{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T02:23:47Z","timestamp":1788229427148,"version":"build-2803163510"},"reference-count":53,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2025,11,27]],"date-time":"2025-11-27T00:00:00Z","timestamp":1764201600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2025,11,27]],"date-time":"2025-11-27T00:00:00Z","timestamp":1764201600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100009633","name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","doi-asserted-by":"publisher","award":["K23HD100568"],"award-info":[{"award-number":["K23HD100568"]}],"id":[{"id":"10.13039\/100009633","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2026,4]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>The World Health Organization defines health as \u201ca state of complete physical, mental, and social well\u2010being and not merely the absence of disease or infirmity.\u201d Medical interventions are often studied for effectiveness in carefully controlled clinical trials, but the parent\u2010perceived, real\u2010world helpfulness of medical management steps on health is less studied. As part of a broader study to create a valid, reliable health measure in DS, we surveyed caregivers of individuals aged 0\u201321 with Down syndrome (DS) about activities that were helpful for managing their children's health. From February 2023 to February 2024, we received 542 complete survey responses from a national sample. We present caregiver\u2010reported information on actions that caregivers perceived as helpful to address medical conditions in individuals with DS, medical providers seen, and correlations with general health status. Caregiver reports revealed variable health management actions and diverse perceived helpfulness across health domains. Certain actions for constipation prevention and mental health management correlated with higher overall health scores. The utilization of primary care providers and specialists highlights the importance of interprofessional care and communication.<\/jats:p>\n                  <jats:p>\n                    <jats:bold>Trial Registration:<\/jats:bold>\n                    <jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" xlink:href=\"http:\/\/clinicaltrials.gov\">ClinicalTrials.gov<\/jats:ext-link>\n                    : NCT04631237\n                  <\/jats:p>","DOI":"10.1002\/ajmga.70006","type":"journal-article","created":{"date-parts":[[2025,11,27]],"date-time":"2025-11-27T08:44:07Z","timestamp":1764233047000},"page":"835-845","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Caregivers' Perspectives on Medical Management and Its Helpfulness in Down Syndrome"],"prefix":"10.1002","volume":"200","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7905-871X","authenticated-orcid":false,"given":"Kavita","family":"Krell","sequence":"first","affiliation":[{"name":"University of Missouri School of Medicine  Columbia Missouri USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-9175-5215","authenticated-orcid":false,"given":"Mary","family":"Witt","sequence":"additional","affiliation":[{"name":"Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4172-0288","authenticated-orcid":false,"given":"Stephanie L.","family":"Santoro","sequence":"additional","affiliation":[{"name":"Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,11,27]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2016.02.046"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2016-0123"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2016.06.018"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMra1706537"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2022-057010"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1093\/eurjcn\/zvae012"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12474"},{"key":"e_1_2_12_9_1","unstructured":"DS\u2010Connect.2025.\u201cClinicalTrials.gov\u2014Developing a Down Syndrome Health Instrument.\u201d"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1093\/heapol\/czn022"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1352\/1944-7558-121.4.312"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41436-019-0637-4"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jalz.2014.10.007"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2018.3616"},{"key":"e_1_2_12_17_1","first-page":"435","article-title":"Conceptual Models of Social Determinants of Health: A Narrative Review","volume":"46","author":"Hosseini Shokouh S. 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