Social Media Promotion of Health Tests With Potential for Overdiagnosis or Overuse: Protocol for a Content Analysis.

BACKGROUND: In recent years, social media have emerged as important spaces for commercial marketing of health tests, which can be used for the screening and diagnosis of otherwise generally healthy people. However, little is known about how health tests are promoted on social media, whether the information provided is accurate and balanced, and if there is transparency around conflicts of interest. OBJECTIVE: This study aims to understand and quantify how social media is being used to discuss or promote health tests with the potential for overdiagnosis or overuse to generally healthy people. METHODS: Content analysis of social media posts on the anti-Mullerian hormone test, whole-body magnetic resonance imaging scan, multicancer early detection, testosterone test, and gut microbe test from influential international social media accounts on Instagram and TikTok. The 5 tests have been identified as having the following criteria: (1) there are evidence-based concerns about overdiagnosis or overuse, (2) there is evidence or concerns that the results of tests do not lead to improved health outcomes for generally healthy people and may cause harm or waste, and (3) the tests are being promoted on social media to generally healthy people. English language text-only posts, images, infographics, articles, recorded videos including reels, and audio-only posts are included. Posts from accounts with <1000 followers as well as stories, live videos, and non-English posts are excluded. Using keywords related to the test, the top posts were searched and screened until there were 100 eligible posts from each platform for each test (total of 1000 posts). Data from the caption, video, and on-screen text are being summarized and extracted into a Microsoft Excel (Microsoft Corporation) spreadsheet and included in the analysis. The analysis will take a combined inductive approach when generating key themes and a deductive approach using a prespecified framework. Quantitative data will be analyzed in Stata SE (version 18.0; Stata Corp). RESULTS: Data on Instagram and TikTok have been searched and screened. Analysis has now commenced. The findings will be disseminated via publications in peer-reviewed international medical journals and will also be presented at national and international conferences in late 2024 and 2025. CONCLUSIONS: This study will contribute to the limited evidence base on the nature of the relationship between social media and the problems of overdiagnosis and overuse of health care services. This understanding is essential to develop strategies to mitigate potential harm and plan solutions, with the aim of helping to protect members of the public from being marketed low-value tests, becoming patients unnecessarily, and taking resources away from genuine needs within the health system. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56899.

Direct-to-consumer tests advertised online in Australia and their implications for medical overuse: systematic online review and a typology of clinical utility.

OBJECTIVES: The objective of this study is to map the range and variety of direct-to-consumer (DTC) tests advertised online in Australia and analyse their potential clinical utility and implications for medical overuse. DESIGN: Systematic online search of DTC test products in Google and Google Shopping. DTC test advertisements data were collected and analysed to develop a typology of potential clinical utility of the tests at population level, assessing their potential benefits and harms using available evidence, informed by concepts of medical overuse. RESULTS: We identified 484 DTC tests (103 unique products), ranging from $A12.99 to $A1947 in cost (mean $A197.83; median $A148.50). Using our typology, we assigned the tests into one of four categories: tests with potential clinical utility (10.7%); tests with limited clinical utility (30.6%); non-evidence-based commercial 'health checks' (41.9%); and tests whose methods and/or target conditions are not recognised by the general medical community (16.7%). Of the products identified, 56% did not state that they offered pretest or post-test consultation, and 51% did not report analytical performance of the test or laboratory accreditation. CONCLUSIONS: This first-in-Australia study shows most DTC tests sold online have low potential clinical utility, with healthy consumers constituting the main target market. Harms may be caused by overdiagnosis, high rates of false positives and treatment decisions led by non-evidence-based tests, as well as financial costs of unnecessary and inappropriate testing. Regulatory mechanisms should demand a higher standard of evidence of clinical utility and efficacy for DTC tests. Better transparency and reporting of health outcomes, and the development of decision-support resources for consumers are needed.

Websites Selling Direct-to-Consumer Anti-Mullerian Hormone Tests.

