Partizipative Entscheidungsfindung (PEF) – Patient und Arzt als Team

Bieber, Christiane; Gschwendtner, Kathrin; Müller, Nicole; Eich, Wolfgang

doi:10.1055/s-0043-106018

Cited by 12 publications

(9 citation statements)

References 32 publications

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“… 59 Shared decision-making is based on a process by which patients and health-care providers meet as equals and share responsibility for their final agreement. 60 It goes along with less pronounced decisional conflict and increased patient satisfaction. 61 Shared decision-making communication skills training courses for health-care providers have been developed, although their effectiveness is still underresearched and their implementation still insufficient.…”

Section: Discussionmentioning

confidence: 99%

“… 61 Shared decision-making communication skills training courses for health-care providers have been developed, although their effectiveness is still underresearched and their implementation still insufficient. 60 , 62 , 63 Shared decision-making tools have also been developed for dsd conditions such as CAIS and CAH, and their generalizability and applicability need to be researched. 64 , 65 …”

Section: Discussionmentioning

confidence: 99%

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Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent

2020

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Introduction: Diverse sex development (dsd) is an umbrella term for different congenital conditions with incongruence of chromosomal, gonadal, and phenotypic sex characteristics. These are accompanied by various uncertainties concerning health-related, medical, psychosocial, and legal issues that raise controversial discussion. Aim: The aim of this exploratory study was to investigate 3 questions: What are the most controversial and disputed issues in the context of intersex/dsd? Which issues are associated with the biggest knowledge gaps? Which issues involve the greatest difficulty or uncertainty in decision-making? A further aim was to investigate whether the group of persons concerned, the parents of intersex children, and the group of experts in the field had differing views regarding these questions. Methods: A self-developed questionnaire was distributed among persons concerned, parents of children with intersex/dsd, and experts in the field. It contained open and multiple-choice questions. The answers from 29 participants were entered into data analysis. A mixed-method approach was applied. Quantitative data were analysed descriptively. Qualitative data were analysed according to the principles of qualitative content analysis. Main Outcome Measure: Participants answered questions on the most controversial and disputed issues, issues associated with the biggest knowledge gaps, and issues associated with the most difficulty or uncertainty in decision-making. Results: The findings indicate that controversial issues and uncertainties mainly revolve around surgical interventions but also around the question of how to adequately consider the consent of minors and how to deal with intersex in the family. Significant differences were found between persons concerned and parents vs academic experts in the field regarding the perceptions of procedure of diagnostic investigation and/or treatment in adulthood, on legal questions concerning marriage/registered civil partnerships, and on lack of psychosocial counseling close to place of residence. Conclusion: The necessity of irreversible gonadal and genital surgery in early childhood is still a matter of strong controversy. To ensure the improvement in well-being of intersex persons, including a sexual health perspective, the positive acceptance of bodily variance is an important prerequisite. Psychosocial support regarding one-time decisions as well as ongoing and changing issues of everyday life appears to be an important means in reaching overall quality of life. Lampalzer U, Briken P, Schweizer K. Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent-A Pilot Study. Sex Med 2020;8:472e489.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent

2020

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“…In our experience, this is often the case. Bringing patients' perspectives and needs into the decision on when and how to stop treatment can promote better patient understanding of the process, better risk perception, and more realistic expectations [40,41]. Good communication is key.…”

Section: How To Discontinue Treatment In Csu Patients With Complete R...mentioning

confidence: 99%

Stepping Down Treatment in Chronic Spontaneous Urticaria: What We Know and What We Don’t Know

et al. 2023

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In chronic spontaneous urticaria (CSU), wheals, angioedema, or both appear spontaneously for > 6 weeks. Current recommended treatment options for urticaria target mast cell mediators such as histamine, or activators, such as autoantibodies. The goal of CSU treatment is to treat the disease until it is gone as effectively and safely as possible. As no cure is available for CSU as of now, the treatment is aimed at continuously suppressing disease activity, with complete control of the disease and a normalization of quality of life. To achieve this, pharmacological treatment should be continued until no longer needed. Treatment of CSU should follow the basic principles of treating as much as needed and as little as possible taking into consideration that the activity of the disease may vary. Since CSU is a disease with spontaneous remission, it is hard to tell, in patients with complete control and no signs or symptoms, when medication is no longer needed. The current international guideline for urticaria suggests that the treatment can be stepped down once a patient is free of signs and symptoms. Other reasons for stepping down the treatment of CSU patients include safety concerns or issues, pregnancy or wanting to become pregnant, and economic factors. As of now, it is unclear over which period, with what intervals and with which dosages CSU treatment should be stepped down. Guidance on this is needed for all recommended therapies: (i) standard-dosed secondgeneration H1-antihistamine (sgAH), (ii) higher than standard-dosed sgAH, (iii) standard-dosed omalizumab, (iv) higher than standard-dosed omalizumab, and (v) cyclosporine. However, there is a lack of controlled trials on the step down and discontinuation of these treatments. Here, we aim to provide a summary of what is known and what needs to be investigated in further studies, based on our own experience and real-world evidence.

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“…With the growing number of oral cancer drugs, adherence is becoming a central topic of concern in cancer care. For the reasons described above, it is strongly believed that adherence may be higher for well-informed patients and after shared decisionmaking [2,5]. One decisive prerequisite is that patients have access to high-quality information [6].…”

Section: Introductionmentioning

confidence: 99%

Internet Information on Oral Cancer Drugs: a Critical Comparison between Website Providers

et al. 2020

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Cancer patients need access to high-quality information, when making decisions about oral cancer drugs. The internet is often used as a source of information published by highly heterogeneous providers. The objective was to evaluate the quality of website providers supplying online information about oral cancer drugs. One hundred websites were analyzed using content-related and formal criteria, selected from three existing evaluation methods used for cancer websites, for medical information (defined by the German Agency for Quality in Medicine), and for the “fact box” tool. A web search by a patient was simulated to identify websites to evaluate. ANOVA was used to assess information provided by non-profit organizations (governmental and non-governmental), online newspapers, for-profit organizations, and private/unknown providers. Content-related quality differences were found between online newspapers and all other categories, with online newspapers ranking significantly lower than for-profit and non-profit websites. As for formal criteria, for-profit providers scored significantly lower than non-profit providers and online newspapers for the aspect of transparency. Internet information on oral cancer drugs published by non-profit organizations constitutes the best available web-based source of information for cancer patients. Health literacy and e-health literacy should be promoted in the public domain to allow patients to reliably apply web-based information. Certification should be required by law to ensure fulfillment of requirements for data reliability and transparency (authorship and funding) before health professionals recommend websites to cancer patients.

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Partizipative Entscheidungsfindung (PEF) – Patient und Arzt als Team

Cited by 12 publications

References 32 publications

Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent

Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent

Stepping Down Treatment in Chronic Spontaneous Urticaria: What We Know and What We Don’t Know

Internet Information on Oral Cancer Drugs: a Critical Comparison between Website Providers

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