Unexplained hypothermia and bradycardia in two pediatric patients with Wegener’s granulomatosis

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Time to focus on outcome assessment tools for childhood vasculitis

Childhood systemic vasculitides are a group of rare diseases with multi-organ involvement and potentially devastating consequences. After establishment of new classification criteria (Ankara consensus conference in 2008), it is now time to establish measures for proper definition of activity and damage in childhood primary vasculitis. By comparison to adult vasculitis, there is no consensus for indices of activity and damage assessment in childhood vasculitis. Assessment of disease activity is likely to become a major area of interest in pediatric rheumatology in the near future. After defining the classification criteria for primary systemic childhood vasculitis, the next step was to perform a validation study using the original Birmingham vasculitis activity score as well as the disease extent index to measure disease activity in childhood vasculitis. Presently, there are efforts in place to develop a pediatric vasculitis activity score. This paper reviews the current understanding about the assessment tools (i.e., clinical features, laboratory tests, radiologic assessments, etc.) widely used for evaluation of the disease activity and damage status of the children with vasculitis

American College of Rheumatology Provisional Criteria for Clinically Relevant Improvement in Children and Adolescents With Childhood-Onset Systemic Lupus Erythematosus

10.1002/acr.23834ARTHRITIS CARE & RESEARCH715579-59

Out-of-clinic patient communication in paediatric rheumatology: the extent and nature of demand.

BACKGROUND: Traditional funding models for public paediatric rheumatology care are typically based on providing medical services for a defined number of clinics per week. Anecdotally there is significant demand by patients and families for out-of-clinic communication with care providers and services provided under traditional funding models may not meet this need. Our aim was to determine the extent and nature of this 'hidden' demand in a tertiary paediatric rheumatology centre. METHODS: Communication data and diagnoses were extracted from the Rheumatology service database at our centre for the period 1/1/2009 to 31/12/2011. Clinical activity data over the same time were obtained from hospital clinic databases. RESULTS: There were 5672 instances of communication with 749 patients/families over 3 years, (mean 7.3/weekday). This increased over time in parallel with clinical activity. 41% of clinic patients sought communication with the team out of clinic hours. 58% were telephone calls, 36% emails and 6% letters. The communication topics were for advice, results or general updates (28%), medication queries (24%), appointment/admission coordination (20%), disease flare or other disease events (14%), psychosocial, school or transition issues (6%) and miscellaneous queries (8%). Of the most frequent communicators, those with juvenile idiopathic arthritis were the majority (85%). The remainder had other chronic inflammatory conditions. CONCLUSIONS: The communication and support needs of patients with chronic rheumatic diseases and their families extend beyond that which can be provided in the clinic environment. It is essential that funding for paediatric rheumatology services allows for staffing sufficient to meet this need