Importance: The recent provision of direct-to-consumer (DTC) Anti-Mullerian Hormone (AMH) testing in several countries has been contentious, particularly due to concerns about judicious testing and informed consent. Objective: To describe and analyze information on websites that sell DTC AMH tests. Design, Setting, and Participants: Qualitative study including content analysis of text information from websites in multiple countries that sell AMH tests DTC. The top 50 search results from 4 different internet search strings were captured and reviewed for eligibility. Data were extracted in March 2022 and analyzed from April 2022 to July 2023. Main outcomes and measures: Themes and categories were derived from the website content using a conventional inductive approach, with a particular focus on information content, quality and accuracy, as well as the tone and language used. Results: Twenty-seven websites across 7 different countries formed the sample for analysis. Information varied considerably across websites and was organized into 6 overarching categories: (1) whether a test description was included (25 websites [93%]); (2) statements about what the test can do, which included indicating ovarian reserve (26 websites [96%]) and indicating likelihood of conceiving (20 websites [74%]); (3) statements about the usefulness of the test result, which included enabling women to adjust their reproductive timeline (11 websites [41%]) and determining whether egg freezing was a viable option (8 websites [30%]); (4) blood collection method (ie, through a laboratory or an at-home sample); (5) promotion tactics, such as stating the convenience of testing (24 websites [89%]) and using language promoting empowerment and control (7 websites [26%]); and (6) statements about limitations of the test, which included polycystic ovary syndrome falsely inflating AMH levels (13 websites [48%]) and that it cannot accurately predict chances of conceiving (9 websites [33%]). Conclusion and relevance: In this qualitative study including content analysis, most websites selling DTC AMH tests included false and misleading claims which might lead consumers to purchase an AMH test in the belief that it can reliably predict fertility potential and age of menopause. Depending on the test result, this may in turn lead to misplaced anxiety or reassurance about one's fertility and modifications to subsequent conception or contraceptive plans and behavior.

Direct-to-consumer laboratory testing (DTCT): challenges and implications for specialists in laboratory medicine.

In vitro diagnostics (IVD) testing is a powerful tool for medical diagnosis, and patients' safety is guaranteed by a complex system of personnel qualification of the specialist in laboratory medicine, of process control, and legal restrictions in healthcare, most of them under national regulation. Direct-to-consumer laboratory testing (DTCT) is testing ordered by the consumer and performed either by the consumer at home or analysis of self-collected samples in a laboratory. However, since DTCT are not always subject to effective competent authority oversight, DTCT may pose risks to lay persons using and relying on it for healthcare decision-making. Laboratory medicine specialists should be very cautious when new DTCTs are introduced. As qualified professionals, they should feel obliged to warn and educate patients and the public about the risks of inappropriate and harmful DTCT.

Reimagining consumer involvement: Resilient system indicators in the COVID-19 pandemic response in New South Wales, Australia.

BACKGROUND: Reflections on the response to the COVID-19 pandemic often evoke the concept of 'resilience' to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia. METHODS: In-depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self-identified consumer leaders, who worked together in a COVID-19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities. RESULTS: The pause in consumer engagement to support health service decision-making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer-led research and guidelines on pandemic-related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas. CONCLUSION: The response to the COVID-19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self-organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system. PATIENT OR PUBLIC CONTRIBUTION: This project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations.

Direct-to-consumer detection of atrial fibrillation in a smartwatch electrocardiogram: Medical overuse, medicalisation and the experience of consumers.

The Apple Watch Electrocardiogram (ECG) is a digital feature that detects signs of atrial fibrillation (AFib), a heart arrhythmia that can lead to stroke. Unlike AFib detection offered in a clinical setting to patients or those at higher risk, the Apple Watch ECG is a direct-to-consumer (DTC) product marketed to the healthy as a self-performed medical test. The feature is incorporated in the design as one of many applications in a multifunctional smartwatch. The Apple Watch ECG signals the movement of consumer wearables into the domain of medical devices, and the highly contested practice of AFib screening. This article examines how this technology produces new avenues for medical overuse among people who are unlikely to gain clinical benefit, and who as active consumers become medicalised via taking part in disease-specific monitoring. Interviews with Apple Watch ECG consumers suggest their strongly trust in the Apple brand is amplified by the promissory quality of screening and technical innovation. What would otherwise be a costly clinical procedure is condensed into an accessible function in a wearable device. Consequently, AFib screening loses its clinical purpose, and is instead refashioned into a component of healthy lifestyle behaviour. Repeat self-screening becomes 'bundled' with similar health monitoring practices routinised in consumer wearables. Active uptake supports a market for the product and adds to the reputation of the Apple brand such that consumers become complicit in legitimising a medical practice that has limited clinical justification.

