scholarly journals Research priorities for the management of complex fractures: a UK priority setting partnership with the James Lind Alliance

BMJ Open ◽  
2021 ◽  
Vol 11 (11) ◽  
pp. e057198
Author(s):  
Christopher Patrick Bretherton ◽  
Henry A Claireaux ◽  
Jonathan Gower ◽  
Shan Martin ◽  
Angela Thornhill ◽  
...  
Keyword(s):  
National Survey ◽  
Priority Setting ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Complex Fracture ◽  
Complex Fractures ◽  
James Lind Alliance ◽  
Initial Survey ◽  
Life Roles ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities for the management of complex fractures, which represent the shared priorities of patients, their families, carers and healthcare professionals.Design/settingA national (UK) research priority setting partnership.ParticipantsPeople who have experienced a complex fracture, their carers and relatives, and relevant healthcare professionals and clinical academics involved in treating patients with complex fractures. The scope includes open fractures, fractures to joints broken into multiple pieces, multiple concomitant fractures and fractures involving the pelvis and acetabulum.MethodsA multiphase priority setting exercise was conducted in partnership with the James Lind Alliance over 21 months (October 2019 to June 2021). A national survey asked respondents to submit their research uncertainties which were then combined into several indicative questions. The existing evidence was searched to ensure that the questions had not already been sufficiently answered. A second national survey asked respondents to prioritise the research questions. A final shortlist of 18 questions was taken to a stakeholder workshop, where a consensus was reached on the top 10 priorities.ResultsA total of 532 uncertainties, submitted by 158 respondents (including 33 patients/carers) were received during the initial survey. These were refined into 58 unique indicative questions, of which all 58 were judged to be true uncertainties after review of the existing evidence. 136 people (including 56 patients/carers) responded to the interim prioritisation survey and 18 questions were taken to a final consensus workshop between patients, carers and healthcare professionals. At the final workshop, a consensus was reached for the ranking of the top 10 questions.ConclusionsThe top 10 research priorities for complex fracture include questions regarding rehabilitation, complications, psychological support and return to life-roles. These shared priorities will now be used to guide funders and teams wishing to research complex fractures over the coming decade.

scholarly journals Identifying research priorities in cardiac surgery: a report from the James Lind Alliance Priority Setting Partnership in adult heart surgery

BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e038001
Author(s):  
Florence Y Lai ◽  
Riccardo G Abbasciano ◽  
Bethany Tabberer ◽  
Tracy Kumar ◽  
Gavin J Murphy
Keyword(s):  
Cardiac Surgery ◽  
Priority Setting ◽  
Heart Surgery ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Stakeholder Groups ◽  
James Lind Alliance ◽  
Research Questions ◽  
Initial Survey ◽  
Priority Setting Partnership

ObjectiveTo identify research priorities that address the needs of people affected by cardiac surgery and those who support and care for them.DesignJames Lind Alliance (JLA) process—two surveys and a consensus workshop guided by an independent JLA adviser.SettingThe UK with international participation.ParticipantsThree stakeholder groups—heart surgery patients, carers and healthcare professionals involved in care delivery.MethodsThe initial survey was set to collect potential research questions in cardiac surgery as identified by stakeholders. Submitted questions were summarised into indicative questions. The existing evidence was searched to verify that these indicative questions had not been answered. In the second survey, stakeholders then voted for their top 10 from the list of unanswered questions. The top voted questions were taken forward for final ranking in a workshop.ResultsIn the initial survey, 629 respondents (28% patients/carers, 62% healthcare professionals) submitted 1082 potential questions. Of these, 797 in-scope questions were summarised into 49 indicative questions and of which 45 had not been answered by existing research. In the second survey, 492 respondents (43% patients/carers, 49% healthcare professionals) cast their votes with the top 12 from each of the three stakeholder groups totalling 21 questions advancing to the final priority setting workshop. The workshop attended by 25 delegates (10 patients/carers and 15 healthcare professionals) agreed on the top 10 research questions including long-term outcomes (quality of life), and aspects from preoperative personalised care (prehabilitation, frailty, comorbidities), intraoperative management (minimally invasive techniques), to prevention and management of postoperative complications (organ injury, atrial fibrillation, infection).ConclusionsThis Priority Setting Partnership (PSP) identified the priorities and unmet needs of patients and clinicians in cardiac surgery. The next step is to disseminate and implement the PSP results to ensure that these priorities shape future research and improve clinical services.

scholarly journals Identifying and prioritising unanswered research questions for people with hyperacusis: James Lind Alliance Hyperacusis Priority Setting Partnership

