Establishing the national top 10 priority research questions to improve diabetes-related foot health and disease: a Delphi study of Australian stakeholders

IntroductionDiabetes-related foot disease is a large cause of the global disease burden yet receives very little research funding to address this large burden. To help address this gap, it is recommended to first identify the consensus priority research questions of relevant stakeholders, yet this has not been performed for diabetes-related foot disease. The aim of this study was to determine the national top 10 priority research questions for diabetes-related foot health and disease from relevant Australian stakeholders.Research design and methodsA modified three-round Delphi online survey design was used to seek opinions from relevant Australian stakeholders including those with diabetes or diabetes-related foot disease or their carers (consumers), health professionals, researchers and industry. Participants were recruited via multiple public invitations and invited to propose three research questions of most importance to them (Round 1), prioritize their 10 most important questions from all proposed questions (Round 2), and then rank questions in order of importance (Round 3).ResultsAfter Round 1, a total of 226 unique questions were proposed by 210 participants (including 121 health professionals and 72 consumers). Of those participants, 95 completed Round 2 and 69 completed Round 3. The top 10 priority research questions covered a range of topics, including health economics, peripheral neuropathy, education, infection, technology, exercise, and nutrition. Consumers prioritized peripheral neuropathy and prevention-related questions. Health professionals prioritized management-related questions including Australia’s First Peoples foot health, health economics and infection questions.ConclusionsThese priority research questions should guide future national research agendas, funding and projects to improve diabetes-related foot disease burdens in Australia and globally. Future research should focus on consumer priority research questions to improve the burden of diabetes-related foot disease on patients and nations. Further research should also investigate reasons for different priorities between consumers and health professionals.

Download Full-text

A European Research Agenda for Geriatric Emergency Medicine: a modified Delphi study

European Geriatric Medicine ◽

10.1007/s41999-020-00426-8 ◽

2020 ◽

Author(s):

Simon P. Mooijaart ◽

Christian H. Nickel ◽

Simon P. Conroy ◽

Jacinta A. Lucke ◽

Lisa S. van Tol ◽

...

Keyword(s):

Emergency Medicine ◽

Delphi Study ◽

Research Agenda ◽

Online Survey ◽

Future Research ◽

European Research ◽

Modified Delphi ◽

Delphi Approach ◽

Research Questions ◽

Geriatric Emergency Medicine

Abstract Purpose Geriatric Emergency Medicine (GEM) focuses on delivering optimal care to (sub)acutely ill older people. This involves a multidisciplinary approach throughout the whole healthcare chain. However, the underpinning evidence base is weak and it is unclear which research questions have the highest priority. The aim of this study was to provide an inventory and prioritisation of research questions among GEM professionals throughout Europe. Methods A two-stage modified Delphi approach was used. In stage 1, an online survey was administered to various professionals working in GEM both in the Emergency Department (ED) and other healthcare settings throughout Europe to make an inventory of potential research questions. In the processing phase, research questions were screened, categorised, and validated by an expert panel. Subsequently, in stage 2, remaining research questions were ranked based on relevance using a second online survey administered to the same target population, to identify the top 10 prioritised research questions. Results In response to the first survey, 145 respondents submitted 233 potential research questions. A total of 61 research questions were included in the second stage, which was completed by 176 respondents. The question with the highest priority was: Is implementation of elements of CGA (comprehensive geriatric assessment), such as screening for frailty and geriatric interventions, effective in improving outcomes for older patients in the ED? Conclusion This study presents a top 10 of high-priority research questions for a European Research Agenda for Geriatric Emergency Medicine. The list of research questions may serve as guidance for researchers, policymakers and funding bodies in prioritising future research projects.

Download Full-text

Epigenetics and DOHaD: how translation to predictive testing will require a better public understanding

Journal of Developmental Origins of Health and Disease ◽

10.1017/s2040174421000568 ◽

2021 ◽

pp. 1-7

Author(s):

Fiona Lynch ◽

Sharon Lewis ◽

Ivan Macciocca ◽

Jeffrey M. Craig

Keyword(s):