Peer support and social network groups among people living with epilepsy: A scoping review.

BACKGROUND: Peer support is a unique connection formed between people who share similar experiences of illness. It is distinct from, but complementary to other forms of support or care provided by family and friends, healthcare professionals, and other service providers. The role of peer support in contributing to the wellbeing and care of people living with epilepsy (PLWE) is increasingly recognized, including via online networks and group therapy. However, little overall synthesis is available to map and conceptualize the different ways peer support contributes to the wellbeing or care of PLWE, or how it occurs via formally and informally organized social network settings. METHODS: A scoping review of peer-reviewed literature published between 1998 and 2021 was conducted using Medline, Psychinfo, Embase, Scopus, and CINAHL databases. Included studies comprised empirical research that involved people with epilepsy as the primary participants; included 'peer social support' in the study question or study setting, and included outcome measures related to peer social support or peer-related groupings. RESULTS: A total of 17 articles were included in the review. The functions of peer support for PLWE can be described as either emotional or instrumental. Emotional peer support includes a sense of empathy and encouragement gained from another person with a shared experience of illness, which can help to improve confidence for those challenged by isolation and stigma. Instrumental peer support refers to the more practical and tangible support provided by peers about treatment and support services, which can improve self-management and clarify misinformation. The mechanisms by which peer support and peer social networks materialize includes face-to-face meetings, online group gatherings, and telephone calls. As well as through organized channels, peer support can be fostered incidentally through, for example, research participation, or in clinical settings. Barriers to PLWE receiving opportunities for peer support include the perceived stigma of living with epilepsy, the high cost of transportation, or poor access to the internet to reach and meet others; enablers include the anonymity afforded by online forums and perceived trust in one's peers or forum organizers. CONCLUSIONS: This nuanced conceptualization of the different types of peer support and peer support networks, as well as the variety of barriers and enablers of peer support for PLWE, will serve to inform more effectively designed clinical care practices and service delivery tailored to the needs of PLWE. This review will inform future research in peer support as an important and emerging area of investigation.

Conducting Qualitative Research Online: Challenges and Solutions.

What ways of thinking and concrete strategies can assist qualitative health researchers to transition their research practice to online environments? We propose that researchers should foreground inclusion when designing online qualitative research, and suggest ethical, technological and social adaptations required to move data collection online. Existing research shows that this move can aid in meeting recruitment targets, but can also reduce the richness of the data generated, as well as how much participants enjoy participating, and the ability to achieve consensus in groups. Mindful and consultative choices are required to prevent these problems. To adapt to ethical challenges, researchers should especially consider participant privacy, and ways to build rapport and show appropriate care for participants, including protocols for dealing with distress or disengagement, managing data, and supporting consent. To adapt to technological challenges, research plans should choose between online modalities and platforms based on a clear understanding of their particular affordances and the implications of these. Finally, successful research in virtual social environments requires new protocols for engagement before data collection, attention to group numbers and dynamics, altered moderator teams and roles, and new logistical tasks for researchers. The increasing centrality of online environments to everyday life is driving traditional qualitative research methods to online environments and generating new qualitative research methods that respond to the particularities of online worlds. With strong design principles and attention to ethical, technical and social challenges, online methods can make a significant contribution to qualitative research in health.

Terminology Change for Small Low-Risk Papillary Thyroid Cancer As a Response to Overtreatment: Results from Three Australian Community Juries.

