{
  "abstract": "Objectives SLE is a disease with a wide spectrum of clinical manifestations. Due to it’s chronic nature, frequent lifelong follow-up is required. The impact of the disease on caregivers who help the patient manage the disease is not frequently evaluated. We conducted a one-time cross-sectional survey to examine the impact of caring on their lives.Methods We involved consecutive SLE patients (ACR/EULAR 2019 criteria). We asked the patients about the presence of someone (relative/friend) who helps them in the management of the disease. Then, according to the patient answer we submitted the questionnaire Caregivers Burden Inventory (CBI) to the indicated person. CBI is composed of 24 items. Higher values indicate higher levels of perceived burden.We also collected data on the corresponding patients, including clinical, laboratory and therapeutic data.Results Our analysis included 151 SLE patients [F:M 137/14, median age 48 years (IQR 18)]. 76 patients (50.3%) indicated a caregiver who helps them with the disease management. Finally, 46 caregivers (60.5%) completed the survey ( figure 1). The carer was a spouse/partner in 60.9% of cases, a parent in 21.7%, a sibling in 10.9%, a son/daughter in 4.35% and a friend in 2.2%. We registered a mean CBI value equal to 10.9 (DS 11.5). For 6 caregivers (13%), CBI values indicate a need to seek some form of respite care (CBI >=24), while one caregiver shows a risk of burning out (CBI >36).According to caregiver response, the greatest load is the objective load, i.e. the time spent helping the patient (mean score 1, DS 0,77), followed by the psychological load (mean score 0.56, DS 0,73) (table 1).CBI scores didn’t correlate with patients’ age, gender, disease duration, disease activity or SDI. Instead, we found a statistically significant correlation between the CBI score and PtGA (p=0.01, R=0.16).Abstract PO:13:347 Figure 1Enroleed patiensConclusions Our survey shows that half of the patients have a caregiver.The correlation between CBI score and PtGA shows an aligned view of the disease between patient and caregiver.The lack of correlation between CBI score and objective measures (such as disease activity and physician-rated impairment) may suggest that the burden of care is highly personal and depends largely on subjective factors.",
  "authors": [
    {
      "affiliations": [
        "Lupus Clinic, Sapienza University of Rome, Rome, Italy"
      ],
      "name": "Claudia Ciancarella"
    },
    {
      "affiliations": [
        "Lupus Clinic, Sapienza University of Rome, Rome, Italy"
      ],
      "name": "Fulvia Ceccarelli"
    },
    {
      "affiliations": [
        "Lupus Clinic, Sapienza University of Rome, Rome, Italy"
      ],
      "name": "Francesco Natalucci"
    },
    {
      "affiliations": [
        "Lupus Clinic, Sapienza University of Rome, Rome, Italy"
      ],
      "name": "Valeria Moretti"
    },
    {
      "affiliations": [
        "Lupus Clinic, Sapienza University of Rome, Rome, Italy"
      ],
      "name": "Domenico Iaria"
    },
    {
      "affiliations": [
        "Lupus Clinic, Sapienza University of Rome, Rome, Italy"
      ],
      "name": "Cristiano Alessandri"
    },
    {
      "affiliations": [
        "Lupus Clinic, Sapienza University of Rome, Rome, Italy"
      ],
      "name": "Fabrizio Conti"
    }
  ],
  "title": "PO:13:347 Caregiver in systemic lupus erythematosus: cross-sectional survey",
  "uid": "4bc5145f-0bc9-5c23-a754-fdd37ddd6686"
}