Fact Sheets Sarcoidosis


There are a lot of short texts concerning sarcoidosis out there, in different languages, for different target audiences. The text from Ganesh Raghu on the ATS site [1,2] is my reference from the viewpoint of the clinician - well structured and well formulated, embedded in a punch of other articles and declarations. The patient toolkit from FSR and Chest [3] is a good multimedia combination and has a nice glossary, the set of leaflets from Sarcoidosis UK [4] covers a broad spectrum of topics.
With input from patient societies my reference is the "SBN-Huisartsenbrochure" [5] in Dutch which also covers a lot of daily living concerns of patients.

Features of new Fact Sheets

There are lots of contents on different web pages of different levels of quality, sometimes also with videos. And I really appreciate the advocacy of Athol Wells for the partnership between doctor and patient [6] - Sarcoidosis UK did a good job, I like that interview format!

The most prominent page with hits for "sarcoidosis" is most probably wikipedia [7]. Benchmarking any upcoming text against wiki is really essential and meaningful. And there is really a lot of disease presentations with medical background out there, which are much more likely to become accessed by new patients but our "specialiced" societies web sites (please find here a collection of sites in german language on sarcoidosis like found with Google for demonstration [8]).

I don't know in detail what/who the perpose/target of a potential renewed "ELF fact sheet on sarcoidosis" [9] would be, which gaps should be filled, what should be removed and what should be added with respect to existing "fact sheets".
Targeting patients (with direction/actions to go) is different than the general public, common healthcare providers or employers (see the different leaflets from Sarcoidosis UK [4]), there is no "one size fits all" concerning contents, format, profession, health system (country) and level of education.

Because activities with patient participation should somehow target patient priorities, I would expect, that a new ELF contents mainly would focus around our collected patient priorities. These were collected 4 years ago, but most of them are surely still valid and target a still open need. Of course, I would rearrange Austrian priorities in the meantime a little, taking focus on declared sites of interdisciplinary care (don't want to call it holistic) with high case numbers - for those patients who need it [10].
There are already a lot of recent articles concerning daily living with sarcoidosis [11] - most of them in Lung with Dutch contribution (btw., Consequences of Sarcoidosis [12] is still one of my favorites). But also our article in ERJ open [13] is to mention.
The topics we already touched with our collected priorities are only partially represented in the available fact sheets.

My clear demand on an additional fact sheet is a collection of social, health-political or care requests, not a vague description of examinations and medications.

Concerning simple language: The same feature should be formulated differently for different target audiences. Having 2/3 of patients stable or resolving within five years is calming for patients and creates confidence. But having 1/3 of patients progressing anyway is a much stronger call for action for healtcare providers, doctors and politics, which would rather have a directive for "watch and wait" otherwise.

Literature


  1. What is Sarcoidosis (ATS Facts Sheets, Part I, 2018. Here the old version from 2006.) and
  2. Treatment of Sarcoidosis (ATS Facts Sheets, Part II, 2018)
  3. FSR Patient Toolkit (FSR, 2019)
  4. Leaflets (Sarcoidosis UK, 2017-2018)
  5. Diagnose: Sarco´dose,... en nu? (Sarcoidosis NL, 2019)
  6. Video interviews on SarcoidosisUK (Sarcoidosis UK, 2019)
  7. Wikipedia: Sarcoidosis (2019)
  8. Websites on Sarkoidosis with medical background (2000 - 2019)
  9. Sarcoidosis (ELF Fact Sheets, 2013)
  10. Sarcoidosis: an orphan disease needs to be adopted (2019)
  11. Some list of articels on Sarcoidosis (2019)
  12. Consequences of Sarcoidosis (2015)
  13. Sarcoidosis: patient treatment priorities (2018)

(Last change: 2019-12-31) (2020: some more references esp. for glossaries added)