The “Single Hub and Access point for paediatric Rheumatology in Europe” (acronym SHARE, project number 2011 1202; PI N. Wulffraat) aims to provide the European countries with recommendations for the care of children with rheumatic diseases. These recommendations are based on systematic literature reviews and on the surveys sent by PRINTO to individual centres belonging to its network all over the world.
To identify the specific needs for the optimal care in PRD, PRINTO implemented an online survey, available at www.printo.it/SHARE. In April 2018, more than 260 paediatric rheumatic centres had already completed the questionnaire.
Thanks to this project, PRINTO has updated and renovated its website for families, launched in 2003 (Ruperto N, et Al. for PRINTO/PRES Printo/Pres international website for families of children with rheumatic diseases: www.pediatric-rheumatology.printo.it. Ann Rheum Dis 2005; 64:1101-1106).
The new site www.printo.it/pediatric-rheumatology launched in December 2015, offers scientific information regarding the pediatric rheumatic diseases (PRD), the list of centres dealing with PRD, and the list of the family associations in more than 60 languages.
The update of the disease information texts on paediatric rheumatic diseases has been performed with the help of several experts (paediatricians and healthcare professionals of the PRINTO/PReS network) and lay members of PRD family associations. Highly specialised working groups have been formed for the update of each specific disease text, whereas the parents’ network ensured both reader-friendliness and completeness on everyday life and therapy issues. Afterwards, this final version has circulated among all the working group members for further reading and revision.
The updated English texts were then translated with the help of a professional agency in 14 languages (on the basis of national population and language diffusion). For all remaining languages, a translation process started with the involvement and volunteer contribution of all PRINTO/SHARE partners. The PRINTO national coordinators had the role to organize and lead the work process. To facilitate the translation process, the source texts in English were uploaded on a dedicated online platform implemented by PRINTO.
The new version of the website has been designed to adapt to the various portable devices, and allows all technical supports to browse easily among the contents – from a technical point of view, multimodality and user friendliness have been identified as the main characteristics to satisfy. Being a tool for families and patients, it includes customised illustrations created by professional illustrators, the possibility to share contents via the main social networks and a Search button (also available for voice search on smartphones), along with a map locating the centres and associations via Google Maps.
In order to ease the contents’ consultation for the patients and their families, PRINTO has implemented an APP for Android operating system. Its design and structure reflect the website, with three main sections.
Parent survey: in order to mirror the survey for physicians and have a clear picture of the standards of care from a patient/parent point of view, a dedicated survey has been prepared in a collaborative effort between Dr Nico Wulffraat and the ENCA (European Network for Children with Arthritis) members, represented by Ms Claudia Grave. The patient/parent survey has been translated in the following languages: Arabic, Czech, Danish, Dutch, English, French, German, Greek, Hebrew, Italian, Latvian, Lithuanian, Polish, Portuguese, Serbian, Slovak, Slovenian, Spanish.
Currently, almost 800 patients have completed the SHARE parent survey.