“Choosing the main character”: healthcare professionals’ attitudes towards counselling patients about risk disclosure to relatives in the era of mainstream cancer genetic testing

Study question How is possibility of failure and potential need for multiple cycles discussed with patients during the first or repeat IVF/ICSI treatment consultation? Summary answer Health Care Professionals plan treatment on a cycle-by-cycle basis because it is the normative way to plan treatment, but patients see advantages in multi-cycle planning. What is known already Many patients need more than one round of IVF/ICSI stimulation to achieve their parenthood goals. A recent study has found around 60% of patients to be willing to plan for multiple cycles of treatment. However, it is not clear how patients are informed fully about the high possibility of treatment failure and the subsequent need for multiple cycles during their treatment planning consultations. Study design, size, duration Qualitative focus groups with health care professionals (HCP) patient advocates (April 2020) and patients (July and August 2020, respectively). Patients were eligible if they had had a consultation to start a first/repeat stimulated IVF/ICSI cycle in the eight weeks prior to participation, were aged 18 or older (upper age limit of 42 years for women) and fluent in English. Eligible Health HCPs and patient advocates were those employed at a fertility clinic or charity, respectively. Participants/materials, setting, methods HCP, patient advocate and patient focus group topic guides started with general questions about fertility consultations and progressed to discuss if and how the possibility of treatment failure and need for multiple cycles was introduced and discussed, and then preferences regarding planning IVF/ICSI on a multi-cycle rather than a single cycle basis. Focus groups were recorded, transcribed and analysed using framework analysis which allowed examination of shared, unique and incongruent thematic content across participant groups. Main results and the role of chance Twelve HCPs, 2 patient advocates and 11 patients participated in seven semi-structured online focus group discussions. Framework analysis revealed 52 codes (e.g., possibility of failure tentatively introduced; discussion of multiple cycles dependent on clinical/patient benchmarks) abstracted into 17 higher-level categories (e.g., Failure is a sensitive topic to approach; IVF treatment failure is the norm). Synthesis of categories revealed four themes and one meta theme The meta theme showed planning treatment on a cycle-by-cycle basis was the norm. This meta-theme was supported by four themes: (1) ‘culture of communication’ that dictated benchmarks (e.g., clinic, national live birth rate) and definition of key concepts (’complete’ cycle) that underpinned divergence between clinics; (2) ‘HCP-patient dynamics’ indexing degree of shared decision-making, advance preparation and involvement of partners in planning; (3) ‘tempering optimism’ that described tailoring, balancing and emotion management in giving personal chances of success; and (4) ‘transitioning to multi-cycle planning’ which identified worries of multi-cycle planning (e.g., need to learn from failure). Limitations, reasons for caution The majority of patients were women from private fertility clinics with no previous treatment experience recruited from social media websites, mainly associated with patient support groups. Similarly, the majority of HCPs were women from private fertility clinics. Informative comparisons across treatment stage, gender and funding source were therefore not possible. Wider implications of the findings: HCPs are hesitant towards multi-cycle planning. However, patients show openness, suggesting a cultural shift from the single cycle norm of planning IVF/ICSI may be possible. If adopted by clinics, HCPs patients and fertility organisations, multi-cycle planning could encourage patients to create informed treatment expectations and plans prior to treatment engagemen. Trial registration number MS200059_001

SummaryA lack of national guidelines in some countries and lack ofconsensus amongst those that do exist in others is problematic.Specifically, poor and inconsistent advice on initiating and opti-mising therapeutic interventions is a barrier to improving out-comes. While European guidelines can help to fill the gap incountries without national guidelines, their role should primar-ily be to strengthen and harmonise existing guidelines, and toprovide a framework for the development of new nationalguidelines. They therefore need to lead the provision of advicethat is not given in existing guidelines. Limited awareness ofguidelines and increasing pressures on patient consultation can Figure 5 The concept of cumulative life course impairment(CLCI) in psoriasis. 22 CLCI results from an interaction betweenthe burden of stigmatisation, physical and psychological co-mor-bidities; and coping strategies and external factors. Significantimpairment may occur in patients with ineffective coping strate-gies and limited social support, even if they have a small burden.This impairment may be less in patients with effective copingstrategies and strong social support networks, even if the bur-den is large. (Figure adapted from Kimball 2010.)

