scholarly journals 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

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.

scholarly journals Exploring health professionals understanding of evidence based treatment for idiopathic toe walking: a cross-sectional study.

2019 ◽  
Author(s):  
Cylie Williams ◽  
Kelly Gray ◽  
Nina Davies ◽  
Marybeth Barkocy ◽  
Michael Fahey ◽  
...  
Keyword(s):  
Health Professionals ◽  
Online Survey ◽  
Full Range ◽  
Treatment Strategies ◽  
Kappa Statistics ◽  
Evidence Based ◽  
Evidence Based Treatment ◽  
Idiopathic Toe Walking ◽  
Kappa Agreement ◽  
Toe Walking

Abstract Background Idiopathic toe walking (ITW) is an exclusionary diagnosis and varies in severity, from those children with full range of ankle motion, to those with associated ankle equinus. In the absence of a consensus in the treatment for this gait pattern, many clinicians are faced with challenges in understanding available evidence-based treatment options. The research aim was to understand agreement between health professionals’ knowledge of evidence for common treatment strategies for idiopathic toe walking (ITW) and if health professionals supported these strategies being used in clinical practice. Methods: An international online survey was opened to registered health professionals who treat children with ITW between July 2017 and March 2018. The survey had two components: 1) demographic variables and variables relating to knowledge of evidence about ITW treatments and 2) support for common treatment strategies. Additional data on strategy use, referrals, and preference were collected. Kappa statistics described intra-rater agreement between evidence knowledge and support. Multivariable regression analyses identified factors associated with the 10 most commonly preferred treatments. Results: There were 908 international responses. Kappa agreement for paired correct responses determined a fair agreement for evidence support knowledge for four strategies including Watch and Wait (Kappa=0.24), Stretching (Kappa=0.30), Sensory Integration Strategies (Kappa=0.40) and Motor Control Strategies (Kappa =0.24) and moderate responses for thirteen others. No strategies had greater than moderate agreement between correct knowledge of evidence and strategy support. Profession, location, number of children seen in practice, and not correctly identifying the evidence factored into many of the most commonly used strategies for ITW (p<0.05). Conclusions: The results from this study confirm a variety of interventions are utilised in the management of ITW around the world. Furthermore, there remains a disconnect between clinicians understanding of the evidence of common treatment strategies of ITW and a consensus for the treatment of this condition.

scholarly journals ICON 2019—International Scientific Tendinopathy Symposium Consensus: There are nine core health-related domains for tendinopathy (CORE DOMAINS): Delphi study of healthcare professionals and patients

2019 ◽  
Vol 54 (8) ◽  
pp. 444-451 ◽  
Author(s):  
Bill Vicenzino ◽  
Robert-Jan de Vos ◽  
Hakan Alfredson ◽  
Roald Bahr ◽  
Jill L Cook ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Delphi Study ◽  
Online Survey ◽  
Healthcare Professionals ◽  
Sensory Modality ◽  
Consensus Meeting ◽  
Response Options ◽  
Patient Rating ◽  
Wide Range ◽  
Health Related

BackgroundThe absence of any agreed-upon tendon health-related domains hampers advances in clinical tendinopathy research. This void means that researchers report a very wide range of outcome measures inconsistently. As a result, substantial synthesis/meta-analysis of tendon research findings is almost futile despite researchers publishing busily. We aimed to determine options for, and then define, core health-related domains for tendinopathy.MethodsWe conducted a Delphi study of healthcare professionals (HCP) and patients in a three-stage process. In stage 1, we extracted candidate domains from clinical trial reports and developed an online survey. Survey items took the form: ‘The ‘candidate domain’ is important enough to be included as a core health-related domain of tendinopathy’; response options were: agree, disagree, or unsure. In stage 2, we administered the online survey and reported the findings. Stage 3 consisted of discussions of the findings of the survey at the ICON (International Scientific Tendinopathy Symposium Consensus) meeting. We set 70% participant agreement as the level required for a domain to be considered ‘core’; similarly, 70% agreement was required for a domain to be relegated to ‘not core’ (see Results next).ResultsTwenty-eight HCP (92% of whom had >10 years of tendinopathy experience, 71% consulted >10 cases per month) and 32 patients completed the online survey. Fifteen HCP and two patients attended the consensus meeting. Of an original set of 24 candidate domains, the ICON group deemed nine domains to be core. These were: (1) patient rating of condition, (2) participation in life activities (day to day, work, sport), (3) pain on activity/loading, (4) function, (5) psychological factors, (6) physical function capacity, (7) disability, (8) quality of life and (9) pain over a specified time. Two of these (2, 6) were an amalgamation of five candidate domains. We agreed that seven other candidate domains were not core domains: range of motion, pain on clinician applied test, clinical examination, palpation, drop out, sensory modality pain and pain without other specification. We were undecided on the other five candidate domains of physical activity, structure, medication use, adverse effects and economic impact.ConclusionNine core domains for tendon research should guide reporting of outcomes in clinical trials. Further research should determine the best outcome measures for each specific tendinopathy (ie, core outcome sets).

