{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,2]],"date-time":"2026-04-02T16:51:17Z","timestamp":1775148677177,"version":"3.50.1"},"reference-count":132,"publisher":"American Spinal Injury Association","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2022]]},"abstract":"\n Objectives:<\/jats:bold>\n To characterize child, parent, and family adjustment for patients followed in a multidisciplinary spina bifida (SB) clinic.\n Methods:<\/jats:bold>\n Participants were drawn from clinical cases seen through a multidisciplinary outpatient SB clinic at a children\u2019s hospital between 2017 and 2019. Participants included 209 youth under 19 years old who were diagnosed with SB and their parents. Self-reported internalizing symptoms were measured in youth in grade 3 through 12 using the 25-item Revised Children\u2019s Anxiety and Depression Scale-25 (RCADS-25). Self- and parent-reported quality of life and family functioning were obtained using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and Family Impact Modules.\n Results:<\/jats:bold>\n A total of 45.7% of children and adolescents reported at-risk psychosocial functioning on the PedsQL. In contrast, only 5% of patients reported clinically elevated internalizing symptoms on the RCADS. Parents\u2019 quality of life and family functioning in the study were higher than in most studies of parents of children with other chronic health conditions, children with attention deficit-hyperactivity disorder, and healthy control samples.\n Conclusion:<\/jats:bold>\n Our findings indicate that children and adolescents with SB are at risk for poor health-related quality of life (HRQOL); however, poorer HRQOL may not necessarily be associated with more severe psychiatric symptoms in this population. Examining resilience factors that may help to buffer against challenges to HRQOL will be important in informing future interventions.\n <\/jats:p>","DOI":"10.46292\/sci21-00074","type":"journal-article","created":{"date-parts":[[2022,8,17]],"date-time":"2022-08-17T16:38:55Z","timestamp":1660754335000},"page":"41-58","source":"Crossref","is-referenced-by-count":6,"title":["Child, Parent, and Family Adjustment for Patients Followed in a Multidisciplinary Spina Bifida Clinic"],"prefix":"10.46292","volume":"28","author":[{"given":"Tess S.","family":"Simpson","sequence":"first","affiliation":[{"name":"Department of Physical Medicine & Rehabilitation, University of Colorado School of Medicine and Children\u2019s Hospital Colorado, Aurora, Colorado"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Leah A.","family":"Grande","sequence":"additional","affiliation":[{"name":"Department of Psychology, University of Denver, Denver, Colorado"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica J.","family":"Kenny","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, University of Colorado School of Medicine and Children\u2019s Hospital Colorado, Aurora, Colorado"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pamela E.","family":"Wilson","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine & Rehabilitation, University of Colorado School of Medicine and Children\u2019s Hospital Colorado, Aurora, Colorado"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robin L.","family":"Peterson","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine & Rehabilitation, University of Colorado School of Medicine and Children\u2019s Hospital Colorado, Aurora, Colorado"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"25425","reference":[{"issue":"3","key":"i1945-5763-28-3-41-b1","series-title":"J Pediatr Psychol","doi-asserted-by":"publisher","first-page":"370","DOI":"10.1093\/jpepsy\/jsl002","article-title":"Quality of life and resilience in adolescents with a mobility disability","volume":"32","year":"2007","unstructured":"Alriksson-Schmidt\n AI,\n \n \n Wallander\n J,\n \n \n Biasini\n F.\n \n \n Quality of life and resilience in adolescents with a mobility disability.\n\t\t\t\t\tJ Pediatr Psychol.\n\t\t\t\t\t2007;32(3):370\u2013379.\n\t\t\t\t\tdoi:10.1093\/jpepsy\/jsl002"},{"issue":"1","key":"i1945-5763-28-3-41-b2","series-title":"Dev Disabil Res Rev","doi-asserted-by":"publisher","first-page":"40","DOI":"10.1002\/ddrr.90","article-title":"Psychosocial and family functioning in spina bifida","volume":"16","year":"2010","unstructured":"Holmbeck\n GN,\n \n \n Devine\n KA.\n \n \n Psychosocial and family functioning in 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M,\n \n \n Mullaart\n RA,\n \n \n Vinck\n A,\n \n \n Gerris\n JRM.\n \n \n Parents\u2019 personality and parenting stress in families of children with spina bifida.\n\t\t\t\t\tChild Care Health Dev.\n\t\t\t\t\t2008;34(5):665\u2013674.\n\t\t\t\t\tdoi:10.1111\/j.1365-2214.2008.00868.x"},{"issue":"4","key":"i1945-5763-28-3-41-b8","series-title":"Clin Pract Pediatr Psychol","doi-asserted-by":"publisher","first-page":"326","DOI":"10.1037\/cpp0000305","article-title":"Parent stress for patients followed in a multidisciplinary spinal defects clinic","volume":"8","year":"2020","unstructured":"Simpson\n TS,\n \n \n Kenny\n JJ,\n \n \n Wilson\n PE,\n \n \n Clayton\n GH,\n \n \n Peterson\n RL.\n \n \n Parent stress for patients followed in a multidisciplinary spinal defects clinic.\n\t\t\t\t\tClin Pract Pediatr Psychol.\n\t\t\t\t\t2020;8(4):326\u2013337.\n\t\t\t\t\tdoi:10.1037\/cpp0000305"},{"issue":"1","key":"i1945-5763-28-3-41-b9","series-title":"J Spinal Cord 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bifida","volume":"15","year":"2014","unstructured":"Rocque\n BG,\n \n \n Bishop\n ER,\n \n \n Scogin\n MA,\n \n \n .\n\t\t\t\t\tAssessing health-related quality of life in children with spina bifida.\n\t\t\t\t\tJ Neurosurg Pediatr.\n\t\t\t\t\t2014;15(2):144\u2013149."},{"issue":"7","key":"i1945-5763-28-3-41-b16","series-title":"Paediatr Child Health","first-page":"e32","article-title":"The association between urinary continence and quality of life in paediatric patients with spina bifida and tethered cord","volume":"18","year":"2013","unstructured":"Olesen\n JD,\n \n \n Kiddoo\n DA,\n \n \n Metcalfe\n PD.\n \n \n The association between urinary continence and quality of life in paediatric patients with spina bifida and tethered cord.\n\t\t\t\t\tPaediatr Child Health.\n\t\t\t\t\t2013;18(7):e32."},{"issue":"6","key":"i1945-5763-28-3-41-b17","series-title":"Clin Rehabil","doi-asserted-by":"publisher","first-page":"677","DOI":"10.1191\/0269215505cr865oa","article-title":"Determinants of 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