What Is New - Patients' Perspective and Patient Education
Take a look at our 'What is new' highlights on the patients' perspective and patient education.
May 2023
"Effectiveness of patient education as a stand-alone intervention for patients with chronic widespread pain and fibromyalgia: a systematic review and meta-analysis of randomized trials"
Why WIN?
Patients with CWP and FM are best managed through a multidisciplinary effort, in which patient education plays an essential role based on a biopsychosocial approach. Non-pharmacological intervention strategies, with patient education, encouraging self-management, and return to desired everyday activities and lifestyle, are therefore considered first-line intervention in evidence-supported stepped-care therapeutic models for the management of CWP and FM. The aim of this systematic review was to evaluate the evidence for the benefits and potential harms associated with the use of patient education as a stand-alone intervention for individuals with CWP and FM.
Do you consider valuable to design RCTs investigating patient education as a stand-alone intervention, measuring disease acceptance, health-related quality of life and pain coping skills in CWP and FM?
Yes/No
Share your response with us using the hashtag #WhatIsNew and tag us @EMEUNET
Link to original article: https://www.tandfonline.com/doi/abs/10.1080/03009742.2023.2192450?journalCode=irhe20
April 2023
"Remotely Supervised Weight Loss and Exercise Training to Improve Rheumatoid Arthritis Cardiovascular Risk: Rationale and Design of the Supervised Weight Loss Plus Exercise Training-Rheumatoid Arthritis Trial"
Why WIN?
One promising means of improving RA CVD risk—for both traditional and inflammatory factors—is through overweight/obesity reduction and increased physical activity. Both overweight/obesity and physical inactivity worsen RA CVD risk, yet interventions targeting these factors to improve RA CVD risk are lacking. The SWET-RA trial will be the first randomized controlled trial to assess the effects of a remotely delivered weight loss and exercise training lifestyle intervention on health parameters in patients with RA. The primary outcome is change in CVD risk in older patients with RA and overweight/obesity who are at high risk for cardiometabolic disease. This article discuss the potential benefits of a remotely supervised weight loss and exercise training intervention to improve use of lifestyle management strategies in RA clinical care.
Do you consider valuable to incorporate a remotely supervised weight loss and exercise training intervention to improve use of lifestyle management strategies in RA clinical care?
Yes/No
Share your response with us using the hashtag #WhatIsNew and tag us @EMEUNET
March 2023
"Coping strategies, emotional distress and perceived disease severity in a cohort of patients with rheumatoid arthritis: a mediation analysis"
Why WINS?
There are no studies investigating the role of emotional distress as a possible mediator of the relationship between coping strategies and PGA.
In order to reduce PGA in patients with RA; Do you consider valuable to the implementation of psychological interventions, to treat emotional distress and to modify the specific coping styles in your clinical practice?
yes / no
Share your response with us using the hashtag #WhatIsNew and tag us @EMEUNET
February 2023
"Association of Hurried Communication and Low Patient Self-Efficacy With Persistent Nonadherence to Lupus Medications"
Why WINS?
As medication nonadherence is ubiquitous in SLE and clearly associated with worse clinical outcomes, modifiable factors that contribute to low adherence are important to identify. Prior studies have shown that effective communication contributes to improved patient understanding of the disease and the risks and benefits associated with treatments; such communication is strongly correlated with adherence.
Do you consider valuable to include communication technics and patient self-efficacy motivation to optimize patient adherence in your daily clinical practice?
Share your response with us using the hashtag #WhatIsNew and tag us @EMEUNET
Jan 2023
" Every Little Furrow of Her Brow Makes Me Want To Stop": An Interpretative Phenomenologic Analysis of Mothers' Experiences With Juvenile Idiopathic Arthritis Treatments "
Why WINS?
This study used interpretative phenomenological analysis to obtain a rich understanding of mothers' experiences with their child's juvenile idiopathic arthritis (JIA) treatments. Mothers identified a multitude of ways in which their child's JIA treatments impacted their own lives, from their roles within the family to their own well-being and decision-making.
