Results of the national database for children of Berlin from 1992 to 1999

Since 1992, data of patients with chronic arthritides seen at the three pediatric rheumatology units in Berlin have been annually recorded. This documentation is part of the national rheumatologic database for children and adolescents with inflammatory rheumatic diseases. The aim of this documentation is to provide data on the health care situation of children with rheumatic diseases, as well as on the treatment, course and prognosis of several rheumatic diseases.

Patients and Methods:
From 1992 to 1999, 989 outpatients with JCA as well as JSpA were recorded at the three pediatric rheumatology units in Berlin. Their clinical and patient data were available. For this analysis those patients were chosen who had been seen over at least 4 years at these units (n=183).

Patient cohort
The subgroup distribution in this patient sample reflects the selection of severer cases with a higher amount of systemic (19%) and polyarticular JCA (20%) and a lower amount of those with oligoarticular JCA (47%) and JSpA (14%), compared to population-based cohorts.

Patients’ assessment of burden of illness:
At first registration (T0), 51% of the patients reported having had pain, while 45% reported feeling limited in their daily functioning and 68% in their overall well-being. At follow-up (T3), the number of patients with pain, limitations in functioning and overall well-being had decreased by 5-12%. Patients with a short disease duration (12 months) had best improved, with 25% vs. 50% reporting limitations in functioning and only 22% vs. 52% pain at follow-up.
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Functional status with regard to disease subtype:
Disease subtype correlated significantly with patients´ functional status by ANOVA (p<0.001). As expected, patients with polyarthritis had the highest mean of functional limitation of 2.6 in the whole group.
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Functional status with regard to first registration at the rheumatology unit:
There was a tendency that patients seen at the rheumatology unit early in their disease course (12 months) had a better functional baseline status than those seen later. However, a significant correlation could not be found (p=0.07). At follow-up, this difference had almost disappeared.
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Functional status with regard to disease duration:
Related to the whole group, the patients´ functional status did not correlate significantly with disease duration. At T0, patients with a maximal disease duration of 12 months had an adjusted mean value of functional limitation of 1.4 as compared to 1.5 for those with a disease duration of 2-5 years and 1.0 for those with at least 6 years disease duration. Four years later the adjusted mean values were 0.9, 0.9 and 1.5, respectively.
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Provision of care by pediatric rheumatologists:
Nearly all patients had received treatment with non-steroidal antirheumatic drugs (NSAIDs) (63%), disease-modifying antirheumatic drugs (DMARDs) (67%) and/or physiotherapy (63%) during the observation period.

Diagnosis	n	Use of DMARDs (%)	Use of NSAIDs (%)	Use of Corticosteroids (%)		Use of Physiotherapy (%)
				Systemic	Intraarticular
Systemic JCA	31	87	62	28	7	65
Polyarthritis	35	89	91	27	0	81
EOPA	59	53	64	2	3	55
LOPA	20	55	52	5	10	62
JSpAA	26	54	35	13	0	60
All patients	171	67	63	13	4	63

Discussion:
The data imply that the functioning of those patients treated by pediatric rheumatologists improved at least during the first ten years of the disease. However, there was a tendency for functional worsening after a disease duration of more than 10 years, especially in polyarthritis patients.

Our data suggest that specialized rheumatologic care can reduce burden of illness and hold up functional loss in juvenile chronic arthritides.

We thank all physicians and nurses for their help and provision of the data of their patients.

Niewerth M, Minden K, Listing J, Zink A, and the Pediatricians in the Collaborative Arthritis Centres Berlin
German Rheumatism Research Centre, Berlin; Germany