Background In 2014 EULAR Young PARE conducted a research (PARE Youth Research) to gather information about how young people (aged 18–35) living with rheumatic and musculoskeletal diseases (RMDs) are organized in different European countries and to explore their specific needs, obstacles, preferences and priorities. The research was developed through a survey launched in countries with EULAR members organizations and a total of 2,329 validated responses from the target population were obtained. In 2015 ANMAR Young, Italian National Association for people with RMDs' (ANMAR) youth group, was born aimed to create a network of young people with RMDs living in this country.
Objectives Taken the socio-economical and cultural differences across countries, as well as the need to tailor interventions, activities and projects of national youth groups accordingly, the purpose of this study was to map out specific insights about Italian young people living with RMDs.
Methods Data from Italian responders to the survey of the PARE Youth Research Project survey were extrapolated and answers were encoded to be analyzed using SPSS 21.0 software. Descriptive statistics were calculated in the whole group as well in subgroups of subjects as needed.
Results 81 young Italian people living with RMDs responded to the survey: 75 females and 6 males. The conditions reported most often are rheumatoid arthritis (36%), juvenile idiopathic arthritis (23%), ankylosing spondylitis (15%). The work on PARE Youth Research's Italian data shows some important insights, among which we highlight that 84% report a delay in their studies due to the rheumatic condition, 92% report that the condition has affected their ability to work; 90% report the impact of RMD on social life, 70% report an impact on sexual life and 83% on mental health. Focusing on mental health issues, we highlight that 69% express the need for psychological support while only 43% have the possibility to access psychological support. Although all patients reported that after being diagnosed with an RMD they have access to a rheumatologist for regular follow-up visits, an average 3-year diagnostic delay is reported.
Conclusions The results from the analysis of Italian responders to the survey represent a crucial starting point to put in light the unmet needs of Italian young people living with RMDs. These findings will be of great help to develop a fruitful national network of young people with RMDs on one hand and a focused collaboration with patient representatives, physicians, and health professionals (HPs) on the other. We believe that the awareness of physicians and HPs working in the field of rheumatology about the needs and priorities of young people with RMDs will ensure a better management of the disease and therefore lead to the reduction of the RMD burden in this subgroup of patients.
EULAR Young PARE - Final Report PARE Youth Research Project (2014).
Disclosure of Interest None declared