{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T19:53:17Z","timestamp":1781639597919,"version":"3.54.5"},"reference-count":36,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2026,3,1]],"date-time":"2026-03-01T00:00:00Z","timestamp":1772323200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,3,1]],"date-time":"2026-03-01T00:00:00Z","timestamp":1772323200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"GSK","award":["GSK"],"award-info":[{"award-number":["GSK"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2026,4]]},"abstract":"<jats:sec>\n                    <jats:title>Purpose<\/jats:title>\n                    <jats:p>Congenital cytomegalovirus (cCMV) is the most common congenital infection worldwide. cCMV can result in long-term impairments such as hearing loss and developmental delay. The study objective was to understand the caregiver experience of cCMV and caregiver-reported perceptions of the experience for cCMV patients.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This non-interventional, cross-sectional study interviewed 25 caregivers of patients (aged 4 months to 17 years) with confirmed cCMV in the United States. Semi-structured qualitative interviewing methods were used to elicit descriptions of cCMV symptoms and their impact on the patient as perceived by the caregiver. Separate questions assessed the caregiver burden of a patient with cCMV. Transcripts were analyzed using an iterative coding process to identify key concepts.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>All caregivers reported increased healthcare needs for their child with cCMV. Other caregiver-reported patient impacts spanned multiple domains including emotional, physical and social functioning, education and communication. For example, a child with cCMV-related communication\/hearing difficulties experiencing sadness or social isolation, or with cCMV-related seizures resulting in worry or apprehension. The caregiver impacts of caring for a child with cCMV also covered multiple domains including emotional, role and social functioning, work, sleep, and family planning. Emotional functioning was considered the greatest impact by approximately half of caregivers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>These results advance understanding of experiences related to cCMV for caregivers and caregiver-reported perceptions of the patient experience. This may help healthcare professionals improve routine clinical practice for families affected by cCMV. The results and conceptual model may also support the development of a disease-specific clinical outcome assessment tool.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s11136-025-04142-3","type":"journal-article","created":{"date-parts":[[2026,3,1]],"date-time":"2026-03-01T12:34:03Z","timestamp":1772368443000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Understanding the burden of congenital cytomegalovirus (cCMV) infection: concept elicitation interviews with caregivers of pediatric cCMV patients and development of a conceptual disease model"],"prefix":"10.1007","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2343-9476","authenticated-orcid":false,"given":"Brooke M.","family":"Currie","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2277-5811","authenticated-orcid":false,"given":"Georges","family":"Van Kriekinge","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-0572-3925","authenticated-orcid":false,"given":"Aur\u00e9lie","family":"Pimienta","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0420-6458","authenticated-orcid":false,"given":"Cory D.","family":"Saucier","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2624-1067","authenticated-orcid":false,"given":"K. 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Currie and Georges Van Kriekinge are employed by and hold financial equities in GSK. Aur\u00e9lie Pimienta was employed by GSK at the time of the conduct of this study. Cory Saucier, and KD Jacobs are employed by QualityMetric, which received funding from GSK for the study. Laura Tesler Waldman was employed by QualityMetric at the time of the study. Christine M. Salvatore reports having received consulting fees from GSK. These authors declare no other financial and non-financial relationships and activities.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"The study was conducted according to the guidelines of the Declaration of Helsinki and approved by the Institutional Review Board (IRB) of WCG (IRB tracking number 20226194, sponsor protocol code 218971, board action date 11\/22\/2022). The study complied with all applicable laws regarding participant privacy.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"All participants electronically signed and returned informed consent forms prior to participating in an interview. Transcripts were de-identified, and all study participants\u2019 records were archived in a manner consistent with HIPAA regulations.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"No individual data were presented in this study, and consent for publication was therefore not required.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"Data sharing statement.","order":6,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"All data used for this publication was received by GSK. For access to anonymized subject level data, please contact GSK. Additional information on the study materials can be provided on request.","order":7,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}],"article-number":"79"}}