Most Important Patient Issues
This is a collection of patient issues concerning their living with sarcoidosis. I'm not sure how to arrange many of our concerns, also because there are a lot of health system related issues and they may be Austria-specific.
- Sarcoidosis is often handled as it would concern only one specific spot or organ for ever or if sarcoidosis of the lung and sarcoidosis of the skin would be total independent, different entities.
- After initial diagnosis at least the first extensive workup should be done at a specialized center (high case numbers)
- In case of periodic re-evaluation of the disease extend it should be done under one roof
- There should be a coordinating person - at least for diagnosis and treatment. She/he should know specialists for "other organs" and should refer to them by name, if necessary.
- There is a high demand of training for our medical staff. Unfortunately no numbers to monitor and evaluate medical performance are available.
Usually there are only few complaints concerning first diagnosis, no matter if it was a symptom-free incidental finding or a fifteen years mystery journey. Especially in the second case the relief having finally a relatively good-natured name for a whole bunch of often cumbersome, long lasting problems weights much more than the diagnosis itself.
Unfortunately in Austria there are no means to get the current number of persons diagnosed with sarcoidosis. This is a health system immanent feature because no ICD-codes are registered in the extramural area and there are also no global registers for sarcoidosis or most other rare diseases. Current numbers (2015/10) from IPF (there is some pulmologists organized national action for patient guidance to centers of expertise) of 250 diagnosed/treated patients (opposed to an expected number between 1600 and 2500 applying prevalence from Italy) suggests a high number of undiagnosed cases also for sarcoidosis.
Gerry James stated once "not all that glitters is sarco". But it's hard to distinguish, it takes someone who has already seen such symptoms. Very often we end up with a handful of dubious findings, but no one cares for a final diagnosis. Statements like "you do not have this or that because it's so rare" are not really helpful, declaring the person to be a hypochondriac. In addition this wrong estimates based on weak knowledge are counterproductive to get a right diagnosis and in case also an appropriate treatment in time.
It might be an excessive dictum (and indeed it is a provoking statement), but it looks like we are having only forms of sarcoidosis in Austria which can be seen - either by eye or on an x-ray picture. Any form of neurosarcoidosis aside stroke like paralysis seems nonexistent.
- If there is an expert for sarcoidosis, he/she should see the patients.
- If there is no expert for sarcoidosis available, this should be stated clearly to give the patient the chance to relocate.
- Start an early treatment try in serious cases - e.g. try "off label" therapy before joints are lost and replaced or the patient is handicapped permanently.
- Treatment should be done by a rheumatologist or at least in close cooperation with a rheumatologist.
- Measures to reduce side effects of treatment should start from begin of symptoms (if foreseeable, from begin of treatment).
- There should be a visible network of sarcoidosis experts so that any medic could ask for advice for rare configurations or hand over the therapy if appropriate.
We often experience the opposite of well done by a medic who thinks that he is well doing because he knows everything about sarcoidosis. This is usually the kind of doctor treating more the diameter of lymph nodes and level of CRP instead of the patient. Unfortunately for us patients these medics are very convinced about their profession and announce their field of experience loud. Especially our health care system staff has to rely on such self-declared level expertise making it difficult for us to argue for better support or care in a more experienced location.
Dedicated health care centers identify and treat disproportional more "rare" cases than others do and usually rheumatologists care most about medication and side effects.
- Sarcoidosis can be mild without affecting a patient's life significantly. If it is not, it is hard to cope with the "but you don't look sick" syndrome.
- If sarcoidosis is little bad, first social activities are reduced in order to maintain "awake time" for working life. Any support to stay as long as possible in professional life would be helpful.
- If sarcoidosis gets worse, loosing the job often changes economic and social life dramatically (recognition of sarcoidosis as in some cases serious disease would be helpful)
- A rehab hospital accepting sarcoidosis patients should state its level of expertise concerning this disease.
Sarcoidosis usually is not a life threatening disease - but in some rare cases. In the long run sarcoidosis might be a disabling disease like many other diseases confronting patients with the same class of problems. Problems, which have to be addressed by the national health care or social systems.
There are a few common phrases, which appeared in many statements.
- listen to the patient
- have time for the patient
- live some cooperation with patients, use it as a seed to establish/intensify interdisciplinary contacts between doctors
These whishes are apparently applicable for any disease. The more complicated a disease might be, the more time a doctor should be able to spend on it.
All the contributions for the text above came from patients with active (or felt active) disease, lasting from one year up to two decades.
If there would be a workshop on patient issues, I would expect excatly this selection of patients to attend, because they have enough
psychological strain to engage and they still have enough energy to be able to engage themselves - at least for a mail.
Eine erste Version der internationalen Zusammenfassung vom 21. Dezember 2015 befindet sich hier.