Ran A. Cai1, Polly Livermore2, Hema Chaplin1, Francesca Josephs1, Linda Suffield1, Nick

Title:

Developing a toolkit to benchmark young person friendly services for patients with autoimmune rheumatic disease

Authors:

Ran A. Cai1, Polly Livermore2, Hema Chaplin1, Francesca Josephs1, Linda Suffield1, Nick Wilkinson3, Debajit Sen1, Despina Eleftheriou1, Rachel Tattersall4, Yiannis Ioannou1

1. Arthritis Research UK Centre for Adolescent Rheumatology, UCL, London.

2. Paediatric Rheumatology, GOSH, London.

3. Paediatric Rheumatology, Evelina Hospital, London.

4. Department of Rheumatology, Royal Hallamshire, Sheffield.

Background:

Although published standards for quality of care for young people (YP, 10-24 years) exist, service priorities valued by YP with chronic rheumatic diseases may differ from generic standards. Unfortunately, evidence base for best practice for YP with rheumatic diseases across this age range is limited and their needs are often not identified. In order to accurately monitor quality and ensure optimal outcomes, it is essential to identify areas for service improvement using a developmentally and specialty appropriate toolkit. This project aims to develop a toolkitusing a patient-centred approach that can define and benchmark good clinical practice for YP with chronic rheumatic disease.

Methods:

This was a mixed-methods study.Phase 1identified 25 candidate criteria relevant for YP rheumatology from previous research and quality standards. Phase 2 discussed these criteriausing one-to-one interviews and focus groups (FGs) with YP (N=38; median age=19; range=15-24; 82% female) and YP ranked each criterion in order of priority. The proposed toolkit was evaluated by healthcare professionals (HCPs; N=22)via an on-line surveyand consensus meeting duringphase 3. The toolkit was simplified from 25 to 17 criteria with ≥80% agreement among HCPs. Phase 4 ensured the toolkit’s geographical relevance across the UK by refining it using FG discussionswith YP from Sheffield, Northampton, and Newcastle (N=21;median age=18; range=11-24; 57% female).Analytic hierarchy process was used to assign weights and scores to each criterion based on their relative importance. YP’s satisfaction with the final toolkitand agreement with how it is scored were assessed usinginterviews (N=19; median age=19; range=17-24; 70% female) and 5-point scales in phase 5.

Results:

The final toolkit included 17 service criteria, which weregrouped into four main categories: 1) assessment and treatment; 2) information and involvement; 3) accessibility and environment; and 4) continuity of care.Each category was scored out of 100 points and was also assigned relative weights, which were 30%, 24%, 23%, and 23%, for categories 1, 2, 3, and 4, respectively.The final toolkit score is the sum of the points from individual categories multiplied by their weight. YP thought the toolkit was comprehensive and differentiated well between high and low priority criteria (Msatisfaction=4.52, SDsatisfaction=0.56; Magreement=4.03, SDagreement=0.54).

Conclusions:

We employed a rigorous multistep approach to develop a toolkit that clearly identifies aspects of care that are valued by YP and are considered valid by HCPs. Data collected using the toolkit can benchmarkquality of care and compare performance across different centres, which can help departments assess what standards they should aspire to and reduce variations. In addition, the toolkit can facilitate commissioning and help with leveraging resources for quality improvement activities. The next phase will scope current services against the toolkit to assess its validity, reliability, and feasibility.

Funding statement: This work was supported by the Arthritis Research UK [20164] to R.A.C., D.E., and Y.I.