scholarly journals Gathering Global Perspectives to Establish the Research Priorities and Minimum Data Sets for Degenerative Cervical Myelopathy: Sampling Strategy of the First Round Consensus Surveys of AO Spine RECODE-DCM

2021 ◽  
pp. 219256822110475
Author(s):  
Oliver D. Mowforth ◽  
Danyal Z Khan ◽  
Mei Yin Wong ◽  
George A. E. Pickering ◽  
Lydia Dean ◽  
...  
Keyword(s):  
Cervical Myelopathy ◽  
Healthcare Professionals ◽  
Core Outcome Set ◽  
Research Priorities ◽  
Core Outcome ◽  
Core Data ◽  
Minimum Data ◽  
Outcome Set ◽  
Data Elements ◽  
Degenerative Cervical Myelopathy

Study Design Survey. Introduction AO Spine Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy (RECODE-DCM) is an international initiative that aims to accelerate knowledge discovery and improve outcomes by developing a consensus framework for research. This includes defining the top research priorities, an index term and a minimum data set (core outcome set and core data elements set – core outcome set (COS)/core data elements (CDE)). Objective To describe how perspectives were gathered and report the detailed sampling characteristics. Methods A two-stage, electronic survey was used to gather and seek initial consensus. Perspectives were sought from spinal surgeons, other healthcare professionals and people with degenerative cervical myelopathy (DCM). Participants were allocated to one of two parallel streams: (1) priority setting or (2) minimum dataset. An email campaign was developed to advertise the survey to relevant global stakeholder individuals and organisations. People with DCM were recruited using the international DCM charity Myelopathy.org and its social media channels. A network of global partners was recruited to act as project ambassadors. Data from Google Analytics, MailChimp and Calibrum helped optimise survey dissemination. Results Survey engagement was high amongst the three stakeholder groups: 208 people with DCM, 389 spinal surgeons and 157 other healthcare professionals. Individuals from 76 different countries participated; the United States, United Kingdom and Canada were the most common countries of participants. Conclusion AO Spine RECODE-DCM recruited a diverse and sufficient number of participants for an international PSP and COS/CDE process. Whilst PSP and COS/CDE have been undertaken in other fields, to our knowledge, this is the first time they have been combined in one process.

scholarly journals Development of a core measurement set for research in degenerative cervical myelopathy: a study protocol (AO Spine RECODE-DCM CMS)

2021 ◽  
Author(s):  
Benjamin M Davies ◽  
Alvaro Yanez Touzet ◽  
Oliver D Mowforth ◽  
Keng S Lee ◽  
Danyal Khan ◽  
...  
Keyword(s):  
Cervical Myelopathy ◽  
Core Outcome Set ◽  
Core Outcome ◽  
Measurement Instruments ◽  
Health Measurement ◽  
Common Data Elements ◽  
Potential Measurement ◽  
The Core ◽  
Data Elements ◽  
Degenerative Cervical Myelopathy

Introduction: Progress in degenerative cervical myelopathy (DCM) is hindered by inconsistent measurement and reporting of outcomes. This can, for example, impede the aggregation of data and comparison of outcomes between studies. This limitation can be reversed by developing a core measurement set (CMS) for use in DCM research. Previously, the AO Spine Research Objectives and Common Data Elements for DCM (AO Spine RECODE-DCM) defined what should be measured in DCM: specifically, the core data elements and core outcome set of the disease. The next step of this initiative is to determine how to measure these features. The current protocol outlines the steps necessary for the development of a CMS for DCM research and audit. Methods and analysis: The CMS will be developed in accordance with the guidance developed by the Core Outcome Measures in Effectiveness Trials (COMET) and the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN). The process will involve five phases: (1) agreement on the measurement constructs and approaches to their evaluation; (2) the formation of a long list of potential measurement instruments, by identifying existing instruments and assessing their psychometric properties; (3) the aggregation of evidence concerning when measurements should be taken; (4) consensus about which instruments to include in the CMS and (5) implementation. Ethics and dissemination: Ethical approval was obtained from the University of Cambridge. Dissemination strategies to promote awareness and adoption of the CMS include peer-reviewed scientific publications; conference presentations; podcasts; the identification of AO Spine RECODE-DCM ambassadors; and engagement with relevant journals, funders, and the DCM community.

scholarly journals Outcomes of Degenerative Cervical Myelopathy From The Perspective of Persons Living With the Condition: Findings of a Semistructured Interview Process With Partnered Internet Survey

