{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,4]],"date-time":"2026-08-04T05:38:31Z","timestamp":1785821911476,"version":"3.56.0"},"reference-count":14,"publisher":"Journal of Neurosurgery Publishing Group (JNSPG)","issue":"4","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2020,10]]},"abstract":"<jats:sec><jats:title>OBJECTIVE<\/jats:title><jats:p>Hydrocephalus is a chronic medical condition that has a significant impact on children and their caregivers. The objective of this study was to measure the quality of life (QOL) of children with hydrocephalus, as assessed by both caregivers and patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>METHODS<\/jats:title><jats:p>Pediatric patients with hydrocephalus and their caregivers were enrolled during routine neurosurgery clinic visits. The Hydrocephalus Outcomes Questionnaire (HOQ), a report of hydrocephalus-related QOL, was administered to both children with hydrocephalus (self-report) and their caregivers (proxy report about the child). Patients with hydrocephalus also completed measures of anxiety, depression, fatigue, traumatic stress, and headache. Caregivers completed a proxy report of child traumatic stress and a measure of caregiver burden. Demographic information was collected from administration of the Psychosocial Assessment Tool (version 2.0) and from the medical record. Child and caregiver HOQ scores were analyzed and correlated with clinical, demographic, and psychological variables.<\/jats:p><\/jats:sec><jats:sec><jats:title>RESULTS<\/jats:title><jats:p>The mean overall HOQ score (parent assessment of child QOL) was 0.68. HOQ Physical Health, Social-Emotional Health, and Cognitive Health subscore averages were 0.69, 0.73, and 0.54, respectively. The mean overall child self-assessment (cHOQ) score was 0.77, with cHOQ Physical Health, Social-Emotional Health, and Cognitive Health subscore means of 0.84, 0.79, and 0.66, respectively. Thirty-nine dyads were analyzed, in which both a child with hydrocephalus and his or her caregiver completed the cHOQ and HOQ. There was a positive correlation between parent and child scores (p &lt; 0.004 for all subscores). Child scores were consistently higher than parent scores. Variables that showed association with caregiver-assessed QOL in at least one domain included child age, etiology of hydrocephalus, and history of endoscopic third ventriculostomy. There was a significant negative relationship (rho \u22120.48 to \u22120.60) between child-reported cHOQ score and child-reported measures of posttraumatic stress, anxiety, depression, and fatigue. There was a similar significant relationship between caregiver report of child\u2019s QOL (HOQ) and caregiver assessment of the child\u2019s posttraumatic stress symptoms as well as their assessment of burden of care (rho = \u22120.59 and rho = \u22120.51, respectively). No relationship between parent-reported HOQ and child-reported psychosocial factors was significant. No clinical or demographic variables were associated with child self-assessed cHOQ.<\/jats:p><\/jats:sec><jats:sec><jats:title>CONCLUSIONS<\/jats:title><jats:p>Pediatric patients with hydrocephalus consistently rate their own QOL higher than their caregivers do. Psychological factors such as anxiety and posttraumatic stress may be associated with lower QOL. These findings warrant further exploration.<\/jats:p><\/jats:sec>","DOI":"10.3171\/2020.4.peds19660","type":"journal-article","created":{"date-parts":[[2020,7,10]],"date-time":"2020-07-10T07:06:58Z","timestamp":1594364818000},"page":"353-363","source":"Crossref","is-referenced-by-count":10,"title":["Hydrocephalus-related quality of life as assessed by children and their caregivers"],"prefix":"10.3171","volume":"26","author":[{"given":"Kathrin","family":"Zimmerman","sequence":"first","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bobby","family":"May","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Mississippi Medical Center, Jackson, Mississippi"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine","family":"Barnes","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anastasia","family":"Arynchyna","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth N.","family":"Alford","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gustavo","family":"Chagoya","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caroline","family":"Arata Wessinger","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura E.","family":"Dreer","sequence":"additional","affiliation":[{"name":"Department