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Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study

Melanie Sloan, James A Bourgeois, Guy Leschziner, Thomas A Pollak, Mervi Pitkanen, RUPERT HARWOOD, Michael Bosley, Alessandra Bortoluzzi, Laura Andreoli, Wendy Diment, James Brimicombe, Mandeep Ubhi, Colette Barrere, Felix Naughton, Caroline Gordon, David D'Cruz

eClinicalMedicine, Volume: 73, Start page: 102634

Swansea University Author: RUPERT HARWOOD

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DOI (Published version): 10.1016/j.eclinm.2024.102634

Abstract

Neuropsychiatric symptoms in SLE and other systemic autoimmune rheumatic diseases (SARDs) are challenging to diagnose, attribute and manage. We investigated the timings of onset of a broad range of neuropsychiatric (NP) symptoms in relation to timing of SLE onset. In addition, we explored whether NP...

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Published in: eClinicalMedicine
ISSN: 2589-5370
Published: Elsevier BV 2024
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Evidence of a possible prodromal syndrome was elicited from those patients who experienced hallucinations. Of these, 61% (SLE) and 34% (other SARDs) reported increasingly disrupted dreaming sleep (usually nightmares) prior to their hallucinations. In-depth interviews revealed that progression of symptoms in flares showed a high degree of inter-patient variation, whilst symptom progression was often similar in individual patient's recurrent flares. Neuropsychiatric symptoms can first present at any stage in the SLE disease course. Attributional decisions should evaluate timings of NP symptoms in relation to timing of SLE/SARD symptom onset rather than time of diagnosis due to frequent diagnostic delays. 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spelling v2 68160 2024-11-04 Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study dd86f6440382422aff81e48faba9a002 RUPERT HARWOOD RUPERT HARWOOD true false 2024-11-04 Neuropsychiatric symptoms in SLE and other systemic autoimmune rheumatic diseases (SARDs) are challenging to diagnose, attribute and manage. We investigated the timings of onset of a broad range of neuropsychiatric (NP) symptoms in relation to timing of SLE onset. In addition, we explored whether NP symptoms may be a prodrome to SARD onset and to subsequent flares. We collected patient reports of the timing of their first episode of 29 NP symptoms relative to SLE non-NP symptom onset. Surveys (n = 676 SLE patients and n = 400 clinicians) and interviews (n = 50 clinicians; and n = 69 SARD patients, including 27 SLE patients) were completed from 2022 to 2023, and analysed using mixed methods. The majority of NP symptoms did not first present around the time of SLE onset, contrary to the prevailing view among many rheumatology participants and in the literature. For example, among patients who experienced hallucinations, 54% reported first presentation >1 year after disease onset. Patient interviews also revealed that a range of NP symptoms may be a prodrome to SLE/SARDs onset and later flares, including symptoms not represented in existing classification criteria. Evidence of a possible prodromal syndrome was elicited from those patients who experienced hallucinations. Of these, 61% (SLE) and 34% (other SARDs) reported increasingly disrupted dreaming sleep (usually nightmares) prior to their hallucinations. In-depth interviews revealed that progression of symptoms in flares showed a high degree of inter-patient variation, whilst symptom progression was often similar in individual patient's recurrent flares. Neuropsychiatric symptoms can first present at any stage in the SLE disease course. Attributional decisions should evaluate timings of NP symptoms in relation to timing of SLE/SARD symptom onset rather than time of diagnosis due to frequent diagnostic delays. Greater recognition of prodromal/early NP symptoms indicating impending SLE flares (and potentially other SARD flares) could enable quicker flare identification and treatment. Journal Article eClinicalMedicine 73 102634 Elsevier BV 2589-5370 SLE; Lupus; Neuropsychiatric; Prodrome; Nightmares; Mixed methods 23 7 2024 2024-07-23 10.1016/j.eclinm.2024.102634 COLLEGE NANME COLLEGE CODE Swansea University Another institution paid the OA fee We would like to express our great thanks to The Lupus Trust who funded this study, and to the many patients, clinicians, healthy friends, academics and charity staff who contributed their time and expertise to the INSPIRE study as participants or advisors. 