scholarly journals Nothing About Us Without Us: A Scoping Review and Priority-Setting Partnership in Type 1 Diabetes and Exercise

2019 ◽  
Author(s):  
Nika M.D. Klaprat ◽  
Nicole Askin ◽  
Andrea MacIntosh ◽  
Nicole Brunton ◽  
Jacqueline L. Hay ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Scoping Review ◽  
Priority Setting ◽  
Randomized Trials ◽  
Steering Committee ◽  
Exercise Interventions ◽  
Patient Reported ◽  
Research Questions ◽  
Priority Setting Partnership

AbstractObjectivesExamine the characteristics of patient engagement (PE) practices in exercise-based randomized trials in type 1 diabetes (T1D), and facilitate T1D stakeholders in determining the top ten list of priorities for exercise research.DesignTwo methodological approaches were employed: a scoping review and a modified James Lind Alliance priority-setting partnership.MethodsPublished (Medline, Embase, CINAHL, and Central databases) and grey literature (www.clinicaltrials.gov) were searched to identify randomized controlled trials of exercise interventions lasting minimum four weeks and available in English. We extracted information on PE and patient-reported outcomes (PROMs) to identify if patient perspectives had been implemented. Based on results, we set out to determine exercise research priorities as a first step towards a patient-engaged research agenda. An online survey was distributed across Canada to collect research questions from patients, caregivers and healthcare providers. We qualitatively analyzed submitted questions and compiled a long-list that a twelve-person stakeholder steering committee used to identify the top ten priority research questions.ResultsOf 9,962 identified sources, 19 published trials and 4 trial registrations fulfilled inclusion criteria. No evidence of PE existed in any included study. Most commonly measured PROMs were frequency of hypoglycemia (n=7) and quality of life (n=4). The priority-setting survey yielded 194 submitted research questions. Steering committee rankings identified 10 priorities focused on lifestyle factors and exercise modifications to maintain short-term glycemic control.ConclusionRecent exercise-based randomized trials in T1D have not included PE and PROMs. Patient priorities for exercise research have yet to be addressed with adequately designed clinical trials.

scholarly journals Filling gaps in type 1 diabetes and exercise research: a scoping review and priority-setting project

2020 ◽  
Vol 8 (1) ◽  
pp. e001023
Author(s):  
Nika M D Klaprat ◽  
Nicole Askin ◽  
Andrea MacIntosh ◽  
Nicole Brunton ◽  
Jacqueline L Hay ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Scoping Review ◽  
Priority Setting ◽  
Randomized Trials ◽  
Grey Literature ◽  
Steering Committee ◽  
Exercise Interventions ◽  
Patient Reported ◽  
Research Questions

Our team examined the characteristics of patient engagement (PE) practices in exercise-based randomized trials in type 1 diabetes (T1D), and facilitated T1D stakeholders in determining the top 10 list of priorities for exercise research. Two methodological approaches were employed: a scoping review and a modified James Lind Alliance priority-setting partnership. Published (Medline, Embase, CINAHL and Central databases) and grey literature (www.clinicaltrials.gov) were searched to identify randomized controlled trials of exercise interventions lasting minimum 4 weeks and available in English. We extracted information on PE and patient-reported outcomes (PROs) to identify if patient perspectives had been implemented. Based on results, we set out to determine exercise research priorities as a first step towards a patient-engaged research agenda. An online survey was distributed across Canada to collect research questions from patients, caregivers and healthcare providers. We qualitatively analyzed submitted questions and compiled a long list that a 12-person stakeholder steering committee used to identify the top 10 priority research questions. Of 9962 identified sources, 19 published trials and 4 trial registrations fulfilled inclusion criteria. No evidence of PE existed in any included study. Most commonly measured PROs were frequency of hypoglycemia (n=7) and quality of life (n=4). The priority-setting survey yielded 194 submitted research questions. Steering committee rankings identified 10 priorities focused on lifestyle factors and exercise modifications to maintain short-term glycemic control. Recent exercise-based randomized trials in T1D have not included PE and PROs. Patient priorities for exercise research have yet to be addressed with adequately designed clinical trials.

717-P: Real-World, Patient-Reported Data on Training and Use of 670G Hybrid Closed-Loop (HCL) among Children and Adults with Type 1 Diabetes (T1D)

Diabetes ◽  
2021 ◽  
Vol 70 (Supplement 1) ◽  
pp. 717-P
Author(s):  
COLLEEN BAUZA ◽  
STEPHANIE DUBOSE ◽  
ALANDRA VERDEJO ◽  
ROY BECK ◽  
RICHARD M. BERGENSTAL ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Real World ◽  
Closed Loop ◽  
Patient Reported ◽  
Reported Data

scholarly journals What are the most important unanswered research questions in trial retention? A James Lind Alliance Priority Setting Partnership: the PRioRiTy II (Prioritising Retention in Randomised Trials) study

Trials ◽  
2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Dan Brunsdon ◽  
Linda Biesty ◽  
Peter Brocklehurst ◽  
Valerie Brueton ◽  
Declan Devane ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Priority Setting ◽  
Online Survey ◽  
Consensus Meeting ◽  
Randomised Trials ◽  
Face To Face ◽  
Key Stakeholders ◽  
James Lind Alliance ◽  
Research Questions ◽  
Priority Setting Partnership

