Developing Clinical and Research Priorities for Pain and Psychological Features in People With Patellofemoral Pain: An International Consensus Process With Health Care Professionals

2022 ◽  
Vol 52 (1) ◽  
pp. 29-39
Author(s):  
Bill T. Vicenzino ◽  
Michael Skovdal Rathleff ◽  
Sinead Holden ◽  
Liam Maclachlan ◽  
Benjamin E. Smith ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Research Priorities ◽  
Patellofemoral Pain ◽  
Consensus Process ◽  
International Consensus ◽  
Psychological Features

scholarly journals A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals

2017 ◽  
Vol 1 (1) ◽  
pp. 137-147 ◽  
Author(s):  
Mary-Ann Fitzcharles ◽  
Mary Brachaniec ◽  
Lynn Cooper ◽  
Ruth Dubin ◽  
Trudy Flynn ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Research Priorities ◽  
Paradigm Change

scholarly journals Moving Stroke Rehabilitation Research Evidence into Clinical Practice: Consensus-Based Core Recommendations From the Stroke Recovery and Rehabilitation Roundtable

2019 ◽  
Vol 33 (11) ◽  
pp. 935-942 ◽  
Author(s):  
Janice J. Eng ◽  
Marie-Louise Bird ◽  
Erin Godecke ◽  
Tammy C. Hoffmann ◽  
Carole Laurin ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Practice ◽  
Service Delivery ◽  
Health Care Providers ◽  
Stroke Rehabilitation ◽  
Research Evidence ◽  
Stroke Recovery ◽  
Care Providers ◽  
Consensus Process ◽  
International Consensus

Moving research evidence to practice can take years, if not decades, which denies stroke patients and families from receiving the best care. We present the results of an international consensus process prioritizing what research evidence to implement into stroke rehabilitation practice to have maximal impact. An international 10-member Knowledge Translation Working Group collaborated over a six-month period via videoconferences and a two-day face-to-face meeting. The process was informed from surveys received from 112 consumers/family members and 502 health care providers in over 28 countries, as well as from an international advisory of 20 representatives from 13 countries. From this consensus process, five of the nine identified priorities relate to service delivery (interdisciplinary care, screening and assessment, clinical practice guidelines, intensity, family support) and are generally feasible to implement or improve upon today. Readily available website resources are identified to help health care providers harness the necessary means to implement existing knowledge and solutions to improve service delivery. The remaining four priorities relate to system issues (access to services, transitions in care) and resources (equipment/technology, staffing) and are acknowledged to be more difficult to implement. We recommend that health care providers, managers, and organizations determine whether the priorities we identified are gaps in their local practice, and if so, consider implementation solutions to address them to improve the quality of lives of people living with stroke.

scholarly journals Hematologic Malignancies in Pregnancy: Management Guidelines From an International Consensus Meeting

2016 ◽  
Vol 34 (5) ◽  
pp. 501-508 ◽  
Author(s):  
Michael Lishner ◽  
Irit Avivi ◽  
Jane F. Apperley ◽  
Daan Dierickx ◽  
Andrew M. Evens ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Pregnancy Termination ◽  
Perinatal Period ◽  
Hematologic Malignancies ◽  
Consensus Meeting ◽  
Care Providers ◽  
International Consensus ◽  
Management Guidelines

Purpose The incidence of hematologic malignancies during pregnancy is 0.02%. However, this figure is increasing, as women delay conception until a later age. Systemic symptoms attributed to the development of a hematologic cancer may overlap with physiologic changes of pregnancy. A favorable prognosis is contingent upon early diagnosis and treatment. Therefore, a high index of suspicion is required by health care providers. Although timely, accurate diagnosis followed by appropriate staging is essential and should not be delayed due to pregnancy, management guidelines are lacking due to insufficient evidence-based research. Consequently, treatment is delayed, posing significant risks to maternal and fetal health, and potential pregnancy termination. This report provides guidelines for clinical management of hematologic cancers during the perinatal period, which were developed by a multidisciplinary team including an experienced hematologist/oncologist, a high-risk obstetrics specialist, a neonatologist, and experienced nurses, social workers, and psychologists. Methods These guidelines were developed by experts in the field during the first International Consensus Meeting of Prenatal Hematologic Malignancies, which took place in Leuven, Belgium, on May 23, 2014. Results and Conclusion This consensus summary equips health care professionals with novel diagnostic and treatment methodologies that aim for optimal treatment of the mother, while protecting fetal and pediatric health.

