The Development and Evaluation of Personalized Training in Shared Decision-making Skills for Rheumatologists

Item does not contain fulltextOBJECTIVE: Many factors influence a patient's preference in engaging in shared decision making (SDM). Several training programs have been developed for teaching SDM to physicians, but none of them focused on the patients' preferences. We developed an SDM training program for rheumatologists with a specific focus on patients' preferences and assessed its effects. METHODS: A training program was developed, pilot tested, and given to 30 rheumatologists. Immediately after the training and 10 weeks later, rheumatologists were asked to complete a questionnaire to evaluate the training. Patients were asked before and after the training to complete a questionnaire on patient satisfaction. RESULTS: Ten weeks after the training, 57% of the rheumatologists felt they were capable of estimating the need of patients to engage in SDM, 62% felt their communication skills had improved, and 33% reported they engaged more in SDM. Up to 268 patients were included. Overall, patient satisfaction was high, but there were no statistically significant differences in patient satisfaction before and after the training. CONCLUSION: The training was received well by the participating rheumatologists. Even in a population of rheumatologists that communicates well, 62% reported improvement. The training program increased awareness about the principles of SDM in patients and physicians, and improved physicians' communicative skills, but did not lead to further improvement in patients' satisfaction, which was already high

Tapering towards DMARD-free remission in established rheumatoid arthritis: 2-year results of the TARA trial

Objectives To evaluate the 2-year clinical effectiveness of two gradual tapering strategies. The first strategy consisted of tapering the conventional synthetic disease-modifying antirheumatic drugs (csDMARDs) first (i.e., methotrexate in similar to 90%), followed by the tumour necrosis factor inhibitor (TNF-inhibitor), the second strategy consisted of tapering the TNF-inhibitor first, followed by the csDMARD.Methods This multicentre single-blinded randomised controlled trial included patients with rheumatoid arthritis (RA) with well-controlled disease for >= 3 consecutive months, defined as a Disease Activity Score (DAS) measured in 44 joints <= 2.4 and a swollen joint count <= 1, which was achieved with a csDMARD and a TNF-inhibitor. Eligible patients were randomised into gradual tapering the csDMARD followed by the TNF-inhibitor, or vice versa. The primary outcome was the number of disease flares. Secondary outcomes were DMARD-free remission (DFR), DAS, functional ability (Health Assessment Questionnaire Disability Index (HAQ-DI)) and radiographic progression.Results 189 patients were randomly assigned to tapering their csDMARD (n=94) or TNF-inhibitor (n=95) first. The cumulative flare rate after 24 months was, respectively, 61% (95% CI 50% to 71%) and 62% (95% CI 52% to 72%). The patients who tapered their csDMARD first were more often able to go through the entire tapering protocol and reached DFR more often than the group that tapered the TNF-inhibitor first (32% vs 20% (p=0.12) and 21% vs 10% (p=0.07), respectively). Mean DAS and HAQ-DI over time, and radiographic progression did not differ between groups (p=0.45, p=0.17, p=0.8, respectively).Conclusion The order of tapering did not affect flare rates, DAS or HAQ-DI. DFR was achievable in 15% of patients with established RA, slightly more frequent in patients that first tapered csDMARDs. Because of similar effects from a clinical viewpoint, financial arguments may influence the decision to taper TNF-inhibitors first

REDUCED INCREASE OF ACPA IGG-FC GALACTOSYLATION DURING PREGNANCY IN COMPARISON TO TOTAL IGG: AN EXPLANATION WHY AUTOANTIBODY POSITIVE RA-PATIENTS IMPROVE LESS DURING PREGNANCY?

