Lupus & antiphospholipid syndrome
Lack of awareness of systemic lupus erythematosus and its consequences in a cohort of moderate and severe patients in Spain: The LupusVoice study
Study context
- Population
- Patients with moderate or severe systemic lupus erythematosus (SLE), their caregivers and health care professionals (HCPs), six university hospitals in Spainall individually interviewed
- Participants
- 40 / 11 / 9
- Exposure
- Patients vs Caregivers vs HCPs
- Patientsn = 40
- Caregiversn = 11
- HCPsn = 9
- Outcome
- Lack of awareness of SLE and its consequences in Spain, from participants' perspective
Methodological detailsmulticentre, individual interviews, thematic analysis by two anthropologists, phenomenological perspective
- Multicentre
- Individual interviews
- Thematic analysis by two anthropologists
- Phenomenological perspective
Main finding
As reported in the abstract
- Lack of disease awareness among primary care physicians, emergency medicine doctors and other specialists treating SLE symptomatology, leading to diagnostic delays with clinical and emotional impact on patients
- Symptom awareness context dependent
- Differences in symptom awareness between HCPs and patients led to a mismatch between doctors' and patients' severity evaluation
- Some HCPs attributed symptoms potentially caused by SLE to patients' unfavorable socioeconomic conditions
- Lack of social awareness among friends, family members and romantic partners led to lower social support, increased isolation and negative physical and emotional impact
- Gender differences in the provision of support identified
Observational data: associations, not effects.
Original publication
Lack of awareness of systemic lupus erythematosus and its consequences in a cohort of moderate and severe patients in Spain: The LupusVoice study. Lupus. Published 5 April 2024. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →