How do guideline developers identify, incorporate and report patient preferences? An international cross-sectional survey.

BACKGROUND: Guidelines based on patient preferences differ from those developed solely by clinicians and may promote patient adherence to guideline recommendations. There is scant evidence on how to develop patient-informed guidelines. This study aimed to describe how guideline developers identify, incorporate and report patient preferences. METHODS: We employed a descriptive cross-sectional survey design. Eligible organizations were non-profit agencies who developed at least one guideline in the past five years and had considered patient preferences in guideline development. We identified developers through the Guidelines International Network and publicly-available guideline repositories, administered the survey online, and used summary statistics to report results. RESULTS: The response rate was 18.3% (52/284). Respondents included professional societies, and government, academic, charitable and healthcare delivery organizations from 18 countries with at least 1 to ≥6 years of experience generating patient-informed guidelines. Organizations most frequently identified preferences through patient panelists (86.5%) and published research (84.6%). Most organizations (48, 92.3%) used multiple approaches to identify preferences (median 3, range 1 to 5). Most often, organizations used preferences to generate recommendations (82.7%) or establish guideline questions (73.1%). Few organizations explicitly reported preferences; instead, they implicitly embedded preferences in guideline recommendations (82.7%), questions (73.1%), or point-of-care communication tools (61.5%). Most developers had little capacity to generate patient-informed guidelines. Few offered training to patients (30.8%), or had dedicated funding (28.9%), managers (9.6%) or staff (9.6%). Respondents identified numerous barriers to identifying preferences. They also identified processes, resources and clinician- and patient-strategies that can facilitate the development of patient-informed guidelines. In contrast to identifying preferences, developers noted few approaches for, or barriers or facilitators of incorporating or reporting preferences. CONCLUSIONS: Developers emphasized the need for knowledge on how to identify, incorporate and report patient preferences in guidelines. In particular, how to use patient preferences to formulate recommendations, and transparently report patient preferences and the influence of preferences on guidelines is unknown. Still, insights from responding developers may help others who may be struggling to generate guidelines informed by patient preferences.

Quality of DCIS information on the internet: a content analysis.

PURPOSE: Women with ductal carcinoma in situ (DCIS) experience lingering confusion and anxiety, and may use the Internet for supplemental information. This study assessed the content and quality of DCIS information on the Internet. METHODS: We searched Google for English-language, publicly available DCIS information tools published from 2010 to current by non-profit organizations. We summarized tool characteristics, DCIS labels, and information important to women with DCIS corresponding to domains of a patient-centred care (PCC) framework. Tool quality was appraised with the DISCERN instrument. RESULTS: Of 39 tools included, most were plain language summaries published since 2016. Tools employed a median of 2.0 labels (range 1.0 to 5.0) for DCIS, most frequently non-invasive breast cancer (29, 74.4%), abnormal cells (14, 35.9%), pre-cancer (14, 35.9%), and early form of breast cancer (13, 33.3%). Tools addressed a median of 4.0 (range 2.0 to 5.0) PCC domains. Few tools contained content in the domains of fostering the relationship (30.8%), addressing emotions (41.0%), or follow-up (41.0%); 74.4% noted the risk of progression or recurrence but provided vague details. Tools were assessed as high (25.6%), moderate (48.7%), and low (25.6%) quality. CONCLUSIONS: Few DCIS information tools available to women on the Internet meet quality criteria for consumer health information or address concerns of importance to women with DCIS. By identifying a range of poorly defined terms used to label DCIS, and specific content domains that were lacking, this study identified how existing tools could be improved, and identified higher-quality tools that clinicians can use when discussing DCIS with patients.

Ophthalmic manifestations of myelin oligodendrocyte glycoprotein-IgG-associated disorder other than optic neuritis: a systematic review.

BACKGROUND/AIMS: Optic neuritis (ON) is the primary ophthalmic manifestation of myelin oligodendrocyte glycoprotein-IgG-associated disorder (MOGAD), but numerous reports have expanded the visual manifestations of this condition. The goal of this study was to synthesise the extensive literature on this topic to help ophthalmologists understand when testing for MOG-IgG should be considered. METHOD: A systematic review of the English-language literature was performed according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and searches were conducted using Ovid MEDLINE (from January 1, 1948 to April 1, 2020) and Ovid EMBASE (from January 1, 1947 to April 1, 2020). Inclusion criteria included studies describing non-isolated ON ophthalmic manifestations where cell-based assays were used for the detection of MOG antibodies. RESULTS: Fifty-one articles representing 62 patients with a median age of 32.0 (range 2-65), female gender (51%) and follow-up of 20.0 months (range: 1-240) were included. Twenty-nine patients had non-isolated ON afferent visual manifestations: uveitis, peripheral ulcerative keratitis, acute macular neuroretinopathy, neuroretinitis, venous stasis retinopathy, large preretinal macular haemorrhage, orbital inflammatory syndrome, orbital apex syndrome, optic perineuritis, papilloedema and homonymous visual field defects. Incomplete recovery of ON was associated with a case of Leber's hereditary optic neuropathy. Efferent ophthalmic manifestations included cranial neuropathies, internuclear ophthalmoplegia, central nystagmus, saccadic intrusions and ocular flutter. Cranial nerve involvement was secondary to enhancement of the cisternal portion or brainstem involvement. All included cases were treated with corticosteroids with 31% of cases requiring additional immunosuppressive therapy. CONCLUSIONS: MOGAD has been associated with various afferent and efferent ophthalmic manifestations apart from isolated ON. Awareness of these findings may result in earlier diagnosis and treatment.