{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,12]],"date-time":"2026-10-12T00:45:38Z","timestamp":1791765938117,"version":"4.3.4"},"reference-count":23,"publisher":"American Academy of Pediatrics (AAP)","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"abstract":"\n OBJECTIVE<\/jats:title>\n To examine how parents experience and navigate prognostic uncertainty following a diagnosis of congenital cytomegalovirus (cCMV) and identify implications for clinical communication and newborn screening.<\/jats:p>\n <\/jats:sec>\n \n METHODS<\/jats:title>\n We conducted in-depth qualitative interviews with 41 birth parents of children with cCMV. Interviews explored diagnosis, communication with health care practitioners, health care navigation, and perceptions of child development. Transcripts were analyzed using inductive reflexive thematic analysis.<\/jats:p>\n <\/jats:sec>\n \n RESULTS<\/jats:title>\n Prognostic uncertainty emerged as a central and enduring feature of parents\u2019 experiences. Five themes characterized how families navigated uncertainty: (1) families live with the burden of an unpredictable future, (2) families struggle to make meaning from incomplete and inconsistent information, (3) families become drivers of the diagnostic journey to gain clarity and control, (4) knowledge provides families direction even when certainty is impossible, and (5) families value early diagnosis because it makes uncertainty more manageable. Uncertainty contributed to anxiety, information seeking, and ongoing monitoring. However, parents consistently valued early diagnosis because it provided direction, facilitated treatment and developmental surveillance, supported access to intervention, and informed decision-making. Rather than eliminating uncertainty, diagnosis transformed an unpredictable future into possibilities on which families could monitor and act.<\/jats:p>\n <\/jats:sec>\n \n CONCLUSIONS<\/jats:title>\n Prognostic uncertainty is an inherent and longitudinal feature of cCMV and should be acknowledged in counseling following the diagnosis. Despite persistent uncertainty, parents valued early identification because it provided direction and opportunities for surveillance and intervention. As cCMV screening expands, family-centered communication, anticipatory guidance, care coordination, and longitudinal support can help families navigate uncertainty over time.<\/jats:p>\n <\/jats:sec>","DOI":"10.1542\/hpeds.2026-009558","type":"journal-article","created":{"date-parts":[[2026,10,12]],"date-time":"2026-10-12T00:03:17Z","timestamp":1791763397000},"source":"Crossref","is-referenced-by-count":0,"title":["Living With Known Unknowns: Prognostic Uncertainty in Congenital Cytomegalovirus Following Diagnosis"],"prefix":"10.1542","author":[{"given":"Megan Honor","family":"Pesch","sequence":"first","affiliation":[{"name":"1Department of Pediatrics, Division of Developmental and Behavioral Pediatrics, University of Michigan, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sean P.","family":"McKenzie","sequence":"additional","affiliation":[{"name":"2Medical Advisory Committee, National CMV Foundation, Tampa, Florida"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tyler G.","family":"James","sequence":"additional","affiliation":[{"name":"3Department of Family Medicine, University of Michigan, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marin","family":"Anderson","sequence":"additional","affiliation":[{"name":"4Department of Pediatrics, Division of Perinatology, University of Michigan, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gail","family":"Demmler-Harrison","sequence":"additional","affiliation":[{"name":"5Texas Children\u2019s Hospital, Baylor College School of Medicine, Houston, Texas"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"417","published-online":{"date-parts":[[2026,10,12]]},"reference":[{"key":"2026101120031424100_r1","article-title":"Global and regional congenital cytomegalovirus (CMV) epidemiology and burden: systematic review and meta-analysis","author":"Ssentongo","year":"2021","journal-title":"Lancet."