Research priorities for rare neurological diseases: a representative view of patient representatives and healthcare professionals from the European Reference Network for Rare Neurological Diseases

Abstract Background Patient involvement in research increases the impact of research and the likelihood of adoption in clinical practice. A first step is to know which research themes are important for patients. We distributed a survey on research priorities to ERN-RND members, both patient representatives and healthcare professionals, asking them to prioritize five research themes for rare neurological diseases on a scale ranging from 1 (most important) to 5 (least important). A follow-up e-mail interview was conducted with patient representatives and professionals to assess potential reasons for differences in opinions between these two groups. Results In total, 156 responses were analysed: 61 from professionals and 95 from patient representatives. They covered all ERN-RND disease groups and came from 20 different EU countries. Almost half of the respondents considered ‘Developing therapies and preventive strategies’ the most important research theme. In particular, patient representatives prioritized this theme more often than professionals, while professionals prioritized ‘Disease mechanisms and models’. Patient representatives indicated that therapies and prevention were of the utmost importance to them, because their lives are often heavily impacted by the disease and their main goal is to relief the burden of disease. Professionals indicated that investigating disease mechanisms will lead to more knowledge and is indispensable for finding new treatments. Conclusions Patients and professionals have different opinions on which research theme should have priority. A qualitative follow-up shows that they respect each others’ view points. Different stakeholders involved in research should be aware of their differences in research theme priority. Explaining these differences to each other leads to more understanding, and could improve patient engagement in research. Graphical Abstract

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Research Priorities for Rare Neurological Diseases: A Representative View of Patient Representatives and Health Care Professionals From the European Reference Network for Rare Neurological Diseases

10.21203/rs.3.rs-93958/v1 ◽

2020 ◽

Author(s):

Annemarie Post ◽

Thomas Klockgether ◽

G. Bernhard Landwehrmeyer ◽

Massimo Pandolfo ◽

Astri Arnesen ◽

...

Keyword(s):

Health Care ◽

Health Care Professionals ◽

Neurological Diseases ◽

Research Priorities ◽

Disease Mechanisms ◽

Research Theme ◽

Research Themes ◽

Patient Representatives ◽

The Impact

Abstract Background: Patient involvement in research increases the impact of research and the likelihood of adoption in clinical practice. A first step is to know which research themes are important for patients. We distributed a survey on research priorities to ERN-RND members, both patient representatives and health care professionals, asking them to prioritize five research themes for rare neurological diseases on a scale ranging from 1 (most important) to 5 (least important). A follow-up e-mail interview was conducted with patient representatives and professionals to assess potential reasons for differences in opinions between these two groups.Results: In total, 156 responses were analysed: 61 from professionals and 95 from patient representatives. They covered all ERN-RND disease groups and came from 20 different EU countries. Almost half of the respondents considered ‘Developing therapies and preventive strategies’ the most important research theme. In particular, patient representatives prioritized this theme more often than professionals, while professionals prioritized ‘Disease mechanisms and models’. Patient representatives indicated that therapies and prevention were of the utmost importance to them, because their lives are often heavily impacted by the disease and their main goal is to relief the burden of disease. Professionals indicated that investigating disease mechanisms will lead to more knowledge and is indispensable for finding new treatments.Conclusions: Patients and professionals have different opinions on which research theme should have priority. A qualitative follow-up shows that they respect each others’ view points. Different stakeholders involved in research should be aware of their differences in research theme priority. Explaining these differences to each other leads to more understanding, and could improve patient engagement in research.

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Establishing and Boosting Communication in The European Reference Network For Rare Neurological Diseases (ERN-RND): The Impact of Offering Free Educational Webinars

10.21203/rs.3.rs-966815/v1 ◽

2021 ◽

Author(s):

Alicia Brunelle-Praschberger ◽

Annemarie E.M. Post ◽

Sanja Hermanns ◽

Holm Graessner

Keyword(s):

