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.

No abstract

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.

No abstract