Sarcoidosis in Children - Visions
Recently we had some discussion on possible cooperations on the subject Sarcoidosis in Children and I had to recognize, that I was not well prepared. Maybe, because of the bubble I'm living in, I missed to have a well structured and meaningful list of needs for, expectations and expected functions of such a potential network at hand for presentation. But I will give it a try now from the perspective of a patient advocate. Last year I tried to summarize what a patient/parent could find about sarcoidosis in children on the internet - please find the translation here.
The first two main questions of patients with a rare disase are
- What is the trouble I have?
- Where to go to for further diagnosis, information and care?
1. What is the trouble I have?
This is more a medical topic where patient advocates can only support with "political" statements for the demand and
importance of an early and accurate diagnosis - required for any rare disease.
Of course, we all will not know reliable numbers for the vague term sarcoidosis in children, but a high number of wrong diagnoses
seems a reliable guess.
A look at the German Kerndokumentation (ped. rheumatology), where sarcoidosis cases are only reported
by big pediatric centers with high numbers of rheumatologic cases, suggests the assumption, that elsewhere patients might be
seen with their troubles, but will not be recognized with the right diagnoses.
Another sight might be, that doctors elsewhere don't contribute to the Kerndokumentation or
don't contribute anymore if things are getting bad, so we simply are not aware of their patients.
2a. Where to go to for further diagnosis?
Even after an estimated or definitive diagnosis depending on the presentation periodic reevaluations are necessary -
at least in adults (see
Patient Journey Sarcoidosis)
we know this and in children or adolescents I expect the situation to be similar.
The question is, how specialized or experienced (in currency case numbers) a multidisciplinary team has to be for that task.
Again - as in adults - there will be cases which only need some conversation. But there will be also cases which need insights and experiences
from many specialities. And unfortunately we cannot really distinguish these groups easily.
It is always delicate to indicate recommendations for dedicated and specialized clinics for further diagnosis.
We see this problem very prominent in pediatric surgery where many surgeons don't want to give away/refer "interesting" cases to specialists -
often resulting in lifelong harm for the patient. And we see this also in the vanishing usage frequency of the CPMS tele consulting system in ERN Lung, btw.
For sarcoidosis in adults Robert Baughman started the
WASOG certified Clinics and
WASOG Centers of Excellence
initiative many years ago which is a valuable tool
to find places to go for a second opinion for patients and doctors (!). These clinics have to fulfill different criteria - from case numbers up to
count of cooperating specialities and years of leadership in their local area. This WASOG recognition is not only a snapshot of interest,
it is a commitment for permanent dedication and cooperation within the WASOG family of doctors.
Something similar is my vision for sarcoidosis in children. A network of interested and dedicated doctors which becomes a family over time -
because of common interests, achievements, cooperations in research and good care - and whatever.
Of course, an informal network will do the job in the beginning. While the WASOG is a syndrom specific, specialities-including network,
a location of such a network for children at a "organ specific" organisation might tend to exclude other specialities.
And sarcoidosis is neither a lung disease, nor a pure rheumatologic concern - it is simply a systemic issue.
A tight connection to one society mutually "keeping away" all other specialities is not really an option.
In practice the cooperation of a local doctor with a specialized clinic depends on many factors.
Care for adult sarcoidosis in the Tirol in Austria for instance seems to be
very smooth. Patients with problems are refered to the local specialized clinic periodically, but remain also at their usually caring specialist
or family doctor (this is important to teach and incorporate them and have them not to "loose" interesting patients).
Something similar should also be established for children at pediatric departments, together with a concept for transition.
2b. Where to go to for further information?
Right after diagnosis patients and their parents are usually left very alone, just with a name of a disease.
There are many texts on sarcoidosis in adults out on the web,
with different target audiences and with different quality und usefulness.
But there is some lack of information, how that also applies for children and if there are special recommendations for children -
for patients, parents, doctors and social services.
A doctor cannot teach every single patient about his disease individually, but there is reasonable demand for education and connection
of patients (see my text on
Connecting Rare Patients).
Some text on sarcoidosis in children together with some advices what to do or what to expect would be helpful.
2c. Where to go to for further care?
This is more or less the most important or life changing question for patients who need care.
The simple view, that any doctor can treat every disease as good as a specialist which sees a lot of patients with a specific condition,
is boring and neglecting all rare disease activities of decades.
If patients who need care stay at the wrong place (with or without diagnosis), just because their doctor is close or famous or nice or established or ignorant,
it might affect the rest of their lifes.
On the other hand, many doctors will know and will be aware and will be willing to do, but also need to know, whom to ask for further advice. They are facing the same question as their patients: whom to ask for a second opinion or care or further diagnosis - a visible network is needed.
Conclusion and my Wishes
After a lot of back and forth there is all about a network. But how to initiate, start, establish and present? My proposal of a roadmap is somehow
- find some dedicated fellows
- publish and foster the cooperating group
- do cooperation in care and research
ad a) Find some dedicated fellows
For me Dr. Nathan is the seed for this task and the network. She is dedicated, interested, does research and is open for cooperation.
Nevertheless, this is an open ongoing task - open for new fellows, but also open for leaving, if interests change.
ad b) Publish the cooperating group
Some patients targeted information on the specific features of sarcoidosis in children would be a good opportunity
to distribute the names of the networking doctors as authors. At this point, some informal agreement of further cooperation (on what ever) should exist -
there should be no zombies on the authors list (but that's on Dr. Nathan firsthand).
The easiest to access, most agile distribution channels for such information for the start are the ELF sites (the
sarcoidosis patient priorities page as well
as the
ChILD page) and the sites of the national patient organisations on (adult) sarcoidosis.
ad c) Do cooperation in care and research
The sarcoidosis scene is scattered, sarcoidosis is a neglected disease in adults and even rarer visible in children and adolescents.
A good first start would be an inventory, how many patients we really have in this network and how we can access these patients.
We should try to join and compare the open needs and data of these patient cohorts on the longer run
(not as a common registry in the beginning - keep things simple), because continued dedication is only maintaned by common research activities.
Thinking about sarcoidosis in children always makes me first think of the Danish register. My second thought belongs to the
german ped. rheumatology and the Kindersarkoidose-Netzwerk of the DSV, which could be treasures for the community and maybe could also
benefit from more medical attention themselfes.