FESCA Patient and Carer survey about Systemic Sclerosis or Scleroderma
About the survey
The objective of this qualitative study is to measure how different countries are performing against criteria related to scleroderma care and management.
FESCA is carrying out a Patient and Carer Survey on systemic sclerosis or scleroderma, with the objective of collecting data on the patient’s perspective on the socio-economic burden of the disease and the care pathway. The data gathered will be used to justify further attention and interventions from policymakers and health authorities. Stay tuned for the results!
The survey will collect data from patient organisations across the globe using a questionnaire developed in collaboration with medical experts and patient representatives.
We want to know more about patients’ experience in getting a diagnosis, receiving medical care, and managing their condition, as well as the impact of this disabling disease on their lives and the lives of people around them.
FESCA encourages all our members to disseminate the survey so that we can hear the voice of patients living with scleroderma.
Over the coming weeks, the surveys will be translated into local languages to ensure all patients and carers can share their stories.
Moreover, the results of the survey will inform a report that will highlight best practices and identify gaps where urgent policy action is needed. The collected evidence can be used by all of us to support advocacy efforts at European and national level to improve the patient pathway from diagnosis through to disease management and care!
Surveys are key tools to gather unique insights from patients and carers to improve the care pathway, and FESCA often promotes their dissemination.
If you are a scleroderma patient or a carer for a scleroderma patient, we encourage you to complete the survey to help us to continue working to improve the lives of the scleroderma patient community!
Below you will find the links to the Patient and Carer surveys. Click the link which is relevant to you. Once you have access to the survey platform, use the drop-down menu at the top left-hand corner to change to your preferred language. The survey will be available in the following languages: Croatian, Czech, Danish, Dutch, Finnish, French, German, Greek, Hungarian, Italian, Portuguese, Romanian, Spanish, Swedish, Norwegian, and Turkish.
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