Social Media ◽

Healthcare Professionals ◽

Neurological Diseases ◽

Analytical Data ◽

Communication Strategy ◽

Reference Network ◽

European Reference Network ◽

Therapeutic Algorithms ◽

The Impact ◽

Tangible Product

Abstract Background: Since it first started operating in 2017, the European Reference Network for Rare Neurological Diseases (ERN-RND) implemented a multi-channel communication strategy to effectively reach its target audience: healthcare professionals, patients, researchers, industry representatives and the general public. It first created a website containing useful and up to date information followed by social media accounts. We compared the analytical data collected about the ERN-RND website and social media channels (Twitter, Facebook, YouTube) during two periods: October 2018 to September 2019 and the year after the ERN-RND free educational webinars were launched, from October 2019 to September 2020. This allowed us to quantify the impact of offering a tangible product (webinars) on the communication strategy. Results: The analytical data obtained from October 2018 to September 2019 and from October 2019 to September 2020 clearly shows a significant increase in traffic and followers since the launch of the ERN-RND webinars in November 2019. We also created a communication survey which was disseminated between February and June 2021. We collected responses from 61 people: 38 healthcare professionals, 11 scientists, 10 patients (advocates), 2 industry representatives, 1 patient association, 1 charity representative, 1 resident and 1 master student. Most respondents answered ”webinars” as the number one reason when asked about which content they look for on the ERN-RND website. Conclusions: Offering a tangible product - such as the webinars presented in this report - to a specific target group (healthcare professionals) supported our communication strategy by driving traffic to ERN-RND communication channels. It has also successfully tackled ERN-RND’s general aim: by enabling the flow of knowledge on rare neurological and movement disorders reach the medical community in hospitals treating patients with these rare and complex conditions, patients ultimately benefit from improved and faster diagnosis, care, and treatment. We aim to set up similar strategies to effectively reach other or the same target groups. For healthcare professionals, organising eConsultations via the Clinical Patient Management System (CPMS) or disseminating standards of care such as diagnostic and therapeutic algorithms as well as clinical practice guidelines might offer potential. For the patient community, organising customised and multilingual webinars could also work.

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Educational aspects of rare and orphan lung diseases

Respiratory Research ◽

10.1186/s12931-021-01676-1 ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Tiago M. Alfaro ◽

Marlies S. Wijsenbeek ◽

Pippa Powell ◽

Daiana Stolz ◽

John R. Hurst ◽

...

Keyword(s):

Lung Diseases ◽

Healthcare Professionals ◽

Treatment Options ◽

Delayed Diagnosis ◽

Reference Network ◽

Delay In Diagnosis ◽

Positive Effects ◽

European Reference Network ◽

Patient Representatives ◽

Rare Lung Diseases

AbstractPeople with rare lung diseases often suffer the burden of delayed diagnosis, limited treatment options, and difficulties in finding expert physicians. One of the reasons for the delay in diagnosis is the limited training for healthcare practitioners on rare diseases. This review explores the main concerns and needs for education on rare lung diseases from the perspectives of both patients and professionals. Despite the increasing interest in rare lung disorders and some recent breakthrough developments on the management of several diseases, healthcare professionals, including general practitioners and hospital workers, receive little education on this topic. Nonetheless, many healthcare professionals show much interest in receiving further training, especially on diagnosis. Patients and families want easier access to high-quality education materials to help them manage their own disease. Well-educated patients are better equipped to deal with chronic diseases, but patient education can be challenging as patients’ individual health issues, and diverse backgrounds can create significant barriers. Raising more awareness for rare lung diseases and further development of patient-centred international expert networks like the European Reference Network on Rare Lung Diseases (ERN-LUNG), which includes both experts and patient representatives, are essential for improving care and education on rare lung diseases. Initiatives such as the Rare Disease Day, have been successful in increasing awareness for rare conditions. The development of online tools for accessing information has had positive effects and should be further supported and extended in the future.

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Reorganisation of faecal microbiota transplant services during the COVID-19 pandemic

Gut ◽

10.1136/gutjnl-2020-321829 ◽

2020 ◽

Vol 69 (9) ◽

pp. 1555-1563 ◽

Cited By ~ 11

Author(s):

Gianluca Ianiro ◽

Benjamin H Mullish ◽

Colleen R Kelly ◽

Zain Kassam ◽

Ed J Kuijper ◽

...

Keyword(s):

Healthcare Professionals ◽

Faecal Microbiota ◽

Clostridioides Difficile ◽

Research Activities ◽

Increased Risk ◽

Recruitment And Selection ◽

Spread Of Infection ◽

The Impact

The COVID-19 pandemic has led to an exponential increase in SARS-CoV-2 infections and associated deaths, and represents a significant challenge to healthcare professionals and facilities. Individual countries have taken several prevention and containment actions to control the spread of infection, including measures to guarantee safety of both healthcare professionals and patients who are at increased risk of infection from COVID-19. Faecal microbiota transplantation (FMT) has a well-established role in the treatment of Clostridioides difficile infection. In the time of the pandemic, FMT centres and stool banks are required to adopt a workflow that continues to ensure reliable patient access to FMT while maintaining safety and quality of procedures. In this position paper, based on the best available evidence, worldwide FMT experts provide guidance on issues relating to the impact of COVID-19 on FMT, including patient selection, donor recruitment and selection, stool manufacturing, FMT procedures, patient follow-up and research activities.

