End-of-Life in Systemic Lupus Erythematosus Beset by Increased Flares and Higher Treatment Burden: Data from a Prospective Large Multinational Cohort

Jiacai Cho¹, Liang Shen², Rangi Kandane-Rathnayake³, Vera Golder³, Worawit Louthrenoo⁴, Yi-Hsing Chen⁵, Laniyati Hamijoyo⁶, Shue-Fen Luo⁷, Yeong-Jian J Wu⁸, Leonid Zamora⁹, Zhanguo Li¹⁰, Sargunan Sockalingam¹¹, Yasuhiro Katsumata¹², Masayoshi Harigai¹², Yanjie Hao¹³, Zhuoli Zhang¹⁴, BMDB Basnayake¹⁵, Madelynn Chan¹⁶, Jun Kikuchi¹⁷, Tsutomu Takeuchi¹⁸, Sang-Cheol Bae¹⁹, Shereen Oon²⁰, Sean O’Neill²¹, Fiona Goldblatt²², Kristine Ng²³, Annie Law²⁴, Nicola Tugnet²⁵, Sunil Kumar²⁶, Cherica Tee²⁷, Michael Tee²⁷, Naoaki Ohkubo²⁸, Yoshiya Tanaka²⁸, Sandra Navarra⁹, Chak Sing Lau²⁹, Alberta Hoi³⁰, Mandana Nikpour³¹, Eric Morand³² and Aisha Lateef³³, ¹National University Hospital, Singapore, Singapore, ²National University of Singapore, Singapore, Singapore, ³Monash University, Department of Medicine, Sub-faculty of Clinical and Molecular Medicine, Clayton, Australia, ⁴Chiang Mai University Hospital, Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Chiang Mai, Thailand, ⁵Taichung Veterans General Hospital, Taichung, Taiwan, ⁶Padjadjaran University/Hasan Sadikin General Hospital, Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Bandung, Indonesia, ⁷Chang Gung University, Department of Rheumatology, Allergy and Immunology, Chang Gung Memorial Hospital, Taoyuan, Taiwan, ⁸Chang Gung University, Department of Rheumatology, Allergy and Immunology, Chang Gung Memorial Hospital, Keelung, Taiwan, ⁹University of Santo Tomas Hospital, Joint and Bone Center, Manila, Philippines, ¹⁰Peking University People’s Hospital, Beijing, China, ¹¹University of Malaya, Department of Medicine, Faculty of Medicine Building, Kuala Lumpur, Malaysia, ¹²Tokyo Women's Medical University, Division of Rheumatology, Department of Internal Medicine, Tokyo, Japan, ¹³The University of Melbourne Department of Medicine at St Vincents Hospital Melbourne, Melbourne, Australia, ¹⁴Peking University First Hospital, Rheumatology and Immunology Department, Beijing, China, ¹⁵Division of Nephrology, Teaching Hospital Kandy, Adelaide, Australia, ¹⁶Tan Tock Seng Hospital, Department of Rheumatology, Allergy & Immunology, Singapore, Singapore, ¹⁷Keio University, Keio, Japan, ¹⁸Keio University School of Medicine and Saitama Medical University, Tokyo, Japan, ¹⁹Hanyang University Hospital for Rheumatic Diseases and Hanyang University Institute for Rheumatology Research, Department of Rheumatology, Seoul, South Korea, ²⁰Department of Medicine, The University of Melbourne at St Vincent’s Hospital, Melbourne, Australia, ²¹Department of Medicine, University of New South Wales, Kensington, Australia, ²²Royal Adelaide Hospital and Flinders Medical Centre, Adelaide, Australia, ²³Waitemata DHB, Auckland, New Zealand, ²⁴Singapore General Hospital; Duke-NUS Medical School, Singapore, Singapore, ²⁵Auckland District Health Board, Auckland, New Zealand, ²⁶Middlemore Hospital, Auckland, New Zealand, ²⁷University of the Philippines, Manila, Philippines, ²⁸University of Occupational and Environmental Health, Kitakyushu, Japan, ²⁹University of Hong Kong, Division of Rheumatology & Clinical Immunology, Department of Medicine, Queen Mary Hospital, Hong Kong, Hong Kong, ³⁰Monash University, Department of Medicine, Sub-faculty of Clinical and Molecular Medicine, Melbourne, Australia, ³¹The University of Melbourne at St. Vincent’s Hospital Melbourne, Departments of Medicine and Rheumatology, Melbourne, Australia, ³²Monash University, Centre for Inflammatory Diseases, Melbourne, Australia, ³³National University Hospital, Rheumatology Division, Department of Medicine, Singapore, Singapore