Health Professionals ◽

Early Life ◽

Predictive Testing ◽

Public Understanding ◽

Future Research ◽

Developmental Origins ◽

Needed Information ◽

Genes And Environment ◽

Increased Risk ◽

Health And Disease

Abstract Epigenetics is likely to play a role in the mediation of the effects of genes and environment in risk for many non-communicable diseases (NCDs). The Developmental Origins of Health and Disease (DOHaD) theory presents unique opportunities regarding the possibility of early life interventions to alter the epigenetic makeup of an individual, thereby modifying their risk for a variety of NCDs. While it is important to determine how we can lower the risk of these NCDs, it is equally important to understand how the public’s knowledge and opinion of DOHaD and epigenetic concepts may influence their willingness to undertake such interventions for themselves and their children. In this review, we provide an overview of epigenetics, DOHaD, NCDs, and the links between them. We explore the issues surrounding using epigenetics to identify those at increased risk of NCDs, including the concept of predictive testing of children. We also outline what is currently understood about the public’s understanding and opinion of epigenetics, DOHaD, and their relation to NCDs. In doing so, we demonstrate that it is essential that future research explores the public’s awareness and understanding of epigenetics and epigenetic concepts. This will provide much-needed information which will prepare health professionals for the introduction of epigenetic testing into future healthcare.

Download Full-text

TP9.1.4Use of a modified Delphi process to develop research priorities in Major Trauma

British Journal of Surgery ◽

10.1093/bjs/znab362.102 ◽

2021 ◽

Vol 108 (Supplement_7) ◽

Author(s):

Luke McElroy ◽

J McGillivray ◽

Michael Wilson

Keyword(s):

Online Survey ◽

Major Trauma ◽

Phase 1 ◽

Research Priorities ◽

Delphi Process ◽

Future Research ◽

High Quality Research ◽

Trauma Research ◽

Modified Delphi ◽

Research Questions

Abstract Aims Delphi methodology can be used to develop consensus opinion amongst a group of stakeholders. This can be used to prioritise clinically relevant, patient centred research questions to guide future funding allocations. The aim of our study was to identify key future research priorities pertaining to the management of major trauma in the UK. Methods A three-phased modified Delphi process was undertaken. Phase 1 involved the submission of research questions by members of the trauma community using an online survey (Phase 1). Phases 2 and 3 involved two consecutive rounds of prioritisation after questions were subdivided into 6 subcategories: Brain Injury, Rehabilitation, Trauma in Older People, Prehospital, Interventional, and Miscellaneous (Phases 2 and 3). Cut-off points were agreed by consensus among the steering subcommittees. This established a final prioritised list of research questions. Results 201 questions across all were submitted by 65 stakeholders in phase 1. After analysis and with consensus achieved, 186 questions were taken forward for prioritisation in phase 2 with 114 included in phase 3. 56 prioritised major trauma research questions across the 6 categories were identified with a clear focus on long-term patient outcomes. Conclusions Consensus from within the major trauma community has identified 56 key research questions across 6 categories. Dissemination of these questions to funding bodies to allow for the development of high-quality research is now required. There is a clear indication for targeted multi-centric multi-disciplinary research in major trauma.

Download Full-text

What do health professionals need to know about young onset dementia? An international Delphi consensus study

BMC Health Services Research ◽

10.1186/s12913-021-07411-2 ◽

2022 ◽

Vol 22 (1) ◽

Author(s):

Leah Couzner ◽

Sally Day ◽

Brian Draper ◽

Adrienne Withall ◽

Kate E. Laver ◽

...

Keyword(s):

Health Professionals ◽

Delphi Study ◽

Online Survey ◽

Psychosocial Support ◽

Neuropsychiatric Symptoms ◽

Contributing Factors ◽

Delphi Consensus ◽

Young Onset ◽

Family Approach ◽

Young Onset Dementia

Abstract Background People with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD. Methods An international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance. Results The panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms. Conclusions The expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.

Download Full-text

The Ups and Downs of Down Syndrome: A Qualitative Study of Positive and Negative Parenting Experiences

Journal of Family Issues ◽

10.1177/0192513x18812192 ◽

2018 ◽

Vol 40 (4) ◽

pp. 518-539 ◽

Cited By ~ 6

Author(s):

Laura Farkas ◽

Jessica D. Cless ◽

Adam W. Cless ◽

Briana S. Nelson Goff ◽

Ellen Bodine ◽

...

Keyword(s):

Down Syndrome ◽

Online Survey ◽

Social Acceptance ◽

National Study ◽

Future Research ◽

Negative Experiences ◽

Negative Parenting ◽

Positive Experiences ◽

Research Questions ◽

The Impact

The current study sought to expand current literature by providing a comparison of the positive and negative experiences reported by parents of children with a Down syndrome (DS) diagnosis. A total of 435 participants from a national study were included in the current qualitative analysis based on responses to online survey data from two research questions asking parents to describe their most positive and most negative experiences in parenting their child with DS. Positive experiences themes included the following: impact on parents and other people, child’s achievements, social acceptance/connection, and everyday/everything/many. Negative experiences themes included medical experiences, lack of social acceptance/connection, the DS diagnosis, and the impact on parents and other people. Implications for professionals and future research are presented.

Download Full-text

Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-020-01559-6 ◽

2020 ◽

Vol 15 (1) ◽

Author(s):

Julie McMullan ◽

Ashleen L. Crowe ◽

Caitlin Bailie ◽

Kerry Moore ◽

Lauren S. McMullan ◽

...

Keyword(s):

Northern Ireland ◽

Rare Disease ◽

Rare Diseases ◽

Health Professionals ◽

Online Survey ◽

Essential Element ◽

Future Research ◽

Structured Interviews ◽

Collaborative Groups ◽

Related Information

Abstract Background Many people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families and healthcare professionals, was conducted in 2018–2019 using an online survey and semi-structured interviews with rare disease collaborative groups (charities, voluntary and community groups) active across Northern Ireland (NI). Methods This study had 2 stages. Stage 1 was an online survey and stage 2 involved semi-structured interviews both with rare disease collaborative groups in Northern Ireland. The surveys and interviews were used to locate existing resources as well as identify gaps where the development of further resources would be appropriate. Results Ninety-nine rare disease collaborative groups engaged with the survey with 31 providing detailed answers. Resources such as information, communication, ‘registries’, online services, training and improvements to support services were queried. Excellent communication is an important factor in delivering good rare disease support. Training for health professionals was also highlighted as an essential element of improving support for those with a rare disease to ensure they approach people with these unique and challenging diseases in an appropriate way. Carers were mentioned several times throughout the study; it is often felt they are overlooked in rare disease research and more support should be in place for them. Current care/support for those with a rare disease was highlighted as inadequate. Nine semi-structured interviews were conducted with rare disease collaborative groups. Reoccurring themes included a need for more effective information and communication, training for health professionals, online presence, support for carers, and involvement in research. Conclusions All rare disease collaborative groups agreed that current services for people living and working with a rare disease are not adequate. An important finding to consider in future research within the rare disease field is the inclusion of carers perceptions and experiences in studies. This research provides insight into the support available for rare diseases across Northern Ireland, highlights unmet needs, and suggests approaches to improve rare disease support.

Download Full-text

Good communication is critical to supporting people living and working with a rare disease: current rare disease support perceived as inadequate

10.1101/2020.05.22.20110056 ◽

2020 ◽

Author(s):

Julie McMullan ◽

Ashleen L. Crowe ◽

Caitlin Bailie ◽

Kerry Moore ◽

Lauren S. McMullan ◽

...

Keyword(s):

Northern Ireland ◽

Rare Disease ◽

Rare Diseases ◽

Health Professionals ◽

Online Survey ◽

Essential Element ◽

Future Research ◽

Structured Interviews ◽

Collaborative Groups ◽

Information And Communication

AbstractBackgroundMany people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families and healthcare professionals, was conducted in 2018-2019 using an online survey and semi-structured interviews with rare disease collaborative groups (charities, voluntary and community groups) active across Northern Ireland (NI).ResultsNinety-nine participants engaged with the survey with 31 respondents providing detailed answers. Resources such as information, communication, ‘registries’, online services, training and improvements to support services were queried. Excellent communication is an important factor in delivering good rare disease support. Training for health professionals was also highlighted as an essential element of improving support for those with a rare disease to ensure they approach people with these unique and challenging diseases in an appropriate way. Carers were mentioned several times throughout the study; it is often felt they are overlooked in rare disease research and more support should be in place for them. Current care/support for those with a rare disease was highlighted as inadequate. Nine semi-structured interviews were conducted with rare disease collaborative groups. Reoccurring themes included a need for more effective: information and communication, training for health professionals, online presence, support for carers, and involvement in research.ConclusionsAll rare disease collaborative groups agreed that current services for people living and working with a rare disease are not adequate. An important finding to consider in future research within the rare disease field is the inclusion of carers perceptions and experiences in studies. Due to the unique role a carer has in the life of a person with a rare disease it is vital that their voice is heard and their needs are listened to. This research provides insight into the support available for rare diseases across Northern Ireland, highlights unmet needs in service provision, and suggests approaches to improve rare disease support prioritising improved information and communication provision, improved access to services, and tailored support for carers of people with a rare disease.

