Dataset Information

Towards a decision aid for self-tests: Users' experiences in The Netherlands.

ABSTRACT:

Background

Self-tests enable the identification of (risk factors for) diseases and are carried out on the user's initiative without medical indication or advice and often unaided by a health professional. They are frequently used, and their availability and usage are expected to grow. Self-testing has both advantages and disadvantages. Making a well-informed decision about whether to self-test and which self-test to use is of major importance.

Objective

To provide insights into the experiences of self-test users, identifying reasons to self-test and perceived (dis)advantages of using self-tests and the information highlighted as relevant by self-test users to make well-informed decisions.

Methods

In a qualitative study, 28 users of a wide variety of self-tests shared their experiences in focus groups and interviews.

Results

Perceived disadvantages of self-testing included the following: a wide range of available self-tests, lack of insights into their reliability and content, possibility of mistakes in administering them, possibility of false-positive and false-negative results, lack of clarity about how to interpret results and consequently what action to take and fear of not being taken seriously by a general practitioner. Self-test aspects that were viewed as most important include informed decision making, user-friendliness, usefulness and reliability of results.

Conclusion

A decision aid for future self-test users can help people make a deliberate decision on whether to use a self-test and which particular self-test to use from the wide range available. The government, health professionals, patient organizations, consumer organizations and citizens all have a role to play in the development and implementation of a decision aid.

SUBMITTER: den Oudendammer WM

PROVIDER: S-EPMC6803405 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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Publications

Towards a decision aid for self-tests: Users' experiences in The Netherlands.

den Oudendammer Willemijn M WM Broerse Jacqueline E W JEW

Health expectations : an international journal of public participation in health care and health policy 20190613 5

<h4>Background</h4>Self-tests enable the identification of (risk factors for) diseases and are carried out on the user's initiative without medical indication or advice and often unaided by a health professional. They are frequently used, and their availability and usage are expected to grow. Self-testing has both advantages and disadvantages. Making a well-informed decision about whether to self-test and which self-test to use is of major importance.<h4>Objective</h4>To provide insights into th ...[more]

PMID: 31195432

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Project description:BackgroundEvidence to Decision (EtD) frameworks bring clarity, structure and transparency to health care decision making. The interactive Evidence to Decision (iEtD) tool, developed in the context of the DECIDE project and published by Epistemonikos, is a stand-alone online solution for producing and using EtD frameworks. Since its development, little is known about how organizations have been using the iEtD tool and what characterizes users' experiences with it. This missing information is necessary for any teams planning future developments of the iEtD tool.MethodsThis study aimed to describe users' experiences with the iEtD and identify main barriers and facilitators related to use. We contacted all users registered in the iEtD via email and invited people who identified themselves as having used the solution to a semi-structured interview. Audio recordings were transcribed, and one researcher conducted a directed content analysis of the interviews guided by a user experience framework. Two researchers checked the content independently for accuracy.ResultsOut of 860 people contacted, 81 people replied to our introductory email (response rate 9.4%). Twenty of these had used the tool in a real scenario and were invited to an interview. We interviewed all eight users that accepted this invitation (from six countries, four continents). 'Guideline development' was the iEtD use scenario they most commonly identified. Most participants reported an overall positive experience, without major difficulties navigating or using the different sections. They reported having used most of the EtD framework criteria. Participants reported tailoring their frameworks, for instance by adding or deleting criteria, translating to another language, or rewording headings. Several people preferred to produce a Word version rather than working online, due to the burden of completing the framework, or lack of experience with the tool. Some reported difficulties working with the exportable formats, as they needed considerable editing.ConclusionA very limited number of guideline developers have used the iEtD tool published by Epistemonikos since its development. Although users' general experiences are positive, our work has identified some aspects of the tool that need improvement. Our findings could be also applied to development or improvement of other solutions for producing or using EtD frameworks.

