Health-Related Quality of Life in Children With Sickle Cell Disease Using the Child Health Questionnaire

Anie, 2005, Psychological complications in sickle cell disease, British Journal of Haematology, 129, 723, 10.1111/j.1365-2141.2005.05500.x Barbarin, 1999, The social and cultural context of coping with sickle cell disease: I. A review of biomedical and psychosocial issues, Journal of Black Psychology, 25, 277, 10.1177/0095798499025003002 Brandow, 2010, Vaso-occlusive painful events in sickle cell disease: Impact on child well-being, Pediatric Blood & Cancer, 54, 92, 10.1002/pbc.22222 Brown, 2002, Effect of supplemental zinc on the growth and serum zinc concentrations of prepubertal children: A meta-analysis of randomized controlled trials, American Journal of Clinical Nutrition, 75, 1062, 10.1093/ajcn/75.6.1062 Dale, 2011, Health-related quality of life in children and adolescents with sickle cell disease, Journal of Pediatric Health Care, 25, 208, 10.1016/j.pedhc.2009.12.006 Dampier, 2010, Health-related quality of life in children with sickle cell disease: A report from the Comprehensive Sickle Cell Centers Clinical Trial Consortium, Pediatric Blood & Cancer, 55, 485, 10.1002/pbc.22497 Dougherty, 2012, No improvement in suboptimal vitamin A status with a randomized double-blind placebo controlled trial of vitamin A supplementation in children with sickle cell disease, American Journal of Clinical Nutrition, 96, 932, 10.3945/ajcn.112.035725 Dougherty, 2011, Attenuated maximal muscle strength and peak power in children with sickle cell disease, Journal of Pediatric Hematology and Oncology, 33, 93, 10.1097/MPH.0b013e318200ef49 Drotar, 2004, Validating measures of pediatric health status, functional status, and health-related quality of life: Key methodological challenges and strategies, Ambulatory Pediatrics, 4, 358, 10.1367/A03-101R.1 Eijsermans, 2004, Motor performance, exercise tolerance, and health-related quality of life in children on dialysis, Pediatric Nephrology, 19, 1262, 10.1007/s00467-004-1583-0 Erhart, 2009, Measuring adolescents’ HRQoL via self reports and parent proxy reports: An evaluation of the psychometric properties of both versions of the KINDL-R instrument, Health and Quality of Life Outcomes, 7, 77, 10.1186/1477-7525-7-77 Heady, 1992 Hurtig, 1986, Psychosocial adjustment in children and adolescents with sickle cell disease, Journal of Pediatric Psychology, 11, 411, 10.1093/jpepsy/11.3.411 Jacob, 2008, Pain experience of children with sickle cell disease who had prolonged hospitalizations for acute painful episodes, Pain Medicine, 9, 13, 10.1111/j.1526-4637.2006.00252.x Kawchak, 2007, Adequacy of dietary intake declines with age in children with sickle cell disease, Journal of the American Dietetic Association, 107, 843, 10.1016/j.jada.2007.02.015 Kell, 1998, Psychological adjustment of adolescents with sickle cell disease: Relations with demographic, medical, and family competence variables, Journal of Pediatric Psychology, 23, 301, 10.1093/jpepsy/23.5.301 Kuczmarski, 2000 Landgraf, 1999 Lemanek, 1986, Psychological adjustment of children with sickle cell anemia, Journal of Pediatric Psychology, 11, 397, 10.1093/jpepsy/11.3.397 Lohman, 1988 McCullough, 2008, Use of the child health questionnaire in children with cerebral palsy: A systematic review and evaluation of the psychometric properties, Journal of Pediatric Psychology, 33, 80, 10.1093/jpepsy/jsm070 Midence, 1996, Psychological adjustment and family functioning in a group of British children with sickle cell disease: Preliminary empirical findings and a meta-analysis, British Journal of Clinical Psychology, 35, 439, 10.1111/j.2044-8260.1996.tb01198.x Modi, 2008, Validation of a parent-proxy, obesity-specific quality-of-life measure: Sizing them up, Obesity, 16, 2624, 10.1038/oby.2008.416 Morris, 1980, Validation of a self-administered instrument to assess stage of adolescent development, Journal of Youth and Adolescents, 9, 271, 10.1007/BF02088471 Nevergold, 1987, Therapy with families of children with sickle cell disease, Family Therapy Collections, 22, 67 Okpala, 2002, The comprehensiveness care of sickle cell disease, European Journal of Haematology, 68, 157, 10.1034/j.1600-0609.2002.01523.x Oliveira, 2007, Proxy-reported health-related quality of life of patients with juvenile idiopathic arthritis: the Pediatric