New patient focussed initiatives unveiled at EULAR 2016

June 08, 2016

London, United Kingdom, 8 June 2016: Results from patient-focused initiatives unveiled at the European League Against Rheumatism Annual Congress (EULAR 2016) have highlighted the importance of seeking and better understanding the patient perspective, as well as actively encouraging patient participation, to optimise care of rheumatic diseases.

Findings from these patient-focused initiatives show:Patient survey highlights importance of treatment conversations between patients and HCPs

Although many patients are satisfied with their RA treatment, non-adherence persists and many would like to discuss and/or change their currently prescribed treatment, but don't discuss it through fear of their care being compromised. This was the main finding from a patient survey, developed by the RA NarRAtive global advisory panel, which was designed to better understand the perspective of patients regarding management of their RA and interactions with their physicians.1

The RA NarRAtive initiative is the first survey of its kind to simultaneously evaluate the patient/HCP relationship and communication, as well as patients' experience and satisfaction with treatment and disease management.

More than 3,600 adults with RA from 13 countries responded to the patient-based survey. Almost one-half of RA patients under HCP care acknowledged that dialogue with their physician would optimise management of their condition. However, around six out of every ten respondents felt uncomfortable raising treatment/disease concerns to their HCP, feeling anxiety about raising too many questions and consequentially being perceived as a difficult patient.

Although the current treatment goal for physicians is to achieve clinical remission or low disease activity, patients most commonly defined successful treatment as a reduction of pain and/or joint swelling/inflammation (81%) and improvements in quality of life (77%).

"Further understanding the responses from this survey will be important to facilitate communication between patients and HCPs, with the ultimate aim of improving treatment outcomes," said lead author Ms Cheryl Koehn, President of Arthritis Consumer Experts, Vancouver, Canada.

Of the 2,139 RA patients receiving medication, just over one-third admitted to not taking it as prescribed. Overall, just over three-quarters of patients currently taking RA medication were satisfied with their treatment regimen; however, 70% desired fewer medications, more than one-half were worried their medications would fail, and more than one-half wanted more medication choices. Aspects of current prescribed treatment that RA patients would most like to change included: number and frequency of medications (35%); side effects (34%); access to, or cost of treatment (30%); availability of monotherapy (25%); alternative to subcutaneous injections (18%); inconvenience or limitations from medication (16%); and mode of administration (12%).

Stimulating patient participation in treatment planning improves outcomes

The perceptions and values of patients and HCPs about the role and degree of active involvement of patients in multidisciplinary team care have received little attention to date. This study demonstrates how patients with rheumatic diseases and their HCPs highly value patient participation in multidisciplinary team conferences, with treatment plans developed in partnership encouraging greater patient commitment and better outcomes.

To explore views about the meaning and role of patient participation in team care, semi-structured face-to-face interviews were held with 12 HCPs and 10 patients with rheumatic diseases who were eligible for or had participated in multidisciplinary treatment, but had yet to be introduced to a team conference. Then, following patient participation in a team conference, telephone interviews were held with eight patients, and five HCPs were involved in a focus group.2

"Overall patients and HCPs highly valued patients' membership in the multidisciplinary team conference. Although HCPs needed to get used to this approach, they reported experiencing an open, honest and truthful team dialogue with their patients. A truly shared treatment plan, developed in partnership between patients and HCPs, led to a greater patient commitment to their treatment. Our hope is that by making this standard clinical practice, we can improve treatment adherence in this challenging disease area," said lead author Ms Johanna Vriezekolk of the Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands.

Although patients' involvement in team care varied from passive receiver to a meaningful exchange with their HCP, opportunities for improvement were identified, including providing more information about treatment, facilitating patient involvement in goal-setting, planning and evaluation of treatment, and stimulating patient's responsibility of care.

Some patients admitted feeling tense, however, overall, the atmosphere was felt to be safe. Patients experienced an honest, transparent and respectful interaction between themselves and their HCPs. They felt they were taken seriously, their needs were taken into account, treatment goals were set in mutual agreement, and the resulting therapeutic interventions were clear and satisfactory.

Expert patients provide vital perspective in updated medical educational programmes

Patient Partners are expert patients who train medical students, general practitioners and other healthcare providers about the clinical presentation of and treatment challenges associated with RA. A direct objective is to improve musculoskeletal examination skills, facilitating appropriate referrals, fast diagnosis and early treatment initiation.

"The update of the Belgian 'Patient Partners' programme is a good example of how much added value expert patients are able to provide to clinical training programmes. Making medical students and healthcare providers aware of the patient perspective is an important step towards optimal care in RA," said lead author Mr Jef Van Rompay of the Patient Partners® Program, Vosselaar, Belgium.

Based on new data about early intensive treatment strategies, patient beliefs and preferences in early RA, as well as the hurdles to implement optimal care strategies, the patient perspective was incorporated into four new content modules covering treatment delay, perceptions about medication, patients and their environment, and active participation.3

The development of these new modules involved seven patient partners with RA who took the lead in the project, supported by one rheumatologist, one nurse specialist and two doctoral researchers active in the field of early RA.
Abstract Numbers: OP0014-PARE, OP0248-PARE and OP0269-HPR


For further information on this study, or to request an interview with the study lead, please do not hesitate to contact the EULAR congress Press Office in the London Suite at ExCel London during EULAR 2016 or on:


Onsite tel: +44 (0) 7725 915 492 / +44 (0) 7786 171 476

Twitter: @EULAR_Press

Youtube: Eular Pressoffice


The European League Against Rheumatism (EULAR) is an umbrella organisation which represents scientific societies, health professional associations and organisations for people with Rheumatic Musculoskeletal Diseases (RMD) throughout Europe.

EULAR aims to promote, stimulate and support the research, prevention, and treatment of RMD and the rehabilitation of those it affects.

EULAR underlines the importance of combating rheumatic diseases not only by medical means, but also through a wider context of care for rheumatic patients and a thorough understanding of their social and other needs. EULAR is supported in this mission by its 45 scientific member societies, 36 PARE (People with Arthritis/Rheumatism in Europe) organisations, 22 HPR (Health Professionals in Rheumatology) associations and 23 corporate members.

The EULAR Annual European Congress of Rheumatology is the foremost international medical meeting announcing the latest research on rheumatic and musculoskeletal diseases. EULAR 2016 is expected to attract over 14,000 delegates from around 120 countries. Most if not all professions working in the vast field of RMD will be represented.

To find out more about the activities of EULAR, visit:


1. EULAR 2016; London: Abstract OP0248-PARE

2. EULAR 2016; London: Abstract OP0269-HPR

3. EULAR 2016; London: Abstract OP0014-PARE

4. Smolen JS, Breedveld FC, Burmester GR, et al. Treating rheumatoid arthritis to target: 2014 update of the recommendations of an international task force. Ann Rheum Dis 2016; 75: 3-15.

5. [Accessed 16 May 2016]

European League Against Rheumatism

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