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Impact of CAre-related Regret Upon Sleep (ICARUS) cohort study: protocol of a 3-year multicentre, international, prospective cohort study of novice healthcare professionals

BMJ Open ◽

10.1136/bmjopen-2018-022172 ◽

2018 ◽

Vol 8 (3) ◽

pp. e022172 ◽

Cited By ~ 5

Author(s):

Boris Cheval ◽

Stéphane Cullati ◽

Jesper Pihl-Thingvad ◽

Denis Mongin ◽

Martina Von Arx ◽

...

Keyword(s):

Cohort Study ◽

Psychological Health ◽

Healthcare Professionals ◽

Sleep Problems ◽

Health Problems ◽

Ethics Committee ◽

Cross Sectional ◽

Experience Of Care ◽

The Impact

IntroductionHealthcare professionals are particularly at risk of developing numerous physical and psychological health problems. The experiences of emotional burden associated with providing healthcare, notably care-related regret, have been associated with these health problems, but only using cross-sectional data so far. Evidence of a causal impact of regret has not been assessed. The Impact of CAre-related Regret Upon Sleep (ICARUS) study is the first prospective and international cohort study established to examine how newly practising healthcare professionals adapt to their challenging job by assessing the impact of care-related regret on sleep and job quitting.Method and analysisThe ICARUS cohort study will include newly practising healthcare professionals working in acute care hospitals and clinics recruited between May 2017 and November 2019. Data collection, which will begin as soon as the participant starts working with patients, will consist of a 1-year weekly assessment using a secure web survey. Follow-up data will be collected at 6, 12, 18 and 24 months after the end of the first year. We will collect detailed information on the experience of care-related regret (ie, highest regret intensity, accumulation of regrets and coping strategies related to regrets), sleep problems and job quitting. Moreover, quality of life, health status and burnout will be assessed during the follow-up. Several confounders factors, including sociodemographic characteristics, personality, night shifts and work environment characteristics, will be assessed.Ethics and disseminationThe study was approved by the Ethics Committee of Geneva Canton, Switzerland (CCER2016-02041), the Ethics Committee of London South Bank University (HSCSEP/17/06) and the University Research Ethics Committee of Bedfordshire (UREC106). Other study centres deemed local ethical approval unnecessary since the main ethics committee (Geneva) had already accepted the project. Results will be published in relevant scientific journals and be disseminated in international conferences. Fully anonymised data and questionnaires will be freely accessible to everyone (scientists and general public).

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Patient and public priorities for breast cancer research: a qualitative study in the UK

BMJ Open ◽

10.1136/bmjopen-2019-036072 ◽

2021 ◽

Vol 11 (1) ◽

pp. e036072

Author(s):

George Boundouki ◽

Rebecca Wilson ◽

Paula Duxbury ◽

Julia Henderson ◽

Laura Ballance ◽

...

Keyword(s):

Breast Cancer ◽

Cancer Research ◽

Qualitative Study ◽

Support Groups ◽

Healthcare Professionals ◽

Research Priorities ◽

Signs And Symptoms ◽

Breast Cancer Research ◽

Research Themes ◽

The Uk

ObjectiveInternationally recognised specialist breast cancer scientists, clinicians and healthcare professionals have published breast cancer research gaps that are informing research funding priorities in the UK and worldwide. We aimed to determine the breast cancer research priorities of the public to compare with those identified by clinicians and scientists.DesignWe conducted a qualitative study and thematic analysis using ‘listening events’ where patients with breast cancer and public representatives used a patient’s breast cancer journey to identify research themes.Participants and settingFemale participants were recruited from attendees at participating hospitals and support groups in the northwest of England, including patients, their family and friends as well as staff at a local retail centre.InterventionA framework approach was used to analyse transcribed discussions until thematic saturation was reached.Main outcome measuresBreast cancer research priorities were identified from participant discussions and compared with the published gaps identified by scientists and healthcare professionals.ResultsThematic saturation was reached after 27 female participants participated in listening events. Our participants consistently focused on improved methods of dissemination of information and improving education on the signs and symptoms of breast cancer. This was not highlighted by scientists or healthcare professionals. There was strong emphasis on quality of life-related issues such as side effects of treatment. There was some agreement between the priorities deduced by our study and those of the professionals in the areas of screening, prevention and breast reconstruction.ConclusionOur study identified some research themes that were not identified by scientists and healthcare professionals in two earlier landmark studies. This highlights the importance of including patients and public representatives when setting research priorities. The results should be used to guide investigators when planning future studies and for funding bodies in allocating resources for future projects.

