EDITORIAL
PRES GUIDELINES FOR PEDIATRIC RHEUMATIC DISEASES
At the founding meeting of the
Pediatric Rheumatology European Society (PRES) in
Instructions on development of these guidelines were
established including a uniform format that benefited from the recent
experience of the German pediatric rheumatology working group. The guidelines
put special emphasis on the practical management of the pediatric rheumatic
diseases. They are not meant to be followed explicitly and to the letter in each
patient.
They are not meant to be used in malpractice litigation. However, the
guidelines do attempt to define what the best standard of care is for any one
disease and what a minimum standard of care is as recommended by PRES. The
guidelines are not meant to be comprehensive and the attending physician is
urged to refer to textbooks and other references. So, although they are called
by the popular term “guidelines”, it might be more appropriate to refer to them
as “recommendations”.
These guidelines are also written for a general
audience with a scientific or political interest. This audience might include
representatives from governments, insurance companies, political parties,
research organizations and other groups. Although parents and patients are very
welcome to consult these guidelines, educational material prepared by the
Pediatric Rheumatology International Trials Organization (PRINTO) and other
resources might be more appropriate for their better initial understanding
(www.printo.it/pediatric-rheumatology/).
The following topics were selected
for the development of guidelines: oligoarthritis, polyarthritis, arthritis
associated with enthesopathy, systemic arthritis, psoriatic arthritis, Lyme
arthritis, systemic lupus erythematosus, juvenile dermatomyositis, scleroderma,
vasculitides, and episodic fever syndromes.
A senior author was appointed to each topic to prepare a draft and
members volunteering to contribute were chosen as co-authors according to their
particular expertise.
The senior authors wrote the first
drafts of the guidelines and then altered them according to the editorial
recommendations of the co-authors. This
edited draft was then submitted to 5 PRES council members for further
suggestions (Rebecca ten Cate, Hans-Iko Huppertz, Isabelle Koné-Paut,
The present guidelines are the
opinion of this scientific society, its members, its council and the editor
based on the published literature, textbooks and experience. In spite of
extensive revising, these guidelines are recommendations and the attending
physician will have to find the best approach to the individual patient
including the possibility that one may need to deviate from these guidelines.
The guidelines contain scientific information and do not include legal or other
regulatory obligations, including licensure of drugs which might have an impact
on the management of the patient. In the opinion of PRES, patients should not
be denied the treatment as recommended in these guidelines by governments or
insurance companies, unless they can express their denial reasonably and in
writing.
Pediatric rheumatology is a young
science and changes in the standard of practice occur at a rapid pace. Please
do not hesitate to send me your comments including proposals for improvement.
These guidelines will be updated as scientific evidence accumulates and changes
our pediatric rheumatology standard of practice.
Prof. Dr. med. Hans-Iko Huppertz
Member of the Council of PRES and responsible for clinical affairs
Prof.-Hess-Kinderklinik
Klinikum Bremen-Mitte
Sankt-Jürgen-Strasse
28205 Bremen
Germany
huppertz.bremen@t-online.de