BackgroundIreland’s Model of Care for the Management of Overweight and Obesity outlines a plan for treating adolescent and child obesity (CO). However, engagement with key stakeholders is required to support its implementation and improve health services.AimThis study aims to map the perceived barriers and facilitators related to CO management across healthcare settings, professional disciplines, and regions in the Republic of Ireland (ROI).Materials and methodsAn online cross-sectional survey of registered healthcare professionals (HPs), designed to adhere to the Consolidated Framework for Implementation Research (CFIR), was co-developed by a project team consisting of researchers, healthcare professionals, and patient advocates. The survey was pilot tested with project stakeholders and distributed online to professional groups and via a social media campaign, between September 2021 and May 2022, using “SurveyMonkey.” Data were summarised using descriptive statistics and thematic analyses. Themes were mapped to the CFIR framework to identify the type of implementation gaps that exist for treating obesity within the current health and social care system.ResultsA total of 184 HPs completed the survey including nurses (18%), physicians (14%), health and social care professionals (60%), and other HPs (8%). The majority were female (91%), among which 54% reported conducting growth monitoring with a third (32.6%) giving a diagnosis of paediatric/adolescent obesity as part of their clinical practice. Nearly half (49%) of the HPs reported having the resources needed for clinical assessment. However, 31.5% of the HPs reported having enough “time,” and almost 10% of the HPs reported having no/limited access to suitable anthropometric measurement tools. Most HPs did not conduct obesity-related clinical assessments beyond growth assessment, and 61% reported having no paediatric obesity training. CFIR mapping identified several facilitators and barriers including time for clinical encounters, suitable materials and equipment, adequate training, perceived professional competency and self-efficacy, human equality and child-centredness, relative priorities, local attitudes, referral protocols, and long waiting times.ConclusionsThe findings provide actionable information to guide the implementation of the Model of Care for the Management of Overweight and Obesity in Ireland. Survey findings will now inform a qualitative study to explore implementation barriers and facilitators and prioritise actions to improve child and adolescent obesity management.

Many patients are confronted with low anterior resection syndrome after rectal surgery. The perspectives of both healthcare professionals and patients on the impact of bowel problems may differ. This study aimed to explore experiences of healthcare professionals on how to provide, organise and optimise care for patients with low anterior resection syndrome from an interprofessional perspective. An explorative qualitative design was used. Healthcare professionals were recruited in October 2018 in one general teaching hospital and one university hospital. Twenty one healthcare professionals from different professions caring for patients with low anterior resection syndrome were included in three focus group interviews. Healthcare professionals confirmed a lack of focus on patients who are confronted with low anterior resection syndrome and stated a need for a standardised approach of care. Additionally, three levels for care optimization emerged from the data: information before surgery with strong emphasis on the timing of informing, counselling of patients when confronted with low anterior resection syndrome and organisation of care. Healthcare professionals find it important to adopt the moment and amount of information to the coping mechanism and timing of the trajectory. Counselling and follow-up of patients with LARS should be organised proactively and should not remain restricted to pharmacological and nutritional advice. A possible strategy is to develop and implement late effects nurse-led clinics coordinated by the clinical nurse specialist.