Background: The majority of small papillary thyroid cancers (sPTCs) are treated surgically, rather than by active surveillance. Patient and clinician preference for surgery may be partially driven by the use of cancer terminology. Some experts propose that changing terminology would better communicate the indolent nature of sPTCs and improve uptake of active surveillance. Others argue that terminology that includes "cancer" correctly reflects the biological nature of these tumors. The views of informed lay publics can provide value-based perspectives on complex issues and guide policy discussions. Methods: We recruited 40 people for three community juries, held in Sydney, Wodonga, and Cairns, Australia. Participants were of diverse backgrounds and ages, recruited through random digit dialing and a topic-blinded social media strategy. Juries were informed about thyroid cancer, overdiagnosis, and overtreatment, and heard arguments for and against terminology change before deliberation. The deliberative process in Jury 1 led to a refinement of jury charge, the updated version that was then used in Juries 2 and 3. Results: Jury 1 favored no terminology change, and Juries 2 and 3 were divided on the topic. Key reasons for opposing terminology change included a strong desire to retain terminology that aligns with the pathological definition of cancer, and to avoid even a minimal risk of harm that could arise if patients became complacent in follow-up. Key reasons to support terminology change included a desire to reduce psychological distress, stigma, and discrimination associated with a cancer diagnosis, and an argument that terminology change may be a more effective trigger for health system reform compared with other options. The juries unanimously recommended community education and health system reforms to reduce harms of overtreatment, and expressed an expectation that clinicians and researchers reach agreement on clinical guidelines to promote better uptake of active surveillance. Conclusions: The conceptual tension between a pathological and an outcome-based understanding of cancer was apparent in deliberation. This highlights an ongoing challenge for those advocating changing disease terminology. Regardless of action on terminology, jurors shared a strong expectation that practical changes would be made to respond to the harms of overtreatment.

Insights into culturally appropriate latent tuberculosis infection (LTBI) screening in NSW: perspectives of Indian and Pakistani migrants.

OBJECTIVE: Latent tuberculosis (LTBI) case-finding and treatment are a focus of TB elimination in Australia. We sought the perspectives of migrants from two high-burden countries likely to be targeted by this strategy. METHODS: To understand perceptions of migrant groups in Australia on LTBI screening, 28 in-depth interviews were conducted with Indian and Pakistani community members recruited purposively through local organisations in the Illawarra region, New South Wales. Drawing on local TB policy, data collected qualitatively was analysed using framework methodologies. RESULTS: Australia's immigration system prioritises migrants of higher socioeconomic status. Participants supported elimination but perceived TB as a disease of the poor and not relevant to them. Lack of understanding of LTBI and sensitivity to being 'targeted' are further barriers to screening participation. CONCLUSION: Information provision and targeting rationale are an essential preamble to LTBI screening. Migration appears to modify cultural attitudes to TB, but not significantly. Despite less stigma surrounding TB in Australian contexts, testing privacy and confidentiality, and limiting public identification of specific groups remain important to program acceptability. Implications for public health: Progress towards TB elimination can be enhanced by consulting with targeted communities, using existing networks for communication and service provision; emphasising prevention benefits.

Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia.

OBJECTIVES: This mixed-method feasibility study conducted in New South Wales (NSW), Australia, aimed to explore clinical practices around the identification of patients with refractory epilepsy and referral from primary care to Tertiary Epilepsy Centers. The perceptions of general practitioners, neurologists, and adults living with refractory epilepsy were considered. METHODS: Fifty-two data collection events were achieved through 22 semi-structured interviews with six neurologists and 12 adults who currently have, or have had refractory epilepsy, and four family members, 10 clinical observations of patient consultations and 20 surveys with general practitioners. A thematic analysis was conducted on the qualitative data alongside assessment of observational fieldnotes and survey data. FINDINGS: Two main themes emerged: 1) Patient healthcare pathways and care experiences highlighted the complex and deeply contextualized experiences of both patients and healthcare professionals, from first identification of people's seizures, in primary and community care settings, to referral to Tertiary Epilepsy Centers, shedding light on a fragmented, nonstandardized referral process, influenced by both individual and shared-care practices. 2) Factors impacting referrals and patient pathways indicated that onward referral to a Tertiary Epilepsy Center is affected by the knowledge, or the lack thereof, of healthcare professionals regarding treatment options. Barriers include limited person-centered care, shared decision-making, and refractory epilepsy education for healthcare professionals, which can delay patients' disease identification and can hinder speedy referral pathways and processes, in Australia for up to 17 years. In addition, person-centered communication around care pathways is affected by relationships between clinicians, patients, and family members. CONCLUSION: This study has identified a noticeable lack of standardized care across epilepsy-related healthcare sectors, which recognizes a need for developing and implementing clearer epilepsy-related guidelines and Continuing Professional Development in the primary and community care settings. This, however, requires greater collaboration and commitment in the primary, community, and tertiary care sectors to address the ongoing misconceptions around professional roles and responsibilities to optimize shared-care practices. Ultimately, prioritizing person-centered care on both patients' and professionals' agendas, in order to improve satisfaction with care experiences of people living with complex epilepsy.