Meeting: ACR Convergence 2023

Keywords: Disease Activity, quality of care, quality of life, registry, Systemic lupus erythematosus (SLE)

Session Information

Date: Tuesday, November 14, 2023

Title: Abstracts: SLE – Diagnosis, Manifestations, & Outcomes III: Disease Activity

Session Type: Abstract Session

Session Time: 4:00PM-5:30PM

Background/Purpose: SLE patients suffer high symptom burden at the end-of-life. However, the course of disease and treatment burden in the last year of life have not been described. Also, there remains few predictors to identify patients at risk of imminent death within a year that could trigger initiation of supportive care.

Methods: We collected data from SLE patients (ACR/SLICC criteria) prospectively between 2013 to 2020 from 13 Asia-pacific countries. Data at each visit included laboratory variables, SLEDAI and treatment. SLICC Damage Index (SDI) and 36-item Short Form Survey (SF-36) were administered annually. We captured causes of death, with each death possibly attributed to more than one cause. We computed a modified SLICC-frailty index that excluded Sjogren syndrome, hypothyroidism, BMI, hypertension and headache disorder. In order to build a model to identify patients in need of supportive care at the end-of-life, we used a generalized estimating equations (GEE) model that included variables at a given visit that could predict imminent death within a year. Next, we used GEE models to compare the course of disease in the last year of life versus before, with respect to (i) flares; (ii) use of immunosuppressive agents (IS); (iii) corticosteroid dose (CS); (iv) treatment escalation or tapering (any increase or decrease respecitvely, in IS/CS doses); (v) visit intervals; (vi) SF36 physical (PCS) and mental (MCS) scores.

Results: We studied 4105 patients, of which 90 died at a median age of 43 (29.5-56.5) years and 7 (2-12) years after diagnosis. The most prevalent cause of death was infection (57/90, 63.3%) followed by SLE (40/90, 44.4%). The modified SLICC frailty index scores before death revealed that 73/90 (81.1%) were least fit or frail. In the last year of life, patients spent 56.9% of days on IS, the median CS dose was 10 (2.2-17.8) mg/day and visit interval was 85 (50-117) days; 41/90 (53.9%) had treatment escalated whereas 16/90 (21.1%) received treatment tapering.

A model that included age, sex, anti-malarial use, country gross domestic product (GDP), haemoglobin, albumin, CS dose, SDI, SLEDAI and modified SLICC frailty was not sensitive (65.6%) or specific (73.4%) in identifying patients who would demise in a year. (Table 1).

In multivariable GEE models, the odds of flare were higher in the last year of life (OR 1.59, 95% CI 1.09-2.31, p=0.016). Patients had higher odds of staying in low disease activity (LLDAS) before the last year of life (OR 3.63, 95% CI 2.17-6.05, p< 0.01). Patients had fewer days on IS in the year preceding death, as compared to other years (p= 0.047), but had higher daily CS doses (p< 0.01) and shorter visit intervals (p< 0.01). Patients in the last year of life received more treatment escalations (OR 2.30, 95% CI 1.29-4.13, p=0.005). There were no significant differences in treatment tapering, PCS or MCS scores before or during the year preceding death.

Conclusion: In the year leading up to demise, SLE patients suffer increased flares and higher treatment burden. Existing disease-related instruments, laboratory and clinical variables have limited utility in identifying patients who would die within a year. Our results highlight an urgent need to better identify and support SLE patients near the end-of-life.