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e032178 ◽  
Author(s):  
Kathryn Fackrell ◽  
Linda Stratmann ◽  
Veronica Kennedy ◽  
Carol MacDonald ◽  
Hilary Hodgson ◽  
...  
Keyword(s):  
Lived Experience ◽  
Priority Setting ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Current Evidence ◽  
Future Research ◽  
James Lind Alliance ◽  
Essential Resource ◽  
Underlying Mechanisms ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities in hyperacusis that key stakeholders agree are the most important.Design/settingA priority setting partnership using two international surveys, and a UK prioritisation workshop, adhering to the six-staged methodology outlined by the James Lind Alliance.ParticipantsPeople with lived experience of hyperacusis, parents/carers, family and friends, educational professionals and healthcare professionals who support and/or treat adults and children who experience hyperacusis, including but not limited to surgeons, audiologists, psychologists and hearing therapists.MethodsThe priority setting partnership was conducted from August 2017 to July 2018. An international identification survey asked respondents to submit any questions/uncertainties about hyperacusis. Uncertainties were categorised, refined and rephrased into representative indicative questions using thematic analysis techniques. These questions were verified as ‘unanswered’ through searches of current evidence. A second international survey asked respondents to vote for their top 10 priority questions. A shortlist of questions that represented votes from all stakeholder groups was prioritised into a top 10 at the final prioritisation workshop (UK).ResultsIn the identification survey, 312 respondents submitted 2730 uncertainties. Of those uncertainties, 593 were removed as out of scope, and the remaining were refined into 85 indicative questions. None of the indicative questions had already been answered in research. The second survey collected votes from 327 respondents, which resulted in a shortlist of 28 representative questions for the final workshop. Consensus was reached on the top 10 priorities for future research, including identifying causes and underlying mechanisms, effective management and training for healthcare professionals.ConclusionsThese priorities were identified and shaped by people with lived experience, parents/carers and healthcare professionals, and as such are an essential resource for directing future research in hyperacusis. Researchers and funders should focus on addressing these priorities.

scholarly journals Rare musculoskeletal diseases in adults: a research priority setting partnership with the James Lind Alliance

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Gerda Mickute ◽  
Kristina Staley ◽  
Heather Delaney ◽  
Oliver Gardiner ◽  
Amy Hunter ◽  
...  
Keyword(s):  
Priority Setting ◽  
Healthcare Professionals ◽  
Musculoskeletal Diseases ◽  
Research Priorities ◽  
Musculoskeletal Disease ◽  
Appropriate Treatment ◽  
James Lind Alliance ◽  
Priority Setting Partnership ◽  
Term Management

Abstract Background Osteogenesis imperfecta, fibrous dysplasia/McCune-Albright syndrome and X-linked hypophosphatemia are three rare musculoskeletal diseases characterised by bone deformities, frequent fractures and pain. Little high-quality research exists on appropriate treatment and long-term management of these conditions in adults. This is further worsened by limited research funding in rare diseases and a general mismatch between the existing research priorities and those of the patients. This partnership adopted the James Lind Alliance approach to identify the top 10 research priorities for rare musculoskeletal diseases in adults through joint patient, carer and healthcare professional collaboration. Results The initial survey for question collection recruited 198 respondents, submitting a total of 988 questions. 77% of the respondents were patients with a rare musculoskeletal disease. Following out-of-scope question exclusion, repeating query grouping and scientific literature check for answers, 39 questions on treatment and long-term management remained. In the second public survey, 220 respondents, of whom 85% were patients with a rare musculoskeletal disease, their carers, relatives or friends, prioritised these uncertainties, which allowed selection of the top 25. In the last stage, patients, carers and healthcare professionals gathered for a priority setting workshop to reach a consensus on the final top 10 research priorities. These focus on the uncertainties surrounding appropriate treatment and holistic long-term disease management, highlighting several aspects indirect to abnormal bone metabolism, such as extra-skeletal symptoms, psychological care of both patients and their families and disease course through ageing. Conclusions This James Lind Alliance priority setting partnership is the first to investigate rare bone diseases. The priorities identified here were developed jointly by patients, carers and healthcare professionals. We encourage researchers, funding bodies and other stakeholders to use these priorities in guiding future research for those affected by rare musculoskeletal disorders.

scholarly journals Research priorities in fragility fractures of the lower limb and pelvis: a UK priority setting partnership with the James Lind Alliance