Interactive question
Do you consider valuable to incorporate the mother experiences and expertise/knowledge in their child JIA treatment decisions to improve adherence to treatment regimens?
Share your response with us using the hashtag #WhatIsNew and tag us @EMEUNE
December 2022
" Gout Flare Severity From the Patient Perspective: A Qualitative Interview Study "
Why WINS?
Establishing meaningful flare reporting in clinical trials would involve defining the most appropriate methods of taste flare measurement. An important step in achieving this is to better understand, from the patient's perspective, which factors make the experience of a flare more or less severe. This study aimed to examine what factors contribute to the severity of a gout flare from the patient perspective
Interactive question
Which key theme would be more impactful on real-life management of gout flares?
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Flare Characteristics
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Impact on Function
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Psychological Impact
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Impact on Family and Social life
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Share your response with us using the hashtag #WhatIsNew and tag us @EMEUNE
November 2022
"Patient involvement in basic rheumatology research at Nijmegen: a three year's responsive evaluation of added value, pitfalls and conditions for success"
Why WIN?
Patient involvement in basic research projects is under-examined; however, patient-researcher collaboration may have a beneficial impact. This 3 years’ study involving 13 patient research partners (PRP) explores the impact of patient involvement in basic rheumatology research and identifies barriers and facilitators to the process.
Interactive question
Patient involvement in basic research projects motivates and encourages researchers to look at their work more widely from a patient perspective.
Agree / disagree
Share your response with us using the hashtag #WhatIsNew and tag us @EMEUNET
October 2022
"Telemedicine in rheumatology: a mixed methods study exploring acceptability, preferences and experiences among patients and clinicians"
Why WIN?
During the Covid-19 pandemic, patient care rapidly shifted towards Telemedicine (TM). Yet, some questions remain about its acceptability and safety in rheumatology. This study investigated patient and clinician experiences about TM. Although TM felt more convenient, there was a global preference to face-to-face consultations and some concerns were raised about TM (eg, diagnostic inaccuracy, barrier to patient-clinician relationship).
Interactive question
Telemedicine (TM) is convenient and acceptable for some rheumatology patients. However, careful patient selection and choice are key to increase acceptability and safety of TM.
Agree / disagree
Share your response with us using the hashtag #WhatIsNew and tag us @EMEUNET
September 2022
"Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients' perspectives"
Why WIN?
Patient education (PE) is an important part in the management of inflammatory arthritis (IA). It engages patients to make informed choices about how to manage their disease and facilitate collaborative care. This study disseminated the EULAR recommendations for PE to patients with IA across many countries in Europe and showed very high level of agreement with the recommendations among patients.
Interactive question
Patient education engage patients to actively participate in the management of their disease and facilitate the shared decision making.
Agree / disagree
Share your response with us using the hashtag #WhatIsNew and tag us @EMEUNET
May 2022
"Exploring Family Planning, Parenting, and Sexual and Reproductive Health Care Experiences of Men With Rheumatic Diseases"
Why WINS?
This qualitative study sought to explore in depth the experiences of male patients with respect to family planning, parenting, and SRH; their concerns and information needs related to their diseases and DMARDs; and preferences for family planning care and counseling in the rheumatology context.
Interactive question
Do you consider that men with rheumatic diseases may benefit from more frequent discussions initiated by rheumatologists about family planning, parenting, and sexual and reproductive health?
yes / no
Join the discussion on twitter... Share your response with us using the hastag #WhatIsNew and tag us @EMEUNET
April 2022
March 2022
February 2022
December 2021
November 2021
October 2021
Jan 2021
December 2020
Nov 2020
October 2020
Sep 2020
February 2020
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December 2019
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February 2019
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December 2018
Nov 2018
October 2018
Sep 2018
Click here to be directed to the article by van Onna et al (2018).
Aug 2018
Click here to be directed to the article by Verhoef et al (2018).
July 2018
Click here to be directed to the article by Hirsh et al (2018).
June 2018
Click here to be directed to the article by Khanna et al (2018).