Summarizing Patient Preferences for the Competitive Landscape of Multiple Sclerosis Treatment Options

Objective. Quantitatively summarize patient preferences for European licensed relapsing-remitting multiple scle

Zelfregulering als een vernieuwend concept van professionaliteit

Self-regulation as an innovative concept of professionalismThis contribution opens with a discussion of three sources of knowledge that form a foundation for the concept of “selfregulation” as developed by Donkers. It starts with a historical enquiry on the Western European ideas about change and changeability of people and society. Three paradigms of change appear which in every period of modern history conflicted with each other and thereby became refined and differentiated. A second source relates to practice research to a number of methods for social intervention. The third source is a critical reflection on contemporary societal developments. Central in that reflection are all kinds of expropriation of self-direction – in – dialogue with others and processes of fragmentation of the complex societal reality. From these three sources a plea is given for a new concept of professionalism marked by strong attention for the reinforcement of the selfregulating possibilities of persons, organizations and society.In the second part Geertsema focusses on the relation between change and intervention and values that are part of these processes. As the Dutch society seems to be in a third order transition, without a clear view of the new situation, the urgency of value debates is high. But the late modernity seems to be imprisoned in notions of individuality that puts strong pressure upon more relational ontologies and mutual responsibilities. Besides that growing anonymous and invisible systems influence the formation of daily life deeply. If there will be a situation of relational ontology which make use of the powers of diversity and multiplicity of our existence, then change agents should take a moral stance by themselves to create space for numerous narratives. The concept of “selfregulation” makes it possible to relate these value debates with debates about the design of society in this transition situation.Zelfregulering als een vernieuwend concept van professionaliteitIn deze bijdrage wordt allereerst ingegaan op drie bronnen van kennis die ten grondslag liggen aan de zelfreguleringsbenadering van Donkers. In de eerste plaats is dat een historisch onderzoek naar het West-Europese denken over veranderen en veranderbaarheid van mens en samenleving. Uit dit onderzoek komt een drietal veranderkundige paradigma’s naar voren die in iedere periode van de moderne geschiedenis op elkaar botsten en met die botsingen zichzelf verder hebben verfijnd en gedifferentieerd. Een tweede bron zijn praktijkgerichte onderzoeken die zijn verricht naar een aantal methodieken van sociale interventie. De derde bron is een kritische reflectie op hedendaagse maatschappelijke ontwikkelingen. In die reflectie wordt met name stilgestaan bij allerlei vormen van onteigening van zelfregie-in-dialoog met anderen en bij processen van fragmentering van de complexe maatschappelijke werkelijkheid. Vanuit deze drie kennisbronnen wordt gepleit voor een vernieuwend concept van professionaliteit dat gekenmerkt wordt door gerichtheid op versterking van het zelfregulerend vermogen van mens, organisatie en samenleving.In het vervolg van deze bijdrage wijst Henk Geertsema op de relatie tussen veranderen en beïnvloeden en de kwestie van de waarden die daarmee verbonden is. In een situatie van een transitie van de derde orde, zoals zich momenteel in de Nederlandse samenleving voordoet, is de eindtoestand onduidelijk wat de noodzaak om waardendiscussies te voeren versterkt. De laat-moderne samenleving lijkt gevangen in opvattingen over individualiteit die een relationele ontologie en de daarmee verbonden wederkerige verantwoordelijkheid sterk onder druk zet. De afhankelijkheid van anonieme systemen wordt daarnaast steeds meer onzichtbaar, terwijl die vergaand de vormgeving van het bestaan sturen. Wil er opnieuw ruimte komen voor een relationele ontologie met de mogelijkheid om de kracht van varieteit en meervoudigheid van vormgevingen van het bestaan te benutten, dan zal de veranderkundige zelf een moreel standpunt moeten innemen om voor de verschillende narratio’s actief ruimte te maken. Het concept “zelfregulatie” geeft de mogelijkheid om deze waardendiscussies te verbinden met discussies over de vormgeving van het bestaan in deze situatie van transitie

Summarizing Patient Preferences for the Competitive Landscape of Multiple Sclerosis Treatment Options

Objective. Quantitatively summarize patient preferences for European licensed relapsing-remitting multiple sclerosis (RRMS) disease-modifying treatment (DMT) options. Methods. To identify and summarize the most important RRMS DMT characteristics, a literature review, exploratory physician interviews, patient focus groups, and confirmatory physician interviews were conducted in Germany, the United Kingdom, and the Netherlands. A discrete choice experiment (DCE) was developed and executed to measure patient preferences for the most important DMT characteristics. The resulting DCE data (n=799 and n=363 respondents in the United Kingdom and Germany, respectively) were analyzed using Bayesian mixed logit models. The estimated individual-level patient preferences were subsequently summarized using 3 additional analyses: the quality of the choice data was assessed using individual-level R2 estimates, individual-level preferences for the available DMTs were aggregated into DMT-specific preference shares, and a principal component analysis was performed to explain the patients’ choice process. Results. DMT usage differed between RRMS patients in Germany and the United Kingdom but aggregate patient preferences were similar. Across countries, 42% of all patients preferred oral medications, 38% infusions, 16% injections, and 4% no DMT. The most often preferred DMT was natalizumab (26%) and oral DMT cladribine tablets (22%). The least often preferred were mitoxantrone and the beta-interferon injections (1%–3%). Patient preferences were strongly correlated with patients’ MS disease duration and DMT experience, and differences in patient preferences could be summarized using 8 principle components that together explain 99% of the variation in patients’ DMT preferences. Conclusion. This study summarizes patient preferences for the included DMTs, facilitates shared decision making along the dimensions that are relevant to RRMS patients, and introduces methods in the medical DCE literature that are ideally suited to summarize the impact of DMT introductions in preexisting treatment landscapes

Summarizing Patient Preferences for the Competitive Landscape of Multiple Sclerosis Treatment Options

Objective. Quantitatively summarize patient preferences for European licensed relapsing-remitting multiple sclerosis (RRMS) disease-modifying treatment (DMT) options. Methods. To identify and summarize the most important RRMS DMT characteristics, a literature review, exploratory physician interviews, patient focus groups, and confirmatory physician interviews were conducted in Germany, the United Kingdom, and the Netherlands. A discrete choice experiment (DCE) was developed and executed to measure patient preferences for the most important DMT characteristics. The resulting DCE data (n=799 and n=363 respondents in the United Kingdom and Germany, respectively) were analyzed using Bayesian mixed logit models. The estimated individual-level patient preferences were subsequently summarized using 3 additional analyses: the quality of the choice data was assessed using individual-level R2 estimates, individual-level preferences for the available DMTs were aggregated into DMT-specific preference shares, and a principal component analysis was performed to explain the patients’ choice process. Results. DMT usage differed between RRMS patients in Germany and the United Kingdom but aggregate patient preferences were similar. Across countries, 42% of all patients preferred oral medications, 38% infusions, 16% injections, and 4% no DMT. The most often preferred DMT was natalizumab (26%) and oral DMT cladribine tablets (22%). The least often preferred were mitoxantrone and the beta-interferon injections (1%–3%). Patient preferences were strongly correlated with patients’ MS disease duration and DMT experience, and differences in patient preferences could be summarized using 8 principle components that together explain 99% of the variation in patients’ DMT preferences. Conclusion. This study summarizes patient preferences for the included DMTs, facilitates shared decision making along the dimensions that are relevant to RRMS patients, and introduces methods in the medical DCE literature that are ideally suited to summarize the impact of DMT introductions in preexisting treatment landscapes