BMJ Open ◽  
2018 ◽  
Vol 8 (10) ◽  
pp. e023301 ◽  
Author(s):  
Miguel A Fernandez ◽  
Laura Arnel ◽  
Jenny Gould ◽  
Alwin McGibbon ◽  
Richard Grant ◽  
...  
Keyword(s):  
Priority Setting ◽  
Lower Limb ◽  
Healthcare Professionals ◽  
Weight Bearing ◽  
Research Priorities ◽  
Occupational Therapists ◽  
Fragility Fractures ◽  
James Lind Alliance ◽  
Research Questions ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities in fragility fractures of the lower limb and pelvis which represent the shared priorities of patients, their friends and families, carers and healthcare professionals.Design/settingA national (UK) research priority setting partnership.ParticipantsPatients over 60 years of age who have experienced a fragility fracture of the lower limb or pelvis; carers involved in their care (both in and out of hospital); family and friends of patients; healthcare professionals involved in the treatment of these patients including but not limited to surgeons, anaesthetists, paramedics, nurses, general practitioners, physicians, physiotherapists and occupational therapists.MethodsUsing a multiphase methodology in partnership with the James Lind Alliance over 18 months (August 2016–January 2018), a national scoping survey asked respondents to submit their research uncertainties. These were amalgamated into a smaller number of research questions. The existing evidence was searched to ensure that the questions had not been answered. A second national survey asked respondents to prioritise the research questions. A final shortlist of 25 questions was taken to a multistakeholder workshop where a consensus was reached on the top 10 priorities.ResultsThere were 963 original uncertainties submitted by 365 respondents to the first survey. These original uncertainties were refined into 88 research questions of which 76 were judged to be true uncertainties following a review of the research evidence. Healthcare professionals and other stakeholders (patients, carers, friends and families) were represented equally in the responses. The top 10 represent uncertainties in rehabilitation, pain management, anaesthesia and surgery.ConclusionsWe report the top 10 UK research priorities in patients with fragility fractures of the lower limb and pelvis. The priorities highlight uncertainties in rehabilitation, postoperative physiotherapy, pain, weight-bearing, infection and thromboprophylaxis. The challenge now is to refine and deliver answers to these research priorities.

scholarly journals Research priorities in children requiring elective surgery for conditions affecting the lower limbs: a James Lind Alliance Priority Setting Partnership

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e033233
Author(s):  
Martinique Vella-Baldacchino ◽  
Daniel C Perry ◽  
Andreas Roposch ◽  
Nicholas Nicolaou ◽  
Stephen Cooke ◽  
...  
Keyword(s):  
Priority Setting ◽  
Lower Limb ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Lower Limbs ◽  
Nominal Group ◽  
Face To Face ◽  
James Lind Alliance ◽  
Research Questions ◽  
Priority Setting Partnership

ObjectiveTo identify and prioritise research questions concerning the elective surgical management of children with conditions affecting the lower limb by engaging patients, carers and healthcare professionals.DesignA modified nominal group technique.SettingUK.Participants388 individuals (29 patients, 155 parents/carers, 204 healthcare professionals) were recruited through hospital clinics, patient charities and professional organisations and participated in the initial prioritisation survey; 234 individuals took part in the interim prioritisation survey. 33 individuals (3 patients, 9 parents/carers, 11 healthcare professionals, 7 individuals representing the project’s steering group and 3 James Lind Alliance (JLA) facilitators) attended the final face-to-face workshop to rank the top 10 research priorities.InterventionsSurveys were distributed using various media resources such as newsletters, internet messaging boards and the ‘Paediatric Lower Limb Surgery Priority Setting Partnership (PSP) website. Printed copies of the questionnaire were also made available to families in outpatient clinics.Outcome measuresSurvey results, top 10 and top 26 priority rankingsResultsThe process took 18 months to complete (July 2017–January 2019); 388 people generated 1023 questions; a total of 801 research questions were classified as true uncertainties. Following the JLA methodology, 75 uncertainties were developed from the initial 801 questions. Twenty six of those were selected through a second survey and were taken to the final face-to-face workshop where the top 10 research priorities were selected. The top10 priorities included questions on cerebral palsy, common hip conditions (ie, Perthes’ disease and developmental dysplasia of the hip) as well as rehabilitation techniques and methods to improve shared decision-making between clinicians and patients/families.ConclusionsThis is the first JLA PSP in children’s orthopaedic surgery, a particularly under-researched and underfunded area. We have identified important research topics which will guide researchers and funders and direct their efforts in future research.

