{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,23]],"date-time":"2025-12-23T18:54:47Z","timestamp":1766516087002,"version":"3.37.3"},"reference-count":30,"publisher":"Springer Science and Business Media LLC","issue":"11","license":[{"start":{"date-parts":[[2023,11,1]],"date-time":"2023-11-01T00:00:00Z","timestamp":1698796800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,11,2]],"date-time":"2023-11-02T00:00:00Z","timestamp":1698883200000},"content-version":"vor","delay-in-days":1,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100020124","name":"Seagen Inc.","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100020124","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Support Care Cancer"],"published-print":{"date-parts":[[2023,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Purpose<\/jats:title>\n                <jats:p>As part of the CONNECT study, we evaluated the caregiver role in treatment decision-making when caring for patients with classic Hodgkin lymphoma (cHL) in the USA.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>The CONNECT caregiver survey was administered online December 2020\u2013March 2021 to self-identified adult caregivers of cHL patients recruited from patient referrals and online panels. The caregiver\u2019s role in treatment decision-making, health-related quality of life (HRQoL, PROMIS-Global), and work impacts (WPAI:CG) were assessed.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>We surveyed 209 caregivers (58% women; median age 47\u00a0years; 54% employed; 53% spouse\/partner); 69% of patients cared for were diagnosed with cHL in the past 1\u20132\u00a0years, with 48% having stage III\/IV cHL and 29% in remission. More spouse\/partner than other caregivers were involved in caregiving at symptom onset (61% vs 27%), whereas more other than spouse\/partner caregivers began after first treatment (34% vs 5%). Cure, caregivers\u2019 top treatment goal (49%), was rated higher by spouse\/partner than other caregivers (56% vs 42%). More spouse\/partner than other caregivers were involved in treatment option discussions with physicians (52% vs 28%), were involved in patients\u2019 treatment decisions (54% vs 23%), and were aligned with patients\u2019 treatment goals (93% vs 79%). While caregivers reported HRQoL similar to that of the general population, nearly 30% of employed caregivers reported work impairment.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>Cure was caregivers\u2019 top treatment goal. Spouse\/partner vs other caregivers were more involved, were involved earlier, and reported greater alignment with patient treatment goals and decision-making. Caregivers reported good HRQoL; however, caregiving impacted work productivity regardless of patient relationship.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s00520-023-08120-8","type":"journal-article","created":{"date-parts":[[2023,11,2]],"date-time":"2023-11-02T05:07:00Z","timestamp":1698901620000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["The impact of classic Hodgkin lymphoma on informal caregivers: results from the CONNECT cross-sectional survey"],"prefix":"10.1007","volume":"31","author":[{"given":"Darcy R.","family":"Flora","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrew M.","family":"Evens","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicholas","family":"Liu","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kristina S.","family":"Yu","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachel","family":"Byrd","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michelle A.","family":"Fanale","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katherine","family":"Holmes","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carlos","family":"Flores","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andy","family":"Surinach","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susan K.","family":"Parsons","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2023,11,2]]},"reference":[{"key":"8120_CR1","unstructured":"National Alliance for Caregiving in partnership with the National Cancer Institute and the Cancer Support Community (2016) Cancer caregiving in the U.S. An intense, episodic, and challenging care experience. www.caregiving.org\/wp-content\/uploads\/2022\/11\/CancerCaregivingReport_FINAL_June-17-2016.pdf. 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This study was reviewed by the New England IRB and received exemption status.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"Not applicable.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"<b>Darcy R. Flora<\/b>This author is an employee of and in a leadership role at Gryt Health, which received funding from Seagen Inc. to conduct this work.Stock and Other Ownership Interests: Gryt Health.<b>Andrew M. Evens<\/b>Grant\/Research Support: ORIEN and Leukemia & Lymphoma Society, NIH\/NCI.Consulting or Advisory Role: Seagen Inc., Hutchmed, Incyte, Epizyme, Research to Practice, Curio, Cota, Patient Power, Curio Science, OncLive, Novartis, AbbVie, and Pharmacyclics.<b>Nicholas Liu<\/b>Employment: Seagen Inc.Stock and Other Ownership Interests: Seagen Inc.<b>Kristina S. Yu<\/b>Employment: Seagen Inc.Stock and Other Ownership Interests: Seagen Inc.<b>Rachel Byrd<\/b>This author is an employee of Gryt Health, which received funding from Seagen Inc. to conduct this work.<b>Michelle A. Fanale<\/b>Employment: Seagen Inc.Stock and Other Ownership Interests: Seagen Inc.<b>Katherine Holmes<\/b>The author declares no competing interests.<b>Carlos Flores<\/b>The author declares no competing interests.<b>Andy Surinach<\/b>Consulting or Advisory Role: Seagen Inc.<b>Susan K. Parsons<\/b>Grant\/Research Support: Leukemia & Lymphoma Society and NIH\/NCI.Consulting or Advisory Role: Seagen Inc.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"664"}}