of Ophthalmology, and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Inmaculada","family":"Aban","sequence":"additional","affiliation":[{"name":"Department of Biostatistics, University of Alabama at Birmingham, Alabama; and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James M.","family":"Johnston","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Curtis J.","family":"Rozzelle","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeffrey P.","family":"Blount","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brandon G.","family":"Rocque","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery,"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1754","reference":[{"key":"b1","series-title":"World Neurosurg","doi-asserted-by":"publisher","first-page":"247","DOI":"10.1016\/j.wneu.2017.01.107","article-title":"Quality of life in individuals surgically treated for congenital hydrocephalus during infancy: a single-institution experience","volume":"101","author":"Khan SA","year":"2017","unstructured":"Khan SA, Khan MF, Bakhshi SK,  Quality of life in individuals surgically treated for congenital hydrocephalus during infancy: a single-institution experience. World Neurosurg. 2017;101:247\u2013253.2817917210.1016\/j.wneu.2017.01.107"},{"issue":"6","key":"b2","series-title":"Childs Nerv Syst","doi-asserted-by":"publisher","first-page":"737","DOI":"10.1007\/s00381-010-1131-0","article-title":"Quality of life in childhood hydrocephalus: a review","volume":"26","author":"Kulkarni AV","year":"2010","unstructured":"Kulkarni AV. Quality of life in childhood hydrocephalus: a review. Childs Nerv Syst. 2010;26(6):737\u2013743.2036133210.1007\/s00381-010-1131-0"},{"issue":"8","key":"b3","series-title":"Dev Med Child Neurol","doi-asserted-by":"publisher","first-page":"587","DOI":"10.1111\/j.1469-8749.2008.03037.x","article-title":"Comparing children\u2019s and parents\u2019 perspectives of health outcome in paediatric hydrocephalus","volume":"50","author":"Kulkarni AV","year":"2008","unstructured":"Kulkarni AV, Cochrane DD, McNeely PD, Shams I. Comparing children\u2019s and parents\u2019 perspectives of health outcome in paediatric hydrocephalus. Dev Med Child Neurol. 2008;50(8):587\u2013592.1875489510.1111\/j.1469-8749.2008.03037.x"},{"issue":"2","key":"b4","series-title":"J Biomed Inform","doi-asserted-by":"publisher","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","article-title":"Research electronic data capture (REDCap)\u2014a metadata-driven methodology and workflow process for providing translational research informatics support","volume":"42","author":"Harris PA","year":"2009","unstructured":"Harris PA, Taylor R, Thielke R,  Research electronic data capture (REDCap)\u2014a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377\u2013381.1892968610.1016\/j.jbi.2008.08.010"},{"issue":"2)(suppl","key":"b5","series-title":"J Neurosurg","first-page":"134","article-title":"An instrument to measure the health status in children with hydrocephalus: the Hydrocephalus Outcome Questionnaire","volume":"101","author":"Kulkarni AV","year":"2004","unstructured":"Kulkarni AV, Rabin D, Drake JM. An instrument to measure the health status in children with hydrocephalus: the Hydrocephalus Outcome Questionnaire. J Neurosurg. 2004;101(2)(suppl):134\u2013140.15835099"},{"issue":"1","key":"b6","series-title":"J Pediatr Psychol","doi-asserted-by":"publisher","first-page":"50","DOI":"10.1093\/jpepsy\/jsm053","article-title":"The Psychosocial Assessment Tool (PAT2.0): psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer","volume":"33","author":"Pai ALH","year":"2008","unstructured":"Pai ALH, Pati\u00f1o-Fern\u00e1ndez AM, McSherry M,  The Psychosocial Assessment Tool (PAT2.0): psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. J Pediatr Psychol. 2008;33(1):50\u201362.10.1093\/jpepsy\/jsm05317609228"},{"issue":"8","key":"b7","series-title":"J Am Acad Child Adolesc Psychiatry","doi-asserted-by":"publisher","first-page":"972","DOI":"10.1097\/01.CHI.0000046887.27264.F3","article-title":"Child Stress Disorders Checklist: a measure of ASD and PTSD in children","volume":"42","author":"Saxe G","year":"2003","unstructured":"Saxe G, Chawla N, Stoddard F,  Child Stress Disorders Checklist: a measure of ASD and PTSD in children. J Am Acad Child Adolesc Psychiatry. 