Enhancing quality of life among epilepsy surgery patients: Interlinking multiple social and relational determinants.

BACKGROUND: Achieving seizure control through resective brain surgery is a major predictor of improved quality of life (QOL) among people with refractory (drug-resistant) epilepsy. Nevertheless, QOL is a comprehensive and dynamic construct, consisting of broad dimensions such as physical health, psychosocial well-being, level of independence, social relationships, and beyond. This study highlights the interlinkage and complementarity of these diverse dimensions, and how in practice, patients, clinicians, and others in a social support system can actively promote QOL among surgery patients. METHOD: Twenty-one qualitative in-depth interviews with patients with refractory epilepsy who are either undergoing presurgical assessment or postsurgery follow-up were conducted, to consider their perspective on QOL in relation to their experience of illness and surgical treatment. Data were thematically analyzed, resulting in three key thematic findings. RESULTS: (1) A myriad of QOL dimensions are highly interrelated and interdependent with mutual 'spin-off' effects: Uncontrolled seizures impacted beyond physical and cognitive health, disrupting important social identities such as being successful parents, spouses, and career professionals. The desire for good clinical outcomes from surgery was justified against the need to mitigate these social and personal concerns. (2) In postsurgery care, there were complementary effects of clinical interventions and social factors on patients' QOL. Psychosocial well-being was supported by a combination of improved physical health, self-confidence, psychological interventions, and social support from employers and educators who were sensitive to patients' specialized needs. (3) Engaging in education, employment, and government services influenced not only socioeconomic well-being, but also a sense of social inclusion. Advocacy made on behalf of patients by clinicians and family members has helped to better manage patients' eligibility for social services provision. CONCLUSION: Quality of life is achieved through a comprehensive and interactive social process, and not simply an outcome measure of clinical treatment. The responses and interactions of many others within the patients' life and treatment process, including family members, clinicians, and social service workers, can culminate to influence QOL, highlighting the importance of a relational and social determinants perspective in patient care.

Comprehensive Researcher Achievement Model (CRAM): a framework for measuring researcher achievement, impact and influence derived from a systematic literature review of metrics and models.

OBJECTIVES: Effective researcher assessment is key to decisions about funding allocations, promotion and tenure. We aimed to identify what is known about methods for assessing researcher achievements, leading to a new composite assessment model. DESIGN: We systematically reviewed the literature via the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols framework. DATA SOURCES: All Web of Science databases (including Core Collection, MEDLINE and BIOSIS Citation Index) to the end of 2017. ELIGIBILITY CRITERIA: (1) English language, (2) published in the last 10 years (2007-2017), (3) full text was available and (4) the article discussed an approach to the assessment of an individual researcher's achievements. DATA EXTRACTION AND SYNTHESIS: Articles were allocated among four pairs of reviewers for screening, with each pair randomly assigned 5% of their allocation to review concurrently against inclusion criteria. Inter-rater reliability was assessed using Cohen's Kappa (ĸ). The ĸ statistic showed agreement ranging from moderate to almost perfect (0.4848-0.9039). Following screening, selected articles underwent full-text review and bias was assessed. RESULTS: Four hundred and seventy-eight articles were included in the final review. Established approaches developed prior to our inclusion period (eg, citations and outputs, h-index and journal impact factor) remained dominant in the literature and in practice. New bibliometric methods and models emerged in the last 10 years including: measures based on PageRank algorithms or 'altmetric' data, methods to apply peer judgement and techniques to assign values to publication quantity and quality. Each assessment method tended to prioritise certain aspects of achievement over others. CONCLUSIONS: All metrics and models focus on an element or elements at the expense of others. A new composite design, the Comprehensive Researcher Achievement Model (CRAM), is presented, which supersedes past anachronistic models. The CRAM is modifiable to a range of applications.

