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#RAMatters: patient perspectives for better RA outcomes

05:00 EDT 13 Jun 2019 | LillyPad

Today's LillyPad EU guest post comes from Mariana Guerreiro, Lilly International Corporate Affairs Director – Rheumatology & Dermatology

Rheumatoid Arthritis (RA) severely affects the quality of life of those who suffer from it. It can make them compromise some of the most fundamental aspects of life. Things many of us take for granted. And yet the understanding of the needs and priorities of patients with RA remains limited, making it difficult to balance the hopes of patients and key treatment decisions and overall. With a better grasp of the needs of RA patients, RA health professionals and patients can tailor their care, and assist regulators in making decisions that will do most to reduce its impact.

To this end, Lilly, alongside other stakeholders in the RA field1, run a survey to gauge how RA affects the lives of people who suffer from it, available publicly on RA Matters. The survey findings were published this week at the European League against Rheumatism (EULAR) Congress. Results show that while progress has been made in addressing the burdens of RA, respondents feel that its physical and emotional impact is not well understood by people without the disease. Also, 30% of surveyed individuals living with RA hope their doctor will put a stronger focus on what matters most to them when making key treatment and management decisions.

In the context of these results, Lilly colleagues across Europe are working with patient organizations and medical communities to raise awareness and encourage an open dialogue to prioritize what matters to RA patients:

  • Susana Montañés, Spain: “ConArtritis, the Spanish RA patient group, has done great work to raise awareness of the importance and relevance of patient preferences in RA, but there is still a long way to go to fully integrate it into clinical practice. The Spanish patient advocacy group feels that there are still many patients who do not dare to express their preferences if their specialist does not initiate the conversation, while the approach to RA is being more patient-centric”.
  • Sabine Akiki, France: “Building on the findings of past survey findings, we launched a multi-stakeholder working group with ANDAR (Association Nationale de Défense contre l'Arthrite Rhumatoïde) to identify solutions that can help patients and healthcare professionals engaged in RA in France. It resulted in the creation of a ‘Discussion guide’ that enables patients to communicate effectively on their daily struggles, and doctors to gain an overview of their patients’ condition. It also lets patients define personal objectives. 
  • Anouck Auberson, Switzerland:  “We partner closely with Rheumaliga Schweiz, the Swiss RA patient group, to raise awareness and to reinforce the voice of the patient. Switzerland was not part of the survey but we collaborated by providing a patient story video. This story is based on a very inspirational patient interview. Daily life activities are challenging but a positive mindset and willingness to have a normal life can change a lot."

RA can be debilitating, and drastically reduce the quality of life of patients. Solutions for improving outcomes for patients by aligning care with patient needs do exist, but we need to listen to and better understand patients and work together if we’re to really make a difference. While more needs to be done, these initiatives show the willingness of all stakeholders to take steps towards including more patient perspectives in RA treatment, and RA Matters is supporting these conversations.


Footnote
1. Schlosspark Klinik, University Médicine, Berlin; Neil Betteridge Associates; Arthritis Centre Twente.

Original Article: #RAMatters: patient perspectives for better RA outcomes

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