Library

Find here useful documents and resources linked to activities that our cross-European sarcoidosis patient advisory group has been driving forward to raise awareness of the needs of people with sarcoidosis.

A call to change 'fitness to work' assessment

An article, published in the Lancet Respiratory Medicine, has called for a re-think of how people with sarcoidosis are assessed to see whether they are fit to work.

Nearly 200 leading specialists in sarcoidosis, including clinicians, researchers, other healthcare professionals and patient associations represented in the ELF sarcoidosis patient advisory group, endorsed and authored the comment article, published in The Lancet.

It discusses the urgent need for fairer fitness to work checks, also known as work capacity assessments, and calls for change and suggests that a more holistic patient-centred approach should be used; one that considers the range of symptoms that a person living with sarcoidosis might experience, alongside lung function tests. You can read the full article here.

The authors of the paper have produced an infographic that summarises their proposals. This serves as an example of a practical tool for fairer assessment which they actively promote in the hope of influencing changes to the standard assessments currently in use. The assessment considers a range of things that might affect the body including the ability to perform daily activities that are fundamental to a person’s ability to work.

Members of the sarcoidosis patient advisory group will follow up on this article and work on new resources and practical information around employment which can be shared in their own countries.

You can help too by sharing the information about the article and the infographic in your own country. View the downloads below:

Webinars: Understanding the professional guidelines

Duration: 60m

To help people with sarcoidosis and their family members understand the latest treatment recommendations outlined in the new European Respiratory Society medical guideline for clinicians. Watch webinars recorded in English, Spanish, Italian, French and German.

A pre-recorded presentation about the guideline is also available in Chinese Mandarin, Danish, Dutch and Serbian.

With thanks to Professor Bob Baughman, Professor Jacobo Sellares, Professor Paolo Spagnolo, Professor Domnique Valeyre, Professor Dominique Israel-Biet, Dr Francesco Bonella, Professor Violeta Vucinic, Dr. Marcel Veltkamp, Professor Elisabeth Benstrup and Dr Yue Huang.

Lay summary: Treating sarcoidosis - understanding the professional guidelines

Available in 9 languages

A document aimed at people living with sarcoidosis, or their care givers to explain the recommendations in the European Respiratory Society (ERS) clinical guideline for the treatment of sarcoidosis.

This document covers cases of sarcoidosis that affects the lungs, the skin, the heart and brain as well as fatigue (extreme tiredness) that is caused by sarcoidosis. It does not include treatments related to other issues, such as eye issues or pain associated with the condition. This is because there is not yet enough research into these areas to draw conclusions about the best treatments

Available in English, Danish, Dutch, French, German, Italian, Serbian, Spanish, and Swedish.

Access all languages: Treating sarcoidosis - understanding the professional guidelines

Patient charter

The Sarcoidosis Patient Charter outlines our joint strategy for the future improvement of patient care and quality of life for people with sarcoidosis.

We hope that the charter’s Call for Action will raise awareness and widen understanding about the impact that this condition has on many people.

We call on patients, caregivers, healthcare professionals, policy makers and the general public to support the charter and to help disseminate it as widely as possible:

Resources from FSR

Treatment priorities for patients

Image of ERJ Open Research article on sarcoidosis treatment prioritiesA joint letter - Sarcoidosis: patient treatment priorities - highlights the findings of an international patient survey.

The survey asked people with sarcoidosis to rate the importance of different treatment outcomes: 1,842 people responded, with 'quality of life' and 'functionality' ranking as the two most highly-rated outcomes for treatment and care.

The letter 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.

The letter was written by the ELF sarcoidosis patient advisory group and healthcare professionals working in the field. A poster on the survey's preliminary findings was presented at ERS International Congress 2018. Download poster as a PDF.

Patient compass

Patient journey

In 2020, a sarcoidosis patient journey was developed by the group as part of the activities of ERN-LUNG.

This journey represents the views of the patient community and was based on a report that sarcoidosis patient organisations identified as the most important priorities/issues for individuals with sarcoidosis in the areas of diagnosis, treatment, follow-up care, education and communication.

We hope it will be used to inform clinicians about the needs of people with sarcoidosis at different stages of their journey.

Glossary

Common words relating to sarcoidosis with an explanation: