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- Volume 83,Issue Suppl 1
- POS1171 LIVING WITH LUPUS NEPHRITIS: ELEVATED IMPACT ON PATIENT LIFE
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Systemic lupus erythematosus
POS1171 LIVING WITH LUPUS NEPHRITIS: ELEVATED IMPACT ON PATIENT LIFE
- D. Tremarias1,
- A. Cornet1,
- N. Tong Ochoa2,
- A. Somers3,
- C. Duesing4
- 1Lupus Europe, Brussels, Belgium
- 2Lupus Europe, Brussels, Belgium
- 3Lupus Europe, Brussels, Belgium
- 4Universität Düsseldorf, Düsseldorf, Germany
Abstract
Background: While the overall burden of living with lupus is well-documented, there has been limited focus on identifying life impact differences in SLE patients living with and without lupus nephritis. Understanding if such differences exist would enable the potential design of specific lupus nephritis education or management tools.
Objectives: To identify the key differences in the lived experience of Lupus Nephritis patients compared to SLE patients not reporting nephritis based on the “Living with Lupus in 2020” survey database.
Methods: The 4375 responses from the Living with Lupus database were categorized into two groups: LN (if the answers indicated both ‘organ involved = Kidney’ and ‘symptom regularly experienced = Kidney problems’), and non-LN (not meeting the criteria above). Next, the data was compared to identify highly significant differences (at least p<.01) between the groups.
Results: 782 participants were identified as LN (94.4% women, age 42.8 +/- 12.6) and 3593 non-LN (95.8% women, age 44.9 +/-12.6). In the LN group Child onset SLE was 9.1% compared to 4.8% in the non-LN. The following domains showed significant additional burden in LN patients:
Family Planning: 41.0% of LN reported having no children vs. 31.0% for non-LN. In addition, 50.7% of LN said they would have liked to have more children compared to 34.7% only for non-LN.
Professional life: 18.8% of LN reported their currents status as “stopped work for medical reason” vs. 13.8% in non-LN. 74.0% said their lupus had impacted their career compared to 66.1% for non-LN, with differences in having to stop work (+7.9%), missing promotion opportunities (+3.2%), moving to flexible hours (+2.5%). This translated in a deteriorated economic profile as 22.0% of LN reported having often or always difficulties paying all bills vs. 16.4% for non-LN. 15.3% of LN patients reported they could not do the studies they wanted compared to 10.2% for non-LN.
Disease features and medication: LN patients average 10.2 (+/-3.6) symptoms or features compared to 8.4 (+: - 3.6) for non-LN. The additional 1.8 symptoms come mostly from kidney issues (0.98), high blood pressure (0.25), hematologic problems (0.13), shortness of breath (0.08), osteoporosis (0.07) and hair loss (0.07). Most bothersome symptoms of LN patients are fatigue (53%), kidney issues (51%) and pain/swelling joints (42%). On average, LN patients regularly take 6.0 medications (+- 2.4) for their lupus vs. 5.0 (+-2.4) for non-LN patients, mostly due to immunosuppressants (+0.25), blood circulation (+0.21), oral steroids (+0.17), stomach protection (+0.14), Calcium (+0.09) and Vitamin D (+0.08)
Quality of life: Overall HRQoL using the EQ5D 5 dimensions shows a burden of 2.63 (+/- 0.74) (on a scale from 1 fully able to 5 fully unable) compared to 2.48 (+/- 0.74) for non-LN, with all domains increasing in similar proportion. 79.3% of LN patients (compared to 71.1%n of non-LN) perceive themselves as less active than others of the same age. 68.3% have high or very high worries about their lupus progressing (compared to 61.3% for non-LN).
Conclusion: Several factors point to a higher burden on patients’ life with lupus nephritis compared to SLE patients with no nephritis, mostly affecting the same domains such as family planning, professional life, disease features and medication and quality of life, but with higher burden.
REFERENCES: [1] Cornet A, Andersen J, Myllys K, et al. Living with systemic lupus erythematosus in 2020: a European patient survey. Lupus Science & Medicine 2021;8:e000469. doi:10.1136/ lupus-2020-000469
Acknowledgements: of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Merck, Novartis, Otsuka, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies.
Disclosure of Interests: None declared.
- Quality of life
- Kidneys
- Patient Reported Outcome Measures
- Patient-led research
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- Quality of life
- Kidneys
- Patient Reported Outcome Measures
- Patient-led research
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