R02 To determine outcome measures for use in paediatric rheumatology musculoskeletal conditions for allied health professionals

Abstract

Background: There are many potential outcome measures available in paediatric MSK conditions. Standardising outcome measures across specialist paediatric rheumatology centres in the UK is required in order to improve future collaboration, research and audit to facilitate quality improvement of AHP management, within MSK paediatric medicine, and would have wider interest to all paediatric AHPs. Methods: A staged process to develop consensus was used: a literature search for all potential outcome measures using search terms: paediatric outcome measure; fatigue; muscle strength; hand function; school attendance; stamina; balance; sleep; quality of life and goal-setting, was carried out by members of the expert panel. Electronic databases searched Pubmed between 1986 and 2017. Criteria used to select papers were: paediatric specificity, ease of clinical use, cost and availability to clinicians, reliability, validity, length to administer/perform and previous research use. An expert panel of AHPs working in eight specialist centres in England was convened face-to-face. A nominal group technique was used to agree on the key areas for which outcome measures were required. An anonymous survey via survey monkey was sent to twelve members of the expert panel asking participants to choose two strongest measures for each or none of the key areas. Consensus was defined as at least 60% agreement. Results: The literature search identified ten potential outcome measures for evaluation. Expert panel discussion and group ranking identified: fatigue, muscle strength, hand function, school attendance, stamina, balance, sleep, quality of life and goal-setting. The questionnaire was completed by ten out of twelve participants, representing a response rate of 83%. Consensus was achieved for 6/9 areas. Fatigue VAS or PedsQL pain & fatigue scale to measure fatigue; Kendall muscle strength scale or MRC Oxford scale to measure muscle strength; school % attendance rate to measure school attendance; a two minute walk test (2MWT) and timed step test (one minute) to measure stamina; standardised single leg stand to measure balance; Peds QL and MSK-HQ to measure quality of life. Consensus could not be reached for hand function, sleep and goal-setting. Conclusion: There was considerable consensus for outcome measures in six of nine key areas for AHPs working within paediatric rheumatology in clinical settings when time, clinical space, money and ease of use is paramount. Consensus was not achieved for three of nine areas in part due to the large number of variation in use, lack of paediatric specific measures, length of time taken to administer or costs involved. A pilot of the agreed measures at participating centres with engagement and feedback from a broad group of relevant stakeholders is the next stage in the development of the process. MSK-HQ is currently validated for over 18 and so further work would be required to validate this.