an effective implementation strategy for SecondEars. Those testing the app found it useful and felt that it could facilitate the benefits of consultation recordings, along with providing patient empowerment and support. Potential issues regarding implementation were discussed, and solutions were generated. Australia and New Zealand Clinical Trials Registry ACTRN12618000730202 www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373915& isClinicalTrial=False
Publisher: Wiley
Date: 12-07-2018
DOI: 10.1002/PON.4789
Abstract: 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. 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. 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 in idual tailoring of the resources should be considered. Patients also found it useful to share ARs with family. 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.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 20-02-2019
Publisher: Springer Science and Business Media LLC
Date: 14-12-2022
DOI: 10.1007/S00520-022-07501-9
Abstract: 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. 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. 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. 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.
No related grants have been discovered for Amelia Hyatt.