Fit for purpose? OrganisationaL prOdUctivity and woRkforce wellbeIng in workSpaces in Hospital (FLOURISH): a multimethod qualitative study protocol.

INTRODUCTION: Workspaces are socially constructed environments where social relationships are produced, reproduced, challenged and transformed. Their primary function is to support high-quality service delivery to the benefit of 'patients'. They are also settings where employees can work effectively, in a safe and healthy environment, delivering a high-quality service according to a 'Work-As-Done' rather than a 'Work-As-Imagined' model. However, hospital design is currently based on a managerial understanding of work accomplishments, often falling short of understanding what is actually happening on the ground. Furthermore, the research landscape lacks rigorous assessment of these complex sociological and health research concepts, either within the Australian context where this protocol is set, or internationally.This paper describes an innovative protocol aimed at examining healthcare employees' and organisations' concerns and beliefs in workspace design. It outlines research investigating the effect of workspace use on productivity, health and safety and worker satisfaction, to clarify Work-As-Done, while creating healthy and more fulfilling environments. METHODS: This is a proof-of-concept study, taking place between June 2018 and April 2019, employing a multimethod, qualitative approach for in-depth assessment of one Australian, private, university hospital environment, using as its 'case' the Gastroenterology Surgical Unit. It involves (1) observations and informal interviews (shadowing) with employees and patients as they traverse hospital spaces and (2) visual data of spatial use. Fieldnotes will be analysed thematically, and visual data analysed using a predefined schematic framework (a visual taxonomy). Overarching themes and categories will be considered corroboratively, mixing visual and textual data to build an iterative and dynamic picture. ETHICS AND DISSEMINATION: Ethical considerations will be discussed, while approval has been granted by the University's Human Research Ethics Committee (HREC/5201800282), along with Governance approved by the Health Clinical Research Executive (CRG2018005). Study results will be disseminated through publications, research conferences and public reports.

Promoting faster pathways to surgery: a clinical audit of patients with refractory epilepsy.

BACKGROUND: Individuals with epilepsy who cannot be adequately controlled with anti-epileptic drugs, refractory epilepsy, may be suitable for surgical treatment following detailed assessment. This is a complex process and there are concerns over delays in referring refractory epilepsy patients for surgery and subsequent treatment. The aim of this study was to explore the different patient pathways, referral and surgical timeframes, and surgical and medical treatment options for refractory epilepsy patients referred to two Tertiary Epilepsy Clinics in New South Wales, Australia. METHODS: Clinical records were reviewed for 50 patients attending the two clinics, in two large teaching hospitals (25 in Clinic 1; 25 in Clinic 2. A purpose-designed audit tool collected detailed aspects of outpatient consultations and treatment. Patients with refractory epilepsy with their first appointment in 2014 were reviewed for up to six visits until the end of 2016. Data collection included: patient demographics, type of epilepsy, drug management, and assessment for surgery. Outcomes included: decisions regarding surgical and/or medical management, and seizure status following surgery. Patient-reported outcome measures to assess anxiety and depression were collected in Clinic 1 only. RESULTS: Patient mean age was 38.3 years (SD 13.4), the mean years since diagnosis was 17.3 years (SD 9.8), and 88.0% of patients had a main diagnosis of focal epilepsy. Patients were taking an average of 2.3 (SD 0.9) anti-epileptic drugs at the first clinic visit. A total of 17 (34.0%) patients were referred to the surgical team and 11 (22.0%) underwent a neuro-surgical procedure. The average waiting time between visit 1 to surgical referral was 38.8 weeks (SD 25.1), and between visit 1 and the first post-operative visit was 55.8 weeks (SD 25.0). CONCLUSION: The findings confirm international data showing significant waiting times between diagnosis of epilepsy and referral to specialist clinics for surgical assessment and highlight different approaches in each clinic in terms of visit numbers and recorded activities. A standardised pathway and data collection, including patient-reported outcome measures, would provide better evidence for whether promoting earlier referral and assessment for surgery improves the lives of this disease group.