Rheumatology International Trials Organization multinational quality of life cohort study, Arthritis & Rheumatism, 57, 35, 10.1002/art.22473 Palermo, 2008, Daily functioning and quality of life in children with sickle cell disease pain: Relationship with family and neighborhood socioeconomic distress, Journal of Pain, 9, 833, 10.1016/j.jpain.2008.04.002 Palermo, 2002, Parental report of health-related quality of life in children with sickle cell disease, Journal of Behavioral Medicine, 25, 269, 10.1023/A:1015332828213 Panepinto, 2009, A psychometric evaluation of the PedsQL Family Impact Module in parents of children with sickle cell disease, Health and Quality of Life Outcomes, 7, 32, 10.1186/1477-7525-7-32 Panepinto, 2005, Health-related quality of life in children with sickle cell disease: Child and parent perception, British Journal of Haematology, 130, 437, 10.1111/j.1365-2141.2005.05622.x Panepinto, 2004, Validity of the child health questionnaire for use in children with sickle cell disease, Journal of Pediatric Hematology and Oncology, 26, 574, 10.1097/01.mph.0000136453.93704.2e Prasad, 1999, Effect of zinc supplementation on incidence of infections and hospital admissions in sickle cell disease (SCD), American Journal of Hematology, 61, 194, 10.1002/(SICI)1096-8652(199907)61:3<194::AID-AJH6>3.0.CO;2-C Quinn, 2004, Survival of children with sickle cell disease, Blood, 103, 4023, 10.1182/blood-2003-11-3758 Quittner, 2005, Development and validation of The Cystic Fibrosis Questionnaire in the United States: A health-related quality-of-life measure for cystic fibrosis, Chest, 128, 2347, 10.1378/chest.128.4.2347 Raat, 2002, Reliability and validity of comprehensive health status measures in children: The Child Health Questionnaire in relation to the Health Utilities Index, Journal of Clinical Epidemiology, 55, 67, 10.1016/S0895-4356(01)00411-5 Sabaz, 2000, Validation of a new quality of life measure for children with epilepsy, Epilepsia, 41, 765, 10.1111/j.1528-1157.2000.tb00240.x Sawyer, 1999, A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer, International Journal of Cancer Supplement, 12, 39, 10.1002/(SICI)1097-0215(1999)83:12+<39::AID-IJC8>3.0.CO;2-7 Schlenk, 1998, Health-related quality of life in chronic disorders: a comparison across studies using the MOS SF-36, Quality of Life Research, 7, 57, 10.1023/A:1008836922089 Shankar, 2008, Impact of proximity to comprehensive sickle cell center on utilization of healthcare services among children with sickle cell disease, Pediatric Blood & Cancer, 50, 66, 10.1002/pbc.21066 Sprangers, 1999, Integrating response shift into health-related quality of life research: A theoretical model, Social Science & Medicine, 48, 1507, 10.1016/S0277-9536(99)00045-3 Stegenga, 2004, Quality of life among children with sickle cell disease receiving chronic transfusion therapy, Journal of Pediatric Oncology Nursing, 21, 207, 10.1177/1043454204265841 Tanner, 1962, Growth at adolescence, 28 Thomas, 2002, The psychosocial experience of people with sickle cell disease and its impact on quality of life: Qualitative findings from focus groups, British Journal of Health Psychology, 7, 345, 10.1348/135910702760213724 Thompson, 1993, Role of child and maternal processes in the psychological adjustment of children with sickle cell disease, Journal of Consulting and Clinical Psychology, 61, 468, 10.1037/0022-006X.61.3.468 Thompson, 1994, Psychological adjustment of children with sickle cell disease: Stability and change over a 10-month period, Journal of Consulting and Clinical Psychology, 62, 856, 10.1037/0022-006X.62.4.856 Trzepacz, 2004, Emotional, social, and behavioral functioning of children with sickle cell disease and comparison peers, Journal of Pediatric Hematology and Oncology, 26, 642, 10.1097/01.mph.0000139456.12036.8d Tsaras, 2009, Complications associated with sickle cell trait: a brief narrative review, American Journal of Medicine, 122, 507, 10.1016/j.amjmed.2008.12.020 Wake, 2000, The Child Health Questionnaire in children with diabetes: Cross-sectional survey of parent and adolescent-reported functional health status, Diabetic Medicine, 17, 700, 10.1046/j.1464-5491.2000.00360.x Wallander, 2001, Quality of life measurement in children and adolescents: Issues, instruments, and applications, Journal of Clinical Psychology, 57, 571, 10.1002/jclp.1029