The LISTEN study (Listening: Involving SLE patients to empower and negotiate recognition)

The LISTEN study is a randomised controlled trial to test the qualitative data and see if statistically significant differences are found with those receiving peer support in small groups with and without tasks. The study will explore whether participation in research has an additional positive impact on wellbeing.

Aims

• To explore the acceptability and feasibility of peer support by small group email.
• To measure the impact of peer support and research involvement on the mental health, wellbeing, self-esteem and disease acceptance of patients with systemic autoimmune rheumatic diseases
• To empower patients and improve research quality and relevance by actively involving them in research into their own disease; generating research questions and research materials that are relevant to their priorities, needs and experiences.
• To investigate key factors in effects of the disease and patient-physician interactions pre and post diagnosis on patient behaviour, mental health/ wellbeing and disease acceptance
• To compare lupus and related disease patients’ wellbeing, mental health and perception of medical care with patients with RA, fibromyalgia and healthy friend controls

Methods

• A randomised controlled trial to test the qualitative data and see if statistically significant differences are found with those receiving peer support in small groups with and without tasks.
• Explore whether participation in research has an additional positive impact on wellbeing

PIs: Professor Stephen Sutton and Mel Sloan
Data Manager: James Brimicombe
Funder: LUPUS UK