Disclosures: J. Cho: None; L. Shen: None; R. Kandane-Rathnayake: None; V. Golder: None; W. Louthrenoo: None; Y. Chen: None; L. Hamijoyo: None; S. Luo: None; Y. Wu: None; L. Zamora: None; Z. Li: None; S. Sockalingam: AstraZeneca, 2, 12, Other - for attending meetings and/or travel, Pfizer, 2, 12, Other - for attending meetings and/or travel, ZP Therapeutics, 2; Y. Katsumata: Asahi Kasei Pharma, 6, Astella, 6, AstraZeneca, 6, Chugai, 6, GlaxoSmithKlein(GSK), 6, Janssen, 6, Mitsubishi Tanabe Pharma Corporation, 6, Pfizer, 6; M. Harigai: Astellas Pharma, 6, AstraZeneca, 6, GlaxoSmithKlein(GSK), 6, 12, Post marketing surveillence, Novartis, 5; Y. Hao: None; Z. Zhang: None; B. Basnayake: None; M. Chan: None; J. Kikuchi: None; T. Takeuchi: AbbVie, 2, 5, 6, AYUMI, 5, Bristol-Myers Squibb, 6, Chugai, 2, 5, 6, Daiichi Sankyo, 5, Eisai, 5, 6, Eli Lilly Japan, 2, 6, Gilead, 2, 6, Janssen, 6, Mitsubishi-Tanabe, 2, 5, 6, ONO, 5, Pfizer Japan, 6, Taiho, 2; S. Bae: None; S. Oon: None; S. O’Neill: None; F. Goldblatt: None; K. Ng: AbbVie/Abbott, 1; A. Law: None; N. Tugnet: None; S. Kumar: None; C. Tee: None; M. Tee: None; N. Ohkubo: None; Y. Tanaka: AbbVie, 6, AstraZeneca, 6, BMS, 6, Boehringer-Ingelheim, 6, Chugai, 5, 6, Eisai, 5, 6, Eli Lilly, 6, Gilead, 6, GSK, 6, Mitsubishi-Tanabe, 5, Pfizer, 6, Taiho, 6, Taisho, 5, 6; S. Navarra: Astellas, 6, AstraZeneca, 6, Biogen, 2, Boehringer-Ingelheim, 2, GSK, 6, Novartis, 6, Pfizer, 6; C. Lau: AstraZeneca, 6, 12, external expert for SLE sterring committee 11.2022; A. Hoi: Abbvie, 6, AstraZeneca, 5, Australian Rheumatology Association, 4, Eli Lilly, 6, EUSA Pharma (UK) Limited, 2, Limbic, 6, Moose Republic, 6, Novartis, 6; M. Nikpour: AstraZeneca, 2, 6, Boehringer-Ingelheim, 2, 6, GSK, 2, 6, Janssen Pharmaceuticals, 2, 5, 6; E. Morand: AbbVie, 2, 5, Amgen, 5, AstraZeneca, 2, 5, 6, Biogen, 2, 5, Bristol Myers Squibb, 2, 5, Eli Lilly, 2, 5, EMD Serono, 2, 5, Galapagos, 2, Genentech, 2, 5, GlaxoSmithKline, 2, 5, IgM, 2, Janssen, 2, 5, Novartis, 2, Servier, 2, Takeda, 2, UCB, 5; A. Lateef: None.

To cite this abstract in AMA style:

Cho J, Shen L, Kandane-Rathnayake R, Golder V, Louthrenoo W, Chen Y, Hamijoyo L, Luo S, Wu Y, Zamora L, Li Z, Sockalingam S, Katsumata Y, Harigai M, Hao Y, Zhang Z, Basnayake B, Chan M, Kikuchi J, Takeuchi T, Bae S, Oon S, O’Neill S, Goldblatt F, Ng K, Law A, Tugnet N, Kumar S, Tee C, Tee M, Ohkubo N, Tanaka Y, Navarra S, Lau C, Hoi A, Nikpour M, Morand E, Lateef A. End-of-Life in Systemic Lupus Erythematosus Beset by Increased Flares and Higher Treatment Burden: Data from a Prospective Large Multinational Cohort [abstract]. Arthritis Rheumatol. 2023; 75 (suppl 9). https://acrabstracts.org/abstract/end-of-life-in-systemic-lupus-erythematosus-beset-by-increased-flares-and-higher-treatment-burden-data-from-a-prospective-large-multinational-cohort/. Accessed .

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