Study question How is possibility of failure and potential need for multiple cycles discussed with patients during the first or repeat IVF/ICSI treatment consultation? Summary answer Health Care Professionals plan treatment on a cycle-by-cycle basis because it is the normative way to plan treatment, but patients see advantages in multi-cycle planning What is known already Many patients need more than one round of IVF/ICSI stimulation to achieve their parenthood goals. A recent study has found around 60% of patients to be willing to plan for multiple cycles of treatment. However, it is not clear how patients are informed fully about the high possibility of treatment failure and the subsequent need for multiple cycles during their treatment planning consultations Study design, size, duration Qualitative focus groups with health care professionals (HCP) patient advocates (April 2020) and patients (July and August 2020, respectively). Patients were eligible if they had had a consultation to start a first/repeat stimulated IVF/ICSI cycle in the eight weeks prior to participation, were aged 18 or older (upper age limit of 42 years for women) and fluent in English. Eligible Health HCPs and patient advocates were those employed at a fertility clinic or charity, respectively Participants/materials, setting, methods HCP, patient advocate and patient focus group topic guides started with general questions about fertility consultations and progressed to discuss if and how the possibility of treatment failure and need for multiple cycles was introduced and discussed, and then preferences regarding planning IVF/ICSI on a multi-cycle rather than a single cycle basis. Focus groups were recorded, transcribed and analysed using framework analysis which allowed examination of shared, unique and incongruent thematic content across participant groups Main results and the role of chance Twelve HCPs, 2 patient advocates and 11 patients participated in seven semi-structured online focus group discussions. Framework analysis revealed 52 codes (e.g., possibility of failure tentatively introduced; discussion of multiple cycles dependent on clinical/patient benchmarks) abstracted into 17 higher-level categories (e.g., Failure is a sensitive topic to approach; IVF treatment failure is the norm). Synthesis of categories revealed four themes and one meta theme The meta theme showed planning treatment on a cycle-by-cycle basis was the norm. This meta-theme was supported by four themes: (1) ‘culture of communication’ that dictated benchmarks (e.g., clinic, national live birth rate) and definition of key concepts (‘complete’ cycle) that underpinned divergence between clinics; (2) ‘HCP-patient dynamics’ indexing degree of shared decision-making, advance preparation and involvement of partners in planning; (3) ‘tempering optimism’ that described tailoring, balancing and emotion management in giving personal chances of success; and (4) ‘transitioning to multi-cycle planning’ which identified worries of multi-cycle planning (e.g., need to learn from failure). Limitations, reasons for caution The majority of patients were women from private fertility clinics with no previous treatment experience recruited from social media websites, mainly associated with patient support groups. Similarly, the majority of HCPs were women from private fertility clinics. Informative comparisons across treatment stage, gender and funding source were therefore not possible Wider implications of the findings HCPs are hesitant towards multi-cycle planning. However, patients show openness, suggesting a cultural shift from the single cycle norm of planning IVF/ICSI may be possible. If adopted by clinics, HCPs patients and fertility organisations, multi-cycle planning could encourage patients to create informed treatment expectations and plans prior to treatment engagement Trial registration number MS200059_001

<h3>Context:</h3> People with persistent musculoskeletal (MSK) pain or rheumatoid arthritis (RA) with multimorbidity experience significant treatment burden. We examine patient and health care professional (HCP) perspectives on the capacity of patients to self-manage and of the system to provide treatment. <h3>Objectives</h3> To derive a taxonomy of factors that 1) affect the capacity of those living with persistent musculoskeletal pain/RA to self-manage and 2) increase or decrease a HCP’s capacity to treat multimorbid patients with persistent MSK pain/RA. <h3>Study Design and Analysis:</h3> Qualitative interviews; analysed using a conceptual framework underpinned by Burden of Treatment Theory (BOTT). BOTT has been used in patients to explore the balance between ‘work’ e.g. tasks of self-care given to patients by HCPs, and ‘capacity’ e.g. ability to perform tasks. <h3>Setting and Population:</h3> Maximum variation sample: 80 people with RA or MSK pain; 40 HCPs (primary/secondary care) in Scotland. <h3>Results:</h3> Patients reported variation in capacity of HCPs to care for them: lack of communication between specialities and lack of knowledge of patients’ wider health issues caused frustration. Factors increasing patient capacity: personal attributes/skills; supportive personal/professional networks; provision of appropriate local services; financial resources. Factors decreasing patient capacity: lack of understanding of ‘invisible’ conditions; life workload, particularly caring responsibilities; financial constraints. Focussing on relational/communication BOTT domains, we created a taxonomy of factors affecting HCPs’ ability to provide care for RA/MSK patients. Factors increasing HCP capacity: well-defined routes for primary-secondary care communication; close spatial setting (e.g. shared clinics allowing personal relationships to develop); facilitating informal interaction between HCPs; personal relationships facilitating interaction; greater knowledge of the patient, professional confidence and ability to act as patient advocate; greater personal tenacity. Factors decreasing HCP capacity: ill-defined communication routes; poor quality referral letters; junior staff: newer HCPs may lack professional confidence, with fewer contacts and limited system knowledge. <h3>Conclusions:</h3> Providing care for patients with multimorbidity and persistent MSK pain/RA requires effective interaction between HCPs. Our taxonomy of factors identifies points for intervention to inform research, practice and policy.

