{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,25]],"date-time":"2026-02-25T15:03:31Z","timestamp":1772031811618,"version":"3.50.1"},"reference-count":44,"publisher":"Cambridge University Press (CUP)","license":[{"start":{"date-parts":[[2026,2,25]],"date-time":"2026-02-25T00:00:00Z","timestamp":1771977600000},"content-version":"unspecified","delay-in-days":55,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Pall Supp Care"],"published-print":{"date-parts":[[2026]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec id=\"S1478951526101825_sec1a\">\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Amyotrophic lateral sclerosis (ALS) is a rare, progressive, and fatal disease that impacts the lives of affected individuals and their caregivers. Informal caregivers play a crucial role in supporting people with ALS (pwALS), yet they face major challenges. This study aims to analyze caregiver burden and health status among informal caregivers of pwALS in Portugal.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526101825_sec2b\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A cross-sectional survey-based study was conducted with adult informal caregivers of pwALS in Portugal, recruited through the Portuguese ALS patient association and healthcare professionals. Data included sociodemographics, caregiving activities, caregiver health (SF-36), patient functional status (ALSFRS-R), and caregiver burden (ZBI).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526101825_sec3c\">\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      The study included 113 caregivers. Most were female (61.9%) and the partner (65.5%) or offspring (23.9%) of the pwALS. A quarter of caregivers received no social benefits. Mean ZBI was 32\u00a0\u00b1\u00a014.8, with most reporting mild to moderate burden. On the SF-36, general health was 51.1\u00a0\u00b1\u00a019.8, with mental health (55 [40; 70]) and vitality (43.8 [31.3; 56.3]) particularly impaired. ZBI scores correlated positively with caregiving hours (\n                      <jats:italic>r<\/jats:italic>\n                      \u00a0=\u00a00.274,\n                      <jats:italic>p<\/jats:italic>\n                      \u00a0=\u00a00.003) and negatively with ALSFRS-R (\n                      <jats:italic>r<\/jats:italic>\n                      \u00a0=\u00a0\u22120.411,\n                      <jats:italic>p<\/jats:italic>\n                      \u00a0&lt;\u00a00.001). High burden caregivers exhibited poorer sleep quality (\n                      <jats:italic>p<\/jats:italic>\n                      \u00a0=\u00a0\u00a00.026).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526101825_sec4d\">\n                    <jats:title>Significance of results<\/jats:title>\n                    <jats:p>Caregivers experienced mild to moderate burden, with impaired mental health and vitality, but preserved physical functioning. A higher burden was linked with lower quality of life, poorer sleep, and greater patient disability. These findings underline the need for targeted education and training to support caregivers of pwALS.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1017\/s1478951526101825","type":"journal-article","created":{"date-parts":[[2026,2,25]],"date-time":"2026-02-25T13:28:43Z","timestamp":1772026123000},"update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":0,"title":["The burden of care: Health and wellbeing of informal caregivers of people with amyotrophic lateral sclerosis"],"prefix":"10.1017","volume":"24","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4423-7443","authenticated-orcid":false,"given":"Filipe","family":"Gon\u00e7alves","sequence":"first","affiliation":[{"name":"University of A Coru\u00f1a"},{"name":"APELA \u2013 Portuguese Association of Amyotrophic Lateral Sclerosis"},{"name":"Rise@Ci-POP (Health Research Network)"}]},{"given":"Teresa","family":"Machado","sequence":"additional","affiliation":[{"name":"Hospital Santos Silva\/Unidade Local de Sa\u00fade de Gaia e Espinho"}]},{"given":"Pedro","family":"Viegas","sequence":"additional","affiliation":[{"name":"Hospital Santos Silva\/Unidade Local de Sa\u00fade de Gaia e Espinho"}]},{"given":"Ana","family":"Machado","sequence":"additional","affiliation":[{"name":"Information and Health Decision Sciences, Faculty of Medicine, University of Porto"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8270-3687","authenticated-orcid":false,"given":"Carla","family":"Ribeiro","sequence":"additional","affiliation":[{"name":"Hospital Santos Silva\/Unidade Local de Sa\u00fade de Gaia e Espinho"},{"name":"University of 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Published by Cambridge University Press.","name":"copyright","label":"Copyright","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http:\/\/creativecommons.org\/licenses\/by\/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.","name":"license","label":"License","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This content has been made available to all.","name":"free","label":"Free to read"}],"article-number":"e65"}}