scholarly journals Consensus-Based Core Set of Outcome Measures for Clinical Motor Rehabilitation After Stroke—A Delphi Study

2020 ◽  
Vol 11 ◽  
Author(s):  
Johannes Pohl ◽  
Jeremia Philipp Oskar Held ◽  
Geert Verheyden ◽  
Margit Alt Murphy ◽  
Stefan Engelter ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Delphi Study ◽  
Motor Rehabilitation ◽  
Core Set

Exploring health professionals' understanding of evidence‐based treatment for idiopathic toe walking

2020 ◽  
Vol 46 (3) ◽  
pp. 310-319 ◽  
Author(s):  
Cylie M. Williams ◽  
Kelly Gray ◽  
Nina Davies ◽  
Marybeth Barkocy ◽  
Michael Fahey ◽  
...  
Keyword(s):  
Health Professionals ◽  
Evidence Based ◽  
Evidence Based Treatment ◽  
Idiopathic Toe Walking ◽  
Toe Walking

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

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.

scholarly journals American and Australian family experiences while receiving a diagnosis or having treatment for idiopathic toe walking: a qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e035965
Author(s):  
Cylie Williams ◽  
Kristy Robson ◽  
Verity Pacey ◽  
Kelly Gray
Keyword(s):  
Qualitative Study ◽  
Health Professionals ◽  
Interpretative Phenomenological Analysis ◽  
Treatment Options ◽  
Australian Family ◽  
Semistructured Interviews ◽  
Idiopathic Toe Walking ◽  
The Usa ◽  
The Impact ◽  
Toe Walking

ObjectiveTo understand parent journeys while navigating diagnosis, assessment or treatment of their children with idiopathic toe walking (ITW).DesignMixed methods qualitative study: analyses of survey data from the measure of processes of care-20 (MPOC-20) and semistructured interviews were analysed with an interpretative phenomenological analysis approach. Trustworthiness of data was achieved through member checking, researcher triangulation, reflexivity and transferability and comparison with the MPOC-20 results.SettingUSA and Australia.ParticipantsParents of children diagnosed with ITW who had seen more than one health professional during their care and lived in Australia or the USA.ResultsTen parents of children aged between 3 and 13 years and diagnosed with ITW participated. Parents described complex themes relating to their journeys. The themes relating to their journeys were: (1) riding the rollercoaster of diagnosis; (2) navigating the treatment options and (3) supporting parents in the journey. Each theme was supported by parent quotes about their experiences. Challenges were not localised to one country, in spite of vastly different healthcare systems.ConclusionsThese findings create opportunities for an international approach to education, treatment recommendations and outcome measures to improve patient and parent experiences. Health professionals should consider the impact on parents in navigating between health professionals when provided with a diagnosis which can have variable outcomes and varied treatment options.