2020 ◽  
pp. 219256822095381
Author(s):  
Benjamin M. Davies ◽  
Colin Munro ◽  
Danyal Z. Khan ◽  
Siobhan M. Fitzpatrick ◽  
Bryn Hilton ◽  
...  
Keyword(s):  
Focus Group ◽  
Cervical Myelopathy ◽  
Core Outcome Set ◽  
Internet Survey ◽  
Core Outcome ◽  
Semistructured Interview ◽  
Cross Sectional ◽  
Outcome Set ◽  
Degenerative Cervical Myelopathy ◽  
The Impact

Study Design: Mixed-methods cross-sectional study. Objectives: Degenerative cervical myelopathy (DCM) is a common and disabling condition. While classically, assessment and diagnosis has focused on neuromuscular symptoms, many other disabilities have been linked. The aim of this study was to explore the consequences of DCM for those with lived experience, producing a long list to inform the development of a core outcome set for DCM research. Methods: A 2-stage process was used: a focus group session of people with DCM (PwCM) and their supporters (n = 8) discussed the impact of DCM. This was used to develop a preliminary list of consequences, which were then placed into a survey of an online community of DCM sufferers (n = 224). Survey participants were asked to tick the consequences that they had experienced and given the opportunity to submit additional. Additional consequences were reviewed by a group of healthcare professionals and PwCM and included if not already represented. Demographic information including disease severity, age, and sex were captured for sampling comparison. Results: A total of 52 outcomes were identified from the focus group and nominally divided into 2 categories; symptoms (36 outcomes) and handicaps (18 outcomes), and further evaluated using a survey. All outcomes were recognized by at least 5% of respondents. A further 16 outcomes were added following the survey. Conclusions: A list of DCM consequences has been defined from the perspective of PwCM. This will now be evaluated as part of AO Spine RECODE-DCM, an international multistakeholder collaboration to establish a core outcome set for research.

scholarly journals Prevailing outcome themes reported by people with degenerative cervical myelopathy: findings from a semi-structured interview (Preprint)

2020 ◽  
Author(s):  
Danyal Zaman Khan ◽  
Siobhan Mairead Fitzpatrick ◽  
Bryn Hilton ◽  
Angus G.K. McNair ◽  
Ellen Sarewitz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cervical Myelopathy ◽  
Core Outcome Set ◽  
Core Outcome ◽  
Consensus Process ◽  
Outcome Set ◽  
Patient Reported ◽  
Degenerative Cervical Myelopathy ◽  
The Impact

BACKGROUND Degenerative cervical myelopathy (DCM) arises when arthritic changes of the cervical spine cause compression and a progressive injury to the spinal cord. It is common and potentially disabling. People with DCM (PwCM) to have amongst the lowest quality of life scores (SF-36) of chronic disease, although the drivers for this are not entirely understood. DCM research faces a number of challenges, including the heterogenous reporting of study data. The AO Spine RECODE-DCM project is an international consensus process that aims improve research efficiency through formation of a core outcome set (COS). A key part of COS development process is organizing outcomes into domains which represent key aspects of the disease. OBJECTIVE To facilitate this, we sought to qualitatively explore the context and impact of patient reported outcomes in DCM on people with DCM (PwCM) and their supporters. The aim was to improve understanding of patient perspective and assist the organisation of outcomes into domains for the consensus process. METHODS A single focus group was hosted by Myelopathy.org, a charity and support group for PwCM. The 40 minute session was audio-recorded and transcribed verbatim. Data was familiarized and 2 authors performed data coding independently. Codes were grouped into themes and a thematic analysis was performed guided by Braun & Clarke’s six-phase approach. The themes were subsequently reviewed with an independent PwCM stakeholder (ES), assisting in the process of capturing the true context and importance of themes. RESULTS Five PwCM (three men and two women) and three supporters (all women) participated. The average PwCM age was 53 and the median mJOA was 11 (±IQR 2), indicating these PwCM had moderate to severe DCM. 54 codes were grouped into 10 themes that captured the impact of DCM on PwCM and their supporters. These themes included: acceptance of symptoms, anticipatory anxiety, coping mechanisms/resilience, feelings of helplessness, financial consequences, lack of recognition, mental health impact, loss of life control, social reclusiveness/isolation and social stigma CONCLUSIONS This is the first study to undertake qualitative analysis of PwCM perspectives. It has highlighted a number of prevailing themes currently unmeasured in clinical research or care. The determinants of low quality of life in DCM are currently unknown, and these findings provide a novel and so far, unique perspective. These perspectives will be used to inform the development of a core outcome set for DCM which is inclusive of all relevant stakeholders, including PwCM.

