Background When diagnosed with a rheumatic condition (RMD), we turn to rheumatologists and other specialists for the best treatment possible. We rely on medication and exercise to minimize the impact of our conditions. While living with a chronic disease, people develop a certain expertise themselves. An expertise that differs from what rheumatologists know, but nevertheless is extremely valuable.
Objectives ReumaNet wanted to know what patients think about their care and how they believe things can be improved. By communicating the results to health care providers, policy makers and industry, ReumaNet wants to start a unique collaboration between professionals and patient experts to improve care for people with RMD's.
Methods ReumaNet, the Flemish patient organisation for people with RMDs, developed a survey together with its partners (= rheumatologists, health professionals, industry). The survey was launched in February 2015 and ran until June 2015. It contained 40 online questions for people with an RMD and covered the following items: information, treatment, research, relation with Health Professionals (rheumatologist, physiotherapist, general practitioner and pharmacist), communication between these care takers and the role of patient organisations (POs).
Results 711 people completed the questionnaire. Most people completed the questionnaire online, 50 surveys were filled in on paper by people not familiar with a pc. The majority had RA (48%), but also AS, PsA, JIA, CTD, fibromyalgia, OA and osteoporosis or a combinations of different RMD's were represented. The results were analysed in different ways: conditions, age, gender, time of diagnosis. A part of the survey was also analysed based on medication.
Only 48% considered themselves well informed about their condition and only 34% were well informed about their treatment and medication. Specially people with a diagnosis of less than 6 months are in great need of more info. A fear of side effects are the main reason not to take medication as prescribed (51%).
Fatigue and heredity are the most important issues that should be on the research agenda, according to patients. Rheumatologists score 7/10 on the question: “How satisfied are you with your rheumatologist”. Not listening to the patient and not taking him or her seriously are the biggest concerns. Communication between rheumatologist and GP only scores a low 6/10. Most patients do not even know if there is some form of communication and if there is, this obviously is not satisfying for all parties involved.
Other HP's score around 80%, which means people with RMD's are happy with their interactions.
Spreading information among patients is the biggest task for POs (82%). Young people have the greatest need to meet with peers, but 21% of the same group does not even know a PO exists.
Conclusions The results were presented during the World Arthritis Day Symposium of ReumaNet, where the different target groups were present. A debate started the first discussions on these important topics. Health care providers, industry and policy makers were asked how they would tackle the issues in the next five years. ReumaNet is currently meeting with all stakeholders to work together towards better care for all people with RMD's. Opening a 'Reuma Expertise Huis', a place where all expertise on RMD's can come together, was a first step.
Disclosure of Interest None declared