Search results for: Gyorgi B. Halmos

Authors: Anne N. Heirman, Song Duimel, Rob van Son, Lisette van der Molen, Richard Dirven, Gyorgi B. Halmos, Julia van Weert, Michiel W.M. van den Brekel

Abstract:

Objectives: Treatments for head-neck cancer are drastic and often significantly impact the quality of life and appearance of patients. Shared decision-making (SDM) beholds a collaboration between patient and doctor in which the most suitable treatment can be chosen by integrating patient preferences, values, and medical information. SDM has a lot of advantages that would be useful in making difficult treatment choices. The objective of this study was to determine the current level of SDM among patients and head-and-neck surgeons. Methods: Consultations of patients with a non-cutaneous head-and-neck malignancy facing a treatment decision were selected and included. If given informed consent, the consultation was recorded with an audio recorder, and the patient and surgeon filled in a questionnaire immediately after the consultation. The SDM level of the consultation was scored objectively by independent observers who judged audio recordings of the consultation using the OPTION5-scale, ranging from 0% (no SDM) to 100% (optimum SDM), as well as subjectively by patients (using the SDM-Q-9 and Control preference scale) and clinicians (SDM-Q-Doc, modified control preference scale) percentages. Preliminary results: Five head-neck surgeons have each at least seven recorded conversations with different patients. One of them was trained in SDM. The other four had no experience with SDM. Most patients were male (74%), and oropharyngeal carcinoma was the most common diagnosis (41%), followed by oral cancer (33%). Five patients received palliative treatment of which two patients were not treated recording guidelines. At this moment, all recordings are scored by the two independent observers. Analysis of the results will follow soon. Conclusion: The current study will determine to what extent there is a discrepancy between the objective and subjective level of shared decision-making (SDM) during a doctor-patient consultation in Head-and-Neck surgery. The results of the analysis will follow shortly.

Keywords: head-and-neck oncology, patient involvement, physician-patient relations, shared decision making

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Authors: Anne N. Heirman, Lisette van der Molen, Richard Dirven, Gyorgi B. Halmos, Michiel W.M. van den Brekel

Abstract:

Background: Due to the rising incidence of oropharyngeal squamous cell cancer (OPSCC), many patients are challenged with choosing between transoral(robotic) surgery and radiotherapy, with equal survival and oncological outcomes. Also, functional outcomes are of little difference over the years. With this study, the wants and needs of patients and caregivers are identified to develop a comprehensible patient decision aid (PDA). Methods: The development of this PDA is based on the International Patient Decision Aid Standards criteria. In phase 1, relevant literature was reviewed and compared to current counseling papers. We interviewed ten post-treatment patients and ten doctors from four head and neck centers in the Netherlands, which were transcribed verbatim and analyzed. With these results, the first draft of the PDA was developed. Phase 2 beholds testing the first draft for comprehensibility and usability. Phase 3 beholds testing for feasibility. After this phase, the final version of the PDA was developed. Results: All doctors and patients agreed a PDA was needed. Phase 1 showed that 50% of patients felt well-informed after standard care and 35% missed information about treatment possibilities. Side effects and functional outcomes were rated as the most important for decision-making. With this information, the first version was developed. Doctors and patients stated (phase 2) that they were satisfied with the comprehensibility and usability, but there was too much text. The PDA underwent text reduction revisions and got more graphics. After revisions, all doctors found the PDA feasible and would contribute to regular counseling. Patients were satisfied with the results and wished they would have seen it before their treatment. Conclusion: Decision-making for OPSCC should focus on differences in side-effects and functional outcomes. Patients and doctors found the PDA to be of great value. Future research will explore the benefits of the PDA in clinical practice.

Keywords: head-and-neck oncology, oropharyngeal cancer, patient decision aid, development, shared decision making

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Authors: Anne Heirman, Vincent van der Noort, Rob van Son, Marije Petersen, Lisette van der Molen, Gyorgy Halmos, Richard Dirven, Michiel van den Brekel

Abstract:

Objective: Voice prosthesis leakage significantly impacts laryngectomies patients' quality of life, causing insecurity and frequent unplanned hospital visits and costs. In this study, the concept of prophylactic voice prosthesis replacement was explored to prevent leakages. Study Design: A retrospective cohort study. Setting: Tertiary hospital. Methods: Device lifetimes and voice prosthesis replacements of a retrospective cohort, including all patients with laryngectomies between 2000 and 2012 in the Netherlands Cancer Institute, were used to calculate the number of needed voice prostheses per patient per year when preventing 70% of the leakages by prophylactic replacement. Various strategies for the timing of prophylactic replacement were considered: Adaptive strategies based on the individual patient’s history of replacement and fixed strategies based on the results of patients with similar voice prosthesis or treatment characteristics. Results: Patients used a median of 3.4 voice prostheses per year (range 0.1-48.1). We found a high inter-and intrapatient variability in device lifetime. When applying prophylactic replacement, this would become a median of 9.4 voice prostheses per year, which means replacement every 38 days, implying more than six additional voice prostheses per patient per year. The individual adaptive model showed that preventing 70% of the leakages was impossible for most patients, and only a median of 25% can be prevented. Monte-Carlo simulations showed that prophylactic replacement is not feasible due to the high Coefficient of Variation (Standard Deviation/Mean) in device lifetime. Conclusion: Based on our simulations, prophylactic replacement of voice prostheses is not feasible due to high inter-and intrapatient variation in device lifetime.

Keywords: voice prosthesis, voice rehabilitation, total laryngectomy, prosthetic leakage, device lifetime

Procedia PDF Downloads 127

Authors: Szilvia Halmos

Abstract:

Hungary was one of the first countries to sign and ratify the UN Convention on the Rights of Persons with Disabilities (hereinafter: CRPD). Consequently, Hungary assumed an obligation under international law to review the national law in the light of the Article 12 of the CRPD requiring the States parties to guarantee the equality of persons with disabilities in terms of legal capacity, and to replace the regimes of substitute decision-making by the instruments of supported decision-making. This article is often characterized as one of the key norms of the CRPD, since the legal autonomy of the persons with disabilities is an essential precondition of their participation in the social life on an equal basis with others, envisaged by the social paradigm of disability. This paper examines the impact of the CRPD on the relevant Hungarian national legal norms, with special focus on the relevant rules of the recently codified Civil Code. The employed research methodologies include (1) the specification of the implementation requirements imposed by the Article 12 of the CRPD, (2) the determination of the indicators of the appropriate implementation, (3) the critical analysis of compliance of the relevant Hungarian legal regulation with the indicators, (4) with respect to the relevant case law of the Hungarian Constitutional Court and ordinary courts, the European Court of Human Rights and the Committee of Rights of Persons with Disabilities and (5) to the available empirical figures on the functioning of substitute and supported decision-making regimes. It will be established that the new Civil Code has made large steps toward the equality of persons with disabilities in terms of legal capacity and the support model of decision-making by the introduction of some specific instruments of supported decision-making and the restriction of the application of guardianship. Nevertheless, the regulation currently in effect fails to represent some crucial principles of the Article 12 of the CRPD, such as the non-discrimination of persons with psycho-social disabilities, the support of the articulation of the will and preferences of the individual instead of his/her best interest in the course of decision-making. The changes in the practice of the substitute and the support model brought about by the new legal norms can also be assessed as significant, however, so far unsatisfactory. The number of registered supporters is rather low, and the preconditions of the effective functioning of the support (e.g. the proper training of the supporters) are not ensured.

Keywords: Article 12 of the UN CRPD, Hungarian law on legal capacity, persons with intellectual and psycho-social disabilities, supported decision-making

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