scholarly journals Selecting Core Outcomes for Randomised Effectiveness trials In Type 2 diabetes (SCORE-IT): a patient and healthcare professional consensus on a core outcome set for type 2 diabetes

2019 ◽  
Vol 7 (1) ◽  
pp. e000700 ◽  
Author(s):  
Nicola L Harman ◽  
John P H Wilding ◽  
Dave Curry ◽  
James Harris ◽  
Jennifer Logue ◽  
...  
Keyword(s):  
Type 2 Diabetes ◽  
Healthcare Professionals ◽  
Core Outcome Set ◽  
Consensus Meeting ◽  
Core Outcome ◽  
Outcome Set ◽  
Core Outcomes ◽  
Effectiveness Trials

ObjectivesHeterogeneity in outcomes measured across trials of glucose-lowering interventions for people with type 2 diabetes impacts on the ability to compare findings and may mean that the results have little importance to healthcare professionals and the patients that they care for. The SCORE-IT study (Selecting Core Outcomes for Randomised Effectiveness trials In Type 2 diabetes) has addressed this issue by establishing consensus on the most important outcomes for non-surgical interventions for hyperglycemia in type 2 diabetes.Research design and methodsA comprehensive list of outcomes was developed from registered clinical trials, online patient resources, qualitative literature and long-term studies in the field. This list was then scored in a two-round online Delphi survey completed by healthcare professionals, people with type 2 diabetes, researchers in the field and healthcare policymakers. The results of this online Delphi were discussed and ratified at a face-to-face consensus meeting.Results173 people completed both rounds of the online survey (116 people with type 2 diabetes, 37 healthcare professionals, 14 researchers and 6 policymakers), 20 of these attended the consensus meeting (13 people with type 2 diabetes and 7 healthcare professionals). Consensus was reached on 18 core outcomes across five domains, which include outcomes related to diabetes care, quality of life and long-term diabetes-related complications.ConclusionsImplementation of the core outcome set in future trials will ensure that outcomes of importance to all stakeholders are measured and reported, enhancing the relevance of trial findings and facilitating the comparison of results across trials.

scholarly journals Developing a core outcome set for interventions to improve discharge from mental health inpatient services: a survey, Delphi and consensus meeting with key stakeholder groups

BMJ Open ◽  
2020 ◽  
Vol 10 (5) ◽  
pp. e034215
Author(s):  
Natasha Tyler ◽  
Nicola Wright ◽  
Andrew Grundy ◽  
Justin Waring
Keyword(s):  
Mental Health ◽  
Health Services ◽  
Healthcare Professionals ◽  
Core Outcome Set ◽  
Consensus Meeting ◽  
Service Users ◽  
Core Outcome ◽  
Stakeholder Groups ◽  
The Core ◽  
Outcome Set

ObjectiveTo develop a core set of outcomes to be used in all future studies into discharge from acute mental health services to increase homogeneity of outcome reporting.DesignWe used a cross-sectional online survey with qualitative responses to derive a comprehensive list of outcomes, followed by two online Delphi rounds and a face-to-face consensus meeting.SettingThe setting the core outcome set applies to is acute adult mental health.ParticipantsParticipants were recruited from five stakeholder groups: service users, families and carers, researchers, healthcare professionals and policymakers.InterventionsThe core outcome set is intended for all interventions that aim to improve discharge from acute mental health services to the community.ResultsNinety-three participants in total completed the questionnaire, 69 in Delphi round 1 and 68 in round 2, with relatively even representation of groups. Eleven participants attended the consensus meeting. Service users, healthcare professionals, researchers, carers/families and end-users of research agreed on a four-item core outcome set: readmission, suicide completed, service user-reported psychological distress and quality of life.ConclusionImplementation of the core outcome set in future trials research will provide a framework to achieve standardisation, facilitate selection of outcome measures, allow between-study comparisons and ultimately enhance the relevance of trial or research findings to healthcare professionals, researchers, policymakers and service users.

scholarly journals Measuring the outcomes of volunteering for education: development and pilot of a tool to assess healthcare professionals’ personal and professional development from international volunteering