Pathophysiology and treatment of rheumatic disease

Development of a clinical transition pathway for adolescents in the Netherlands

textabstractAIMS: To explore how young people with juvenile-onset rheumatic and musculoskeletal diseases (jRMDs) and their parent(s) experience care during preparation for the upcoming transfer to adult services, and to develop a clinical transition pathway.METHOD: A survey was conducted with 32 young people aged between 14 and 20 years with jRMDs, and their parents ( n =33), treated at the department of paediatric rheumatology in a tertiary care children's hospital in the Netherlands.RESULTS: More than 30% of young people would have liked to discuss topics such as educational and vocational choices in a clinic, but did not get the opportunity. Preparation for transition was poor as was training in self-management skills. One third of parents had feelings of anxiety about the upcoming transfer. Results from the survey and evidence-based principles of transitional care were used to develop the clinical transition pathway. The pathway focuses on starting transition early, developing self-management skills, joint consultations and supporting parents in giving young people control of their clinical care.CONCLUSION: Care does not currently meet the needs of young people in the process of transition to adult rheumatology services. The clinical transition pathway developed as a result of the study is a tool that may improve this process

Nonadherence to disease modifying antirheumatic drugs in the first year after diagnosis: comparing three adherence measures in early arthritis patients

OBJECTIVES: The aim of this study was to compare three measurement methods for non-adherence to DMARDs in early arthritis patients: the Compliance Questionnaire Rheumatology (CQR), the intracellular uptake of MTX in the form of MTX-polyglutamates (MTX-PGs) and electronic measurement with Medication Event Monitoring Systems (MEMS). METHODS: DMARD naive early arthritis patients were included in an ongoing cohort study. MEMS were used to measure adherence continuously, while every 3 months MTX-PGs were collected together with the CQR. The associations between the measures were estimated with Spearman rank correlations. Sensitivity and specificity of the CQR against a MEMS cut-off was compared at 3, 6, 9 and 12 months. The same applied to MTX-PGs against a MEMS cut-off and MTX-PGs against a CQR cut-off. For the association between MEMS, the CQR and MTX-PGs, a multilevel linear regression model was performed with age, gender, weeks of treatment and MTX dosage as covariates. RESULTS: We included 206 patients. Non-adherence measured with MEMS varied over time and between DMARDs. The CQR score was not associated with MEMS non-adherence at 3, 9 and 12 months. At 9 months, MTX-PGs was associated with MEMS non-adherence, as well as with the CQR. All correlations were below 0.30. CONCLUSION: Associations between the three measures are weak. Explanations are individual differences in the uptake of MTX, and little variance in adherence between patients. Moreover, the measurement domains differ: perceptions (CQR), behaviour (MEMS) and pharmacokinetics (MTX)

Hergebruik van medische gegevens voor onderzoek: Wat vindt de Nederlander van het toestemmingsvereiste?

Doel: Hoe kijken zorggebruikers, in het kader van de bescherming van persoonsgegevens, aan tegen het gebruik van medische gegevens voor wetenschappelijk onderzoek? Opzet: Enquête onder 731 leden van het Consumentenpanel Gezondheidszorg van het NIVEL. Methode: Schriftelijke en online vragenlijst met algemene vragen en per respondent 4 casussen. De vragen gingen over het vertrouwen van de respondent in het gebruik van eerder geregistreerde gegevens voor verschillende typen gezondheidszorgonderzoek, en over de bereidheid om onder verschillende omstandigheden gegevens ter beschikking te stellen zonder dat om toestemming wordt gevraagd. Resultaten: Respondenten toonden veel ver trouwen in wetenschappelijk onderzoekers en ar tsen als het ging om hergebruik van medische gegevens voor onderzoek. Een meerderheid vond dat voor zulk onderzoek niet expliciet om toestemming hoeft te worden gevraagd als men maar geïnformeerd wordt: een derde vond zelf kunnen beslissen belangrijker dan vooruitgang van de wetenschap, drie kwart vond expliciete toestemming niet nodig als de gegevens goed beveiligd zijn en alleen voor wetenschappelijk onderzoek worden gebruikt. Conclusie: De bescherming van medische gegevens moet in verhouding staan tot de risico’s van misbruik en de opbrengsten van onderzoek met die gegevens. Een grote meerderheid van de zorggebruikers heef t ver trouwen in de onderzoekers en de bestaande gedragscodes garanderen de bescherming van de gegevens voldoende. Daarom zien we geen noodzaak tot een strikt toestemmingsvereiste, dat onderzoek in de gezondheidszorg onnodig zou beperken. Wel achten we grotere transparantie over het onderzoeksproces noodzakelijk om het juiste evenwicht tussen de bescherming van persoonsgegevens en de noodzaak van een lerend gezondheidszorgsysteem te benadrukke