{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T13:41:01Z","timestamp":1790430061506,"version":"4.1.0"},"reference-count":21,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2011,2,3]],"date-time":"2011-02-03T00:00:00Z","timestamp":1296691200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J of Inher Metab Disea"],"published-print":{"date-parts":[[2011,4]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Parents of children with chronic disorders have an impaired health\u2010related quality of life (HRQoL) compared to parents of healthy children. Remarkably, parents of children with a metabolic disorder reported an even lower HRQoL than parents of children with other chronic disorders. Possibly, the uncertainty about the course of the disease and the limited life expectancy in many metabolic disorders are important factors in the low parental HRQoL. Therefore, we performed a cross\u2010sectional study in parents of children with phenylketonuria (PKU, OMIM #261600) and galactosemia (OMIM #230400), metabolic disorders not affecting life expectancy, in order to investigate their HRQoL compared to parents of healthy children and to parents of children with other metabolic disorders. A total of 185 parents of children with PKU and galactosemia aged 1\u201319 years completed two questionnaires. Parents of children with PKU or galactosemia reported a HRQoL comparable to parents of healthy children and a significantly better HRQoL than parents of children with other metabolic disorders. Important predictors for parental mental HRQoL were the psychosocial factors emotional support and loss of friendship. As parental mental functioning influences the health, development and adjustment of their children, it is important that treating physicians also pay attention to the wellbeing of the parents. The insight that emotional support and loss of friendship influence the HRQoL of the parents enables treating physicians to provide better support for these parents.<\/jats:p>","DOI":"10.1007\/s10545-010-9267-3","type":"journal-article","created":{"date-parts":[[2011,2,2]],"date-time":"2011-02-02T09:33:24Z","timestamp":1296639204000},"page":"391-398","source":"Crossref","is-referenced-by-count":64,"title":["Parenting a child with phenylketonuria or galactosemia: implications for health\u2010related quality of life"],"prefix":"10.1002","volume":"34","author":[{"given":"Amber E.","family":"ten Hoedt","sequence":"first","affiliation":[{"name":"Department of Pediatrics (H7\u2010270), Academic Medical Center University of Amsterdam Meibergdreef 9 Amsterdam 1105 AZ The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heleen","family":"Maurice\u2010Stam","sequence":"additional","affiliation":[{"name":"Pediatric Psychosocial Department, Academic Medical Center University of Amsterdam Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolien C. A.","family":"Boelen","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Leiden University Medical Center Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M. Estela","family":"Rubio\u2010Gozalbo","sequence":"additional","affiliation":[{"name":"Department of Pediatrics and Laboratory Genetic Metabolic Diseases Maastricht University Medical Center Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francjan J.","family":"van Spronsen","sequence":"additional","affiliation":[{"name":"Department of Pediatrics University Medical Center Groningen Groningen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frits A.","family":"Wijburg","sequence":"additional","affiliation":[{"name":"Department of Pediatrics (H7\u2010270), Academic Medical Center University of Amsterdam Meibergdreef 9 Amsterdam 1105 AZ The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annet M.","family":"Bosch","sequence":"additional","affiliation":[{"name":"Department of Pediatrics (H7\u2010270), Academic Medical Center University of Amsterdam Meibergdreef 9 Amsterdam 1105 AZ The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martha A.","family":"Grootenhuis","sequence":"additional","affiliation":[{"name":"Pediatric Psychosocial Department, Academic Medical Center University of Amsterdam Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2011,2,3]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-6-91"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10545-006-0382-0"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.113.5.e423"},{"key":"e_1_2_7_5_1","unstructured":"BruilJ FekkesT VogelsT VerripsGHW(2004)TAAQOL Manual.Leiden Center for Child Health and Pediatrics LUMC\u2010TNO."},{"key":"e_1_2_7_6_1","volume-title":"Statistical power analysis for the behavioral sciences","author":"Cohen J","year":"1988"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1037\/0893-3200.18.4.609"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2008-0582"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1651-2227.2009.01269.x"},{"key":"e_1_2_7_10_1","first-page":"224","article-title":"Childhood chronic disease and family functioning: a study of phenylketonuria","volume":"81","author":"Kazak AE","year":"1988","journal-title":"Pediatrics"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2007.15.2835"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1025114331419"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11065-007-9021-2"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1007\/s004310050945"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-7610.1991.tb00312.x"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(07)61238-0"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1008996223999"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1007\/PL00014262"},{"key":"e_1_2_7_19_1","unstructured":"ScriverR LevyH DonlonJ(2008)Hyperphenylalaninemia: Phenylalanine hydroxylase deficiency.In the online metabolic and molecular bases of inherited disease. 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