Lessons from the COVID-19 pandemic to improve the health and social care and wellbeing of minoritised ethnic groups with chronic conditions or impairments: protocol for the mixed methods intersectional asset-based study CICADA

BACKGROUND: The pandemic has inequitably impacted the experiences of people living with ill health/impairments or from minoritised ethnic groups across all areas of life. Given possible parallels in inequities for disabled people and people from minoritised ethnic backgrounds, their existence before the pandemic and increase since, and the discriminations that each group faces, our interest is in understanding the interplay between being disabled AND being from a minoritised ethnic group. OBJECTIVE: The overarching aim of the CICADA project, building on this understanding, is to improve pandemic and longer-term support networks and access to and experiences of care, services and resources for these under-served groups, both during the pandemic and longer term, reducing inequities and enhancing social, health and wellbeing outcomes. METHODS: This mixed methods study involves three 'sweeps' of a new UK survey, secondary analyses of existing cohort and panel surveys, a rapid scoping review, a more granular review, and qualitative insights from over 200 semi-structured interviews including social network/map/photo elicitation methods, and two subsequent sets of remote participatory research workshops. Separate stakeholder co-creation meetings, running through the study, will develop analyses and outputs. Our longitudinal study design enables us to explore significant relationships between variables in the survey data we collect, and also changes in variables with time, including consideration of varying pandemic contexts. The qualitative data will provide more granular detail. We will take a strengths and assets-based approach, underpinned by the social model of disability and by intersectional considerations, to challenge discrimination. Our exploration of the social determinants of health and wellbeing is framed by the social ecological model. RESULTS: The CICADA project was funded by the Health and Social Care Delivery Research (HSDR) Programme of the National Institute for Health and Care Research (NIHR) in March 2021 and began in May 2021. Further work within the project (84 interviews) was commissioned in March 2022, focussing on mental health specifically in North-East England, Greater Manchester and the North-West Coast. Data collection began in August 2021, with the last participants due to be recruited in September 2022. As of January 2022, 5,792 survey respondents and 227 interviewees had provided data. From April 2022, the time of article submission, we will recruit participants for the sub-study and wave 2 of the surveys and qualitative work. We expect results to be published by winter 2022. CONCLUSIONS: In studying the experiences of disabled people with impairments and those living with chronic conditions who come from certain minoritised ethnic groups, we are aiming for transformative research to improve their health and wellbeing. CLINICALTRIAL: INTERNATIONAL REGISTERED REPORT: DERR1-10.2196/38361

Clinical autonomic nervous system laboratories in Europe: a joint survey of the European Academy of Neurology and the European Federation of Autonomic Societies

© 2022 The Authors. European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.Background and purpose: Disorders of the autonomic nervous system (ANS) are common conditions, but it is unclear whether access to ANS healthcare provision is homogeneous across European countries. The aim of this study was to identify neurology-driven or interdisciplinary clinical ANS laboratories in Europe, describe their characteristics and explore regional differences. Methods: We contacted the European national ANS and neurological societies, as well as members of our professional network, to identify clinical ANS laboratories in each country and invite them to answer a web-based survey. Results: We identified 84 laboratories in 22 countries and 46 (55%) answered the survey. All laboratories perform cardiovascular autonomic function tests, and 83% also perform sweat tests. Testing for catecholamines and autoantibodies are performed in 63% and 56% of laboratories, and epidermal nerve fiber density analysis in 63%. Each laboratory is staffed by a median of two consultants, one resident, one technician and one nurse. The median (interquartile range [IQR]) number of head-up tilt tests/laboratory/year is 105 (49-251). Reflex syncope and neurogenic orthostatic hypotension are the most frequently diagnosed cardiovascular ANS disorders. Thirty-five centers (76%) have an ANS outpatient clinic, with a median (IQR) of 200 (100-360) outpatient visits/year; 42 centers (91%) also offer inpatient care (median 20 [IQR 4-110] inpatient stays/year). Forty-one laboratories (89%) are involved in research activities. We observed a significant difference in the geographical distribution of ANS services among European regions: 11 out of 12 countries from North/West Europe have at least one ANS laboratory versus 11 out of 21 from South/East/Greater Europe (p = 0.021). Conclusions: This survey highlights disparities in the availability of healthcare services for people with ANS disorders across European countries, stressing the need for improved access to specialized care in South, East and Greater Europe.info:eu-repo/semantics/publishedVersio

