Exploring the impact on patients with lupus and related autoimmune diseases of peer support, relationships with clinicians and COVID-19 changes to care

Investigating the impacts of peer support, patient-physician interactions and changes in care due to COVID-19, on the healthcare behaviour, satisfaction with care and mental health/ wellbeing in patients with SLE and other systemic rheumatic diseases

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

ISRCTN

Registry ID

ISRCTN14966097

Enrollment

180

Registered

2020-02-27

Start date

2020-03-02

Completion date

Unknown

Last updated

2023-04-10

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Lupus and other related SARDs/CTDs (systemic autoimmune rheumatic diseases/connective tissue diseases) Skin and Connective Tissue Diseases Lupus erythematosus

Interventions

The Phase 1 questionnaire will be made available through the online platform Qualtrics on LUPUS UK forum, lupus UK sufferers Facebook page and other online health forums if recruitment insufficient. T

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: 1. Participants with a self-verified diagnosis of SLE, UCTD, Sjögren’s syndrome, discoid/cutaneous lupus or MCTD/overlap disease 2. Resident in the UK 3. Participants aged 18 or over

Exclusion criteria

Exclusion criteria: Patients with significant cognitive impairment and unable to undertake informed consent

Design outcomes

Primary

Measure	Time frame
Mental wellbeing is measured using the 14-item Warwick-Edinburgh mental wellbeing scale at baseline, 4 months and 12 months	—

Secondary

Measure	Time frame
Illness impact is measured using the PROMIS v1.0-Psychosocial Illness Impact-Negative – Short Form 8a at baseline, 4 and 12 months Added 30/03/2021: The primary outcome measure for phase 2 will be mental wellbeing measured using the WEMWS at baseline and 6 months. Secondary outcome measures for phase 2 include: 1. Medical security measured using survey items of ‘scale of abandonment/security’ from 0-100 pre-and during COVID and accessibility ratings of medical support at baseline and 6 months 2. ‘Adverse Medical Experiences’ impact measured using the length of diagnostic journeys > 1 year and presence of previous psychosomatic misdiagnoses at baseline and 6 months. Impact on behaviour and satisfaction with care will be measured using survey responses from those sections at baseline. These will be compared to other participants, with a subdivision of those who report enduring impacts on trust and wellbeing. Those who perceive they received a fibromyalgia misdiagnosis will be compared with all other participants for satisfaction with care and healthcare-reporting behaviour. 3. Impact of COVID and medical support on healthcare: behaviours will be measured using the survey questions on behaviours (reporting of all symptoms, managing symptoms without seeking medical help, reporting non-adherence etc) at baseline and 6 months and satisfaction with care (includes survey sections on listening, trust, availability and security) pre and during COVID. 4. Telemedicine acceptability views measured using multiple survey questions giving agreement/disagreement of various measures of satisfaction with telemedicine for both patients and physicians at baseline and 6 months 5. Patient-physician concordance/discordance outcome measures calculated from a comparison of means of survey items (from both physician and patient surveys) including telemedicine, sati	—

Measure

Time frame

Illness impact is measured using the PROMIS v1.0-Psychosocial Illness Impact-Negative – Short Form 8a at baseline, 4 and 12 months Added 30/03/2021: The primary outcome measure for phase 2 will be mental wellbeing measured using the WEMWS at baseline and 6 months. Secondary outcome measures for phase 2 include: 1. Medical security measured using survey items of ‘scale of abandonment/security’ from 0-100 pre-and during COVID and accessibility ratings of medical support at baseline and 6 months 2. ‘Adverse Medical Experiences’ impact measured using the length of diagnostic journeys > 1 year and presence of previous psychosomatic misdiagnoses at baseline and 6 months. Impact on behaviour and satisfaction with care will be measured using survey responses from those sections at baseline. These will be compared to other participants, with a subdivision of those who report enduring impacts on trust and wellbeing. Those who perceive they received a fibromyalgia misdiagnosis will be compared with all other participants for satisfaction with care and healthcare-reporting behaviour. 3. Impact of COVID and medical support on healthcare: behaviours will be measured using the survey questions on behaviours (reporting of all symptoms, managing symptoms without seeking medical help, reporting non-adherence etc) at baseline and 6 months and satisfaction with care (includes survey sections on listening, trust, availability and security) pre and during COVID. 4. Telemedicine acceptability views measured using multiple survey questions giving agreement/disagreement of various measures of satisfaction with telemedicine for both patients and physicians at baseline and 6 months 5. Patient-physician concordance/discordance outcome measures calculated from a comparison of means of survey items (from both physician and patient surveys) including telemedicine, sati

—

Countries

England, United Kingdom

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 4, 2026