},{"issue":"2","key":"2026101120031424100_r2","doi-asserted-by":"crossref","first-page":"418","DOI":"10.1038\/s41390-023-02639-6","article-title":"Neurodevelopmental outcomes of children with congenital cytomegalovirus: a systematic scoping review","volume":"95","author":"Pesch","year":"2024","journal-title":"Pediatr Res."},{"issue":"7","key":"2026101120031424100_r3","doi-asserted-by":"crossref","first-page":"854","DOI":"10.1097\/MAO.0000000000001861","article-title":"The natural history and rehabilitative outcomes of hearing loss in congenital cytomegalovirus: a systematic review","volume":"39","author":"Fletcher","year":"2018","journal-title":"Otol Neurotol."},{"issue":"7","key":"2026101120031424100_r4","doi-asserted-by":"crossref","first-page":"2471","DOI":"10.1038\/s41390-025-04232-5","article-title":"Beyond hearing loss: exploring neurological and neurodevelopmental sequelae in asymptomatic congenital cytomegalovirus infection","volume":"98","author":"Swanson","year":"2025","journal-title":"Pediatr Res."},{"issue":"2","key":"2026101120031424100_r5","doi-asserted-by":"crossref","first-page":"E624","DOI":"10.1097\/PHH.0000000000001401","article-title":"A legal mapping assessment of cytomegalovirus-related laws in the United States","volume":"28","author":"Yassine","year":"2022","journal-title":"J Public Health Manag Pract."},{"issue":"6","key":"2026101120031424100_r6","doi-asserted-by":"crossref","first-page":"e2021055368","DOI":"10.1542\/peds.2021-055368","article-title":"An ethical analysis of newborn congenital cytomegalovirus screening","volume":"149","author":"Pesch","year":"2022","journal-title":"Pediatrics."},{"issue":"3","key":"2026101120031424100_r7","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1177\/13558196251382548","article-title":"The impact of congenital cytomegalovirus infection among families and caregivers: a qualitative analysis of responses to a public consultation on newborn screening in the UK","volume":"31","author":"Greiner","year":"2026","journal-title":"J Health Serv Res Policy."},{"issue":"9","key":"2026101120031424100_r8","first-page":"G107","article-title":"Pediatric clinician perspectives on communicating diagnostic uncertainty","volume":"31","author":"Meyer","year":"2019","journal-title":"Int J Qual Health Care."},{"issue":"2","key":"2026101120031424100_r9","doi-asserted-by":"crossref","first-page":"30","DOI":"10.3390\/ijns9020030","article-title":"The psychosocial impact of congenital cytomegalovirus on caregivers and families: lived experiences and review of the literature","volume":"9","author":"Zappas","year":"2023","journal-title":"Int J Neonatal Screen."},{"issue":"3","key":"2026101120031424100_r10","doi-asserted-by":"crossref","first-page":"566","DOI":"10.1038\/s41436-019-0670-3","article-title":"Health-care providers\u2019 perspectives on uncertainty generated by variant forms of newborn screening targets","volume":"22","author":"Azzopardi","year":"2020","journal-title":"Genet Med."},{"issue":"3","key":"2026101120031424100_r11","doi-asserted-by":"crossref","first-page":"e70004","DOI":"10.1002\/jgc4.70004","article-title":"Tension between the need for certainty and numerous uncertainties\u2014a focus group study on various perspectives on a potential genomic newborn screening program in Germany","volume":"34","author":"Doll","year":"2025","journal-title":"J Genet Couns."},{"key":"2026101120031424100_r12","doi-asserted-by":"crossref","first-page":"1415","DOI":"10.1038\/s41390-025-04327-z","article-title":"Neonatal characteristics and neurodevelopmental phenotypes in congenital cytomegalovirus","volume":"99","author":"Pollick","year":"2026","journal-title":"Pediatr Res."