Systemic autoimmune rheumatic diseases (SARDs), Systemic lupus erythematosus (SLE) (lupus) Skin and Connective Tissue Diseases
Conditions
Interventions
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: 1. Aged 18 years or over 2. Resident in the UK or Ireland 3.1. Phase 1: Have SLE (lupus) as a diagnosis on clinic letters 3.2. Phase 2: Have any Systemic autoimmune rheumatic diseases (SARD) as a diagnosis on clinic letters
Exclusion criteria
Exclusion criteria: 1. Aged under 18 years 2. Not resident in the UK or Ireland. 3. Not having SLE (lupus) for phase 1 or any systemic rheumatic disease for phase 2.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Primary outcomes will be measured at Baseline and Follow-up 2 (6 months post baseline). Phase 1 will include testing multiple outcome measures for acceptability for Phase 2. Primary outcome measures for phase 1 are: 1. Loneliness measured using the UCLA 6 item loneliness scale (RULS-6) 2. Resilience using the Connor Davidson resilience scale Phase 2: Primary outcome to be selected from Phase 1 trial measures (listed below in secondary outcome measures) and pre-published prior to recruitment for phase 2. | — |
Secondary
| Measure | Time frame |
|---|---|
| All measures at baseline, Follow-up 1 (Baseline+12 weeks) and Follow-up 2 (Baseline +6 months) 1. Loneliness measured using the UCLA 6 item loneliness scale (RULS-6) 2. Resilience using the Connor Davidson resilience scale 3. Anxiety measured using the GAD-7 scale 4. Depression measured using PHQ-8 5. Adapting to a chronic disease measured using our own new ADAPT instrument 6. Fatigue measured using the FACIT-F 7. Quality of life measured using EQ-5D-5L | — |
Countries
England, Ireland, United Kingdom