Project description:BackgroundAcute trauma of the wrist is one of the most frequent reasons for visiting the Emergency Department. These patients are routinely referred for radiological examination. Most X-rays however, do not reveal any fractures. A clinical decision rule determining the need for X-rays in patients with acute wrist trauma may help to percolate and select patients with fractures.Methods/designThis study will be a multi-center observational diagnostic study in which the data will be collected cross-sectionally. The study population will consist of all consecutive adult patients (≥18 years) presenting with acute wrist trauma at the Emergency Department in the participating hospitals. This research comprises two components: one study will be conducted to determine which clinical parameters are predictive for the presence of a distal radius fracture in adult patients presenting to the Emergency Department following acute wrist trauma. These clinical parameters are defined by trauma-mechanism, physical examination, and functional testing. This data will be collected in two of the three participating hospitals and will be assessed by using logistic regression modelling to estimate the regression coefficients after which a reduced model will be created by means of a log likelihood ratio test. The accuracy of the model will be estimated by a goodness of fit test and an ROC curve. The final model will be validated internally through bootstrapping and by shrinking it, an adjusted model will be generated. In the second component of this study, the developed prediction model will be validated in a new dataset consisting of a population of patients from the third hospital. If necessary, the model will be calibrated using the data from the validation study.DiscussionWrist trauma is frequently encountered at the Emergency Department. However, to this date, no decision rule regarding this type of trauma has been created. Ideally, radiographs are obtained of all patients entering one of the participating hospitals with trauma to the wrist. However, this is ethically and logistically not feasible and one could argue that patients, for whom no radiography is required according to their physician, are not suspected of having a distal radius fracture and thus are not part of the domain.Trial registrationThis study is registered at the Netherlands Trial Register (NTR 2544) and was granted permission by the Medical Ethical Committee of the Academic Medical Center Amsterdam on 06-01-2011.

Project description:BackgroundSelf-binding directives (SBDs) are psychiatric advance directives that include the possibility for service users to consent in advance to compulsory care in future mental health crises. Legal provisions for SBDs exist in the Netherlands since 2008 and were updated in 2020. While ethicists and legal scholars have identified several benefits and risks of SBDs, few data on stakeholder perspectives on SBDs are available.AimsThe aim of the study was to identify opportunities and challenges of SBDs perceived by stakeholders who have personal or professional experience with legally enforceable SBDs.MethodsData collection was carried out in the Netherlands from February 2020 to October 2021 by means of semi-structured interviews. Participants were selected through purposive sampling and snowball methods. Interviews were conducted with mental health service users (n = 7), professionals (n = 13), and an expert on SBD policy (n = 1), resulting in a total number of 21 interviews. The data were analyzed thematically.ResultsPerceived benefits of SBDs included increased autonomy, improvement of the therapeutic relationship, possibility of early intervention and prevention of harm, prevention of compulsory care, reduction of the duration of compulsory care and recovery, mitigation of negative experiences around compulsory care, and guidance for professionals in providing compulsory care. Perceived risks included infeasibility of SBD instructions, difficulty in decision-making around SBD activation, limited accessibility of SBDs, disappointment of service users due to non-compliance with SBDs, and limited evaluation and updating of SBD content. Barriers to SBD completion included lack of knowledge of SBDs among professionals, lack of motivation or insight among service users, and lack of professional support for SBD completion. Facilitators of SBD completion and activation included support for SBD completion, involvement of relatives and peer experts, specification of SBD content, and evaluation of compulsory care and SBD content. The new legal framework was regarded as having both positive and negative effects on SBD implementation.ConclusionsStakeholders who have personal or professional experience with legally enforceable SBDs perceive SBDs as having important benefits and tend not to articulate the fundamental ethical concerns about SBDs which can be found in the ethics and legal literature. Instead, they perceive ethical and practical challenges that can be addressed through the implementation of suitable safeguards.

Dataset Information

Towards a decision aid for self-tests: Users' experiences in The Netherlands.

Background

Objective

Methods

Results

Conclusion

Publications

Towards a decision aid for self-tests: Users' experiences in The Netherlands.

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