scholarly journals The Canadian Frailty Priority Setting Partnership: Research Priorities for Older Adults Living with Frailty

2019 ◽  
Vol 22 (1) ◽  
pp. 23-33 ◽  
Author(s):  
Jennifer Bethell ◽  
Martine T.E. Puts ◽  
Schroder Sattar ◽  
Melissa K. Andrew ◽  
Andrew S. Choate ◽  
...  
Keyword(s):  
Older Adults ◽  
Lived Experience ◽  
Priority Setting ◽  
Research Priorities ◽  
Partnership Research ◽  
James Lind Alliance ◽  
Initial Survey ◽  
Two Stages ◽  
Priority Setting Partnership ◽  
Care Support

BackgroundPatient engagement in research priority-setting is intended to democratize research and increase impact. The objectives of the Canadian Frailty Priority Setting Partnership (PSP) were to engage people with lived or clinical experience of frailty, and produce a list of research priorities related to care, support, and treatment of older adults living with frailty.MethodsThe Canadian Frailty PSP was supported by the Canadian Frailty Network, coordinated by researchers in Toronto, On-tario and followed the methods of the James Lind Alliance, which included establishing a Steering Group, inviting partner organizations, gathering questions related to care, support and treatment of older adults living with frailty, processing the data and prioritizing the questions.ResultsIn the initial survey, 799 submissions were provided by 389 individuals and groups. The 647 questions that were within scope were categorized, merged, and summarized, then checked against research evidence, creating a list of 41 unanswered questions. Prioritization took place in two stages: first, 146 individuals and groups participated in survey and their responses short-listed 22 questions; and second, an in-person workshop was held on September 26, 2017 in Toronto, Ontario where these 22 questions were discussed and ranked.ConclusionResearchers and research funders can use these results to inform their agendas for research on frailty. Strategies are needed for involving those with lived experience of frailty in research.

scholarly journals Priorities for research in miscarriage: a priority setting partnership between people affected by miscarriage and professionals following the James Lind Alliance methodology

BMJ Open ◽  
2017 ◽  
Vol 7 (8) ◽  
pp. e016571 ◽  
Author(s):  
Matthew Prior ◽  
Carmel Bagness ◽  
Jane Brewin ◽  
Arri Coomarasamy ◽  
Lucy Easthope ◽  
...  
Keyword(s):  
Priority Setting ◽  
Emotional Support ◽  
Healthcare Professionals ◽  
Face To Face ◽  
Electronic Survey ◽  
James Lind Alliance ◽  
Emotional Aspects ◽  
A Priority ◽  
Initial Survey ◽  
Priority Setting Partnership

ObjectivesTo identify and prioritise important research questions for miscarriage.DesignA priority setting partnership using prospective surveys and consensus meetings following methods advocated by the James Lind Alliance.SettingUK.ParticipantsWomen and those affected by miscarriage working alongside healthcare professionals.ResultsIn the initial survey, 1093 participants (932 women who have experienced miscarriage, 8 partners, 17 family members, friends or colleagues, 104 healthcare professionals and eight charitable organisations) submitted 3279 questions. A review of existing literature identified a further 64. Non-questions were removed, and the remaining questions were categorised and summarised into 58 questions. In an interim electronic survey, 2122 respondents chose their top 10 priorities from the 58 summary questions. The 25 highest ranked in the survey were prioritised at a final face-to-face workshop. In summary, the top 10 priorities were ranked as follows: research into preventative treatment, emotional aspects in general, investigation, relevance of pre-existing medical conditions, emotional support as a treatment, importance of lifestyle factors, importance of genetic and chromosomal causes, preconception tests, investigation after different numbers of miscarriage and male causal factors.ConclusionsThese results should be the focus of future miscarriage research. Presently, studies are being conducted to address the top priority; however, many other priorities, especially psychological and emotional support, are less well researched areas. We hope our results will encourage both researchers and funders to focus on these priorities.

scholarly journals Research priorities for the management of broken bones of the upper limb in people over 50: a UK priority setting partnership with the James Lind Alliance