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Mental Health at Workplace: A Bibliometric Analysis of Literature from Canada

European journal of behavioral sciences ◽

10.33422/ejbs.v3i4.436 ◽

2020 ◽

Vol 3 (4) ◽

pp. 1-13

Author(s):

Ravikiran Dwivedula

Keyword(s):

Mental Health ◽

Key Words ◽

Bibliometric Analysis ◽

Organizational Context ◽

Healthcare Professionals ◽

Healthcare Management ◽

Future Research ◽

Psychological Issues ◽

Research Theme ◽

Research Themes

The purpose of this paper is to identify and review the research themes in the area of mental health in workplace. I conduct a bibliometric analysis of 219 peer-reviewed articles specific to research conducted in Canada. The articles are extracted from EBSCO using the key words “mental health” and “workplace” and published between the years 2000 and 2020. A qualitative research technique – ‘co-occurrence of key words’ is used to identify the most relevant key words in the theoretical corpus of 219 articles. Most frequently occurring words are clustered together forming a research theme. Five research themes- healthcare management, organizational context and support, psychological issues, methodology & research design, and Participants are identified. This research makes a significant academic contribution in providing directions for future research on the topic of mental health in organizations. From the practitioner viewpoint, it draws the attention of healthcare professionals to some of the more recent practices in organizations that address the important issue of mental health.

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Early and Mid-Term Implications of the COVID-19 Pandemic on the Physical, Behavioral and Mental Health of Healthcare Professionals: The CoPE-HCP Study Protocol

Frontiers in Psychology ◽

10.3389/fpsyg.2021.616280 ◽

2021 ◽

Vol 12 ◽

Author(s):

Mohammed Y. Khanji ◽

Carmela Maniero ◽

Sher NG ◽

Imrana Siddiqui ◽

Jaya Gupta ◽

...

Keyword(s):

Mental Health ◽

Healthcare Professionals ◽

Physical Symptoms ◽

Screening Tools ◽

Cross Sectional Survey ◽

Related Factors ◽

Cross Sectional ◽

Physical Wellbeing ◽

The Impact

IntroductionThe COVID-19 pandemic has led to unprecedented strain to healthcare systems worldwide and posed unique challenges to the healthcare professionals (HCPs) and the general public.ObjectivesThe aim of this study is to evaluate the impact of COVID-19 on the mental health, behavioral, and physical wellbeing of HCPs in the early and mid-term periods of the pandemic in comparison to non-HCPs. Thus, facilitating and guiding optimum planning and delivery of support to HCPs.Methods and AnalysisAn observational cross-sectional survey and cohort study aiming to enroll over 1050 participants (minimum, 800 HCPs and 250 controls). Study questionnaires will be completed at baseline and after 6-weeks and 4-months. Recruitment initiated July 2020. The study was designed in London, United Kingdom, but open to participants worldwide. Baseline: Questionnaires comprising of validated self-administered screening tools for depression, anxiety, sleep-related issues, wellbeing, and burnout. The questionnaires also explore changes in behavior and physical wellbeing of the participants. In addition, associations of these mental health and behavioral factors with work-related factors and support will be explored. Six-weeks and 4-months follow-up: Follow-up questionnaires will assess change in symptoms of anxiety and depression, sleep disorders, use of alcohol and other substances, behavioral or interpersonal relationship changes. Physical wellbeing will be assessed through the presence of suspected or confirmed COVID-19 infection and absence from work. We will also evaluate the impact of variable provision of personal protection equipment (supply and training), extended working hours, and concern for the wellbeing of family members, anxiety levels, and evidence of burnout.Statistical ConsiderationsThe study has 80% power to detect a 10% difference of combined depression and/or anxiety symptoms between the groups using two-sided type 1 error at 0.05 at baseline. Assuming that only 50% of these HCPs agree to be a part of a cohort survey, we will have 80% power to detect around 12% difference in the two groups in reported physical symptoms (20% vs. 32.3%), or prevalence of depression and/or anxiety at the end of the study.EthicsThe study was approved by the Cambridge East, Research Ethics Committee (20/EE/0166).Trial Registration NumberClinicalTrials.gov, NCT04433260.

