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ObjectivesClinician well-being has been recognised as an important pillar of healthcare. However, research mainly addresses mitigating the negative aspects of stress or burnout, rather than enabling positive aspects. With the added strain of a pandemic, identifying how best to maintain and support the well-being, satisfaction and flourishing of general practitioners (GPs) is now more important than ever.DesignSystematic review.Data sourcesWe searched MEDLINE, PsycINFO, Embase, CINAHL and Scopus from 2000 to 2020.Study selectionIntervention studies with more than 50% GPs in the sample evaluating self-reported well-being, satisfaction and related positive outcomes were included. The Cochrane Risk of Bias 2 tool was applied.ResultsWe retrieved 14 792 records, 94 studies underwent full-text review. We included 19 studies in total. Six randomised controlled trials, three non-randomised, controlled trials, eight non-controlled studies of individual or organisational interventions with a total of 1141 participants. There were two quasi-experimental articles evaluating health system policy change. Quantitative and qualitative positive outcomes were extracted and analysed. Individual mindfulness interventions were the most common (k=9) with medium to large within-group (0.37–1.05) and between-group (0.5–1.5) effect sizes for mindfulness outcomes, and small-to-medium effect sizes for other positive outcomes including resilience, compassion and empathy. Studies assessing other intervention foci or other positive outcomes (including well-being, satisfaction) were of limited size and quality.ConclusionsThere is remarkably little evidence on how to improve GPs well-being beyond using mindfulness interventions, particularly for interventions addressing organisational or system factors. This was further undermined by inconsistent reporting, and overall high risk of bias. We need to conduct research in this space with the same rigour with which we approach clinical intervention studies in patients.PROSPERO registration numberCRD42020164699.Funding sourceDr Diana Naehrig is funded through the Raymond Seidler PhD scholarship.

Study objectives To systematically determine subjective and objective outcome measures used to measure efficacy of narcolepsy interventions in randomized controlled trials (RCTs) in adults and children and assess psychometric properties of patient-reported outcome measures (PROMs) used. Methods We searched bibliographical databases and clinical trial registries for narcolepsy RCTs and extracted objective and subjective outcome measures. If PROMs were used, we searched for psychometric studies conducted in a narcolepsy population using bibliographical databases and appraised using Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines. Results 80 different outcome measures were used across 100 RCTs. Epworth Sleepiness Scale (ESS) (n=49) and Maintenance of Wakefulness Test (n=47) were the most frequently used outcome measures. We found nineteen validation studies of ten PROMs in narcolepsy populations. There was limited evidence for validity or responsiveness of the ESS; yet sufficient reliability (pooled ICC: 0.81–0.87). Narcolepsy Severity Scale (NSS) had sufficient reliability (pooled ICC: 0.71–0.92) and both adult and pediatric versions had sufficient discriminant validity (treated/untreated). Content validity was only evaluated in pediatric populations for ESS-CHAD and NSS-P and rated inconclusive. Quality of evidence of the psychometric studies for all scales ranged from very low to low. Conclusions Although recognized by regulatory bodies and widely used as primary outcome measures in trials, there is surprisingly little evidence for validity, reliability and responsiveness of PROMs frequently used to assess treatment efficacy in narcolepsy. The field needs to establish patient-centred minimal clinically important difference for the PROMs used in these trials.

Introduction The parliamentary inquiry into sleep health represents one of few platforms accessible to patients and their family/carers to contribute to the development of healthcare policy alongside other key stakeholder groups (i.e. healthcare professionals, organisations). Balancing diverse and sometimes divergent views of various stakeholder groups can be challenging, thus we set out to explore how patients and family/carer submissions were interpreted by the inquiry and translated into health policy recommendations. Methods Written submissions made to the Parliamentary Inquiry into Sleep Health Awareness in Australia 2018 by self-identified patients or family/carers with narcolepsy (n=13) were extracted and thematically analysed using the Framework Approach. Each submission was systematically coded, with emergent themes evaluated against the final policy recommendations made by the inquiry. Results We identified three major themes: 1) ‘Pathways to Treatment & Care’ regarding concerns around lack of healthcare and research resource allocation for narcolepsy; 2) ‘Help-seeking Experience’ related to barriers to help-seeking and accessing care; 3) ‘Patient and Family/Carers’ Lived Experience of Disease’ which encompassed the tangible effects narcolepsy has on the daily lives of patients and family/carers. Discussion While patients and their family/carers prioritised issues that affected their daily lives (i.e. mental health sequela, workplace accommodations), policy recommendations focused on healthcare infrastructure, funding and engagement. Increased transparency, developing processes to balance stakeholder priorities and improving accessibility to stakeholder engagement are needed if patient and family/carer needs are to be met, and for healthcare policy to remain targeted and trusted by the public.

Introduction Treatment of the sleep disorder narcolepsy is primarily symptomatic. With limited population data and insufficient systems to capture patient data, a greater emphasis has been placed on the patient perspective in determining satisfaction and treatment success in clinical settings. While Randomised Controlled Trials (RCTs) are considered the gold standard when determining treatment effectiveness, how effectiveness is measured in a narcolepsy population remains unknown. Therefore, we aimed to explore the outcome measures used in narcolepsy RCTs, and further evaluate the adequacy of any self-reported outcome measures used. Methods Electronic databases (MEDLINE, EMBASE, CINAHL, SCOPUS, PSYCHINFO) and clinicaltrials.gov were searched in April 2020, with primary and secondary outcomes extracted from eligible studies. Self-reported outcome measures used at least once as a primary outcome measure were further explored, with validation studies of these systematically searched for (using the above databases) and analysed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) Risk of Bias tool. Results We identified 82 published RCTs involving patients with narcolepsy, of which 35 objective and 46 subjective measures were used. Of these, the Maintenance of Wakefulness Test (n=29), Epworth Sleepiness Scale (ESS) (n=14) and Multiple Sleep Latency Test (n=9) were the most frequently selected primary outcome measures. While our analysis of self-reported outcome measures is ongoing, preliminary results suggest that few have been adequately validated in a narcolepsy-specific population. Discussion Our preliminary results identify a high level of heterogeneity between outcome measures used in RCTs, thus difficult to draw conclusions and compare interventions.