Objectives:To evaluate health care professionals’ knowledge on warfarin interactions with drugs and herbs.Methods:A self-administered questionnaire was developed to assess health care professionals’ knowledge on warfarin interactions with drug and herb. Respondents were asked to classify 15 drugs that may effect on warfarin action as “enhance”, “inhibit “, “no effect”. The study sample involved health care professionals (physicians, pharmacists and nurses) from king Salman hospital, Saudi Arabia.Results:About 92.2% of health care professionals identified warfarin interactions with aspirin, 4.4% for warfarin and fluoxetine. Warfarin and cardiac agents (atenolol) was correctly identified by 11.1% of respondents. In warfarin –herb interactions section, the majority of respondents (66.7%) identified the interaction between green tea and warfarin. Approximately one-third of respondents (n=33) correctly classified warfarin interactions with cardamom. No significant difference was found between the health care professionals (p=0.49) for warfarin-drug interactions knowledge score and p= 0.52 for warfarin- herb interactions knowledge score.Conclusion:This study suggests that health care professionals’ knowledge of warfarin- drug-herb interactions was inadequate. Therefore, health care professionals should receive more education programs about drug-drug/herb interactions to provide appropriate patient counseling and optimal therapeutic outcomes.

Headache disorders comprise the three most prevalent medical disorders globally and contribute almost 20% to the total burden of neurologic illness. Although the experience of a recurrent headache disorder tends to be highly individualized, patient preferences tend to be a low priority in guidelines for the management of patients with headache. In September 2017, the first Global Patient Advocacy Summit was convened, bringing together patients, patient advocates, patient advocacy organizations, healthcare professionals, pharmaceutical manufacturers, scientists, and regulatory agencies to advance issues of importance to patients affected by headache worldwide. Presentations and discussion covered multiple issues, such as improving access to appropriate medical care; incorporating the insights of independent patient advocates and advocacy organizations; leveraging the insights, experience and influence of leading health and neurological organizations; and raising awareness of the role of regulatory agencies in disease advocacy. Attendees agreed that it is important to understand and promote the global, regional, and local interests of people with headache disorders, as well as challenge the pervasive stigma associated with headache. They also agreed that those with severe, recurrent, or disabling headache disorders should have reliable access to competent medical care; healthcare professionals should have access to adequate training in Headache Medicine; global benchmarks should be established for accurate diagnosis and the use of evidence-based treatments in patients with headache; and that information is needed about consultation, diagnosis, and treatment of headache, particularly in regard to patient preferences. Based on the group's consensus around these issues, a series of statements was developed, and they are collectively presented herein as the Vancouver Declaration on Global Headache Patient Advocacy 2018.