scholarly journals 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

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.

scholarly journals Moving stroke rehabilitation research evidence into clinical practice: Consensus-based core recommendations from the Stroke Recovery and Rehabilitation Roundtable

2019 ◽  
Vol 14 (8) ◽  
pp. 766-773 ◽  
Author(s):  
Janice J Eng ◽  
Marie-Louise Bird ◽  
Erin Godecke ◽  
Tammy C Hoffmann ◽  
Carole Laurin ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Practice ◽  
Service Delivery ◽  
Health Care Providers ◽  
Stroke Rehabilitation ◽  
Research Evidence ◽  
Stroke Recovery ◽  
Care Providers ◽  
Consensus Process ◽  
International Consensus

Moving research evidence to practice can take years, if not decades, which denies stroke patients and families from receiving the best care. We present the results of an international consensus process prioritizing what research evidence to implement into stroke rehabilitation practice to have maximal impact. An international 10-member Knowledge Translation Working Group collaborated over a six-month period via videoconferences and a two-day face-to-face meeting. The process was informed from surveys received from 112 consumers/family members and 502 health care providers in over 28 countries, as well as from an international advisory of 20 representatives from 13 countries. From this consensus process, five of the nine identified priorities relate to service delivery (interdisciplinary care, screening and assessment, clinical practice guidelines, intensity, family support) and are generally feasible to implement or improve upon today. Readily available website resources are identified to help health care providers harness the necessary means to implement existing knowledge and solutions to improve service delivery. The remaining four priorities relate to system issues (access to services, transitions in care) and resources (equipment/technology, staffing) and are acknowledged to be more difficult to implement. We recommend that health care providers, managers, and organizations determine whether the priorities we identified are gaps in their local practice, and if so, consider implementation solutions to address them to improve the quality of lives of people living with stroke.

The Scleroderma Research Topics Survey for patients and health care professionals: A Scleroderma Patient-centered Intervention Network Project

2019 ◽  
Vol 4 (3) ◽  
pp. 165-172
Author(s):  
Lydia Tao ◽  
Claire Fedoruk ◽  
Kimberly A Turner ◽  
Julie Cumin ◽  
Marie-Eve Carrier ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Young Patients ◽  
Research Priorities ◽  
Research Topics ◽  
Patient Centered ◽  
Online Programs ◽  
Psychological Tools ◽  
Scleroderma Patient ◽  
Research Questions

Involving patients and health care professionals in research has been shown to be a useful strategy to generate program development ideas and establish research priorities. Online surveys can be used to identify patient research priorities. The Scleroderma Patient-centered Intervention Network is an international collaboration dedicated to researching problems important to people with scleroderma and developing, testing, and disseminating educational, self-management, rehabilitation, and psychological tools to support coping within the disease. The objectives of the Scleroderma Patient-centered Intervention Network Scleroderma Research Topics Survey were to (1) obtain input on online programs that Scleroderma Patient-centered Intervention Network could develop, (2) identify research topics important to members of the scleroderma community that could be addressed via the Scleroderma Patient-centered Intervention Network Cohort, and (3) identify potentially understudied groups. Eligible survey respondents included individuals with scleroderma and their caregivers, health care professionals, and patient organization representatives. Responses were evaluated separately for online programs, possible research questions, and understudied groups. In each category, thematic analysis was used to group responses into themes. A total of 125 participants (100 patients, 24 health care professionals, and 1 caregiver) completed the survey, and responses from patients and health care professionals were reported. For online programs, frequent recommendations included Interactive Platforms to facilitate communication between patients, as well as interventions targeting physical activity, and emotions and stress. Common responses for possible research questions were related to calcinosis, accessing health care, and quality of life. The most common suggestions for understudied groups were young patients, minority patients, and patients with calcinosis. Research topic suggestions provided in the survey will inform Scleroderma Patient-centered Intervention Network priorities and can be considered by other researchers.

