Background Many people with primary Sjögren's syndrome (PSS) experience difficulty with participation1. There are currently few published studies of non-pharmacological therapy interventions aiming to improve participation in PSS patients. Group concept mapping is a robust, equitable, and systematic approach which has been successfully utilised to identify priorities in both healthcare and research2.
Objectives To identify priority patient and stakeholder informed intervention targets for a future therapy intervention package which will aim to improve participation in people with PSS.
Methods We conducted a mixed-methods group concept mapping exercise with PSS patients, adult household members (AHM) and health care professionals (HCP) (n=232). Patient and AHM participants were recruited from 12 sites in England and all the patients fulfilled the American European Consensus Group diagnosis criteria. HCP were recruited from across the UK via email distribution lists and at professional meetings. First participants completed a statement generation brainstorming activity to identify key barriers to being able to participate fully in daily activities of their choosing. Next an individual card sorting activity was completed with a refined statement set, where participants each sorted similar meaning statements into groups. Finally each statement was rated for importance on a 1-5 Likert scale.
Multi-dimensional scaling and hierarchical cluster analysis statistical techniques were applied to generate concept maps which are a visual representation of all stakeholders' ideas and priorities. The maps depicted the priority themed clusters of ideas and “Go-zones”, or bivariate plots of the priority ratings by group, which pinpoint the priority statements within each cluster. Potential priority therapy intervention targets were subsequently identified.
Results The concept maps revealed 7 key themes: “Symptoms”, “Patient empowerment”, “Access and co-ordination of healthcare”, “Wellbeing”, “Family and friends”, “Knowledge and support” and “Public awareness”. The Symptoms and Patient empowerment clusters received the greater priority ratings. Within these clusters potential priority non-pharmacological intervention therapy targets included fatigue, pain, swallowing, sleep, support to self-manage and adherence to medication.
Conclusions This systematic approach to identifying intervention targets has identified several key barriers to participation. A future evidence-based therapy intervention package to improve participation will be designed and target these specific factors which have been identified and prioritised by stakeholders with experience of PSS.
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Rosas SR and Kane M ‘Quality and rigor of the concept mapping methodology: A pooled study analysis’. Evaluation and Program Planning, 2012. 35, 236.
Acknowledgements Arthritis Research UK, United Kingdom Occupational Therapy Research Foundation, Constance Owens Trust.
Disclosure of Interest None declared
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