EFAS/EAN survey on the influence of the COVID-19 pandemic on European clinical autonomic education and research

© The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.Purpose: To understand the influence of the coronavirus disease 2019 (COVID-19) pandemic on clinical autonomic education and research in Europe. Methods: We invited 84 European autonomic centers to complete an online survey, recorded the pre-pandemic-to-pandemic percentage of junior participants in the annual congresses of the European Federation of Autonomic Societies (EFAS) and European Academy of Neurology (EAN) and the pre-pandemic-to-pandemic number of PubMed publications on neurological disorders. Results: Forty-six centers answered the survey (55%). Twenty-nine centers were involved in clinical autonomic education and experienced pandemic-related didactic interruptions for 9 (5; 9) months. Ninety percent (n = 26/29) of autonomic educational centers reported a negative impact of the COVID-19 pandemic on education quality, and 93% (n = 27/29) established e-learning models. Both the 2020 joint EAN-EFAS virtual congress and the 2021 (virtual) and 2022 (hybrid) EFAS and EAN congresses marked higher percentages of junior participants than in 2019. Forty-one respondents (89%) were autonomic researchers, and 29 of them reported pandemic-related trial interruptions for 5 (2; 9) months. Since the pandemic begin, almost half of the respondents had less time for scientific writing. Likewise, the number of PubMed publications on autonomic topics showed the smallest increase compared with other neurological fields in 2020-2021 and the highest drop in 2022. Autonomic research centers that amended their trial protocols for telemedicine (38%, n = 16/41) maintained higher clinical caseloads during the first pandemic year. Conclusions: The COVID-19 pandemic had a substantial negative impact on European clinical autonomic education and research. At the same time, it promoted digitalization, favoring more equitable access to autonomic education and improved trial design.info:eu-repo/semantics/publishedVersio

DataSheet1_Patients’ knowledge, preferences, and perspectives about data protection and data control: an exploratory survey.DOCX

Background: In the European Union, the General Data Protection Regulation (GDPR) plays a central role in the complex health research legal framework. It aims to protect the fundamental right to the protection of individuals’ personal data, while allowing the free movement of such data. However, it has been criticized for challenging the conduct of research. Existing scholarship has paid little attention to the experiences and views of the patient community. The aim of the study was to investigate 1) the awareness and knowledge of patients, carers, and members of patient organizations about the General Data Protection Regulation, 2) their experience with exercising data subject rights, and 3) their understanding of the notion of “data control” and preferences towards various data control tools.Methods: An online survey was disseminated between December 2022 and March 2023. Quantitative data was analyzed descriptively and inferentially. Answers to open-ended questions were analyzed using the thematic analysis method.Results: In total, 220 individuals from 28 European countries participated. The majority were patients (77%). Most participants had previously heard about the GDPR (90%) but had not exercised any of their data subject rights. Individual data control tools appeared to be marginally more important than collective tools. The willingness of participants to share personal data with data altruism organizations increased if patient representatives would be involved in the decision-making processes of such organizations.Conclusion: The results highlighted the importance of providing in-depth education about data protection. Although participants showed a slight preference towards individual control tools, the reflection based on existing scholarship identified that individual control holds risks that could be mitigated through carefully operationalized collective tools. The discussion of results was used to provide a critical view into the proposed European Health Data Space, which has yet to find a productive balance between individual control and allowing the reuse of personal data for research.</p

Development and validation of the symptom burden questionnaire for long covid (SBQ-LC):Rasch analysis

