Patient participation in decision making about Disease Modifying Anti-Rheumatic Drugs:perceived and preferred roles of patients

Purpose: This study explores what role patients with rheumatic diseases perceive and prefer to have in decisions about Disease-Modifying Anti-Rheumatic Drugs (DMARDs) and what the concordance between preferred and perceived role in these decisions is. Method: Patients (n = 519) diagnosed with Rheumatoid Arthritis, Arthritis Psoriatica or Ankylosis Spondylitis from 2 hospitals in the Netherlands filled out a questionnaire. Questions included perceived and preferred role in medical decision making in general, and in 4 specific decision-categories: starting to use traditional DMARDs, starting to inject a DMARD, starting to use biological DMARDs and decrease or stop using DMARDs. Result: Most respondents perceived that, in current practice, treatment decisions in general were made by the doctor (43%) or by the doctor and patient together (55%). However, the perceived roles varied per decision category: e.g., most patients (72%) felt that the decision to start using a traditional DMARD was made by the doctor, whereas the decision to decrease or stop using DMARD’s was more often perceived as being made by the patients themselves (24%) or by doctor and patient together (38%). The preferred roles were, contrary to the perceived roles, consistent across the decision-categories. Most respondents (59%-63%) preferred to share decisions with their doctor. By using a paired sample t test the concordance between the perceived and preferred role was evaluated. Table 1 shows that there was a significant difference in 4 of 5 decision categories. Only the decision to decrease or stop using DMARDs had no significant difference between perceived and preferred role. For a considerable group, the perceived and preferred participation for decision making in general matched (61%); about one third (29%) perceived less participation than preferred and a minority perceived more participation than preferred. Again, the concordance varied across the decision categories. Especially for the decision to start with a traditional DMARD, many respondents had experienced less participation than they preferred (54%). Conclusion: Although patients seem consistent in their preference for participation in various DMARD decisions, the amount of perceived participation varied across the different decisions. Patients should especially be more involved in decisions about starting to use a traditional DMARD. Patient Decision aids might be helpful tools to increase patient participation

Eficacia de dexketoprofeno versus tramadol como analgesia preventiva en Anestesia General Balanceada

El dolor postoperatorio los pacientes lo aceptaban como una experiencia desagradable e inevitable, uno de los peor tratados, el control del mismo es primordial para los pacientes sometidos a cirugías abdominales. Su principio es simple y consiste en administrar un analgésico preoperatoriamente antes de la incisión quirúrgica ya que puede prevenir o reducir la hipersensibilidad de las neuronas del asta dorsal para reducir o eliminar el dolor subsiguiente. Este mal control del dolor post operatorio está asociado a una variedad de consecuencias negativas, que incluyen alteraciones cardíacas e incremento del riesgo de isquemia o infarto al miocardio, complicaciones tromboembólicas y pulmonares, alteraciones inmunes, deprivación del sueño y trastornos psicológicos como ansiedad y depresión, incrementa el riesgo de dolor postoperatorio persistente, necesidad de rehabilitación, incrementa la estancia hospitalaria o reingreso y disminuye la calidad de vida de quien la padec

Shared Decision-Making in rheumatology: What matters to patients?

Shared decision-making (SDM) is seen as a key element of high quality modern medicine. To support the SDM process and prepare patients to make medical decisions in collaboration with their clinician, Patient Decision Aids (PtDAs) can be used. This dissertation focuses on the perspective of patients on SDM in the setting of rheumatology care and the development of a PtDA in co-creation with patients and health professionals. With the use of qualitative and quantitative research methods, we gained knowledge about patients’ perspectives of SDM in rheumatology. The results showed that, in rheumatology care, the majority of patients prefers to be involved in medical decision-making. Yet, our interviews showed that many patients find it difficult to determine their preference regarding this subject and that it may vary between and within individuals, depending on the situation. These studies also revealed that SDM is frequently perceived in rheumatology outpatient care. Yet, there is room for improvement. A considerable group of patients would have liked more participation than they had experienced. Especially newly diagnosed patients who faced the decision to initiate anti-rheumatic drugs desired more participation in decision-making. With the early, iterative involvement of patients and health professionals a web-based PtDA was developed that allowed patients to choose between DMARDs. A post-test only study with a historical comparison group revealed that relative to the comparison group, patients in the intervention group perceived a more active role in medical decision-making and decisions were more in line with patients’ personal preferences. Furthermore, patients highly appreciated the PtDA and perceived it as easy to use and helpful in the decision-making process. In conclusion, the project described in this dissertation has resulted in the successful development of a PtDA that has demonstrated its high potential to be a valuable aid in improving patient participation in rheumatology care. The supportive studies described in this dissertation provide valuable knowledge about patients’ perceptions of SDM in the field of rheumatology. We have successfully verified that the combination of methods was helpful in developing a user-friendly novel application and creating support for the adoption of the PtDA

