Patients rate quality of life and functionality as treatment priorities for sarcoidosis in new article

Results from our patient survey on sarcoidosis treatment priorities have been published in ERJ Open Research.

Picture: Sarcoidosis patient advisory group members at ERS Congress, Paris 2018

A joint letter about the treatment priorities for people living with sarcoidosis, written by the ELF sarcoidosis patient advisory group and healthcare professionals working in the field, has been published in ERJ Open Research.

In early 2018, we launched an international survey aimed at people with sarcoidosis, asking them to rate the importance of different treatment outcomes to them.

1,842 people responded, with ‘quality of life’ and ‘functionality’ ranking as the two most highly-rated outcomes for treatment and care.

The letter highlights these results and also calls for:

  • The assessment of ability to work and the provision of supportive measures
  • Clinicians to work in a multidisciplinary way to ensure a holistic approach
  • For sarcoidosis specialist centres to be established in every country

Thank you to everyone who contributed their views to the survey. 

Read the full letter in ERJ Open Research (open access)

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