scholarly journals National Athletic Trainers' Association Position Statement: Management of Individuals With Patellofemoral Pain

2018 ◽  
Vol 53 (9) ◽  
pp. 820-836 ◽  
Author(s):  
Lori A. Bolgla ◽  
Michelle C. Boling ◽  
Kimberly L. Mace ◽  
Michael J. DiStefano ◽  
Donald C. Fithian ◽  
...  
Keyword(s):  
Risk Factors ◽  
Health Care ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Clinical Decision Making ◽  
Athletic Trainers ◽  
Treatment Strategies ◽  
Patellofemoral Pain ◽  
Care Providers ◽  
National Athletic Trainers Association

Objective:  To present recommendations for athletic trainers and other health care providers regarding the identification of risk factors for and management of individuals with patellofemoral pain (PFP). Background:  Patellofemoral pain is one of the most common knee diagnoses; however, this condition continues to be one of the most challenging to manage. Recent evidence has suggested that certain risk factors may contribute to the development of PFP. Early identification of risk factors may allow clinicians to develop and implement programs aimed at reducing the incidence of this condition. To date, clinicians have used various treatment strategies that have not necessarily benefitted all patients. Suboptimal outcomes may reflect the need to integrate clinical practice with scientific evidence to facilitate clinical decision making. Recommendations:  The recommendations are based on the best available evidence. They are intended to give athletic trainers and other health care professionals a framework for identifying risk factors for and managing patients with PFP.

Abstract 142: Partnering With Survivors and Families to Set Cardiac Arrest Research Priorities: Moving Towards More Patient-Oriented Resuscitation Research

Circulation ◽  
2019 ◽  
Vol 140 (Suppl_2) ◽  
Author(s):  
Katie N Dainty ◽  
Laurie J Morrison ◽  
Christian Vaillancourt ◽  
Doug Sinclair ◽  
Andreas Laupacis ◽  
...  
Keyword(s):  
Health Care ◽  
Cardiac Arrest ◽  
Health Care Providers ◽  
Priority Setting ◽  
Health Care Professionals ◽  
Family Members ◽  
Research Priorities ◽  
Care Providers ◽  
James Lind Alliance ◽  
The Uk

Background: “Priority setting” is something that we do in research in order to get a range of opinions on what research questions are the most important or timely in a particular field. This is typically done with a group of expert health care providers and researchers and has not involved patients, family or the public. Methods: With funding from the Canadian Institutes of Health Research we partnered with the James Lind Alliance (JLA) in the UK to use their proven consensus methodology to build a Public Priority Setting Partnerships (PSP) on out-of-hospital Cardiac Arrest (OHCA). We developed and administered two rounds of online surveys with survivors, family members and health care professionals to create the initial priority lists. From there we held a full-day in-person workshop to come to consensus on the top 10 priorities from a short list of 25. The workshop also included survivors, family members and health care professionals. Results: The initial survey yielded more than 425 responses and 1500 “questions”/comments from survivors, family members, lay responders, physicians, nurses, rehabilitation specialists, paramedics, etc. The second survey asked participants to rank a narrowed list of 125 questions. The final top 25 questions were brought to the in-person consensus meeting and a top 10 were selected. The results will be revealed publicly for the first time at the ReSS meeting. Conclusions: The JLA methodology is world-renowned for its rigor and we now have an official PSP on OHCA. This type of inclusive research priority setting provides crucial information for the AHA and the international resuscitation research community about where to invest our limited research resources. The results will also drive our community to include questions that matter to SCA survivors and their families in all of our work.

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