Mortality among family members of patients with amyotrophic lateral sclerosis: a Swedish register-based study

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Kläppe, UlfKarolinska Institutet (author)

Mortality among family members of patients with amyotrophic lateral sclerosis : a Swedish register-based study

Article/chapterEnglish2022

Publisher, publication year, extent ...

2021-07-23
Informa Healthcare,2022
printrdacarrier

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LIBRIS-ID:oai:DiVA.org:oru-93470
https://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-93470URI
https://doi.org/10.1080/21678421.2021.1953075DOI
http://kipublications.ki.se/Default.aspx?queryparsed=id:147195245URI

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Language:English
Summary in:English

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SwePubSwePub

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Subject category:ref swepub-contenttype
Subject category:art swepub-publicationtype

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Funding agencies:Bjorklunds FundNeuro SwedenUllaCarin Lindquist Foundation
Objective: To test two hypotheses: (1) partners of ALS patients have higher mortality due to outcomes related to psychological distress, and (2) parents and siblings of ALS patients have higher mortality due to diseases that co-occur with ALS.Methods: We performed a nationwide, register-based cohort study in Sweden. We included ALS-free partners, biological parents and full siblings (N = 11,704) of ALS patients, as well as ALS-free partners, biological parents and full siblings (N = 14,460,150) of ALS-free individuals, and followed them during 1961-2013. Hazard ratios (HRs) and 95% confidence intervals (CIs) of overall and cause-specific mortality were derived from Cox regression.Results: Partners of ALS patients, compared to partners of ALS-free individuals, displayed higher mortality due to external causes (HR 2.14; 95% CI 1.35-3.41), including suicide (HR 2.44; 95% CI 1.09-5.44) and accidents (HR 2.09; 95% CI 1.12-3.90), after diagnosis of the ALS patients. Parents of ALS patients had a slightly higher overall mortality (HR 1.03; 95% CI 1.00-1.07), compared with parents of ALS-free individuals. This was driven by mortality due to dementias and cardiovascular, respiratory, and skin diseases. Parents of ALS patients had, however, lower mortality than parents of ALS-free individuals due to neoplasms. Siblings of ALS patients had higher mortality due to dementias, and digestive and skin diseases.Conclusions: Increased mortality due to suicide and accidents among partners of ALS patients is likely attributable to severe psychological distress following the ALS diagnosis. Increased mortality due to dementias among parents and full siblings of ALS patients suggests shared mechanisms between neurodegenerative diseases.

Subject headings and genre

MEDICIN OCH HÄLSOVETENSKAP Klinisk medicin Neurologi hsv//swe
MEDICAL AND HEALTH SCIENCES Clinical Medicine Neurology hsv//eng
Amyotrophic lateral sclerosis
family members
mortality
psychological distress
register-based study

Added entries (persons, corporate bodies, meetings, titles ...)

Longinetti, ElisaKarolinska Institutet (author)
Larsson, Henrik,1975-Karolinska Institutet,Örebro universitet,Institutionen för medicinska vetenskaper,Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden(Swepub:oru)hiln (author)
Ingre, CarolineKarolinska Institutet (author)
Fang, FangKarolinska Institutet (author)
Karolinska InstitutetInstitutionen för medicinska vetenskaper (creator_code:org_t)

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In:Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration: Informa Healthcare23:3-4, s. 226-2352167-84212167-9223

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By the author/editor: Kläppe, Ulf; Longinetti, Elis ...; Larsson, Henrik, ...; Ingre, Caroline; Fang, Fang

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MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Clinical Medicin ...; and Neurology

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