Determinants of health and wellbeing in refractory epilepsy and surgery: The Patient Reported, ImpleMentation sciEnce (PRIME) model.

This paper offers a new way of understanding the course of a chronic, neurological condition through a comprehensive model of patient-reported determinants of health and wellbeing: The Patient Reported ImpleMentation sciEnce (PRIME) model is the first model of its kind to be based on patient-driven insights for the design and implementation of initiatives that could improve tertiary, primary, and community healthcare services for patients with refractory epilepsy, and has broad implications for other disorders; PRIME focuses on: patient-reported determinants of health and wellbeing, pathways through care, gaps in treatment and other system delays, patient need and expectation, and barriers and facilitators to high-quality care provision; PRIME highlights that in the context of refractory epilepsy, patients value appropriate, clear, and speedy referrals from primary care practitioners and community neurologists to specialist healthcare professionals based in tertiary epilepsy centers. Many patients also want to share in decisions around treatment and care, and gain a greater understanding of their debilitating disease, so as to find ways to self-manage their illness more effectively and plan for the future. Here, PRIME is presented using refractory epilepsy as the exemplar case, while the model remains flexible, suitable for adaptation to other settings, patient populations, and conditions; PRIME comprises six critical levels: 1) The Individual Patient Model; 2) The Patient Relationships Model; 3) The Patient Care Pathways Model; 4) The Patient Transitions Model; 5) The Pre- and Postintervention Model; and 6) The Comprehensive Patient Model. Each level is dealt with in detail, while Levels 5 and 6 are presented in terms of where the gaps lie in our current knowledge, in particular in relation to patients' journeys through healthcare, system intersections, and individuals adaptive behavior following resective surgery, as well as others' views of the disease, such as family members.

Smoking Cessation Care in Cardiothoracic Surgery: A Qualitative Study Exploring the Views of Australian Clinicians.

BACKGROUND: Smoking cessation (SC) care in the perioperative period of cardiothoracic surgery is important to reduce surgical risk and help achieve long-term smoking abstinence in patients who continue to smoke. The implementation of clinical guidelines for SC care in the perioperative period has proved challenging, yet little is known of what influences the inter-disciplinary team involved in the cardiothoracic area. This qualitative study explored the views of the clinicians involved in perioperative period of cardiothoracic surgery in Australia on their SC advice and support. METHODS: Semi-structured interviews were conducted with 52 cardiothoracic surgeons, anaesthetists, nurses and physiotherapists in three public tertiary referral hospitals and three private hospitals in New South Wales (NSW). Data was thematically analysed, and categorised using the Behaviour Change Wheel "Capabilities, Opportunity, Motivation & Behaviour" (COM-B) analysis framework to understand the factors that influence clinicians' views and perceived abilities to provide SC care. RESULTS: Barriers and facilitators to providing SC care were identified. The most commonly identified barriers in capability were the lack of knowledge, training and institutional engagement. Opportunity was hindered by lack of time, hospital support and resources, yet facilitated by the existence of a collaborative, multidisciplinary team and the ability to follow-up patients long term. In motivation, clinicians' attitudes and experience negatively influenced the initiation of the cessation conversation, while intrinsic attributes of empathy and positivity were drivers to provide SC care. CONCLUSIONS: Clinicians' views, together with inadequate SC training, resources and engagement to implement clinical guidelines, contribute to inconsistent SC care. There is a need for hospitals to provide adequate SC resources and training to all clinicians to improve SC care to cardiothoracic surgery patients throughout the perioperative period.

Electronic Cigarettes and Smoking Cessation in the Perioperative Period of Cardiothoracic Surgery: Views of Australian Clinicians.