Kidney Health for All: Bridging the Gap in Kidney Health Education and Literacy

Study question Are educational materials to promote the routine implementation of PCUFT at clinics acceptable and feasible for healthcare professionals (HCPs) and patients? Summary answer HCPs and patients expressed high demand for PCUFT and welcomed educational materials to support this endeavour but expressed different views about how to offer it. What is known already Nine in ten patients want to discuss the possibility of fertility treatment being unsuccessful as part of routine care offered at clinics, but only 35% of patients report having this opportunity. Offering PCUFT, defined as assistance and guidance on the implications of treatment being unsuccessful, could promote patients’ positive adjustment to this loss. However, it is unknown if and how PCUFT varies across countries and HCPs’ and patients’ perceived barriers towards its implementation. The present international qualitative study investigated HCPs’ and patients' willingness and preferences about using research-informed educational materials to support the implementation of PCUFT at fertility clinics. Study design, size, duration Seven Focus Groups were conducted with HCPs (March 2022) from Europe (Belgium/Finland/Germany/Italy/Portugal/Spain/UK) and South America (Argentina/Brazil/Chile), and patients and patient advocates (March-December 2022) also from Europe (UK/Portugal) and South America (Argentina/Chile). Participants were invited to participate through fertility charities/associations and social media. Eligibility criteria were being aged 18 or older, working at a fertility clinic (HCPs) or charity (advocates), or waiting to initiate or undergoing fertility treatment or having completed treatment within six months (patients). Participants/materials, setting, methods Semi-structured script following Bowen’s (2009) framework. Section one evaluated demand and acceptability of implementing PCUFT. Section two introduced a proposal of research-informed educational materials to promote PCUFT (MyJourney webpages - for HCPs: practical advice on introducing PCUFT and addressing patients’ FAQs; for patients: information and support for unsuccessful treatment in video, text, FAQs). Questions elicited views on the materials’ acceptability, practicality and adaptation. Focus groups were recorded, transcribed verbatim, and data analysed with Framework Analysis. Main results and the role of chance Thirty-four patients, seven advocates, 15 HCPs participated. Patients were 38 years old and trying to conceive for around three years, most were female(91.18%) and childless(73.53%). HCPs were mostly psychologists(40.00%) or physicians(33.33%) in the field for around 22 years. Framework analysis generated four themes and one meta-theme, reflecting a need for a normative shift towards having PCUFT as part of routine care. Themes were: (1) need for better collaboration and support, strongly endorsed by patients, who perceived PCUFT would enable them to better cope with treatment, make more long-term informed-decisions, and feel supported, particularly after treatment; (2) current PCUFT approaches are almost non-existent/non-optimal. Patients and HCPs agreed PCUFT is not offered but expressed different views about its appropriateness. HCPs considered PCUFT more appropriate at later treatment stages and expressed lack resources and know-how to implement it; (3) PCUFT requires an empathic, hopeful, multidisciplinary approach. While patients want to receive in-depth medical advice about their full treatment options, potential outcomes and support to prepare for (unsuccessful) treatment, most HCPs envisioned present-focused information-sharing and support tailored to patients’ treatment stage; and (4) high demand for educational materials to promote PUCFT. MyJourney package prototype is beneficial but needs improvements to be acceptable and feasible. Limitations, reasons for caution Non-probability sample. Although the patients’ sample was heterogeneous (including heterosexual and homosexual couples; from private and public clinics), patients were primarily white, well-educated, employed, and childless women, limiting the generalisation of results and comparisons across gender. Wider implications of the findings HCPs and patients agree PCUFT is needed and beneficial, but HCPs’ will need reassurance about the right timing and support on appropriate ways to implement it given its sensitivity and perceived potential adverse effects. Educational materials, including the MyJourney package, are seen as added value to promote a cultural shift. Trial registration number Not applicable

Cerebrovascular diseases, such as transient ischaemic attack and stroke, are mainly caused by behavioural and metabolic risk factors. Effective patient counselling can address these risk factors and reduce the burden of stroke. We aimed to describe the facilitators, barriers and possible solutions to improve the quality of counselling in patients with cerebrovascular diseases using a descriptive, qualitative approach. Semi-structured face-to-face interviews were conducted with 26 healthcare professionals at a single university hospital in Finland between August 2021 and March 2022. The data were analysed using deductive content analysis. The healthcare professionals identified facilitators, barriers and possible solutions to support the quality of counselling in five main categories: (1) background factors, (2) resources, (3) implementation, (4) sufficiency and (5) effects of counselling, and seven generic categories. To improve the quality of counselling, new digital counselling solutions need to be developed. Solutions should be high-quality, consider the special needs of patients with cerebrovascular diseases, ease the process of information exchange between stakeholders and facilitate the workflow of healthcare professionals. Patients' access to health-related information, availability of electronic devices, patients' eHealth literacy skills and healthcare professionals' counselling skills should be supported to reduce the burden of stroke.