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

2021 ◽  
Vol 9 (2) ◽  
pp. e002570
Author(s):  
Byron M Perrin ◽  
Anita Raspovic ◽  
Cylie M Williams ◽  
Stephen M Twigg ◽  
Jonathan Golledge ◽  
...  
Keyword(s):  
Peripheral Neuropathy ◽  
Health Economics ◽  
Health Professionals ◽  
Delphi Study ◽  
Online Survey ◽  
Future Research ◽  
Foot Health ◽  
Health And Disease ◽  
Research Questions ◽  
Foot Disease

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.

scholarly journals Corrigendum: Consensus-Based Core Set of Outcome Measures for Clinical Motor Rehabilitation After Stroke—A Delphi Study

2021 ◽  
Vol 12 ◽  
Author(s):  
Johannes Pohl ◽  
Jeremia Philipp Oskar Held ◽  
Geert Verheyden ◽  
Margit Alt Murphy ◽  
Stefan Engelter ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Delphi Study ◽  
Motor Rehabilitation ◽  
Core Set

scholarly journals AB1335-HPR HEALTH PROFESSIONALS’ PERSPECTIVE ON THE BENEFITS AND RISKS OF LOW-DOSE GLUCOCORTICOIDS IN RHEUMATOID ARTHRITIS – AN INTERNATIONAL SURVEY OF 444 HEALTH PROFESSIONALS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1955.1-1956
Author(s):  
T. Santiago ◽  
M. Voshaar ◽  
M. De Wit ◽  
P. Carvalho ◽  
M. Boers ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Adverse Events ◽  
Health Professionals ◽  
Patient Perspective ◽  
Online Survey ◽  
Low Dose ◽  
Low Doses ◽  
Research Support ◽  
Serious Adverse Events ◽  
Patient Organizations

Background:The Glucocorticoid Low-dose Outcome in Rheumatoid Arthritis Study (GLORIA) is an international investigator-initiated pragmatic randomized trial designed to study the effects of low-dose glucocorticoids (GCs) in elderly patients with Rheumatoid Arthritis (RA).The research team is also committed to promote a better understanding of the risks and benefits of these drugs among health professionals and patients. In order to achieve these goals, it is important to assess the current ideas and concerns of patients regarding GCs.Objectives:To evaluate the current patient perspective on the efficacy and risks of GCs in RA patients who are or have been treated with GCs.Methods:Patients with RA completed an online survey (with 5 closed questions regarding efficacy and safety) presented in their native language. RA patients were recruited through a variety of patient organizations representing three continents. Patients were invited to participate through national patient organizations. In the USA, patients were also invited to participate through MediGuard.org. Participants were asked for their level of agreement on a 5-point Likert scale.Results:1344 RA patients with exposure to GCs, from Brazil, USA, UK, Portugal, Netherlands, Germany and 24 other countries** participated: 89% female, mean age (SD) 52 (14) years and mean disease duration 13 (11) years. The majority of participants (84%) had ≥10 years of education. The duration of GCs exposure was 1.6 (4.2) years. The majority of participants had read articles or pamphlets on the benefits or harms of GC therapy.Regarding GCs efficacy (table 1), high levels of endorsement were found: about 2/3 of patients considered that GCs as very useful in their case, more than half considered that GCs were effective even at low doses, and agreed that GC improved RA symptoms within days.Regarding safety (table 1), 1/3 of the participants reported having suffered some form of serious adverse events (AEs) due to GCs, and 9% perceived this as “life-threatening. Adverse events had a serious impact on quality of life, according to about 1/3 of the respondents.Conclusion:Patients with RA exposed to GC report a strong conviction that GCs are very useful and effective for the treatment of their RA, even at low doses. This is accompanied by an important prevalence of serious AEs. Understanding the patient perspective can improve shared decision-making between patient and rheumatologist.Funding statement:This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 634886.Disclosure of Interests:Tânia Santiago: None declared, Marieke Voshaar Grant/research support from: part of phd research, Speakers bureau: conducting a workshop (Pfizer), Maarten de Wit Grant/research support from: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Consultant of: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Speakers bureau: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Pedro Carvalho: None declared, Maarten Boers: None declared, Maurizio Cutolo Grant/research support from: Bristol-Myers Squibb, Actelion, Celgene, Consultant of: Bristol-Myers Squibb, Speakers bureau: Sigma-Alpha, Frank Buttgereit Grant/research support from: Amgen, BMS, Celgene, Generic Assays, GSK, Hexal, Horizon, Lilly, medac, Mundipharma, Novartis, Pfizer, Roche, and Sanofi., José Antonio P. da Silva Grant/research support from: Pfizer, Abbvie, Consultant of: Pfizer, AbbVie, Roche, Lilly, Novartis

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