},{"issue":"4","key":"2026101120031424100_r13","doi-asserted-by":"crossref","first-page":"80","DOI":"10.3390\/ijns7040080","article-title":"Family perceptions of newborn cytomegalovirus screening: a qualitative study","volume":"7","author":"Cannon","year":"2021","journal-title":"Int J Neonatal Screen."},{"issue":"1","key":"2026101120031424100_r14","doi-asserted-by":"crossref","first-page":"e000844","DOI":"10.1136\/bmjpo-2020-000844","article-title":"Parenting a child with congenital cytomegalovirus infection: a qualitative study","volume":"4","author":"Vandrevala","year":"2020","journal-title":"BMJ Paediatr Open."},{"issue":"3","key":"2026101120031424100_r15","doi-asserted-by":"crossref","first-page":"49","DOI":"10.3390\/ijns9030049","article-title":"Parental perspectives on communication from health care providers following a newborn diagnosis of congenital cytomegalovirus infection: a secondary analysis of a qualitative study","volume":"9","author":"Lanzieri","year":"2023","journal-title":"Int J Neonatal Screen."},{"issue":"6","key":"2026101120031424100_r16","first-page":"2029","article-title":"Conducting thematic analysis with qualitative data","volume":"26","author":"Lochmiller","year":"2021","journal-title":"Qual Rep."},{"issue":"8","key":"2026101120031424100_r17","doi-asserted-by":"crossref","first-page":"846","DOI":"10.1080\/0142159X.2020.1755030","article-title":"Thematic analysis of qualitative data: AMEE guide No. 131","volume":"42","author":"Kiger","year":"2020","journal-title":"Med Teach."},{"issue":"5","key":"2026101120031424100_r18","doi-asserted-by":"crossref","first-page":"e222","DOI":"10.1542\/hpeds.2024-007978","article-title":"Qualitative approaches in health services research: a methodological primer","volume":"15","author":"Sierpe","year":"2025","journal-title":"Hosp Pediatr."},{"issue":"11","key":"2026101120031424100_r19","doi-asserted-by":"crossref","first-page":"e503","DOI":"10.1542\/hpeds.2024-007794","article-title":"The conceptual framework: a practical guide","volume":"14","author":"Kulesa","year":"2024","journal-title":"Hosp Pediatr."},{"issue":"4","key":"2026101120031424100_r20","doi-asserted-by":"crossref","first-page":"225","DOI":"10.1111\/j.1547-5069.1988.tb00082.x","article-title":"Uncertainty in illness","volume":"20","author":"Mishel","year":"1988","journal-title":"Image J Nurs Sch."},{"issue":"3","key":"2026101120031424100_r21","doi-asserted-by":"crossref","first-page":"477","DOI":"10.1111\/j.1460-2466.2001.tb02892.x","article-title":"Communication and Uncertainty Management","volume":"51","author":"Brashers","year":"2001","journal-title":"J Commun."},{"key":"2026101120031424100_r22","first-page":"2177","volume-title":"Encyclopedia of Behavioral Medicine","author":"Lazarus","year":"1984"},{"issue":"4","key":"2026101120031424100_r23","doi-asserted-by":"crossref","first-page":"53","DOI":"10.3390\/ijns8040053","article-title":"Psychosocial issues related to newborn screening: a systematic review and synthesis","volume":"8","author":"Tluczek","year":"2022","journal-title":"Int J Neonatal Screen."}],"container-title":["Hospital Pediatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/publications.aap.org\/hospitalpediatrics\/article-pdf\/doi\/10.1542\/hpeds.2026-009558\/1977612\/hosppeds.2026009558.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/publications.aap.org\/hospitalpediatrics\/article-pdf\/doi\/10.1542\/hpeds.2026-009558\/1977612\/hosppeds.2026009558.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,12]],"date-time":"2026-10-12T00:03:20Z","timestamp":1791763400000},"score":1,"resource":{"primary":{"URL":"https:\/\/publications.aap.org\/hospitalpediatrics\/article\/doi\/10.1542\/hpeds.2026-009558\/210932\/Living-With-Known-Unknowns-Prognostic-Uncertainty"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,10,12]]},"references-count":23,"URL":"https:\/\/doi.org\/10.1542\/hpeds.2026-009558","relation":{},"ISSN":["2154-1663","2154-1671"],"issn-type":[{"value":"2154-1663","type":"print"},{"value":"2154-1671","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,10,12]]},"article-number":"e2026009558"}}