Sarcoidosis and labour participation:

Survey how to assess physical and mental capacities in sarcoidosis?

Participation is the current buzzword. We are living in a world where people are increasingly expected to participate, for instance at work and in managing their own care processes; in fact, everyone is now expected by society to ‘take part’ at all levels. But how realistic are such expectations for people with sarcoidosis? Not everyone realises the huge impact that sarcoidosis can have on someone’s quality of life, physical and mental capacities, and social life. Although sarcoidosis often causes severe fatigue and reduced exercise tolerance, other people usually do not notice this. Furthermore, participation in labour and the work-related activity level may be reduced.

Labour participation

Labour participation is important for people with health problems. To date, it is vital that the assessments of sarcoidosis related problems of patients are taken seriously and being listened to. There is an urgent need for more information and guidelines to assess the physical and mental capacities of patients with sarcoidosis, to ensure that lung function is not the only aspect taken into account in the assessment process. Recommendations should be developed which can be followed and used in the decision-making process.

Questionnaire

Together with patients societies the ild care foundation has developed a questionnaire on how to assess physical and mental capacities of patients with sarcoidosis.

Different countries

The survey has been open for Dutch sarcoidosis patients and over 1000 patients have responded. At this moment the survey is open for Danish, French and German sarcoidosis patients. Here are the links:

Danish survey
French survey
German survey

Aim of the survey

The results of this survey will be used to prepare the development of guidelines for assessing the physical and mental capacity of people with sarcoidosis.
The guidelines will be used to ensure that the authorities including occupational health and safety services, doctors employed by a benefits authority, vocational experts and/or an insurance company are taking a chronic condition into account for correct appraisal of health-related problems of patients suffering from sarcoidosis.

Participating International Sarcoidosis Experts

In Europe several countries are participating in the Survey: Sarcoidosis and labour participation.

In the Netherlands coordinators are prof. Marjolein Drent (also initiator), Celine Hendriks (researcher) and Rob van Jaarsveld (SBN: Sarcoïdose Belangenvereniging Nederland)
For France the coordinator is prof. Dominique Israel Biet.
In Germany Dr. Francesco Bonella and Dr. Bernd Quadder (Deutsche Sarkoidose Vereinigung) are coordinating.
In Denmark Dr. Janne Møller coordinates the Survey issue.

Overall coordinator on behalf of ild care foundation: Marjon Elfferich