BMJ Open ◽  
2019 ◽  
Vol 9 (7) ◽  
pp. e028206 ◽  
Author(s):  
Natasha Tyler ◽  
Carlos Collares ◽  
Ged Byrne ◽  
Lucie Byrne-Davis
Keyword(s):  
Professional Development ◽  
Healthcare Professional ◽  
Item Response ◽  
Healthcare Professionals ◽  
Core Outcome Set ◽  
Principal Component ◽  
Self Report ◽  
Core Outcome ◽  
Item Questionnaire ◽  
Outcome Set

ObjectiveThe development and pilot of a self-report questionnaire, to assess personal and professional development of healthcare professionals gained through experiences in low-income and middle-income countries.DesignThe instrument was developed from a core set of the outcomes of international placements for UK healthcare professionals. Principal component analysis and multidimensional item response theory were conducted using results of a cross-sectional pilot study to highlight items with the best psychometric properties.SettingQuestionnaires were completed both online and in multiple UK healthcare professional events face-to-face.Participants436 healthcare professional participants from the UK (with and without international experience) completed a 110-item questionnaire in which they assessed their knowledge, skills and attitudes.MeasuresThe 110-item questionnaire included self-report questions on a 7-point Likert scale of agreement, developed from the core outcome set, including items on satisfaction, clinical skills, communication and other important healthcare professional knowledge, skills, attitudes and behaviours. Item reduction led to development of the 40-item Measuring the Outcomes of Volunteering for Education-Tool. Internal consistency was evaluated by the Cronbach’s α coefficient. Exploratory analysis investigated the structure of the data using principal component analysis and multivariate item response theory.ResultsExploratory analysis found 10 principal components that explained 71.80% of the variance. Components were labelled ‘attitude to work, adaptability, adapting communication, cultural sensitivity, difficult communication, confidence, teaching, management, behaviour change and life satisfaction’. Internal consistency was acceptable for the identified components (α=0.72–0.86).ConclusionsA 40-item self-report questionnaire developed from a core outcome set for personal and professional development from international placements was developed, with evidence of good reliability and validity. This questionnaire will increase understanding of impact of international placements, facilitating comparisons of different types of experience. This will aid decision making about whether UK healthcare professionals should be encouraged to volunteer internationally and in what capacity.

scholarly journals European Society of Coloproctology Core Outcome Set for haemorrhoidal disease: an international Delphi study among healthcare professionals

2019 ◽  
Vol 21 (5) ◽  
pp. 570-580 ◽  
Author(s):  
R. R. Tol ◽  
M. L. Kimman ◽  
J. Melenhorst ◽  
L. P. S. Stassen ◽  
C. D. Dirksen ◽  
...  
Keyword(s):  
European Society ◽  
Delphi Study ◽  
Healthcare Professionals ◽  
Core Outcome Set ◽  
Core Outcome ◽  
Haemorrhoidal Disease ◽  
Outcome Set

scholarly journals DEVELOPING A MINIMUM DATA SET, KNOWN AS A CORE OUTCOME SET, FOR IVF RESEARCH

2020 ◽  
Vol 114 (3) ◽  
pp. e161-e162
Author(s):  
James M.N. Duffy ◽  
Yusuf Beebeejaun ◽  
Cindy Farquhar
Keyword(s):  
Core Outcome Set ◽  
Minimum Data Set ◽  
Core Outcome ◽  
Data Set ◽  
Minimum Data ◽  
Outcome Set

scholarly journals Development of a Core Outcome Set for clinical trials aimed at improving antimicrobial stewardship in care homes

2021 ◽  
Vol 29 (Supplement_1) ◽  
pp. i15-i16
Author(s):  
H Q Nguyen ◽  
D T Bradley ◽  
M M Tunney ◽  
C M Hughes
Keyword(s):  
Clinical Trials ◽  
Older People ◽  
Antimicrobial Stewardship ◽  
Healthcare Professionals ◽  
Care Home ◽  
Core Outcome Set ◽  
Care Homes ◽  
Core Outcome ◽  
Delphi Consensus ◽  
Outcome Set

