BackgroundReports from royal colleges and organisations such as Public Health England suggest that GPs and nurses should advise patients to switch to electronic cigarettes (e-cigarettes) if they do not want to stop smoking using licensed medication. However, there are no data on what practitioners think, feel, or do about e-cigarettes.AimTo explore practitioners’ perceptions and attitudes towards e-cigarettes, and their experiences of discussing e-cigarettes with patients.Design and settingA qualitative interview study was carried out with semi-structured interviews conducted with nurses and GPs across England in 2017.MethodParticipants were interviewed once either via telephone or face to face. Data were analysed using thematic analysis.ResultsInterviews were conducted with 23 practitioners (eight nurses and 15 GPs). There were three key themes: ambivalence and uncertainty; pragmatism; and responsibility. Many practitioners had uncertainties about the safety and long-term risks of e-cigarettes. Some had ambivalence about their own knowledge and ability to advise on their use, as well as uncertainty about whether to and what to advise patients. Despite this, many sought to provide honesty in consultations by acknowledging these uncertainties about e-cigarettes with patients and taking a pragmatic approach, believing that e-cigarettes were a ‘step in the right direction’. Practitioners wanted advice from healthcare regulators such as the National Institute for Health and Care Excellence to reassure them about the safety of e-cigarettes, practical tools to support the consultation, and to control their use by providing behavioural support programmes for reduction or cessation.ConclusionCurrent dissemination strategies for guidelines are not effective in reaching practitioners, who are offering more cautious advice about e-cigarettes than guidelines suggest is reasonable.

ImportanceGender-affirming care is a key clinical area that can benefit from implementation of patient-reported outcome measures (PROMs). Identifying barriers to and enablers of PROM implementation is needed to develop an evidence-based implementation strategy.ObjectiveTo identify (1) PROMs previously implemented for gender-affirming care and constructs measured, (2) how patients completed PROMs and how results were reported and used, and (3) barriers to and enablers of PROM implementation.Evidence ReviewIn this systematic review, PubMed, Embase, MEDLINE, PsycINFO, CINAHL, and Web of Science were searched from inception to October 25, 2021, and updated on December 16, 2022. Gray literature was searched through gray literature database, online search engine, and targeted website searching. Inclusion criteria were (1) original articles of (2) a formally developed PROM or ad hoc instrument administered for gender-affirming care to (3) patients accessing gender-affirming care. The Critical Appraisal Skills Programme tool was used to evaluate quality of included studies. This review was registered on PROSPERO (CRD42021233080).FindingsIn total, 286 studies were included, representing 85 395 transgender and nonbinary patients from more than 30 countries. A total of 205 different PROMs were used in gender-affirming care. No studies described using an implementation science theory, model, or framework to support PROM deployment. Key barriers to PROM implementation included issues with evidence strength and quality of the PROM, engaging participants, and PROM complexity. Key enablers of PROM implementation included using PROMs validated for gender-affirming care, implementing PROMs able to be deployed online or in person, implementing PROMs that are shorter and reduce patient burden, engaging key stakeholders and participants as part of developing an implementation plan, and organizational climate.Conclusions and RelevanceIn this systematic review of barriers to and enablers of PROM implementation in gender-affirming care, PROM implementation was inconsistent and did not follow evidence-based approaches in implementation science. There was also a lack of patient input in creating implementation strategies, suggesting a need for patient-centered approaches to PROM implementation. Frameworks created from these results can be used to develop evidence-based PROM implementation initiatives for gender-affirming care and have potential generalizability for other clinical areas interested in implementing PROMs.

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Alport syndrome is caused by mutations in the genes COL4A3, COL4A4 or COL4A5 and is characterised by progressive glomerular disease, sensorineural hearing loss and ocular defects. Occurring in less than 1:5000, Alport syndrome is a rare genetic disorder but still accounts for > 1% of the prevalent population receiving renal replacement therapy. There is also increasing awareness about the risk of chronic kidney disease in individuals with heterozygous mutations in Alport syndrome genes. The mainstay of current therapy is the use of angiotensin-converting enzyme inhibitors and angiotensin receptor blockers, yet potential new therapies are now entering clinical trials. The 2017 International Workshop on Alport Syndrome in Glasgow was a pre-conference workshop ahead of the 50th anniversary meeting of the European Society for Pediatric Nephrology. It focussed on updates in clinical practice, genetics and basic science and also incorporated patient perspectives. More than 80 international experts including clinicians, geneticists, researchers from academia and industry, and patient representatives took part in panel discussions and breakout groups. This report summarises the workshop proceedings and the relevant contemporary literature. It highlights the unique clinician, patient and researcher collaborations achieved by regular engagement between the groups.