Was gibt es vor einer Therapie mit krankheitsmodifizierenden Medikamenten zu bedenken?

In den vergangenen Jahren gab es große Fortschritte in der Behandlung entzündlich-rheumatischer Erkrankungen. Empfohlen werden je nach Krankheitsverlauf nichtsteroidale Antirheumatika (NSAR), Corticosteroide (kortison-ähnliche Substanzen) und krankheitsmodifizierende Medikamente (meist mit DMARDs abgekürzt von englisch disease modifying antirheumatic drugs). Zu letzteren gehören die konventionellen Basismedikamente (wie Sulfasalazin und Methotrexat) und die Biologika (auf Erkenntnissen der Molekularbiologie beruhende Medikamente, beim Morbus Bechterew insbesondere die TNF-Blocker). Zwischen den Medikamenten gibt es große Unterschiede bezüglich Ansprechzeit, Art der Anwendung (oral, Injektion unter die Haut, Infusion in eine Vene), mögliche Nebenwirkungen und Kosten. Mit der zunehmenden Verbreitung neuer Behandlungs-Strategien werden sowohl Rheumatologen als auch Patienten mit komplexen Entscheidungen konfrontiert, denn die Wahl des richtigen Medikaments zum richtigen Zeitpunkt ist nicht nur eine Frage medizinischer Aspekte, sondern auch eine Frage der Situation und Interessenlage des Patienten. Die Beteiligung der Patienten an der Medikamentenwahl wird empfohlen, weil darin ein berechtigter Anspruch der Patienten gesehen wird und weil sie dann das Medikament bereitwilliger und zuverlässiger nehmen.1 Rheuma-Patienten sind besonders auf ausführliche Information angewiesen, um an diesem Entscheidungsprozess teilnehmen zu können. Wir haben untersucht, welche Gesichtspunkte für Patienten bei diesem Entscheidungsprozess wichtig sind und welche Informationen sie dazu benötigen

Arthritis patients’ motives for (not) wanting to be involved in medical decision-making and the factors that hinder or promote patient involvement

The aim of this study is to gain insight into arthritis patients’ motives for (not) wanting to be involved in medical decision-making (MDM) and the factors that hinder or promote patient involvement. In-depth semi-structured interviews were conducted with 29 patients suffering from Rheumatoid Arthritis (RA). Many patients perceived the questions about involvement in MDM as difficult, mostly because they were unaware of having a choice. Shared decision-making (SDM) was generally preferred, but the preferred level of involvement varied between and within individuals. Preference regarding involvement may vary according to the type of treatment and the severity of the complaints. A considerable group of respondents would have liked more participation than they had experienced in the past. Perceived barriers could be divided into doctor-related (e.g. a paternalistic attitude), patient-related (e.g. lack of knowledge) and context-related (e.g. too little time to decide) factors. This study demonstrates the complexity of predicting patients’ preferences regarding involvement in MDM: most RA patients prefer SDM, but their preference may vary according to the situation they are in and the extent to which they experience barriers in getting more involved. Unawareness of having a choice is still a major barrier for patient participation. The attending physician seems to have an important role as facilitator in enhancing patient participation by raising awareness and offering options, but implementing SDM is a shared responsibility; all parties need to be involved and educate