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International physician survey on management of FOP: a modified Delphi study.

ABSTRACT: Fibrodysplasia ossificans progressiva (FOP), a disabling disorder of progressive heterotopic ossification (HEO), is caused by heterozygous gain-of- function mutations in Activin receptor A, type I (ACVR1, also known as ALK2), a bone morphogenetic protein (BMP) type I receptor. Presently, symptomatic management is possible, but no definitive treatments are available. Although extensive guidelines for symptomatic management are widely used, regional preferences exist. In order to understand if there was worldwide consensus among clinicians treating FOP patients, an expert panel of physicians directly involved in FOP patient care was convened. Using a modified Delphi method, broad international consensus was reached on four main topics: diagnosis, prevention of flare-ups, patient and family-centered care and general clinical management issues. This study of physician preferences provides a basis for standardization of clinical management for FOP.

SUBMITTER: Di Rocco M

PROVIDER: S-EPMC5468985 | biostudies-literature | 2017 Jun

REPOSITORIES: biostudies-literature

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International physician survey on management of FOP: a modified Delphi study.

Di Rocco Maja M Baujat Genevieve G Bertamino Marta M Brown Matthew M De Cunto Carmen L CL Delai Patricia L R PLR Eekhoff Elisabeth M W EMW Haga Nobuhiko N Hsiao Edward E Keen Richard R Morhart Rolf R Pignolo Robert J RJ Kaplan Frederick S FS

Orphanet journal of rare diseases 20170612 1

Fibrodysplasia ossificans progressiva (FOP), a disabling disorder of progressive heterotopic ossification (HEO), is caused by heterozygous gain-of- function mutations in Activin receptor A, type I (ACVR1, also known as ALK2), a bone morphogenetic protein (BMP) type I receptor. Presently, symptomatic management is possible, but no definitive treatments are available. Although extensive guidelines for symptomatic management are widely used, regional preferences exist. In order to understand if the ...[more]

PMID: 28606101

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Project description:IntroductionExercise is vital to health and well-being after a cancer diagnosis yet is poorly integrated in cancer care. Knowledge mobilization (KM) is essential to enhance exercise opportunities. We aimed to (1) develop and refine a list of highly important exercise oncology research and KM themes and (2) establish the relative importance of the themes for supporting the implementation of exercise as a standard of care for people living with and beyond cancer.MethodsInformed by the Co-Produced Pathway to Impact KM framework, a modified Delphi study approach was used to develop, rate, and rank exercise oncology research and KM themes through an international stakeholder workshop and a three-round iterative online survey. Open-ended stakeholder feedback from cancer survivors, healthcare practitioners (HCPs), qualified exercise professionals (QEPs), policy makers, and researchers was used to update themes between survey rounds. Themes were ranked from highest to lowest importance and agreement was examined across all stakeholders and within stakeholder groups.ResultsA total of 269 exercise oncology stakeholders from 13 countries participated in the study. Twelve final exercise oncology research and KM themes were produced. The final top ranked research themes were related to: (1) QEP integration into primary cancer care teams, (2) Exercise oncology education for HCPs, and (3) Accessibility of cancer exercise programs & support services. There was statistically significant agreement between stakeholders (p<0.001) and within stakeholder groups (p's≤0.02) on the general rankings of themes (i.e., some themes generally ranked higher and lower compared to others). Low Kendall's W statistics indicated variability related to the specific ranked order of the themes between stakeholders and within stakeholder groups. Moreover, there were key differences in the rankings for specific themes between policy makers and other stakeholder groups that highlight potentially important discordance in the research and KM priorities for policy makers that warrants further study.ConclusionThese findings can be used to guide initiatives and align stakeholders on priorities to support exercise implementation as a standard of cancer care. Additional research is needed to better understand the differences in the proposed research and KM priorities across stakeholders.

Project description:BackgroundCompetency based curricula across the globe stress on the importance of effective physician patient communication. A variety of courses have been used to train physicians for this purpose. However, few of them link competencies with practice resulting in confusions in implementation and assessment. This issue can be resolved by treating certain specific patient communication related tasks as acts of entrustment or entrustable professional activities (EPAs). In this study, we aimed to define a competency-based framework for assessing patient physician communication using the language of EPAs.MethodsA modified Delphi study was conducted in three stages. The first stage was an extensive literature review to identify and elaborate communication related tasks which could be treated as EPAs. The second stage was content validation by medical education experts for clarity and representativeness. The third stage was three iterative rounds of modified Delphi with predefined consensus levels. The McNemar test was used to check response stability in the Delphi Rounds.ResultsExpert consensus resulted in development of 4 specific EPAs focused on physician-patient communication with their competencies and respective assessment strategies all aiming for level 5 of unsupervised practice. These include Providing information to the patient or their family about diagnosis or prognosis; Breaking Bad news to the patient or their family; Counseling a patient regarding their disease or illness; Resolving conflicts with patients or their families.ConclusionsThe EPAs for Physician-patient communication are a step toward an integrative, all-inclusive competency-based assessment framework for patient-centered care. They are meant to improve the quality of physician patient interaction by standardizing communication as a decision of entrustment. The EPAs can be linked to competency frameworks around the world and provide a useful assessment framework for effective training in patient communication. They can be integrated into any post graduate curriculum and can also serve as a self-assessment tool for postgraduate training programs across the globe to improve their patient communication curricula.

Project description:ObjectiveTo develop recommendations regarding opportunities and barriers for nature-based care in oncology contexts using a structured knowledge generation process involving relevant healthcare and design experts.DesignFour-round modified electronic Delphi study. Oncology patients' nature-based recommendations, uncovered in preceding qualitative investigation, were included in the first round for the expert participants' consideration. Key items (opportunities and barriers) were developed using data aggregation and synthesis, followed by item prioritisation and 10-point Likert scale ranking (1=not important, 10=very important). Descriptive statistics were calculated to assess items of highest importance representing expert recommendations.ContextOnline Delphi process constituting an electronic international survey.ParticipantsA purposive sample of 200 potential panellists (recruitment target n=40) comprising healthcare practitioners, managers, designers, architects and researchers were invited to participate; experts were identified via research networks, snowballing and systematic literature review.Results38 experts across seven countries (Australia, USA, UK, New Zealand, Canada, Denmark and Sweden) returned questionnaire 1, which determined consent and acceptance for participation. Initial response rate was 19%, and subsequent response rates were 84%, 82% and 84% for rounds 2, 3 and 4, respectively. The Delphi panel developed recommendations consisting of 10 opportunities and 10 barriers. The following opportunities were rated to be of highest importance: window views from clinical areas onto nature; outdoor settings, gardens and courtyards with easy and effortless access; and nature-based physical exercise adapted to patient requirements. Highest-rated barriers for nature-based oncology care included lack of knowledge and awareness about benefits of nature engagement and inaccessibility, not considering access requirements for the very sick and frail.ConclusionsExperts suggested and agreed on a set of recommendations, which represent critical considerations for the safe adoption of nature-based oncology opportunities. These findings fill a gap in understanding about helpful nature-based oncology care and may translate into oncology design and innovation.

Dataset Information

International physician survey on management of FOP: a modified Delphi study.

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International physician survey on management of FOP: a modified Delphi study.

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