PARE0015 Large-scale survey offers general insight and basis for policy drafting
Authors: S. De Jong, I. Koopmans, M. Feith
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> The Dutch Arthritis Foundation (DAF) commissioned a large-scale survey to gain a broad insight into the various aspects of living with RMDs in the Netherlands. The results offer an insight into the prevalence of RMDs, as well as into living with RMDs and the use and standard of relevant healthcare and social care in our country. This was the first survey of this scale in the Netherlands. <h3>Objectives</h3> The survey aimed to generate data about the prevalence and the impact of RMDs on people's every-day lives in the Netherlands. The DAF will use the results to better inform parties involved in caring for people with RMDs and to help them with policy drafting, such as authorities, healthcare insurers and healthcare providers. <h3>Methods</h3> The bulk of all data consists of statistical data from the NIVEL Healthcare Registrations (from 355 GP clinics, which register 1.1 million RMD patients). The survey also built on statistical and qualitative data from Vektis (business intelligence centre for the healthcare industry) and the National Institute of Public Health and Environmental Protection. Patients were contacted through the National Panel for Chronical Patients and asked to score their quality of life, the impact RMD has on their lives, and the standard of care. Rheumatologists, health professionals in rheumatology and orthopaedics were also represented in the monitoring group. The survey was carried out for four key disorders – chronic inflammatory rheumatism, osteoarthritis, gout and osteoporosis. These disorders are registered by both GPs and specialists. Fibromyalgia is not registered as a specific disorder by GPs and was therefore outside the scope of the survey. <h3>Results:</h3> The report generated the following results for the more than two million people with RMDs in the Netherlands: 1 in 9 people have a RMD; More than 2 million people have a RMD; Every day, 700 people are diagnosed with a form of RMD; There are 1.3 million people with osteoarthritis; 400,000 people with osteoporosis; 370,000 people with gout; 220,000 people with inflammatory rheumatism such as RA, ax-SpA, SLE, Sjögren syndrome and scleroderma. 69% of people with RMD are restricted by their symptoms in their day to day life; 50% of people with RMD between the ages of 40 and 65 are not in paid employment; 54% of people with RMD indicate they suffer from loneliness; 50% of people with RMD deal with incomprehension; 65% uses medication, 37% physiotherapy. <h3>Conclusions</h3> The report shows the extent of the impact of RMDs, not only medically, but also with regard to social effects. This was the first study to adequately reveal the sense of loneliness among RMD patients, laying bare the incomprehension they face in others. It also studied the impact of RMDs on employment, the great reliance on voluntary carers, and the fact that many people with a RMD also suffer other symptoms. The report was able to pinpoint the most vulnerable patients, and therefore provides a clear indication as to where improvements can be made. It also clearly shows that there is room for improvement when it comes to the registration of specific disorders such as fibromyalgia, but also disorders classed as a form of inflammatory arthritis, to enable the generation of objective data from the registration systems. <h3>Disclosure of Interest</h3> None declared