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ENCA 2016 - Genoa - Bas Vastert

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SHARE: results and what to come next !

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ENCA 2016 - Genoa - Bas Vastert

  1. 1. SHARE: results and what to come next! Bas Vastert and Nico Wulffraat, pediatric rheumatologists, PhD ENCA Meeting, PRES Congress Genua, 2016
  2. 2. - Background - Results up to 2016 - Next steps and challenges Outline
  3. 3. SHARE: Single Hub and Access point for paediatric Rheumatology in Europe EU (EAHC) funded project running from 09-2012 until 12-2015 Aiming to improve care and research collaborations for paediatric rheumatology in Europe and beyond Background
  4. 4. OBJECTIVES of the SHARE project • Identifying specific needs in each EU country • Best practices for diagnosis and treatment of PRD • Create central platform for exchange of information, data and samples • Identify best practices for obtaining ethical consent • Implementation of results into training programmes • Involve parents/patients as stakeholders
  5. 5. • WP4: Addressing the need for health care for PRD throughout Europe • WP5: development of best practices on diagnosis and treatment for PRD • WP6: Reinforcing the network (patient information / website) • WP7: Barriers between nations for data collection and data sharing Output workpackages
  6. 6. WP4: Addressing the need for health care for PRD throughout Europe Output: - 1-2 manuscripts describing the current situation in Europe Output workpackage 4
  7. 7. WP4: Addressing the need for health care for PRD throughout Europe - Providing the opportunity to zoom in on individual countries - Influence health care authorities - Collaborate with national patient organisations Opportunities workpackage 4
  8. 8. WP4: The need for optimal care in Europe •3 surveys: National PRINTO co-ordinators/PReS country representatives, Centre directors and individual members WP6: Reinforcing the network (patient information and participation) •Extensive update of network and information •Patient Survey prepared by ENCA and Wulffraat •Circulated by parent organisations with help of centers •Data collection Web based at Printo website WP4: Doctors view WP6: Patients view
  9. 9. WP6 patient survey on PRD across Europe Topics in patient survey •Referrals •Paediatric rheumatology Team and Cooperation • Transition of care • Use of webportals, help lines, medical reports • Access to (expensive) medication • Pain management • Participation in research • Financial aspect • School issues • Special rehabilitation and employment issues
  10. 10. Patient survey respondents (n=457), per country of origin
  11. 11. Patient survey respondent, country of origin Replies pooled per region: WEST-EAST and North-South No replies from: Bulgaria, Croatia, Greece, Poland, Rumenia, Bosnia, Estonia
  12. 12. Patient Demographics JIA Subtype
  13. 13. Was your child referred to a paediatric rheumatologist within 6 weeks of reporting the initial symptoms to your doctor?
  14. 14. How long was it between referral to the paediatric rheumatologist and the first clinic appointment?
  15. 15. WP5: doctors survey Acces to (pediatric) rheumatologists percentage of PRD patients in your country managed by general paediatricians? West Europe East Europe Latin America Other Countries Total p-value N 14 8 3 8 33 0.12 < 25% 8 (57.1%) 2 (25.0%) 1 (33.3%) 4 (50.0%) 15 (45.5%) 25-50% 5 (35.7%) 4 (50.0%) 0 (0.0%) 1 (12.5%) 10 (30.3%) > 50% 0 (0.0%) 1 (12.5%) 0 (0.0%) 2 (25.0%) 3 (9.1%) not known 1 (7.1%) 1 (12.5%) 2 (66.7%) 1 (12.5%) 5 (15.2%) percentage of PRD patients in your country managed by adult rheumatologists? West Europe East Europe Latin America Other Countries Total p-value N 14 8 3 8 33 0.11 < 25% 12 (85.7%) 7 (87.5%) 1 (33.3%) 3 (37.5%) 23 (69.7%) 25-50% 0 (0.0%) 1 (12.5%) 1 (33.3%) 3 (37.5%) 5 (15.2%) > 50% 0 (0.0%) 0 (0.0%) 0 (0.0%) 0 (0.0%) 0 (0.0%) not known 2 (14.3%) 0 (0.0%) 1 (33.3%) 2 (25.0%) 5 (15.2%) percentage of PRD patients in your country are managed by paediatric rheumatologists? West Europe East Europe Latin America Other Countries Total p-value N 14 8 3 8 33 0.10 < 25% 0 (0.0%) 0 (0.0%) 0 (0.0%) 3 (37.5%) 3 (9.1%) 25-50% 4 (28.6%) 2 (25.0%) 1 (33.3%) 1 (12.5%) 8 (24.2%) > 50% 10 (71.4%) 5 (62.5%) 1 (33.3%) 3 (37.5%) 19 (57.6%) not known 0 (0.0%) 1 (12.5%) 1 (33.3%) 1 (12.5%) 3 (9.1%)
  16. 16. WP5: development of best practices on diagnosis and treatment for PRD Output: - 8-10 manuscripts for best practices in each PRD (+ periodic fevers) - Providing the first international, multi-disciplinary consensus and evidense based diagnostic and treatment guidelines for JDM, childhood SLE, childhood vasculitides! - Providing opportunities for professionals and patient organizations to improve national / local acces to care/ expert advise / new therapies Workpackage 5
