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Identifying and Prioritizing Gaps in Neuroendocrine Tumor Research: A Modified Delphi Process With Patients and Health Care Providers to Set the Research Action Plan for the Newly Formed Commonwealth Neuroendocrine Tumor Collaboration.

ABSTRACT: Neuroendocrine tumors (NETs) are a diverse group of malignancies that pose challenges common to all rare tumors. The Commonwealth Neuroendocrine Tumor Collaboration (CommNETS) was established in 2015 to enhance outcomes for patients with NETs in Canada, Australia, and New Zealand. A modified Delphi process was undertaken involving patients, clinicians, and researchers to identify gaps in NETs research to produce a comprehensive and defensible research action plan.A three-round modified Delphi process was undertaken with larger representation than usual for medical consensus processes. Patient/advocate and health care provider/researcher expert panels undertook Round 1, which canvassed 17 research priorities and 42 potential topics; in Round 2, these priorities were ranked. Round 3 comprised a face-to-face meeting to generate final consensus rankings and formulate the research action plan.The Delphi groups consisted of 203 participants in Round 1 (64% health care providers/researchers, 36% patient/advocates; 52% Canadian, 32% Australian, and 17% New Zealander), of whom 132 participated in Round 2. The top eight priorities were biomarker development; peptide receptor radionuclide therapy optimization; trials of new agents in advanced NETs; functional imaging; sequencing therapies for metastatic NETs, including development of validated surrogate end points for studies; pathologic classification; early diagnosis; interventional therapeutics; and curative surgery. Two major areas were ranked significantly higher by patients/advocates: early diagnosis and curative surgery. Six CommNETS working parties were established.This modified Delphi process resulted in a well-founded set of research priorities for the newly formed CommNETS collaboration by involving a large, diverse group of stakeholders. This approach to setting a research agenda for a new collaborative group should be adopted to ensure that research plans reflect unmet needs and priorities in the field.

SUBMITTER: Segelov E

PROVIDER: S-EPMC5560462 | biostudies-other | 2017 Aug

REPOSITORIES: biostudies-other

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Project description:Background and aimWhile many studies have examined outcome measurement as part of clinical trials and routine outcome collection at the person-level in alcohol and other drug (AOD) treatment services, there has been limited attention to measures required to assess performance at the service-level. In Australia, non-government services are primarily funded by government using public funds; however, there is no standardized approach to performance measurement. This study sought to establish a finite list of performance measures that represented consensus between funders, treatment providers and service-users.MethodA three-round Delphi process was undertaken with (i) funders of treatment (n = 10), (ii) treatment providers (n = 10) and (iii) treatment service-users (n = 10). Participants were asked to rate a range of measures on a 10-point Likert scale on how important they were to be included in contracts with funders. Measures with a median score > 7 and agreement among participants above 70% were the criteria for inclusion in the final set of measures. Qualitative data in the form of text responses provided by participants for their ratings in rounds 1 and 2 were also analysed.ResultsParticipants rated 93 measures in round 1, which reduced to 78 measures in round 2 and 32 measures in round 3. Fifteen service-level measures and two system-level measures met criteria for inclusion in the final set of performance measures. The final set of measures cover a range of measurement types: outcomes (n = 5), access (n = 3), structural (n = 3), experience (n = 2), input (n = 2), process (n = 1) and output (n = 1).ConclusionIn Australia, performance measures for alcohol and other drug treatment services that represent a consensus among service-users, providers and funders focus upon demonstrating accountability for public funds, improving services and communicating key measures of success to future service-users and the broader community.

Project description:BACKGROUND:The Delphi technique is a proven and reliable method to create common definitions and to achieve convergence of opinion. This study aimed to prioritize suicide prevention guideline recommendations and to develop a set of quality indicators (QIs) for suicide prevention in specialist mental healthcare. METHODS:This study selected 12 key recommendations from the guideline to modify them into QIs. After feedback from two face-to-face workgroup sessions, 11 recommendations were rephrased and selected to serve as QIs. Next, a Delphi study with the 11 QIs was performed to achieve convergence of opinion among a panel of 90 participants (23 suicide experts, 23 members of patients' advisory boards or experts with experiences in suicidal behavior and 44 mental healthcare professionals). The participants scored the 11 QIs on two selection criteria: relevance (it affects the number of suicides in the institution) and action orientation (institutions or professionals themselves can influence it) using a 5-point Likert scale. Also, data analysts working in mental healthcare institutions (MHIs) rated each QI on feasibility (is it feasible to monitor and extract from existing systems). Consensus was defined as 70% agreement with priority scores of four or five. RESULTS:Out of the 11 recommendations, participants prioritized five recommendations as relevant and action-oriented in optimizing the quality of care for suicide prevention: 1) screening for suicidal thoughts and behavior, 2) safety plan, 3) early follow-up on discharge, 4) continuity of care and 5) involving family or significant others. Only one of the 11 recommendations early follow-up on discharge reached consensus on all three selection criteria (relevance, action orientation, and feasibility). CONCLUSIONS:The prioritization of relevant and action-oriented suicide prevention guideline recommendations is an important step towards the improvement of quality of care in specialist mental healthcare.

Project description:BackgroundGaps continue to exist between research-based evidence and clinical practice. We surveyed health care providers in 10 low- and middle-income countries about their use of research-based evidence and examined factors that may facilitate or impede such use.MethodsWe surveyed 1499 health care providers practising in one of four areas relevant to the Millennium Development Goals (prevention of malaria, care of women seeking contraception, care of children with diarrhea and care of patients with tuberculosis) in each of China, Ghana, India, Iran, Kazakhstan, Laos, Mexico, Pakistan, Senegal and Tanzania.ResultsThe proportion of respondents who reported that research was likely to change their clinical practice if performed and published in their own country (84.6% and 86.0% respectively) was higher than the proportion who reported the same about research and publications from their region (66.4% and 63.1%) or from high-income countries (55.8% and 55.5%). Respondents who were most likely to report that the use of research-based evidence led to changes in their practice included those who reported using clinical practice guidelines in paper format (odds ratio [OR] 1.54, 95% confidence interval [CI] 1.03-2.28), using scientific journals from their own country in paper format (OR 1.70, 95% CI 1.26-2.28), viewing the quality of research performed in their country as above average or excellent (OR 1.93, 95% CI 1.16-3.22); trusting systematic reviews of randomized controlled trials (OR 1.59, 95% CI 1.08-2.35); and having easy access to the Internet (OR 1.90, 95% CI 1.19-3.02).InterpretationLocally conducted or published research has played an important role in changing the professional practice of health care providers surveyed in low- and middle-income countries. Increased investments in local research, or at least in locally adapted publications of research-based evidence from other settings, are therefore needed. Although access to the Internet was viewed as a significant factor in whether research-based evidence led to concrete changes in practice, few respondents reported having easy access to the Internet. Therefore, efforts to improve Internet access in clinical settings need to be accelerated.

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Identifying and Prioritizing Gaps in Neuroendocrine Tumor Research: A Modified Delphi Process With Patients and Health Care Providers to Set the Research Action Plan for the Newly Formed Commonwealth Neuroendocrine Tumor Collaboration.

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