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e030028 ◽  
Author(s):  
Warren J Sheehan ◽  
Mark A Williams ◽  
Zoe Paskins ◽  
Matthew L Costa ◽  
Miguel Antonio Fernandez ◽  
...  
Keyword(s):  
Upper Limb ◽  
Priority Setting ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Broken Bones ◽  
Research Areas ◽  
James Lind Alliance ◽  
Research Questions ◽  
Multi Stakeholder ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities for the management of broken bones of the upper limb in people over 50, which represent the shared priorities of patients, their families, carers and healthcare professionals.Design/settingA national (UK) research priority setting partnership.ParticipantsPeople aged 50 and over who have experienced a fracture of the upper limb, carers involved in their care, family and friends of patients, healthcare professionals involved in the treatment of these patients.MethodsUsing a multiphase methodology in partnership with the James Lind Alliance over 15 months (September 2017 to December 2018), a national scoping survey asked respondents to submit their research uncertainties. These were amalgamated into a smaller number of research questions. The existing evidence was searched to ensure that the questions had not already been answered. A second national survey asked respondents to prioritise the research questions. A final shortlist of 25 questions was taken to a multi-stakeholder workshop where a consensus was reached on the top 10 priorities.ResultsThere were 1898 original uncertainties submitted by 328 respondents to the first survey. These original uncertainties were refined into 51 research questions of which 50 were judged to be true uncertainties following a review of the research evidence. There were 209 respondents to the second (interim prioritisation) survey. The top 10 priorities encompass a broad range of uncertainties in management and rehabilitation of upper limb fractures.ConclusionsThe top 10 UK research priorities highlight uncertainties in how we assess outcomes, provide information, achieve pain control, rationalise surgical intervention, optimise rehabilitation and provide psychological support. The breadth of these research areas highlights the value of this methodology. This work should help to steer research in this area for the next 5–10 years and the challenge for researchers now is to refine and deliver answers to these research priorities.

scholarly journals Rare musculoskeletal diseases in adults: a research priority setting partnership with The James Lind Alliance

2020 ◽  
Author(s):  
Gerda Mickute ◽  
Kristina Staley ◽  
Heather Delaney ◽  
Oliver Gardiner ◽  
Amy Hunter ◽  
...  
Keyword(s):  
Priority Setting ◽  
Healthcare Professionals ◽  
Musculoskeletal Diseases ◽  
Research Priorities ◽  
Musculoskeletal Disease ◽  
Appropriate Treatment ◽  
James Lind Alliance ◽  
Priority Setting Partnership ◽  
Term Management

Abstract Background: Osteogenesis imperfecta, fibrous dysplasia/McCune-Albright syndrome and X-linked hypophosphatemia are three rare musculoskeletal diseases characterised by bone deformities, frequent fractures and pain. Little high-quality research exists on appropriate treatment and long-term management of these conditions in adults. This is further worsened by limited research funding in rare diseases and a general mismatch between the existing research priorities and those of the patients. This partnership adopted the James Lind Alliance approach to identify the top 10 research priorities for rare musculoskeletal diseases in adults through joint patient, carer and healthcare professional collaboration. Results: The initial survey for question collection recruited 198 respondents, submitting a total of 988 questions. 77% of the respondents were patients with a rare musculoskeletal disease. Following out-of-scope question exclusion, repeating query grouping and scientific literature check for answers, 39 questions on treatment and long-term management remained. In the second public survey, 220 respondents, of whom 85% were patients with a rare musculoskeletal disease, their carers, relatives or friends, prioritised these uncertainties, which allowed selection of the top 25. In the last stage, patients, carers and healthcare professionals gathered for a priority setting workshop to reach a consensus on the final top 10 research priorities. These focus on the uncertainties surrounding appropriate treatment and holistic long-term disease management, highlighting several aspects indirect to abnormal bone metabolism, such as extra-skeletal symptoms, psychological care of both patients and their families and disease course through ageing. Conclusions: This James Lind Alliance priority setting partnership is the first to investigate rare bone diseases. The priorities identified here were developed jointly by patients, carers and healthcare professionals. We encourage researchers, funding bodies and other stakeholders to use these priorities in guiding future research for those affected by rare musculoskeletal disorders.

scholarly journals Research priorities in advanced heart failure: James Lind alliance priority setting partnership

Open Heart ◽  
2020 ◽  
Vol 7 (1) ◽  
pp. e001258
Author(s):  
Clare J Taylor ◽  
Alyson L Huntley ◽  
John Burden ◽  
Amy Gadoud ◽  
Toto Gronlund ◽  
...  
Keyword(s):  
Heart Failure ◽  
Priority Setting ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Advanced Heart Failure ◽  
Nominal Group ◽  
James Lind Alliance ◽  
Research Questions ◽  
The Impact ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals.MethodsPriority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents’ questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a ‘top 10’.Results192 respondents submitted 489 responses each containing one or more research uncertainty. Out-of-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent.ConclusionsEngaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF.

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