Mixed-methods study identifying key intervention targets to improve participation in daily living activities in primary Sjögren's syndrome patients

Katie L Hackett, Katherine H O Deane, Julia L Newton, Vincent Deary, Simon Bowman, Tim Rapley, Wan-Fai Ng, UK Primary Sjögren's Syndrome Registry

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OBJECTIVE: Functional ability and participation in life situations are compromised in many primary Sjögren's syndrome (PSS) patients. This study aims to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions.

METHODS: Group concept mapping (GCM), a semi-quantitative, mixed-methods, approach was used to identify and structure ideas from UK PSS patients, adults living with a PSS patient (AHMs) and health care professionals (HCPs). Brainstorming generated ideas, which were summarised into a final set of statements. Participants individually arranged these statements into themes and rated each statement for importance. Multidimensional scaling and hierarchical cluster analysis were applied to sorted and rated data to produce visual representations of the ideas (concept maps), enabling identification of agreed priority areas for interventions.

RESULTS: 121 patients, 43 AHMs and 67 HCPs took part. 463 ideas were distilled down to 94 statements. These statements were grouped into seven clusters; 'Patient empowerment', 'Symptoms', 'Wellbeing', 'Access and coordination of healthcare', 'Knowledge and support', 'Public awareness and support' and 'Family and friends'. Patient empowerment and Symptoms were rated as priority conceptual themes. Important statements within priority clusters indicate patients should be taken seriously and supported to self-manage symptoms of oral and ocular dryness, fatigue, pain and poor sleep.

CONCLUSION: Our data highlighted that in addition to managing PSS symptoms; interventions aiming to improve patient empowerment, general wellbeing, access to healthcare, patient education and social support are important to facilitate improved participation in daily living activities. This article is protected by copyright. All rights reserved.

Original languageEnglish
Pages (from-to)1064-1073
JournalArthritis Care and Research
Issue number7
Early online date6 Feb 2018
Publication statusPublished - 1 Jul 2018


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