OBJECTIVE: Patients diagnosed with advanced larynx cancer face a decisional process in which they can choose between radiotherapy, chemoradiotherapy, or a total laryngectomy with adjuvant radiotherapy. Clinicians do not always agree on the best clinical treatment, making the decisional process for patients a complex problem.METHODS: Guided by the International Patient Decision Aid (PDA) Standards, we followed three developmental phases for which we held semi-structured in-depth interviews with patients and physicians, thinking-out-loud sessions, and a study-specific questionnaire. Audio-recorded interviews were verbatim transcribed, thematically coded, and analyzed. Phase 1 consisted of an evaluation of the decisional needs and the regular counseling process; phase 2 tested the comprehensibility and usability of the PDA; and phase 3 beta tested the feasibility of the PDA.RESULTS: Patients and doctors agreed on the need for development of a PDA. Major revisions were conducted after phase 1 to improve the readability and replace the majority of text with video animations. Patients and physicians considered the PDA to be a major improvement to the current counseling process.CONCLUSION: This study describes the development of a comprehensible and easy-to-use online patient decision aid for advanced larynx cancer, which was found satisfactory by patients and physicians (available on www.treatmentchoice.info). The outcome of the interviews underscores the need for better patient counseling. The feasibility and satisfaction among newly diagnosed patients as well as doctors will need to be proven. To this end, we started a multicenter trial evaluating the PDA in clinical practice (ClinicalTrials.gov Identifier: NCT03292341).LEVEL OF EVIDENCE: NA Laryngoscope, 129:2733-2739, 2019.
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In response to a rapidly changing, increasingly insecure and complex labor market, career counselors and researchers are developing methods that can meet the needs of individuals who would navigate this new terrain. In the last two or three decades, narrative career counseling practices (Cochran, 1997; McMahon & Watson, 2012; Reid & West, 2011; Savickas, 2012) have been developed to promote career adaptability (Savickas, 2011) and career resilience (Lyons, Schweitzer & Ng, 2015). Narrative counseling (i.e. career construction) is founded on the idea that in order to survive and thrive on the labor market of the 21st century, individuals must reflexively construct their identities in a process of meaning making, where identity is co-constructed in the form of a narrative: a story about who one is that provides both meaning and direction (Wijers & Meijers, 1996). LinkedIn: https://www.linkedin.com/in/reinekke-lengelle-phd-767a4322/
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ObjectivesDecision-making for patients with a locally advanced laryngeal carcinoma (T3 and T4) is challenging due to the treatment choice between organ preservation and laryngectomy, both with different and high impact on function and quality of life (QoL). The complexity of these treatment decisions and their possible consequences might lead to decisional conflict (DC). This study aimed to explore the level of DC in locally advanced laryngeal carcinoma patients facing curative decision-making, and to identify possible associated factors.MethodsIn this multicenter prospective cohort study, participants completed questionnaires on DC, level of shared decision-making (SDM), and a knowledge test directly after counseling and 6 months after treatment. Descriptive statistics and Spearman correlation tests were used to analyze the data.ResultsDirectly after counseling, almost all participants (44/45; 98%) experienced Clinically Significant DC score (CSDC >25, scale 0–100). On average, patients scored 47% (SD 20%) correct on the knowledge test. Questions related to radiotherapy were answered best (69%, SD 29%), whilst only 35% (SD 29%) of the questions related to laryngectomy were answered correctly. Patients' perceived level of SDM (scale 0–100) was 70 (mean, SD 16.2), and for physicians this was 70 (SD 1.7).ConclusionMost patients with advanced larynx cancer experience high levels of DC. Low knowledge levels regarding treatment aspects indicate a need for better patient counseling.Level of Evidence4 Laryngoscope, 134:3604–3610, 2024
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Sommige mensen met chronische ziekten zoals COPD hebben baat bij (online) zelfzorg, andere helemaal niet. Welke oplossing werkt nu eigenlijk bij wie? In de TASTE-onderzoekslijn kijken we naar het succes van zelfmanagement en eHealth bij mensen met een chronische ziekte.Doel De TASTE-onderzoekslijn (TAilored Self-managemenT and E-health) richt zich op zelfmanagement van chronisch zieken: het vermogen van patiënten om goed met hun ziekte om te gaan. Er zijn talloze hulpmiddelen voor beter zelfmanagement op de markt, vaak digitaal (eHealth). Maar het is onduidelijk wat nu echt werkt en bij wie. TASTE bestaat uit meerdere deelonderzoeken. Wij onderzoeken wat er nodig is om ondersteuning op maat te bieden voor het omgaan met een chronische ziekte. Daarnaast ontwikkelen we nieuwe methodes voor zelfmanagement. Hiermee willen we kosten verminderen van de zorg voor chronisch zieken en de behandeling verbeteren. Resultaten Onderzoeker Jaap Trappenburg over TASTE https://youtu.be/J4ndcf83sBI Promotieonderzoek mHealth bij COPD M-ACZiE: Omgaan met longaanvallen bij chronische longziekte Publicaties 'We zitten voor een dubbeltje op de eerste rang' (V&VN Magazine) 'Zelfmanagement bij chronische ziekten'(Huisarts en Wetenschap) 'Self-management: One size does not fit all' (Patient Education and Counseling) TASTE Nieuwsbrieven TASTE Nieuwsbrief 1 (2012) TASTE Nieuwsbrief 2 (2013) Brochure TASTE: Het succes van zelfmanagement ontrafelen Looptijd 01 januari 2012 - 31 december 2020 Aanpak Met innovatieve onderzoeksmethoden werkt de TASTE-onderzoekslijn aan nieuwe kennis die nodig is om antwoord te kunnen geven op de vraag welk type interventie het beste werkt bij welk patiëntprofiel.
Along with the rapidly growing number of disabled people participating in competitive sports, there is an increased need for (para)medical support in disability sports. Disabled athletes experience differences in body composition, metabolism, training load and habitual activity patterns compared with non-disabled athletes. Moreover, it has been suggested that the well-recognized athlete triad, and low energy availability and low bone mineral density in particular, is even a greater challenge in disabled athletes. Therefore, it is not surprising that sport nutritionists of disabled athletes have expressed an urgency for increased knowledge and insights on the nutritional demands of this group. This project aims to investigate energy expenditure, dietary intake, body composition and bone health of disabled athletes, ultimately leading to nutritional guidelines that promote health and optimal sports performance for this unique population. For this purpose, we will conduct a series of studies and implementation activities that are inter-related and build on the latest insights from sports practice, technology and science. Our international consortium is highly qualified to achieve this goal. It consists of knowledge institutes including world-leading experts in sport and nutrition research, complemented with practical insights from nutritionists working with disabled athletes and the involvement of athletes and teams through the Dutch and Norwegian Olympic committees. The international collaboration, which is a clear strength of this project, is not only focused on research, but also on the optimization of professional practice and educational activities. In this regard, the outcomes of this project will be directly available for practical use by the (para)medical staff working with disabled athletes, and will be extensively communicated to sport teams to ensure that the new insights are directly embedded into daily practice. The project outcomes will also be incorporated in educational activities for dietetics and sport and exercise students, thereby increasing knowledge of future practitioners.