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IntroductionIncreased demand for Child and Adolescent Mental Health Services (CAMHS), alongside concerns that services should be better commissioned to meet the needs of the most vulnerable, has contributed to a requirement to transform services to improve accessibility, quality of care and health outcomes. Following the submission of government-mandated transformation plans for CAMHS, services in England are changing in how, where and by whom they are delivered. This protocol describes the research methods to be applied to understand CAMHS transformations and evaluate the impact on the use of mental health services, patient care, satisfaction, health outcomes and health resource utilisation costs.Methods and analysisA mixed-methods approach will be taken in an observational retrospective study of CAMHS provided by a large National Health Service (NHS) mental health trust in South-East England (Oxford Health NHS Foundation Trust). Quantitative research will include descriptive analysis of routinely collected data, with difference-in-differences analysis supplemented with propensity score matching performed to assess the impact of CAMHS transformations from 2015 onwards. An economic evaluation will be conducted from a healthcare perspective to provide commissioners with indications of value for money. Qualitative research will include observations of services and interviews with key stakeholders including CAMHS staff, service users and guardians, to help identify mechanisms leading to changes in service delivery, as well as barriers and enabling factors in this phase of transformation.Ethics and disseminationThis project has been registered with NHS Oxford Health Foundation Trust as a service evaluation. Informed consent will be sought from all stakeholders partaking in interviews according to good clinical practice. A local data sharing protocol will govern the transfer of quantitative data. Study findings will be published in professional journals for NHS managers and peer-reviewed scientific journals. They will be discussed in seminars targeting CAMHS providers, managers and commissioners and presented at scientific conferences.

Background: Trans people face multiple barriers within healthcare. Primary care practitioners are key to trans healthcare but they often lack training in, and understanding of trans identities, and healthcare options. Few studies have examined health professionals’ understanding of the barriers that exist in healthcare for trans people. Aim: To map out barriers to providing good quality healthcare to trans and gender diverse people and ways to address them. Design and setting: A qualitative interview study involving 20 health professionals working with trans and gender diverse people. Method: Participants were recruited through purposive and snowball sampling. Data were generated using semi-structured qualitative interviews. A thematic analysis involved coding and categorising data using Nvivo software and further conceptual analysis in which developing themes were identified. Results: The study identified four barrier domains to good quality care for trans and gender diverse people: structural (related to lack of guidelines, long waiting times, shortage of specialist centres), educational (based on lack of training on trans health), cultural and social (reflecting negative attitudes towards trans people) and technical (related to information systems and technology). Conclusion: There is an urgent need to address the barriers trans and gender diverse people face in healthcare. Structural level solutions include health policy, professional education and standards; at the practice level, GPs can act as potential drivers of change in addressing the cultural and technical barriers to better meet the needs of their trans and gender diverse patients.

Background: In many high-income countries, primary care practitioners are the main point of referral for specialist mental health services. In England, Child and Adolescent Mental Health Services (CAMHS) are increasingly adopting a Single Point of Access (SPA) to streamline referrals and introduce self and parent/carer-referrals. This involves a significant shift of responsibility from primary care towards CAMHS who adopt a more active role as gatekeeper for their service. This study evaluates the adoption of a SPA in CAMHS across a large region in England. Methods: We conducted an observational mixed methods study in two CAMHS from January 2018 to March 2019 to evaluate the adoption of a SPA. We collected quantitative data from electronic patient records and qualitative data through ethnographic observation and in-depth interviews of staff and stakeholders with experience of using CAMHS. Additional data on volumes was shared directly from the SPAs and a further snapshot of 1 week's users was collected. Results: A similar SPA model emerged across the two services. Staff were positive about what the model could achieve and access rates grew quickly following awareness-raising activities. Despite the initial focus being on a telephone line, online referrals became the more regularly used referral method. Increased access brought challenges in terms of resourcing, including identifying the right staff for the role of call handlers. A further challenge was to impose consistency on triage decisions, which required structured information collection during the assessment process. Similar to GP referrals, those self-referring via the SPA were mainly from the least deprived areas.