Download Full-text

Development of a Core Set of Outcome Measures for Use During Treatment of Children With Idiopathic Toe Walking: A Delphi Study and Online Parent Survey

10.21203/rs.3.rs-1030167/v1 ◽

2021 ◽

Author(s):

Kelly Gray ◽

Verity Pacey ◽

Antoni Caserta ◽

Desiree Polt ◽

Cylie M Williams

Keyword(s):

Outcome Measures ◽

Health Professionals ◽

Delphi Study ◽

Online Survey ◽

Treatment Effectiveness ◽

Large Data ◽

Core Set ◽

Idiopathic Toe Walking ◽

Treatment Research ◽

Toe Walking

Abstract Introduction There is diversity in outcome measures used during monitoring and treatment of the exclusionary diagnosis idiopathic toe walking (ITW) in children. This diversity makes synthesis of treatment effects difficult. The primary aim of this research was to develop a core set of outcome measures identified by health professionals for use when undertaking treatment with children who have ITW. The secondary aims were to understand if parents agreed with this core set, and if parents believed they could undertake any of these measures in the absence of the clinician. Methods Study 1 was the development of consensus and agreement through the modified Delphi technique with 10 expert health professionals. The first round gathered questions and assessments for consensus, the second and third round enabled agreement with these questions and assessments. Study 2 was an online survey where parents of children who toe walked were invited to provide opinions on the importance of these measures and if they believed they may be able to collect the data about their child without the health professional being present. Results Ten health professionals provided 21 questions and assessments in Round 1 to measure treatment effectiveness for ITW in children. Following consensus and agreement by health professionals over the three rounds, there were nine questions and assessments presented to parent participants in Study 2. There were 34 parents who provided information about their satisfaction with toe walking assessments and treatments. There 27 parents provide detailed responses about the outcome questions and assessments, most parents in support of the core set identified by the experts. Parents also expressed a willingness to self-complete questions or be taught assessments to monitor their child’s progress. Conclusion This research developed a core set of questions and measures clinicians, and researchers could implement during health care provision and any research of children with ITW. Use of these measures will enable consistent data collection regardless of the setting and provide the foundation for large data pooling in future treatment research.

Download Full-text

Current Postvention Research and Priorities for the Future

Crisis ◽

10.1027/0227-5910/a000459 ◽

2017 ◽

Vol 38 (3) ◽

pp. 202-206 ◽

Cited By ~ 13

Author(s):

Karl Andriessen ◽

Dolores Angela Castelli Dransart ◽

Julie Cerel ◽

Myfanwy Maple

Keyword(s):

Social Life ◽

Online Survey ◽

Research Priorities ◽

Future Research ◽

Physical And Mental Health ◽

Intercultural Collaboration ◽

The Social ◽

The Future ◽

Suicide Bereavement ◽

Ethical Approval

Abstract. Background: Suicide can have a lasting impact on the social life as well as the physical and mental health of the bereaved. Targeted research is needed to better understand the nature of suicide bereavement and the effectiveness of support. Aims: To take stock of ongoing studies, and to inquire about future research priorities regarding suicide bereavement and postvention. Method: In March 2015, an online survey was widely disseminated in the suicidology community. Results: The questionnaire was accessed 77 times, and 22 records were included in the analysis. The respondents provided valuable information regarding current research projects and recommendations for the future. Limitations: Bearing in mind the modest number of replies, all from respondents in Westernized countries, it is not known how representative the findings are. Conclusion: The survey generated three strategies for future postvention research: increase intercultural collaboration, increase theory-driven research, and build bonds between research and practice. Future surveys should include experiences with obtaining research grants and ethical approval for postvention studies.

Download Full-text

Feeling Threatened by Immigrants: The Role of Ideology and Subjective Societal Status

10.31234/osf.io/6dw4y ◽

2020 ◽

Author(s):

Michael Bollwerk ◽

Bernd Schlipphak ◽

Joscha Stecker ◽

Jens Hellmann ◽

Gerald Echterhoff ◽

...

Keyword(s):

Online Survey ◽

Middle Eastern ◽

Social Dominance Orientation ◽

Survey Study ◽

Future Research ◽

Right Wing Authoritarianism ◽

Threat Perceptions ◽

Contextual Determinants ◽

Intergroup Conflicts ◽

And Gender

Threat perceptions towards immigrants continue to gain importance in the context of growing international migration. To reduce associated intergroup conflicts, it is crucial to understand the personal and contextual determinants of perceived threat. In a large online survey study (N = 1,184), we investigated the effects of ideology (i.e., Right-Wing Authoritarianism and Social Dominance Orientation), subjective societal status (SSS) and their interaction effects in predicting symbolic and realistic threat perceptions towards Middle Eastern immigrants. Results showed that ideology (higher RWA and SDO) and lower SSS significantly predicted both symbolic and realistic threat, even after controlling for income, education, age, and gender. Furthermore, ideology and SSS interacted significantly in predicting realistic threat, with higher levels of SDO and RWA enhancing the effect of SSS. In the discussion, we focus on the implications of our findings with respect to understanding societal conflicts, discuss methodological limitations, and provide directions for future research.

Download Full-text