SIP Survey - European Road Map Monitor 2019
Vittoria Carraro – EFIC, Belgium
In 2011, the Societal Impact of Pain platform published the Road Map for Action. This called on European governments and EU institutions to establish an EU platform to enable the exchange, comparison, and benchmarking of best practice between Member States on pain management and its impact on society; and use the platform to monitor trends and provide guidelines to ensure harmonisation across the EU.
Based on this document, a questionnaire was designed by EFIC to establish a tool to monitor the implementation of the road map at a national level throughout Europe which has been done with a survey in 2011 for the first time. The survey was repeated in 2014 and results were presented at the SIP 2016 Symposium.
In 2019, the survey was further evolved with a project team not only to look at the status of national guidelines and action plans, but to reflect on the status of policies supporting the updated priorities of the Societal Impact of Pain platform. The final survey report provides background evidence and key findings that further substantiate the recommendations and commitments made within the Societal Impact of Pain’s 2018 Thematic Network SIP Joint Statement on the four key priorities (indicators, research, education, employment) as well as major achievements and challenges per country.
A pilot has been conducted in Spain in July 2019 to test the feasibility of the questionnaire before it has been broadly rolled out from Sep-Nov 2019. The survey was designed as an online survey and submitted to all European representatives of the SIP partners.
The 2019 survey collected information on:
- General questions related to national guidelines, regulations, pain plans and pain networks
- Indicators related to the measurement and monitoring of pain
- Research, notably on funding of pain Research
- Employment, with pain as the number one reason for absenteeism and disability
- Education, assessing whether pain is a dedicated subject for healthcare professional training, patient education and general public awareness
Data have been consolidated per country in a standardised way and have been validated via other resources as available.
- 51 respondents from 26 European countries provided data which have been respected in the report
- Healthcare professionals (28), Patient organisations (12) and industry (11)
- While progress has been made since the 2011 survey, there are still large discrepancies between European governments on the establishment and implementation of specific national pain plans, and limited legal structures are in place to enforce uptake of what is available.
- Nearly two-thirds (16/26 (62%)) of countries surveyed now report having national guidelines for pain management in place.
- Just over a third (11/26 (42%)) have launched action plans most commonly covering both acute and chronic pain with national working groups set up to report on progress (check current national/regional pain plans).
- More than half (15/26 (58%)) of the countries report not having a multi-stakeholder platform in place to represent the Societal Impact of Pain. However, 14/25 (56%) do say they now have nationally agreed multidisciplinary teams that meet IASP criteria.
- There is a lack of prioritisation across EU Member States for measuring and monitoring both pain as an outcome and pain as a quality indicator and more needs to be done to align to WHO directive and classifi cation in these areas.
- Pain is not prioritised within national research strategies and best practice approaches such as the establishment of pain registries, collection of broad socioeconomic data, or inclusion of patients in research is not being closely followed.
- Policies are in place to try to maintain workability for those living with pain, although more needs to be done to ensure the support stays in place and that a holistic, centralised approach is established.
- Progress has been made with the incorporation of pain into undergraduate medical education in many countries but there are gaps in government initiated public education and resources for patients and caregivers on how to manage pain.
Conclusions and Outlook
Overall, great examples of progress have been made in the countries surveyed. However, there is still a long way to go before all EU Member States meet the standards for pain set out in the Road Map for Action and to ensure that every country has some form of national guideline as well as an action plan for pain management in place and implemented.
The SIP community remains committed to working across Europe to establish the foundations for a consistent standard of pain management, and from there work towards improving every aspect set out under our policy priorities - towards greater prioritisation of pain within European health system Frameworks.
The SIP national platforms and other national pain organisations should use this information to further investigate and identify gaps in their national policy environments and inform policy makers around the Societal Impact of Pain’s four policy priority areas.
Preliminary results of this Survey were presented at the SIP 2019 Symposium on 7 November 2019 in Brussels before the final report has been prepared.
We would like to express our thanks to the experts who contributed to the design and analysis of the Road Map Monitor survey 2019, especially Paul Cameron (NHS Fife Pain Management Service, Scotland) and Deirdre Ryan (Chronic Pain Ireland), to Cesar Margarit Ferri (SIP Spain) who supported the pilot for this survey, and to all the SIP partners and national representatives, who provided their answers and input into the survey.