{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,8]],"date-time":"2025-11-08T17:11:27Z","timestamp":1762621887923,"version":"build-2065373602"},"reference-count":36,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2014,4,23]],"date-time":"2014-04-23T00:00:00Z","timestamp":1398211200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["British J Health Psychol"],"published-print":{"date-parts":[[2015,5]]},"abstract":"\n Objectives<\/jats:title>\n \n The quality of life (QoL) of children with sickle cell anaemia (\n SCA<\/jats:styled-content>\n ) in the United Kingdom has not been examined, and a discrepancy measure based on Gap theory has rarely been used. This study investigated whether (1) child self\u2010reports of QoL using a discrepancy measure (the Generic Children's QoL Measure;\n GCQ<\/jats:styled-content>\n ) are lower than those from healthy children, (2) proxy reports from parents and health care professionals are lower than child self\u2010reports, and (3) demographic and disease severity indicators are related to QoL.\n <\/jats:p>\n <\/jats:sec>\n \n Design and methods<\/jats:title>\n \n An interdependent groups, cross\u2010sectional design was implemented. Seventy\u2010four children with\n SCA<\/jats:styled-content>\n , their parent, and members of their health care team completed the\n GCQ<\/jats:styled-content>\n . Demographic and disease severity indicators were recorded.\n GCQ<\/jats:styled-content>\n data from healthy children were obtained from the\n UK<\/jats:styled-content>\n Data Archive.\n <\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n Contrary to past research, when examining generic discrepancy QoL, children with\n SCA<\/jats:styled-content>\n did not report a lower QoL than healthy children, and parent\u2010 and health care professional\u2010proxy reports were not lower than child self\u2010reports. Few of the demographic and disease severity indicators were related to QoL.\n <\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n \n Proxy reports may be used to gain a more complete picture of QoL, but should not be a substitute for self\u2010reports. The explanation for the relatively high levels of QoL reported is not clear, but children with\n SCA<\/jats:styled-content>\n may have realistic expectations about their ideal\u2010self, place greater emphasis on aspects other than health in shaping their QoL, and define achievements within the limits of their illness. Future research should focus on psychological factors in explaining QoL.\n <\/jats:p>\n <\/jats:sec>\n \n \n \n \n \n Statement of contribution<\/jats:title>\n <\/jats:caption>\n \n \n What is already known on this subject?<\/jats:bold>\n <\/jats:italic>\n <\/jats:p>\n \n \n \n \n Children with sickle cell disease (\n SCD<\/jats:styled-content>\n ) generally have a reduced QoL compared with healthy children, but there appears to be no research measuring QoL in paediatric\n SCD<\/jats:styled-content>\n in the United Kingdom.\n <\/jats:p>\n <\/jats:list-item>\n \n Proxy QoL reports from parents are often lower than child self\u2010reports, but there is less research examining proxy reports from health care professionals.<\/jats:p>\n <\/jats:list-item>\n \n \n Previous research has measured paediatric QoL using measures of current health\u2010related QoL, but this is not in line with the\n WHO<\/jats:styled-content>\n 's definition of QoL as the discrepancy between current state and expectations.\n <\/jats:p>\n <\/jats:list-item>\n <\/jats:list>\n <\/jats:p>\n \n \n What does this study add?<\/jats:bold>\n <\/jats:italic>\n <\/jats:p>\n \n \n \n Children with Sickle cell anaemia do not have an impaired discrepancy QoL; they may have realistic expectations about their ideal\u2010self and define achievements within the limits of their illness.<\/jats:p>\n <\/jats:list-item>\n \n \n Health care professionals are able to gauge a\n SCA<\/jats:styled-content>\n child's discrepancy QoL better than parents.\n <\/jats:p>\n <\/jats:list-item>\n \n \n The\n GCQ<\/jats:styled-content>\n (a generic discrepancy measure of QoL) takes into account expectations about ideal QoL and does not emphasize health; it may be of use to Psychologists working with\n SCA<\/jats:styled-content>\n children.\n <\/jats:p>\n <\/jats:list-item>\n <\/jats:list>\n <\/jats:p>\n <\/jats:boxed-text>\n <\/jats:p>\n <\/jats:sec>","DOI":"10.1111\/bjhp.12099","type":"journal-article","created":{"date-parts":[[2014,4,23]],"date-time":"2014-04-23T08:14:51Z","timestamp":1398240891000},"page":"290-304","source":"Crossref","is-referenced-by-count":15,"title":["Assessing the quality of life of children with sickle cell anaemia using self\u2010, parent\u2010proxy, and health care professional\u2010proxy reports"],"prefix":"10.1111","volume":"20","author":[{"given":"Christina","family":"Constantinou","sequence":"first","affiliation":[{"name":"Psychology Department Middlesex University London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicola","family":"Payne","sequence":"additional","affiliation":[{"name":"Psychology Department Middlesex University London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Baba","family":"Inusa","sequence":"additional","affiliation":[{"name":"Evelina Children's Hospital Guy's and St Thomas NHS Foundation Trust London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2014,4,23]]},"reference":[{"key":"e_1_2_5_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0277\u20109536(98)00411\u20100"},{"key":"e_1_2_5_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajh.21550"},{"key":"e_1_2_5_4_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477\u20107525\u20106\u20106"},{"key":"e_1_2_5_5_1","doi-asserted-by":"publisher","DOI":"10.1097\/00004583\u2010200402000\u201000019"},{"key":"e_1_2_5_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.21142"},{"key":"e_1_2_5_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.10436"},{"key":"e_1_2_5_8_1","doi-asserted-by":"publisher","DOI":"10.1136\/jme.10.3.124"},{"key":"e_1_2_5_9_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.322.7296.1240"},{"volume-title":"Generic children's quality of life measure (GCQ) technical manual","year":"2008","author":"Collier J.","key":"e_1_2_5_10_1"},{"key":"e_1_2_5_11_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1008915700210"},{"key":"e_1_2_5_12_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsio68"},{"key":"e_1_2_5_13_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477\u20107525\u20104\u201058"},{"key":"e_1_2_5_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedhc.2009.12.006"},{"key":"e_1_2_5_15_1","doi-asserted-by":"publisher","DOI":"10.1080\/13854046.2011.560190"},{"key":"e_1_2_5_16_1","doi-asserted-by":"publisher","DOI":"10.1097\/00043426\u2010200211000\u201000008"},{"key":"e_1_2_5_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.22497"},{"key":"e_1_2_5_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140\u20106736(07)61013\u20107"},{"key":"e_1_2_5_19_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1012253723272"},{"key":"e_1_2_5_20_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365\u20102214.2000.00177.x"},{"key":"e_1_2_5_21_1","doi-asserted-by":"publisher","DOI":"10.3758\/BF03193146"},{"key":"e_1_2_5_22_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00467\u2010011\u20101784\u20102"},{"key":"e_1_2_5_23_1","doi-asserted-by":"publisher","DOI":"10.1037\/0278\u20106133.13.4.346"},{"key":"e_1_2_5_24_1","first-page":"1491","article-title":"The role of the self in adjustment to cancer in elderly women","volume":"19","author":"Heidrich S. 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