2024-11-04T15:26:57.0337657 2024-11-04T15:02:45.1405594 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Biomedical Science Melanie Sloan 1 James A Bourgeois 2 Guy Leschziner 3 Thomas A Pollak 4 Mervi Pitkanen 5 RUPERT HARWOOD 6 Michael Bosley 7 Alessandra Bortoluzzi 8 Laura Andreoli 9 Wendy Diment 10 James Brimicombe 11 Mandeep Ubhi 12 Colette Barrere 13 Felix Naughton 14 Caroline Gordon 15 David D'Cruz 16 68160__32838__6a2d514bf4a24e5dafd1c590f58ba91b.pdf 68160.VOR.pdf 2024-11-04T15:12:48.1389666 Output 272376 application/pdf Version of Record true © 2024 The Authors. This is an open access article under the CC BY license. true eng http://creativecommons.org/licenses/by/4.0/
title Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study
spellingShingle Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study
RUPERT HARWOOD
title_short Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study
title_full Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study
title_fullStr Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study
title_full_unstemmed Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study
title_sort Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study
author_id_str_mv dd86f6440382422aff81e48faba9a002
author_id_fullname_str_mv dd86f6440382422aff81e48faba9a002_***_RUPERT HARWOOD
author RUPERT HARWOOD
author2 Melanie Sloan
James A Bourgeois
Guy Leschziner
Thomas A Pollak
Mervi Pitkanen
RUPERT HARWOOD
Michael Bosley
Alessandra Bortoluzzi
Laura Andreoli
Wendy Diment
James Brimicombe
Mandeep Ubhi
Colette Barrere
Felix Naughton
Caroline Gordon
David D'Cruz
format Journal article
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container_start_page 102634
publishDate 2024
institution Swansea University
issn 2589-5370
doi_str_mv 10.1016/j.eclinm.2024.102634
publisher Elsevier BV
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Biomedical Science{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Biomedical Science
document_store_str 1
active_str 0
description Neuropsychiatric symptoms in SLE and other systemic autoimmune rheumatic diseases (SARDs) are challenging to diagnose, attribute and manage. We investigated the timings of onset of a broad range of neuropsychiatric (NP) symptoms in relation to timing of SLE onset. In addition, we explored whether NP symptoms may be a prodrome to SARD onset and to subsequent flares. We collected patient reports of the timing of their first episode of 29 NP symptoms relative to SLE non-NP symptom onset. Surveys (n = 676 SLE patients and n = 400 clinicians) and interviews (n = 50 clinicians; and n = 69 SARD patients, including 27 SLE patients) were completed from 2022 to 2023, and analysed using mixed methods. The majority of NP symptoms did not first present around the time of SLE onset, contrary to the prevailing view among many rheumatology participants and in the literature. For example, among patients who experienced hallucinations, 54% reported first presentation >1 year after disease onset. Patient interviews also revealed that a range of NP symptoms may be a prodrome to SLE/SARDs onset and later flares, including symptoms not represented in existing classification criteria. Evidence of a possible prodromal syndrome was elicited from those patients who experienced hallucinations. Of these, 61% (SLE) and 34% (other SARDs) reported increasingly disrupted dreaming sleep (usually nightmares) prior to their hallucinations. In-depth interviews revealed that progression of symptoms in flares showed a high degree of inter-patient variation, whilst symptom progression was often similar in individual patient's recurrent flares. Neuropsychiatric symptoms can first present at any stage in the SLE disease course. Attributional decisions should evaluate timings of NP symptoms in relation to timing of SLE/SARD symptom onset rather than time of diagnosis due to frequent diagnostic delays. Greater recognition of prodromal/early NP symptoms indicating impending SLE flares (and potentially other SARD flares) could enable quicker flare identification and treatment.
published_date 2024-07-23T15:26:55Z
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