For patients who smoke, electronic cigarettes may offer a pathway to achieve tobacco abstinence and reduce the risk of postoperative complications. Clinicians have a pivotal role in supporting smoking cessation by patients with lung cancer and coronary artery disease throughout the perioperative period of cardiothoracic surgery. However, the views of Australian cardiothoracic clinicians on electronic cigarettes and smoking cessation are unknown. Semi-structured interviews were conducted with 52 cardiothoracic surgeons, anaesthetists, nurses and physiotherapists in six hospitals in Sydney and thematically analysed. Clinicians' knowledge about electronic cigarettes and the regulatory environment surrounding them was limited. Clinicians believed that: electronic cigarettes, though unlikely to be safe, were safer than tobacco cigarettes; electronic cigarettes may have a harm reduction role in public health; and electronic cigarettes were a potential smoking cessation tool for the extraordinary circumstances of surgery. The professional role of a clinician and their views about electronic cigarettes as a perioperative smoking cessation aid had an influence on future clinician-patient interactions. Electronic cigarette use is increasing in Australia and clinicians are likely to receive more frequent questions about electronic cigarettes as a cessation aid. Stronger guidance for clinicians is needed on the topic of electronic cigarettes and cardiothoracic surgery.

Relational autonomy in breast diseases care: a qualitative study of contextual and social conditions of patients' capacity for decision-making.

BACKGROUND: A relational approach to autonomy refers to the way in which social conditions and relationships shape a person's self-identity and capacity in decision-making. This article provides an empirical account of how treatment choices for women undergoing breast diseases care are fostered within the dynamics of their relationships with clinicians, family members, and other aspects of their social environment. METHODS: This qualitative study recruited ten women undergoing treatment at a breast programme, and eight clinicians supporting their care, in a private teaching hospital in New South Wales, Australia. Fourteen patient-clinician consultation observations and 17 semi-structured interviews were conducted. Schema analysis of interview transcripts were undertaken by a team of researchers and corroborated by observational fieldnotes. RESULTS: Relational identities of patients influenced the rationale for treatment decision-making. Patients drew on supportive resources from family and medical advice from clinicians to progress with treatment goals. While clinicians held much social power over patients as the medical experts, patients highlighted the need for clinicians to earn their trust through demonstrated professionalism. Information exchange created a communicative space for clinicians and patients to negotiate shared values, promoting greater patient ownership of treatment decisions. As treatment progressed, patients' personal experiences of illness and treatment became a source of self-reflection, with a transformative impact on self-confidence and assertiveness. CONCLUSION: Patients' confidence and self-trust can be fostered by opportunities for communicative engagement and self-reflection over the course of treatment in breast disease, and better integration of their self-identity and social values in treatment decisions.

Leading up to saying "yes": A qualitative study on the experience of patients with refractory epilepsy regarding presurgical investigation for resective surgery.

OBJECTIVES: Adult patients with refractory epilepsy who are potential candidates for resective surgery undergo a period of presurgical investigation in tertiary epilepsy centers (TECs), where they engage extensively with healthcare professionals and receive a range of treatment-related information. This qualitative study aimed to examine the experiences of adult patients with refractory epilepsy leading up to and during presurgical investigation and how their perceptions of resective surgery are shaped. METHODS: In-depth interviews with 12 patients and six epilepsy specialist clinicians and 12 observations of routine patient-clinician consultations took place at two TECs in Sydney, Australia. Data were thematically analyzed via group work. RESULTS: Patients reflected on prior experiences of poor seizure control and inadequate antiepileptic drug management and a lack of clarity about their condition before referral to tertiary care. Poor continuity of care and disrupted care transitions affected patients from regional locations. Tertiary referral increased engagement with personalized information about refractory epilepsy, which intensified during presurgical assessments with additional hospital visits and consultations. Experiential information, such as testimonials of other patients, influenced perceptions of surgery and fostered more trust and confidence towards healthcare professionals. CONCLUSION: Qualitative inquiry detailed multifaceted effects of information on patients' overall treatment trajectory and experience of healthcare. Earlier patient identification for surgical assessments should be accompanied by access to good quality information at primary and community care levels and strengthened referral processes.