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I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis.

ABSTRACT: OBJECTIVE:Little is known about the experiences, values, and needs of people without arthritis who undergo predictive biomarker testing for the development of rheumatoid arthritis (RA). Our study aimed to explore the perspectives of these individuals and describe their information needs. METHODS:A qualitative, multicenter interview study with a thematic analysis was conducted in Austria, Germany and the UK. Individuals were interviewed who underwent predictive biomarker testing for RA and had a positive test result but no diagnosis of any inflammatory joint disease. Participants included patients with arthralgia and asymptomatic individuals. Information and education needs were developed from the qualitative codes and themes using the Arthritis Educational Needs Assessment Tool as a frame of reference. RESULTS:Thematic saturation was reached in 34 individuals (76% female, 24 [71%] with arthralgia, and 10 [29%] asymptomatic individuals). Thirty-seven codes were summarized into 4 themes: 1) decision-making around whether to undergo initial predictive testing, 2) willingness to consider further predictive tests, and/or 3) preventive interventions, including medication, and 4) varying reactions after receiving a positive test result. Individuals with arthralgia were more likely to be willing to take preventive action, undergo further testing, and experience psychological distress than asymptomatic individuals. All participants expressed the need for tailored, patient-understandable information. CONCLUSION:Individuals at risk of RA are currently the subjects of research aimed at developing better predictive strategies and preventive approaches. Their perceptions and needs should be addressed to inform the future development of interventions combined with education.

SUBMITTER: Mosor E

PROVIDER: S-EPMC7064954 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundThere is increasing research interest in the development of preventive treatment for individuals at risk of rheumatoid arthritis (RA). Previous studies have explored the perceptions of at-risk groups and patients about predictive and preventive strategies for RA, but little is known about health care professionals' (HCPs) perspectives.MethodsOne-to-one semi-structured qualitative interviews were conducted (face-to-face or by telephone) with HCPs. Audio recordings of the interviews were transcribed, and the data were analysed by thematic analysis.ResultsNineteen HCPs (11 female) were interviewed, including ten GPs, six rheumatologists and three rheumatology nurse specialists. The thematic analysis identified four organising themes: 1) Attributes of predictive and preventive approaches; 2) Ethical and psychological concerns; 3) Implementation issues and 4) Learning from management of other conditions. Theme 1 described necessary attributes of predictive and preventive approaches, including the type and performance of predictive tools, the need for a sound evidence base and consideration of risks and benefits associated with preventive treatment. Theme 2 described the ethical and psycho-social concerns that interviewees raised, including the potential negative economic, financial and psychological effects of risk disclosure for 'at-risk' individuals, uncertainty around the development of RA and the potential for benefit associated with the treatments being considered. Theme 3 describes the implementation issues considered, including knowledge and training needs, costs and resource implications of implementing predictive and preventive approaches, the role of different types of HCPs, guidelines and tools needed, and patient characteristics relating to the appropriateness of preventive treatments. Theme 4 describes lessons that could be learned from interviewees' experiences of prediction and prevention in other disease areas, including how preventive treatment is prescribed, existing guidelines and tools for other diseases and issues relating to risk communication.ConclusionsFor successful implementation of predictive and preventative approaches in RA, HCPs need appropriate training about use and interpretation of predictive tools, communication of results to at-risk individuals, and options for intervention. Evidence of cost-efficiency, appropriate resource allocation, adaptation of official guidelines and careful consideration of the at-risk individuals' psycho-social needs are also needed.

Project description:The survey had the following aims(1) to rationalise the hypothesis that risks and losses relating to medication process' errors in Czech hospitals are at least comparable with the other developed countries and EU countries especially, (2) to get a valid professional opinion/estimate on the rate of adverse drug events happening in Czech hospitals, (3) to point out that medication errors represent real and serious risks and (4) to induce the hospital management readiness to execute fundamental changes and improvements to medication processes. We read through a lot of studies inquiring into hospitals' medication safety. Then, we selected the studies which brought reliable findings and formulated credible conclusions. Finally, we addressed reputable Czech experts in health care and asked them structured questions whether the studies' findings and conclusions corresponded with our respondents' own experience in the Czech hospital clinical practice and what their own estimates of adverse drug events' consequences were like. Based on the reputable Czech health care expert opinions/estimates, the rate of a false drug administration may exceed 5%, and over 7% of those cause serious health complications to Czech hospital inpatients. Measured by an average length of stay (ALOS), the Czech inpatients, harmed by a false drug administration, stay in hospital for more than 2.6?days longer than necessary. Any positive changes to a currently used, traditional, ways of drug dispensing and administration, along with computerisation, automation, electronic traceability, validation, or verification, must well pay off. Referring to the above results, it seems to be wise to follow the EU priorities in health and health care improvements. Thus, a right usage of the financial means provided by the EC-in terms of its new health programmes for the period 2014-2020 (e.g. Horizon 2020)-has a good chance of a good result in doing the right things right, at the right time and in the right way. All citizens of the EU may benefit using the best practice.

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I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis.

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