2003;42(8):972\u2013978.10.1097\/01.CHI.0000046887.27264.F312874500"},{"issue":"1","key":"b8","series-title":"J Trauma Stress","doi-asserted-by":"publisher","first-page":"129","DOI":"10.1002\/jts.20090","article-title":"The Acute Stress Checklist for Children (ASC-Kids): development of a child self-report measure","volume":"19","author":"Kassam-Adams N.","year":"2006","unstructured":"Kassam-Adams N. The Acute Stress Checklist for Children (ASC-Kids): development of a child self-report measure. J Trauma Stress. 2006;19(1):129\u2013139.10.1002\/jts.2009016568466"},{"issue":"9","key":"b9","series-title":"Qual Life Res","doi-asserted-by":"publisher","first-page":"2195","DOI":"10.1007\/s11136-015-0953-3","article-title":"PROMIS\u00ae pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions","volume":"24","author":"DeWalt DA","year":"2015","unstructured":"DeWalt DA, Gross HE, Gipson DS,  PROMIS\u00ae pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Qual Life Res. 2015;24(9):2195\u20132208.2571594610.1007\/s11136-015-0953-3"},{"issue":"11","key":"b10","series-title":"Neurology","doi-asserted-by":"publisher","first-page":"2034","DOI":"10.1212\/WNL.57.11.2034","article-title":"PedMIDAS: development of a questionnaire to assess disability of migraines in children","volume":"57","author":"Hershey AD","year":"2001","unstructured":"Hershey AD, Powers SW, Vockell AL,  PedMIDAS: development of a questionnaire to assess disability of migraines in children. Neurology. 2001;57(11):2034\u20132039.10.1212\/WNL.57.11.203411739822"},{"issue":"5","key":"b11","series-title":"Gerontologist","doi-asserted-by":"publisher","first-page":"652","DOI":"10.1093\/geront\/41.5.652","article-title":"The Zarit Burden Interview: a new short version and screening version","volume":"41","author":"B\u00e9dard M","year":"2001","unstructured":"B\u00e9dard M, Molloy DW, Squire L,  The Zarit Burden Interview: a new short version and screening version. Gerontologist. 2001;41(5):652\u2013657.10.1093\/geront\/41.5.65211574710"},{"issue":"4","key":"b12","series-title":"Childs Nerv Syst","doi-asserted-by":"publisher","first-page":"741","DOI":"10.1007\/s00381-017-3691-8","article-title":"Medical and socioeconomic predictors of quality of life in myelomeningocele patients with shunted hydrocephalus","volume":"34","author":"Karmur BS","year":"2018","unstructured":"Karmur BS, Kulkarni AV. Medical and socioeconomic predictors of quality of life in myelomeningocele patients with shunted hydrocephalus. Childs Nerv Syst. 2018;34(4):741\u2013747.2924907310.1007\/s00381-017-3691-8"},{"issue":"5","key":"b13","series-title":"J Pediatr","doi-asserted-by":"publisher","first-page":"689","DOI":"10.1016\/j.jpeds.2008.04.068","article-title":"Medical, social, and economic factors associated with health-related quality of life in Canadian children with hydrocephalus","volume":"153","author":"Kulkarni AV","year":"2008","unstructured":"Kulkarni AV, Cochrane DD, McNeely PD, Shams I. Medical, social, and economic factors associated with health-related quality of life in Canadian children with hydrocephalus. J Pediatr. 2008;153(5):689\u2013695.10.1016\/j.jpeds.2008.04.06818571672"},{"issue":"5)(suppl","key":"b14","series-title":"J Neurosurg","first-page":"358","article-title":"Quality of life in children with hydrocephalus: results from the Hospital for Sick Children, Toronto","volume":"107","author":"Kulkarni AV","year":"2007","unstructured":"Kulkarni AV, Shams I. Quality of life in children with hydrocephalus: results from the Hospital for Sick Children, Toronto. J Neurosurg. 2007;107(5)(suppl):358\u2013364.18459898"}],"container-title":["Journal of Neurosurgery: Pediatrics"],"original-title":[],"link":[{"URL":"https:\/\/thejns.org\/view\/journals\/j-neurosurg-pediatr\/26\/4\/article-p353.xml","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/thejns.org\/downloadpdf\/journals\/j-neurosurg-pediatr\/26\/4\/article-p353.xml","content-type":"text\/html","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/thejns.org\/downloadpdf\/journals\/j-neurosurg-pediatr\/26\/4\/article-p353.xml","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,4,15]],"date-time":"2023-04-15T17:13:27Z","timestamp":1681578807000},"score":1,"resource":{"primary":{"URL":"https:\/\/thejns.org\/view\/journals\/j-neurosurg-pediatr\/26\/4\/article-p353.xml"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,10]]},"references-count":14,"journal-issue":{"issue":"4"},"URL":"https:\/\/doi.org\/10.3171\/2020.4.peds19660","relation":{},"ISSN":["1933-0707","1933-0715"],"issn-type":[{"value":"1933-0707","type":"print"},{"value":"1933-0715","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,10]]}}}