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Mixing methods in fatherhood research: studying social change in family life

Fathers, Families and Relationships ◽

10.1332/policypress/9781447331476.003.0011 ◽

2018 ◽

Author(s):

Allan Westerling

Keyword(s):

Social Change ◽

Family Life ◽

Analytical Approach ◽

Important Research ◽

Social Psychological ◽

Research Theme ◽

Exploratory Approach ◽

Research Themes ◽

Modern Welfare State ◽

The Impact

This chapter reflects on the ways in which mixing methods allow empirical exploration of the impact of social change on family life and how this process opens up fathering and fatherhood as research themes. Forming the basis of this analysis is a Danish research project called Families and Social Networks in the Modern Welfare State (FAMOSTAT), which studies the consequences of ongoing modernisation for family life. A presentation of the research design and analytical approach illustrates how fathers and fatherhood emerged as an important research theme by focusing on everyday family life primarily from a social psychological perspective. Working with multiple methods facilitates a genuinely exploratory approach that unleashes both empirical sensitivity and theoretical creativity.

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Communication Practice Patterns of US Healthcare Professionals with CML Patients Undergoing Oral Tyrosine Kinase Inhibitor Treatment

Blood ◽

10.1182/blood.v124.21.2623.2623 ◽

2014 ◽

Vol 124 (21) ◽

pp. 2623-2623

Author(s):

Sara R Fagerlie ◽

Alison Heintz ◽

Maureen Haas

Keyword(s):

Healthcare Professionals ◽

Kinase Inhibitor ◽

Patient Adherence ◽

Educational Activity ◽

Educational Grant ◽

Dose Management ◽

Tki Treatment ◽

The Impact

Abstract Patient adherence to oral tyrosine kinase inhibitor (TKI) treatment remains a significant challenge for the hematology healthcare professional treating patients with chronic myeloid leukemia (CML). Current data suggests that only a minority of CML patients are perfectly adherent to TKI treatment. Moreover, patients with less than 90% adherence have significantly lower molecular response rates and, ultimately, outcomes. Therefore, guidelines currently recommend evaluating adherence whenever a therapeutic milestone is not achieved. Given the importance of adherence to optimal CML treatment, communication patterns of US healthcare professionals and the impact of education on those practice patterns were evaluated. From December 2012 to April 2014, 38 live 1-hour educational interventions were implemented in accordance with the essential areas and policies of the Accreditation Council for Continuing Medical Education (ACCME) and Accreditation Council for Pharmacy Education (ACPE). The programs educated 631 healthcare professionals practicing in the community setting. Participants were asked a series of questions on communication and follow-up with CML patients prior to and following an educational intervention. Practice pattern, knowledge, and competence were assessed via case vignettes prior to and immediately following each educational activity via an audience response system. Surveys completed 6 weeks following each activity assessed practitioner performance and long-term incorporation of the educational content. Prior to the education less than 50% of practitioners evaluated adherence for a CML patient missing major response milestones. The majority of practitioners instead opted to switch to a different TKI or increase TKI dose. Education profoundly increased the proportion of practitioners choosing to evaluate adherence in both the short- and long-term. Furthermore, prior to the education, only 60% of healthcare professionals reported always discussing the impact of non-adherence to oral TKI treatment on clinical outcomes. Immediately following the education 86% reported intent to always discuss the impact with patients. However, preliminarily, this intent did not appear to be incorporated into clinical practice for those physicians responding to the long-term follow-up survey. Most practitioners (85% prior to the education and 94% following the education) reported using a tool to facilitate dose management for patients on an oral TKI. A pillbox was the most commonly used tool (41% prior to the education, 38% following the education). Education resulted in an increase (+13%) in those practitioners incorporating technology (text, email, or cell phone application) as a dose management or patient adherence tool. In the long-term, 64% of survey respondents agreed or strongly agreed that participation in the educational activity increased their likelihood to use a tool to aid dose management and adherence (no participants disagreed). Overall, these data suggest that among community practitioners, discussion of adherence to oral TKI treatment for CML is limited. Education positively improves the percentage of practitioners who recognize when adherence should be evaluated, the importance of patient-practitioner discussion on non-adherence, and incorporate tools to facilitate patient dose management and adherence to oral TKI treatment. Disclosures Fagerlie: Novartis: Unrestricted Educational Grant Other. Heintz:Novartis: unrestricted educational grant Other. Haas:Novartis: unrestricted educational grant Other.

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