  17. 17. Methods literature review Date literature review: June 30th , 2013
  18. 18. - Paper selection on predefined criteria - JIA: 172 papers - JDM: 108 - SLE/APS: 128 / 15 - Scleroderma: 52 / 37 - All papers scored by 2 experts independently on validity and level of evidence. In case of disagreement: 3rd expert - Results grouped and developed into recommendations - Web-based survey to pre-test recommendations Methods: from evidence to recommendations
  19. 19. Methods: consensus finding • Nominal group technique • Consensus reached when ≥ 80% agreement • Focused on evidence based recommendations
  20. 20. Selection cross-cutting statements 1. Clear guidelines of referral to Paediatric Rheumatology are needed for all centers in fostering the prompt and early diagnosis and management of PedRD. 2. Children with rheumatic disease should be cared for by peadiatric rheumatologists. This may be done by means of shared care, which must include a good mechanism for communication between teams. 1. Patients should be seen by a paediatric rheumatologist and, depending on the clinical presentation of the PRD, members of a multidisciplinary team. This team should consist as a minimum of a nurse, specialised in PRD, a physio / ocupational therapist and acces to a psychologists or psychosocial worker
  21. 21. Selection JIA specific statements: general aspects 1. New JIA patients should be seen in a specialised center for PRD within 4 weeks after referral. 2. New JIA patients and those started on a new therapy, should be reviewed within 2-3 months after initiation of therapy to evaluate compliance, side effects and progression of disease. 3. Response to ongoing therapy should be assessed every 3-6 months, preferably by using standardized disease activity tools, for example the JADAS.
  22. 22. How to get access and reimbursement for therapies for PRD? Dutch situation: 1: EMA registration: automatically in the process for negotiating reimbursement 2: Off label: for example rituximab for JDM “advise” needed from the scientific community.. => SHARE fulfills the criteria for such advise! Subsequently: Negotiations start with health care authorities, pharma and insurance companies on pricing /reimbursement Opportunities WP5
  23. 23. WP 6 Reinforcing the network Extensive Update of PRINTO website •Update of patient information •Translation into EU languages •Engaging active patient participation (ENCA) Output and opportunities WP6
  24. 24. WP7: barriers between nations for data collection and sharing (1) to identify best practices for ethical consent, data and sample collection (2) to improve quality assurance in data and sample collection (3) to identify ethical issues on data and sample collection and the exchange of these data and samples between European centres for carrying out research
  25. 25. Roadmap: Identifying barriers between nations for data and specimen collection and sharing Proposal for an international collaborative research project Recommendations for international collaborative research in pediatric diseases Evidence synthesis part 1: Systematic literature review Evidence synthesis part 2: Practical evidence gathering  Test proposals Germany/Europe  Interviews with Ethics Boards  Research partner barriers - survey  Patient related barriers - survey Legal Barriers Process barriers Patient related barriers Research partner barriers
  26. 26. Output WP7: barriers between nations for data collection and sharing -Multiple papers on data sharing, sample sharing, international collaboration, differences in procedures for obtaining ethical approval for new studies - Influence European policy makers in science and health care to critisize current differences in ethical approval bodies throughout Europe
  27. 27. The SHARE project provides: - mapping of the current situation in EU from both doctor and patient perspective (WP 4) - recommendations for diagnosis and treatment of PRD and thereby facilitate improvement and uniformity of care for PRD patients throughout Europe and beyond (WP 5) - guidance for diagnosis and treatment, the best practices can, and need to, be used to improve acces to treatment and care in individual countries (WP 5) - an update and improvement of patient information via the renewed website (WP6) - opportunities to take away hurdles for international collaboration in research (WP 7) Conclusions
  28. 28. questions ?

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