Findings from the 2023 FESCA European patient survey
The Federation of European Scleroderma Association (FESCA) Europe-wide 2023 survey was established to highlight the unmet needs of people living with systemic sclerosis (also known as scleroderma), and to bring these issues to policymakers and health authorities to find solutions together. The survey aimed to complement existing clinical data with data from lived experience of diagnosis, treatment and quality of life. Based on survey findings, FESCA both highlights and provides recommendations for five key opportunities for improvement.
Summaries of findings
Improving outcomes through timely, accurate and appropriately delivered diagnosis.
A swift diagnosis is vital to ensure SSc does not progress unchecked, yet many people receive an incorrect or delayed diagnosis. This is caused by a lack of awareness and can be mitigated by ensuring that healthcare professionals in primary care positions are educated on early signs and symptoms, and clear diagnostic guidelines are set, so that clear, comprehensible and concise information can be relayed to the patient.
Empowering people living with SSc through shared patient-physician decision-making, together with access to community support.
Each individual with SSc experiences symptoms in a different way. For this reason, all patients should follow a clear, comprehensive treatment plan that takes their individual needs into account. To ensure this, shared patient/physician decision making should be included in clinical guidelines, and people with SSc should be provided with informational materials, including referrals to support groups and patient associations.
Providing equitable access to clinical trials and approved treatment options.
All people with SSc should receive the same opportunity to take part in clinical trials. To ensure this, national SSc patient registries should be established in compliance with the FAIR1 2 data exchange guidelines that make the information Findable, Accessible, Interoperable and Reusable and that would organize data on a common platform easily shared by SSc specialists across Europe.
Expanding access to multiprofessional3 care
The impact of SSc is not limited to physical and physiological symptoms: emotional issues, isolation, and complications relating to social, work and familial relationships also impact upon those diagnosed. Access to non-drug treatments should be prioritised by health services, and training for healthcare professionals on the importance of non-drug treatment should be provided.
Addressing the financial impact of SSc.
Many people with SSc are impacted financially by the condition, due to disruption in workforce participation and out-of-pocket spending. Disability benefits for SSc should be provided, alongside full coverage of both drug and non-drug treatments.
Patients’ insights on the impact of systemic sclerosis throughout Europe
Click on a country, to see the survey results in one go.
Acknowledgements
The Federation of European Scleroderma Associations (FESCA) would like to thank all the patients and caregivers who completed the survey by sharing their experience and the group of experts that. who contributed to this Position Paper by sharing their experiences and expertise.
References
- RD Connect, FAIRification of rare disease registries. https://rd-connect.eu/what-we-do/data-linkage/fairification/#:~:text=FAIRification%20of%20a%20rare%20disease,can%20be%20found%20by%20machines.
(Accessed on 31 October 2023). - National Guideline Centre (UK). Evidence review: Multiprofessional team: End of life care for adults: service delivery: Evidence review E. London: National Institute for Health and Care Excellence (NICE); 2019 Oct.
(NICE Guideline, No. 142.).
For full list of references please see the report.