35 research outputs found

    Patient and caregiver priorities for medication adherence in gout, osteoporosis and rheumatoid arthritis: nominal group technique

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    Objectives: This study aimed to identify and prioritize factors important to patients and caregivers with regard to medication adherence in gout, osteoporosis (OP) and rheumatoid arthritis (RA), and to describe the reasons for their decisions. Methods: Patients with gout, OP and RA, and their caregivers purposively sampled from five rheumatology clinics in Australia, identified and ranked factors considered important for medication adherence using nominal group technique and discussed their decisions. An importance score (scale 0-1) was calculated, and qualitative data were analysed thematically. Results: From 14 focus groups, 82 participants (67 patients, 15 caregivers) identified 49 factors. The top five factors based on the ranking of all participants were trust in doctor (importance score 0.46), medication effectiveness (0.31), doctor's knowledge (0.25), side effects (0.23), medication taking routine (0.13). The order of the ranking varied by participant groupings with patients ranking trust in doctor the highest whilst caregivers ranked side effects the highest. Five themes reflecting the reasons for factors influencing adherence were: motivation and certainty in supportive individualised care; living well and restoring function; fear of toxicity and cumulative harm; seeking control and involvement; and unnecessarily difficult and inaccessible. Conclusions: Factors related to the doctor, medication properties and patients' medication knowledge and routine were important for adherence. Strengthening doctor-patient trust and partnership, managing side effects, and empowering patients with knowledge and skills for medicine-taking could enhance medication adherence in patients with rheumatic conditions

    Treating rheumatoid arthritis to target: 2014 update of the recommendations of an international task force

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    Background Reaching the therapeutic target of remission or low-disease activity has improved outcomes in patients with rheumatoid arthritis (RA) significantly. The treat-to-target recommendations, formulated in 2010, have provided a basis for implementation of a strategic approach towards this therapeutic goal in routine clinical practice, but these recommendations need to be re-evaluated for appropriateness and practicability in the light of new insights. Objective To update the 2010 treat-to-target recommendations based on systematic literature reviews (SLR) and expert opinion. Methods A task force of rheumatologists, patients and a nurse specialist assessed the SLR results and evaluated the individual items of the 2010 recommendations accordingly, reformulating many of the items. These were subsequently discussed, amended and voted upon by >40 experts, including 5 patients, from various regions of the world. Levels of evidence, strengths of recommendations and levels of agreement were derived. Results The update resulted in 4 overarching principles and 10 recommendations. The previous recommendations were partly adapted and their order changed as deemed appropriate in terms of importance in the view of the experts. The SLR had now provided also data for the effectiveness of targeting low-disease activity or remission in established rather than only early disease. The role of comorbidities, including their potential to preclude treatment intensification, was highlighted more strongly than before. The treatment aim was again defined as remission with low-disease activity being an alternative goal especially in patients with long-standing disease. Regular follow-up (every 1–3 months during active disease) with according therapeutic adaptations to reach the desired state was recommended. Follow-up examinations ought to employ composite measures of disease activity that include joint counts. Additional items provide further details for particular aspects of the disease, especially comorbidity and shared decision-making with the patient. Levels of evidence had increased for many items compared with the 2010 recommendations, and levels of agreement were very high for most of the individual recommendations (≥9/10). Conclusions The 4 overarching principles and 10 recommendations are based on stronger evidence than before and are supposed to inform patients, rheumatologists and other stakeholders about strategies to reach optimal outcomes of RA

    Patientenparticipatie in wetenschappelijk onderzoek

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    Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups:A Report from the OMERACT 2014 Working Group on PRP

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    Objective.Patient participation in research is increasing; however, practical guidelines to enhance this participation are lacking. Specifically within the Outcome Measures in Rheumatology (OMERACT) organization, although patients have participated in OMERACT meetings since 2002, consensus about the procedures for involving patients in working groups has not been formalized. The objective is to develop a set of recommendations regarding patient research partner (PRP) involvement in research working groups.Methods.We conducted a systematic literature review on recommendations/guidelines of PRP involvement in research; elaborated a structured consensus process involving multiple participants to develop a set of recommendations; and sought endorsement of recommendations by OMERACT.Results.In the 18 articles included in the literature review, there was general agreement on the broad concepts for recommendations covering PRP involvement in research although they were heterogeneous in detail. Most considered PRP involvement in all phases of research with early engagement, training, and support important, but details on the content were scarce. This review informed a larger consensus-building process regarding PRP inclusion in OMERACT research. Three overarching principles and 8 recommendations were developed, discussed, and refined at OMERACT 2014. The guiding principles were endorsed during the OMERACT plenary session.Conclusion.These recommendations for PRP involvement in OMERACT research reinforce the importance of patient participation throughout the research process as integral members. Although the applicability of the recommendations in other research contexts should be assessed, the generalizability is expected to be high. Future research should evaluate their implementation and their effect on outcome development.</jats:sec
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