Background There was the need and wish of youth organisations and PARE organisations to improve the services to young people with Rheumatic and Musculoskeletal Diseases (RMDs). In order to be able to do this, it was necessary to gain more insight into the needs of young people with RMDs and their organisations, and insight into what is currently available in terms of activities and organisations for young people with RMDs across Europe.
Objective To gather information about the way young people with RMDs are organised in different European countries and to explore the needs, obstacles, preferences and priorities of young people with RMDs and their organisations.
Method For this study the age range of 18 - 35 years old was used. An explorative study using mixed methods was performed. To gather information about the way young people with RMDs are organised a mapping study on youth activities on an organisational level was used.
To explore the needs, obstacles, preferences and priorities of young people with RMDs first a qualitative study (interviews and focus groups) was performed and based on this gained information an online survey was developed. The survey was translated into 18 languages and spread broadly. For promotion of the survey the website www.youngpare.org was built.
Results The mapping exercise showed that from the 40 participating PARE organisations, 22 countries reported some form of activities for young people with RMDs. In 18 countries no activities were reported. There is a big difference in how youth is defined in terms of age limits. Varying between 0 till 55 years old.
The qualitative study gathered the experiences of 27 young people in total. Based on analysis of the interviews and focus groups the task force came up with six main categories: Me, Myself & I, Health care, Education, Work, Social life and Family&intimacy.
The final analysis used data of 2329 respondents from 41 European countries. Most (66%) respondents were not a member of a patient organisation.
Results reveal more than half of the respondents are never or only sometimes satisfied with their life and young people never or only sometimes feel optimistic about their future. Most people (69%) prefer not to talk about the condition, they feel disadvantaged if others know about their disease.
Data shows that patients with more common diseases and members of patient organisations (compared to non-members) have somewhat better access to the rheumatologists.
About half of the respondents had a RMD during their studies, 74% of them reported delays in their study. Most reported more awareness about rheumatic diseases among teachers would have been helpful. Only 29% of those who had a RMD during their studies reported that they had managed at school without assistance.
In total 95% of the respondents admit that a RMD has a negative impact on their work ability. About half of the respondents (48%) were always or very often able to support themselves financially.
A majority of the respondents reported that having a RMD interferes with their social life (93%) and has an impact on their mental health (92%). The main obstacles for participation in social activities are pain and fatigue.
Most respondents (83%) admit that their RMD interferes with their sexual life. The main problems interfering with sexual life are pain/discomfort and fatigue.
Conclusion Collected data confirm that having a RMD has a huge impact on many domains of life. With these results, we not only have a solid base-line picture of the current needs and obstacles of this patient group, but we also have a good starting document to develop a youth strategy for the future and a practical plan of actions for EULAR, youth groups and PARE organisations.
The full research report is available at www.youngpare.org
Poldemaa I, Tammaru M, de Wit M (2014): Final report - PARE Youth Research Project.
Disclosure of Interest None declared