P28 Do we meet the needs of patients with non-inflammatory conditions referred to paediatric rheumatology?
Authors: Berrisford Sofi , Carter Isabel , Leone Valentina , Bohm Marek 
Published: September 2019

Poster presentation Tuesday 8 October

Background

Over one in four children and young people (CYP) present to paediatric rheumatology services with non-inflammatory conditions. However, there is a lack of evidence-based treatments and clinical guidelines supporting the management of these patients. Our project aims to determine whether CYP diagnosed with different non-inflammatory conditions and their families are satisfied with the service offered by the paediatric rheumatology department at Leeds General Infirmary. In addition, we wanted to assess which interventions they found most helpful and to check if there were differences between children and young people diagnosed with different non-inflammatory conditions.

Methods

632 patients seen by Leeds paediatric rheumatology between July 2017 and June 2018 were diagnosed with non-inflammatory conditions; the three most common groups of conditions were symptomatic hypermobility (SH), chronic pain syndrome (CPS) and muscular back pain (MBP). We undertook a patient satisfaction survey, including patients reported assessment of their physical and psycho-social outcomes, focussing on these three groups only. 198 participants (80 SH; 74 CPS; 44 MBP) were invited to the study by sending them a postal questionnaire with self-addressed and stamped envelopes to return them. The questionnaire did not include any identifiable patient information but a different coloured paper was sent to patients with the three different groups of diagnoses to allow comparison of these groups. All had attended the paediatric rheumatology clinic for their initial assessment and had been referred on to appropriate management services as for the treating clinician including physiotherapy, occupational therapy, podiatry/orthotics, pain management, and/or psychology.

Results

A total of 33 filled questionnaires were received over the next 2 months including 4 (9.09%) from patients diagnosed with MBP, 11 (13.75%) from patients diagnosed with SH and 18 (24.32%) from patients diagnosed with CPS. Mann-Whitney-U calculations were performed to compare groups. The CPS patient group derived less benefit from physical therapies compared with non-CPS patients (U = 35.5, p = 0.0251) and that their reported mental health is worse than non-CPS patients (U = 31.5, p = 0.034). Within the CPS group, patients benefitted more from occupational therapy (U = 13.5, p = 0.01242) and pain management clinic (U = 9.5, p = 0.0226) than podiatry/orthotics services. When asked to rate their overall satisfaction out of 10, the median scores for the SH and MBP groups were 9 and 10 respectively, the median score for the CPS group was 5.

Conclusion

Our data would suggest that patients suffering with CPS would benefit from a more holistic approach including referrals to a psychologist, occupational therapy and the pain management team. The CPS group seemed most dissatisfied with the services provided by the clinic. The results of the project were fed back to the clinical team and we hope to repeat the survey in future after potential changes suggested by the survey have been implemented.

Conflicts of Interest

The authors declare no conflicts of interest.