Abstract Introduction Diverse outcomes reported in clinical trials to improve antimicrobial stewardship (AMS) in care homes has hindered evidence synthesis [1]. We previously reported that a number of outcomes for care home AMS which may be important to healthcare professionals and relatives of care home residents had not been measured in previous trials [2]. It is essential to generate a set of important outcomes (a core outcome set – COS) for future studies of AMS interventions in care homes. Aim To develop a COS for use in clinical trials aimed at improving AMS in care homes. Methods A refined inventory of outcomes for AMS interventions in care homes, compiled from a previous study [2], was presented in a three-round international Delphi consensus survey, followed by an online consensus exercise. Stakeholders engaged in AMS in care homes (e.g. healthcare professionals, representatives of care home residents) were invited to participate, having been identified through the research team’s contacts and knowledge of relevant organisations. A 9-point Likert scale was used during the consensus procedures and an outcome was included in the COS if 80% or more of participants scored between 7 and 9, and 15% or less scored between 1 and 3. Less stringent criteria for inclusion were also applied if the final COS comprised fewer than three outcomes. Subsequently, a suitable outcome measurement instrument (OMI) was selected for each outcome in the COS using the following steps: finding existing OMIs in the literature and consulting with experts, assessing the quality of OMIs, and selecting one OMI for each core outcome via a two-round international Delphi consensus exercise. Consent was obtained from all participants taking part in all consensus procedures. Results The initial inventory of 14 outcomes was presented to 82 international Delphi panellists from 17 countries in the first round who also suggested three additional outcomes. These 17 outcomes were rated again in two further rounds, with consensus achieved for ten outcomes. A subsequent online consensus exercise with twelve participants from Northern Ireland, including the research team, reached consensus to include five outcomes in the COS (Table 1). Regarding selection of OMIs for the COS, 17 OMIs were identified through literature searches and experts’ suggestions. Based on quality assessment, three OMIs - ‘Number of antimicrobial courses started per 1000 resident-days’, ‘Rate of antimicrobial days of therapy per 1000 resident-days’, and ‘Van Buul algorithms to evaluate appropriateness of initiating or withholding antibiotics’ - were selected for a two-round Delphi exercise with 59 participants from 16 countries. Consensus was reached to select two OMIs for the COS, as presented in Table 1. Conclusion This is the first study to develop a COS for use in clinical trials aimed at improving AMS in care homes. Although we recruited few representatives from advocacy groups for older people, care home staff and managers, there was common agreement for inclusion of a number of outcomes. This COS represents the minimum that should be used in research and trialists may consider exploring other outcomes as reported in previous studies. References 1. Nguyen HQ, Tunney MM, Hughes CM. Interventions to Improve Antimicrobial Stewardship for Older People in Care Homes: A Systematic Review. Drugs and Aging. 2019;36(4):355–69. 2. Nguyen HQ, Bradley DT, Tunney MM, Hughes CM. Antimicrobial Stewardship in Care Homes: Outcomes of Importance to Stakeholders. J Hosp Infect. 2020 Jan 27;104(4):582–91.

scholarly journals Core outcome set for preventive intervention trials in chronic and episodic migraine (COSMIG): an international, consensus-derived and multistakeholder initiative

BMJ Open ◽  
2021 ◽  
Vol 11 (11) ◽  
pp. e043242
Author(s):  
Kirstie Haywood ◽  
Rachel Potter ◽  
Robert Froud ◽  
Gemma Pearce ◽  
Barbara Box ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Healthcare Professionals ◽  
Core Outcome Set ◽  
Episodic Migraine ◽  
Consensus Meeting ◽  
Good Representation ◽  
Core Outcome ◽  
The Core ◽  
Outcome Set

ObjectiveTypically, migraine prevention trials focus on reducing migraine days. This narrow focus may not capture all that is important to people with migraine. Inconsistency in outcome selection across trials limits the potential for data pooling and evidence synthesis. In response, we describe the development of core outcome set for migraine (COSMIG).DesignA two-stage approach sought to achieve international, multistakeholder consensus on both the core domain set and core measurement set. Following construction of a comprehensive list of outcomes, expert panellists (patients, healthcare professionals and researchers) completed a three-round electronic-Delphi study to support a reduction and prioritisation of core domains and outcomes. Participants in a consensus meeting finalised the core domains and methods of assessment. All stages were overseen by an international core team, including patient research partners.ResultsThere was a good representation of patients (episodic migraine (n=34) and chronic migraine (n=42)) and healthcare professionals (n=33) with high response and retention rates. The initial list of domains and outcomes was reduced from >50 to 7 core domains for consideration in the consensus meeting, during which a 2-domain core outcome set was agreed.ConclusionInternational and multistakeholder consensus emerged to describe a two-domain core outcome set for reporting research on preventive interventions for chronic and episodic migraine: migraine-specific pain and migraine-specific quality of life. Intensity of migraine pain assessed with an 11-point Numerical Rating Scale and the frequency as the number of headache/migraine days over a specified time period. Migraine-specific quality of life assessed using the Migraine Functional Impact Questionnaire.

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