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  • 1
    In: GeroPsych, Hogrefe Publishing Group
    Abstract: Abstract: Alzheimer’s disease (AD) prevention studies use biomarkers to determine risk in asymptomatic study participants. This involves multifaceted implications. Determinants regarding participation in these trials are therefore of particular relevance. We used semistructured individual interviews to interview uninvolved persons ( n = 10), relatives of Alzheimer’s patients ( n = 10), and patients with mild cognitive impairment ( n = 5) and analyzed the interviews using qualitative content analysis according to Mayring. We discovered various factors to be positive motivations for participation; the most significant inhibiting factor was concern about negative psychological effects. These motivations and concerns should be specifically addressed in the study design of AD prevention trials. The fears and concerns expressed highlight the importance of a good methodological and ethical framework to increase participant acceptance.
    Type of Medium: Online Resource
    ISSN: 1662-9647 , 1662-971X
    Language: English
    Publisher: Hogrefe Publishing Group
    Publication Date: 2023
    detail.hit.zdb_id: 2539807-6
    SSG: 5,2
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  • 2
    Online Resource
    Online Resource
    Wiley ; 2022
    In:  Movement Disorders Vol. 37, No. 6 ( 2022-06), p. 1327-1327
    In: Movement Disorders, Wiley, Vol. 37, No. 6 ( 2022-06), p. 1327-1327
    Type of Medium: Online Resource
    ISSN: 0885-3185 , 1531-8257
    URL: Issue
    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2022
    detail.hit.zdb_id: 2041249-6
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  • 3
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2021
    In:  Neurological Research and Practice Vol. 3, No. 1 ( 2021-12)
    In: Neurological Research and Practice, Springer Science and Business Media LLC, Vol. 3, No. 1 ( 2021-12)
    Abstract: Medical progress, economization of healthcare systems, and scarcity of resources raise fundamental ethical issues. Physicians are exposed to increasing moral conflict situations, which may cause Moral Distress (MD). MD occurs when someone thinks he or she might know the morally correct action but cannot act upon this knowledge because of in- or external constraints. Correlations of MD among residents to job changes and burn-out have been shown previously. There are, however, hardly any quantitative studies about MD among physicians in Germany. The aim of this study was to investigate the frequency of occurrence, the level of disturbance, and reasons for MD among neurological residents in German hospitals. Methods 1st qualitative phase: Open interviews on workload and ethical conflicts in everyday clinical practice were conducted with five neurological residents. Ethical principles of medical action and potential constraints that could cause MD were identified and a questionnaire designed. 2nd quantitative phase: A preliminary questionnaire was tested and evaluated by five further neurological residents. The final questionnaire consisted of 12 items and was conducted online and anonymously via e-mail or on-site as part of an unrelated resident training event at 56 sites. Results One hundred seven neurological residents from 56 university/acute care and rehabilitation hospitals throughout Germany were examined (response rate of those requesting the questionnaire: 75.1%). 96.3% of the participants had experienced MD weekly (3.86, SD 1.02), because they were unable to invest the necessary time in a patient or relative consultation. Errors in medical care, which could not be communicated adequately with patients or relatives, were rated as most distressing. The most common reasons for MD were the growing numbers of patients, expectations of patient relatives, fears of legal consequences, incentives of the DRG-system, and the increasing bureaucratization requirement. 43.0% of participants mentioned they considered leaving the field of inpatient-care. 65.4% stated they would like more support in conflict situations. Conclusion MD plays an important role for neurological residents in German hospitals and has an impact on participants’ consideration of changing the workplace. Important aspects are rationing (time/beds) and incentives for overdiagnosis as well as lack of internal communication culture and mentoring.
    Type of Medium: Online Resource
    ISSN: 2524-3489
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2947493-0
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  • 4
    Online Resource
    Online Resource
    Wiley ; 2021
    In:  Movement Disorders Vol. 36, No. 12 ( 2021-12), p. 2833-2839
    In: Movement Disorders, Wiley, Vol. 36, No. 12 ( 2021-12), p. 2833-2839
    Abstract: Impressive progress in the understanding of the prodromal phase of Parkinson's disease (PD) in recent years has enabled the generation of disease prediction models. However, a remaining diagnostic uncertainty and lack of therapeutic options for affected individuals has resulted in a variety of ethical issues that have not to date been addressed sufficiently. Moreover, differences in the specificity of prodromal symptoms and possible subtypes of PD, especially the presence of rapid eye movement (REM) sleep behavior disorder (RBD), may have an important impact on prognostic counseling. Objectives To derive a guideline for risk disclosure in prodromal PD based on the current literature and expert opinion. Methods We performed (1) a literature review on prognostic counseling in PD and (2) consulted with international experts on prodromal PD using a semi‐structured questionnaire based on a Delphi approach to evaluate recommendations for risk disclosure in PD. Results The l iterature research revealed only 11 publications addressing prognostic counseling, with only two studies directly addressing affected individuals and most studies focusing on risk disclosure in RBD. The expert survey revealed the importance of distinguishing between individuals with and without RBD in prognostic counseling. Conclusions Based on the current literature and expert recommendations, a guideline for risk disclosure in prodromal PD for clinical care and research could be elaborated. Prognostic counseling should include differentiation between individuals with and without RBD, taking into account the high uncertainty of risk calculation in RBD‐negative prodromal PD. © 2021 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society
    Type of Medium: Online Resource
    ISSN: 0885-3185 , 1531-8257
    URL: Issue
    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 2041249-6
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  • 5
    Online Resource
    Online Resource
    Ovid Technologies (Wolters Kluwer Health) ; 2020
    In:  Neurology Vol. 94, No. 19 ( 2020-05-12)
    In: Neurology, Ovid Technologies (Wolters Kluwer Health), Vol. 94, No. 19 ( 2020-05-12)
    Type of Medium: Online Resource
    ISSN: 0028-3878 , 1526-632X
    RVK:
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2020
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