OBJECTIVE: To describe the development and validation of a novel patient reported outcome measure for symptom burden from long covid, the symptom burden questionnaire for long covid (SBQ-LC). DESIGN: Multiphase, prospective mixed methods study. SETTING: Remote data collection and social media channels in the United Kingdom, 14 April to 1 August 2021. PARTICIPANTS: 13 adults (aged ≥18 years) with self-reported long covid and 10 clinicians evaluated content validity. 274 adults with long covid field tested the draft questionnaire. MAIN OUTCOME MEASURES: Published systematic reviews informed development of SBQ-LC’s conceptual framework and initial item pool. Thematic analysis of transcripts from cognitive debriefing interviews and online clinician surveys established content validity. Consensus discussions with the patient and public involvement group of the Therapies for Long COVID in non-hospitalised individuals: From symptoms, patient reported outcomes and immunology to targeted therapies (TLC Study) confirmed face validity. Rasch analysis of field test data guided item and scale refinement and provided initial evidence of the SBQ-LC’s measurement properties. RESULTS: SBQ-LC (version 1.0) is a modular instrument measuring patient reported outcomes and is composed of 17 independent scales with promising psychometric properties. Respondents rate their symptom burden during the past seven days using a dichotomous response or 4 point rating scale. Each scale provides coverage of a different symptom domain and returns a summed raw score that can be transformed to a linear (0-100) score. Higher scores represent higher symptom burden. After rating scale refinement and item reduction, all scales satisfied the Rasch model requirements for unidimensionality (principal component analysis of residuals: first residual contrast values 0.4). Across the 17 scales, person reliability ranged from 0.34 to 0.87, person separation ranged from 0.71 to 2.56, item separation ranged from 1.34 to 13.86, and internal consistency reliability (Cronbach’s alpha) ranged from 0.56 to 0.91. CONCLUSIONS: SBQ-LC (version 1.0) is a comprehensive patient reported outcome instrument developed using modern psychometric methods. It measures symptoms of long covid important to people with lived experience of the condition and may be used to evaluate the impact of interventions and inform best practice in clinical management

Clinical autonomic nervous system laboratories in Europe

Background and purpose: Disorders of the autonomic nervous system (ANS) are common conditions, but it is unclear whether access to ANS healthcare provision is homogeneous across European countries. The aim of this study was to identify neurology-driven or interdisciplinary clinical ANS laboratories in Europe, describe their characteristics and explore regional differences. ------ Methods: We contacted the European national ANS and neurological societies, as well as members of our professional network, to identify clinical ANS laboratories in each country and invite them to answer a web-based survey. ----- Results: We identified 84 laboratories in 22 countries and 46 (55%) answered the survey. All laboratories perform cardiovascular autonomic function tests, and 83% also perform sweat tests. Testing for catecholamines and autoantibodies are performed in 63% and 56% of laboratories, and epidermal nerve fiber density analysis in 63%. Each laboratory is staffed by a median of two consultants, one resident, one technician and one nurse. The median (interquartile range [IQR]) number of head-up tilt tests/laboratory/year is 105 (49-251). Reflex syncope and neurogenic orthostatic hypotension are the most frequently diagnosed cardiovascular ANS disorders. Thirty-five centers (76%) have an ANS outpatient clinic, with a median (IQR) of 200 (100-360) outpatient visits/year; 42 centers (91%) also offer inpatient care (median 20 [IQR 4-110] inpatient stays/year). Forty-one laboratories (89%) are involved in research activities. We observed a significant difference in the geographical distribution of ANS services among European regions: 11 out of 12 countries from North/West Europe have at least one ANS laboratory versus 11 out of 21 from South/East/Greater Europe (p = 0.021). ----- Conclusions: This survey highlights disparities in the availability of healthcare services for people with ANS disorders across European countries, stressing the need for improved access to specialized care in South, East and Greater Europe

Key considerations for patient and public involvement and engagement in health research

Patient and public involvement and engagement (PPIE) can provide valuable insights into the experiences of those living with and affected by a disease or health condition. Inclusive collaboration between patients, the public and researchers can lead to productive relationships, ensuring that health research addresses patient needs. Guidelines are available to support effective PPIE; however, evaluation of the impact of PPIE strategies in health research is limited. In this Review, we evaluate the impact of PPIE in the ‘Therapies for Long COVID in non-hospitalised individuals’ (TLC) Study, using a combination of group discussions and interviews with patient partners and researchers. We identify areas of good practice and reflect on areas for improvement. Using these insights and the results of a survey, we synthesize two checklists of considerations for PPIE, and we propose that research teams use these checklists to optimize the impact of PPIE for both patients and researchers in future studies.</p