Abstract Background One of the top three research priorities for the UK clinical trial community is to address the gap in evidence-based approaches to improving participant retention in randomised trials. Despite this, there is little evidence supporting methods to improve retention. This paper reports the PRioRiTy II project, a Priority Setting Partnership (PSP) that identified and prioritised unanswered questions and uncertainties around trial retention in collaboration with key stakeholders. Methods This PSP was conducted in collaboration with the James Lind Alliance, a non-profit making initiative, to support key stakeholders (researchers, patients, and the public) in jointly identifying and agreeing on priority research questions. There were three stages. (1) First an initial online survey was conducted consisting of six open-ended questions about retention in randomised trials. Responses were coded into thematic groups to create a longlist of questions. The longlist of questions was checked against existing evidence to ensure that they had not been answered by existing research. (2) An interim stage involved a further online survey where stakeholders were asked to select questions of key importance from the longlist. (3) A face-to-face consensus meeting was held, where key stakeholder representatives agreed on an ordered list of 21 unanswered research questions for methods of improving retention in randomised trials. Results A total of 456 respondents yielded 2431 answers to six open-ended questions, from which 372 questions specifically about retention were identified. Further analysis included thematically grouping all data items within answers and merging questions in consultation with the Steering Group. This produced 27 questions for further rating during the interim survey. The top 21 questions from the interim online survey were brought to a face-to-face consensus meeting in which key stakeholder representatives prioritised the order. The ‘Top 10’ of these are reported in this paper. The number one ranked question was ’What motivates a participant’s decision to complete a clinical trial?’ The entire list will be available at www.priorityresearch.ie. Conclusion The Top 10 list can inform the direction of future research on trial methods and be used by funders to guide projects aiming to address and improve retention in randomised trials.

What young people want from their diabetes team: developing a patient reported experience measure (PREM) for young people with type 1 diabetes

2015 ◽  
Vol 32 (4) ◽  
pp. 142-147a ◽  
Author(s):  
Isabella Girling ◽  
Emma Day ◽  
Kate Fazakerley ◽  
Tat Gray ◽  
Peter Hindmarsh ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Young People ◽  
Patient Reported ◽  
Experience Measure

scholarly journals Equine pituitary pars intermedia dysfunction: Identifying research priorities for diagnosis, treatment and prognosis through a priority setting partnership

PLoS ONE ◽  
2021 ◽  
Vol 16 (1) ◽  
pp. e0244784
Author(s):  
Rebecca C. Tatum ◽  
Cathy M. McGowan ◽  
Rachel S. Dean ◽  
Joanne L. Ireland
Keyword(s):  
Thematic Analysis ◽  
Priority Setting ◽  
Evidence Synthesis ◽  
Future Research ◽  
Poor Responders ◽  
Pars Intermedia ◽  
Veterinary Surgeons ◽  
Research Questions ◽  
Priority Setting Partnership ◽  
Horse Owners

Pituitary pars intermedia dysfunction (PPID) is the most prevalent endocrine disorder of older equids. To date, key research areas likely to have the greatest impact on equine health have not been identified. In human medicine, public and patient involvement is widely used to inform research agendas. This study aimed to engage with veterinary surgeons and horse owners to identify evidence gaps (‘uncertainties’) and prioritise these into a list of the 10 most important PPID research questions. The James Lind Alliance (JLA) Priority Setting Partnership (PSP) Framework was adapted. Questions about the diagnosis, treatment and prognosis of PPID were gathered via an online survey targeting veterinary surgeons and horse owners with experience of PPID. Thematic analysis was used to form a longlist of collated indicative research questions (CIRQs), defined by the JLA as true ‘evidence uncertainties’ when not answered by a published, clinically relevant, up-to-date systematic review. In an interim prioritisation survey, questions were ranked by weighted scores creating a shortlist of 25 that were taken forward to the PSP workshop, where participants reached a consensus on the top 10. Useable responses containing ≥1 question were received from 524 respondents (92.6% owners, n = 485; 7.4% veterinary surgeons, n = 39). After screening for relevance, 1,260 individual questions were included in thematic analysis, resulting in 47 CIRQs. Interim prioritisation votes for the CIRQs were received from 360 respondents. The top 10 questions prioritised at the PSP workshop focused on long-term prognosis, diagnostic accuracy, efficacy of pergolide treatment, alternative treatment/management strategies and potential treatment options for poor responders to pergolide. The quantity of questions generated indicates an extensive number of uncertainties regarding the diagnosis, treatment and prognosis of PPID. The top 10 research questions will help to inform key areas for evidence synthesis and knowledge translation, and to direct future research into areas most important to end users involved in caring for and treating animals with PPID.

scholarly journals The Benefits of Carbohydrate Counting in Type 1 Diabetes Mellitus : A Scoping Review

2021 ◽  
Vol 5 (4) ◽  
pp. 395
Author(s):  
Izzati Nur Khoiriani ◽  
Afifah Yasyfa Dhiyanti ◽  
Rizal Fakih Firmansyah ◽  
Dian Handayani
Keyword(s):  
Diabetes Mellitus ◽  
Type 1 Diabetes ◽  
Type 1 Diabetes Mellitus ◽  
Scoping Review ◽  
Carbohydrate Counting
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