Background In the traditional model nursing and physiotherapy staff (allied health professionals, AHP) competencies are limited and funding to support adequate AHP input in paediatric rheumatology service is not automatically provided. A case needs to be presented to healthcare providers and hospital managers.
Objectives A comprehensive system of therapeutic interventions provided by AHP to paediatric patients with JIA has been developed as an add-on to the standard rheumatology care. It covers theoretical and practical patient and parent education as well as psychosocial support in the form of standardized interview and a practical session provided independently by a nurse specialist and a physiotherapist (PT). We have prospectively tested performance of these interventions in a cohort of JIA patients and report interim results of the first year of the study.
Methods Patients younger than 18 years fulfilling ILAR classification of JIA were eligible. Study inclusion criteria were: 1. Active disease (at least 1 joint with active synovitis). 2. Newly diagnosed JIA or JIA relapse requiring new drug therapy. 3. Informed consent. Performance of interventions was tested by standardized quality of life (QOL) assessments (CHAQ, parent/patient global assessment PaG, PedsQL, SMILY-illness, JAMAR) along physician-derived disease activity measures (physician global-PhG, active and limited joint count-AJC, LJC, ESR/CRP, JADAS71). Consecutive patients have been randomised into 3 groups according to the frequency of AHP interventions (A:3-monthly, B:6-monthly, C: control group with standard care only).
Results Total of 88 patients (61 girls) were recruited, all Caucasians, 54 with new JIA and 34 relapses. Distribution of JIA onset subtypes was as follows: PolyJIA (RF-): 44, OligoJIA: 27, Systemic JIA: 9, Psoriatic JIA: 3, Enthesopathic JIA: 5. Their main characteristics at study entry were:age 8 years, active joint count 6.4, ESR 22mm/h, CHAQ 0.43, PhG 32mm, PaG 22mm, PedsQL 71, JADAS 12.7. There were no significant differences between the 3 groups A, B, C with 29, 28 and 30 patients respectively. 77 patients received methotrexate (MTX, s.c. in 60) and in 15 biologic was added (9 TNF blockers, 3 tocilizumab, 2 abatacept, 1 canakinumab). 35 patients received intraarticular triamcinolone hexacetonide (IATH). In 38 patients 6 months follow-up data were available showing improved disease activity. When QOL assessments were compared between intervention groups AB and control group there were no significant differences found, but there was a trend towards better PaG and PedsQL scores after 6 months.
Conclusions Standardized comprehensive AHP interventions covering patient education and psychosocial support are feasible when provided by trained professionals in the clinic setting accommodating increased staff requirements. This is well compensated by more effective use of physician's clinic time when education is partly covered and augmented by AHP. Patient perception and true impact on QOL measures needs to be assessed in larger patient cohorts and in longer follow-up.
Acknowledgements Supported by the grant IGA NT/14149-3
Disclosure of Interest None declared