BackgroundThe CDC estimates that 400,000 Black women would benefit from PrEP but only 1% obtain a prescription for it in the US. Ensuring equitable access requires expanding delivery outside of infectious disease clinics and equipping healthcare professionals (HCPs) with strategies to support Black women’s PrEP use. EBONI is a phase 4 gender-concordant, implementation science trial evaluating the delivery of CAB LA, a new PrEP modality, to Black cisgender and transgender women in 15 US women’s health, primary care, and infectious disease sites. We present changes in HCPs’ perceptions of identifying, counseling, and supporting CAB LA use in Black women after four months of study implementation.MethodsShifts from baseline (BL) to Month 4 (M4) in HCPs’ appropriateness, acceptability, feasibility and patient identification, counseling and adherence were assessed via surveys completed by a longitudinal sample of HCPs (N=65). At M4, a cross-sectional sample HCPs (N=69) evaluated usefulness of patient support tools. Descriptive statistics are reported.ResultsTable 1 presents demographics. HCPs reported high levels of appropriateness, acceptability, and feasibility of CAB LA (BL mean scale scores ≥4.6; M4 mean scale scores ≥4.3). Concerns decreased between BL and M4 for the perceived factors related to patient identification, counseling, and adherence (Table 2). HCPs reported feeling “extremely positive”/ “positive” about implementing CAB LA into care at BL (90.8%) and M4 (87.7%). At M4, of HCPs (50%) who completed the PrEP Education Training for Black Women training, most “completely agreed”/“agreed” the training would be useful to their practice (88%), helped them address patient HIV concerns effectively (84%), and improved their likelihood of providing PrEP (84%). Among HCPs (68.8%) that used a shared decision tool, most completely agreed/agreed the tool was easy to implement (82%) and supported conversations with Black women (82%).ConclusionHCPs across women’s health, primary care, and infectious disease clinics maintained high appropriateness, acceptability, and feasibility after four months of integrating CAB LA into care. Effective tools exist to support HCPs in identifying, counseling, and supporting CAB LA use in Black women.DisclosuresDylan M. Baker, MBBS, ViiV Healthcare: Grant/Research Support Katherine L. Nelson, PhD, MPH, GSK: Stocks/Bonds (Public Company)|ViiV Healthcare: Employee Yolanda Lawson, MD, Gilead: Honoraria|Gilead: Meeting and travel support|National Medical Association: Board Member|ViiV Healthcare: Advisor/Consultant|ViiV Healthcare: Grant/Research Support Alftan Dyson, PharmD, GSK: Stocks/Bonds (Public Company)|ViiV Healthcare: Employee Deanna Merrill, PharmD, MBA, AAHIVP, GSK: Stocks/Bonds (Public Company)|ViiV Healthcare: Employee Lisa Petty, MT(ASCP), GSK: Stocks/Bonds (Public Company)|ViiV Healthcare: Employee Peter Jeffery, BSc, PgDip, GSK: Complimentary Worker Kenneth Sutton, MA, GSK: Stocks/Bonds (Public Company)|ViiV Healthcare: Employee Kimberley Brown, PharmD, GSK: Stocks/Bonds (Public Company)|ViiV Healthcare: Employee Maggie Czarnogorski, MD MPH, GSK: Stocks/Bonds (Public Company)|ViiV Healthcare: Employee Nanlesta Pilgrim, PhD, GSK: Stocks/Bonds (Public Company)|ViiV Healthcare: Employee

Knowledge and awareness of adverse drug reactions and pharmacovigilance practices among healthcare professionals in Al-Madinah Al-Munawwarah, Kingdom of Saudi Arabia

Ethics and the Economics of Long-Term Care

In Switzerland, the practice of lay right-to-die societies (RTDS) organizing assisted suicide (AS) is tolerated by the state. Patient counseling and accompaniment into the dying process is overtaken by RTDS lay members, while the role of physicians may be restricted to prescribing the mortal dose after a more or less rigorous exploration of the patient’s decisional capacity. However, Swiss health care facilities and professionals are committed to providing suicide prevention. Despite the liberal attitude in society, the legitimacy of organized AS is ethically questioned. How can health professionals be supported in their moral uncertainty when confronted with patient wishes for suicide? As an approach towards reaching this objective, two ethics policies were developed at the Basel University Hospital to offer orientation in addressing twofold and divergent duties: handling requests for AS and caring for patients with suicidal thoughts or after a suicide attempt. According to the Swiss tradition of “consultation” (“Vernehmlassung”), controversial views were acknowledged in the interdisciplinary policy development processes. Both institutional policies mirror the clash of values and suggest consistent ways to meet the challenges: respect and tolerance regarding a patient’s wish for AS on the one hand, and the determination to offer help and prevent harm by practicing suicide prevention on the other. Given the legal framework lacking specific norms for the practice of RTDS, orientation is sought in ethical guidelines. The comparison between the previous and newly revised guideline of the Swiss Academy of Medical Sciences reveals, in regard to AS, a shift from the medical criterion, end of life is near, to a patient rights focus, i.e., decisional capacity, consistent with the law. Future experience will show whether and how this change will be integrated into clinical practice. In this process, institutional ethics policies may—in addition to the law, national guidelines, or medical standards—be helpful in addressing conflicting duties at the bedside. The article offers an interdisciplinary theoretical reflection with practical illustration.