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Background: A woman and girl centred, rights-based approach to health care is critical to achieving sexual and reproductive health. However, women with female genital mutilation in high-income countries have been found to receive sub-optimal care. This study examined documents guiding clinicians in health and community service settings in English-speaking high-income countries to identify approaches to ensure quality women and girl-centred care for those with or at risk of female genital mutilation. Method: We undertook a scoping review using the integrative model of patient-centredness to identify principles, enablers, and activities to facilitate woman and girl-centred care interactions. We developed an inclusion criterion to identify documents such as guidance statements and tools and technical guidelines, procedural documents and clinical practice guidelines. We searched the databases and websites of health professional associations, ministries of health, hospitals, national, state and local government and non-government organisations working in female genital mutilation in the United Kingdom, Ireland, Canada, The United States, New Zealand, and Australia. The Appraisal of Guidelines for Research and Evaluation tool was used to appraise screened documents. Findings: One-hundred and twenty-four documents were included in this scoping review; 88 were developed in the United Kingdom, 20 in Australia, nine in the United States, three in Canada, two in New Zealand and two in Ireland. The focus of documents from the United Kingdom on multi-professional safeguarding (62), while those retrieved from Australia, Canada, Ireland, New Zealand and the US focused on clinical practice. Twelve percent of the included documents contained references to all principles of patient-centred care, and only one document spoke to all principles, enablers and activities. Conclusion: This study demonstrates the need to improve the female genital mutilation-related guidance provided to professionals to care for and protect women and girls. Professionals need to involve women and girls with or at risk of female genital mutilation in the co-design of guidelines and tools and evaluation of them and the co-production of health care. Plain Language Summary: High-quality health care for women and girls should be provided by health workers who are respectful and caring. Health workers should also work with others as a team and help women and girls make their own decisions about their health care. This approach is called patient-centred care. Female genital mutilation (FGM) is a cultural practice associated with poor health outcomes. Women who have experienced FGM have not always received quality health care. We studied the guidance and tools to help health workers provide care to women and girls with or at risk of FGM. This study aimed to understand how health workers are supported to provide woman and girl-centred health care in these documents. We searched for these documents on the websites of health professional associations, government health departments and organisations working in FGM in the United Kingdom, Ireland, Canada, The United States, New Zealand, and Australia. The documents were analysed using a tool that described all the important areas needed to provide patient-centred health care. Of the 124 documents, we found that only 12% contained information about all aspects of patient-centred care. Only one document had details about all the areas that are part of patient-centred care. This study shows that we need to improve the FGM-related guidance provided to health workers to care for and protect women and girls. There is a need for health workers to involve women and girls with or at risk of FGM in designing guidelines and tools and evaluating them to these documents best fit their needs. [ABSTRACT FROM AUTHOR]

Background: The Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV., Methods: We conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; > 0.7 acceptable), and test-retest reliability (Intra Class Correlation Coefficient; > 0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity)., Results: Three hundred fifty nine participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test-retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19-25 out of 100), followed by the presence (MDC95% range: 37-54) and episodic scales (MDC95% range:44-76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed., Conclusions: The EDQ possesses internal consistency reliability, construct validity, and test-retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV., (© 2024. The Author(s).)

Background: The etiology and pathophysiology of sarcoidosis remains unclear, with epidemiologic studies limited by its relatively low prevalence. The internet has prompted patients to seek information about medical diagnoses online; Google Trends provides access to an anonymized version of this data, which has a new role in epidemiology. We hypothesize that there is seasonal variation in the relative search interest of sarcoidosis, which would suggest seasonal variation in the incidence of sarcoidosis., Methods: Google Trends was used to assess the relative search volume from 2010 to 2020 for "sarcoidosis" and "sarcoid" in 7 countries. ANOVA with multiple comparisons was performed to compare the mean relative search volume by month and by season for each country, with a p-value less than 0.05 indicating statistical significance., Results: Our analysis revealed a significant seasonal variation in search popularity in 4 of the 7 countries and in the Northern Hemispheric countries combined. Direct comparison showed search terms to be more popular in spring, specifically March & April, than in the winter. Southern Hemisphere data was not statistically significant but showed a trend towards a nadir in December and a peak in September and October., Conclusions: Overall, these findings suggest seasonal variation with a possible peak in spring and nadir in winter. This supports the hypothesis that sarcoidosis has seasonal variation and is more commonly diagnosed in spring, but more evidence is needed to support this, as well as investigation into the pathophysiology of sarcoidosis to explain this phenomenon., (© 2021. The Author(s).)