Health-related quality of life in children with sickle cell disease: child and parent perception

British Journal of Haematology
Julie A PanepintoJ Paul Scott

Abstract

Health-related quality of life (HRQL) is an outcome that may be used to measure the impact of sickle cell disease on the child and their family but has not been routinely assessed in this disease. The objective of this study was to describe the HRQL of children with sickle cell disease as reported by the parent and the child, to compare the relationship between the two, and to determine the association of parent, child and disease characteristics on HRQL. Ninety-five parents completed the Child Health Questionnaire (CHQ)-Parent Form28 and 53 children completed the CHQ-Child Form87. Compared with the child report, parents reported worse HRQL in the overall perception of health, physical functioning, behaviour and self esteem domains of HRQL (P < 0.005). Parent and child reports of HRQL correlated strongly in assessment of the impact of bodily pain (r = 0.58) on HRQL and moderately in physical functioning (r = 0.44), behaviour (r = 0.45), general health (r = 0.44), self esteem (r = 0.40) and changes in health (r = 0.33) domains. Disease status, neurobehavioral co-morbidities, and parent education were associated with the HRQL of the child. Both the parent and child perspectives are needed to fully understand the impact of sickle ...Continue Reading

References

Jul 4, 1991·The New England Journal of Medicine·O S PlattT R Kinney
Aug 1, 1988·Journal of Developmental and Behavioral Pediatrics : JDBP·M G FowlerC McMillan
Mar 1, 1982·The British Journal of Ophthalmology·K L Cohen
Jun 9, 1994·The New England Journal of Medicine·O S PlattP P Klug
Jan 1, 1993·Journal of Learning Disabilities·R T BrownJ R Eckman
Jun 1, 1996·The Journal of Pediatrics·J P ScottR J Labotka
Aug 8, 1996·The New England Journal of Medicine·Mark C WaltersK M Sullivan
Feb 1, 1997·Pediatrics·G GuyattP J Ferrie
Aug 6, 1998·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·N C TheunissenJ M Wit
Oct 16, 1999·Experimental and Clinical Endocrinology & Diabetes : Official Journal, German Society of Endocrinology [and] German Diabetes Association·R Landgraf
Feb 19, 2000·International Journal of Cancer. Supplement = Journal International Du Cancer. Supplement·M SawyerM Rice
Feb 19, 2000·International Journal of Cancer. Supplement = Journal International Du Cancer. Supplement·R B Levi, Dennis Drotar
Oct 13, 2000·American Journal of Respiratory and Critical Care Medicine·L AsmussenK B Weiss
Nov 14, 2000·Archives of Otolaryngology--head & Neck Surgery·M J CunninghamR E Gliklich
Dec 8, 2000·Diabetic Medicine : a Journal of the British Diabetic Association·M WakeF Cameron
Mar 10, 2001·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·E M le CoqJ T van Eijk
Jul 24, 2001·Journal of Child Psychology and Psychiatry, and Allied Disciplines·Y H VanceChristine Eiser
Sep 26, 2001·Developmental Medicine and Child Neurology·J W SchneiderD J Gaebler-Spira
Jan 5, 2002·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Christine Eiser, R Morse
Jun 12, 2002·Journal of Behavioral Medicine·Tonya M PalermoKathryn McGowan
Jul 30, 2002·American Journal of Public Health·Robert S KahnPaul H Wise
Dec 13, 2002·International Journal of Cancer. Journal International Du Cancer·Elizabeth B WatersElizabeth Smibert
Apr 10, 2003·JAMA : the Journal of the American Medical Association·Jeffrey B SchwimmerJames W Varni
Jun 5, 2003·Pediatrics·Mona E MansourThomas G DeWitt
Jan 1, 1994·Archives of Clinical Neuropsychology : the Official Journal of the National Academy of Neuropsychologists·B T GoonanJ R Eckman
Sep 3, 2004·Journal of Pediatric Hematology/oncology·Julie A PanepintoJ Paul Scott
Oct 12, 2004·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·A JokovicG Guyatt
Jun 15, 2005·British Journal of Haematology·Kofi A Anie

Citations

Jun 4, 2008·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Penney UptonChristine Eiser
Nov 8, 2008·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Julie A PanepintoRaymond G Hoffmann
Jun 4, 2011·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Julie A PanepintoJames W Varni
Mar 9, 2007·Journal of Child and Adolescent Psychopharmacology·Jennifer RademacherStephen M Strakowski
Apr 11, 2008·Journal of Pediatric Psychology·Catherine B McClellanCarla W Roberts
May 9, 2012·Journal of Pediatric Psychology·Crystal S LimIfeyinwa Osunkwo
Oct 3, 2012·Journal of Pediatric Psychology·Rachel Neff GreenleyErica Swanson
May 21, 2009·The Clinical Journal of Pain·Jeffrey I GoldTonya M Palermo
Sep 9, 2008·Journal of Pediatric Hematology/oncology·Julie A PanepintoRaymond G Hoffmann
Apr 26, 2011·Journal of Pediatric Hematology/oncology·Courtney D ThornburgJulie A Panepinto
Mar 31, 2010·International Journal of Rehabilitation Research. Internationale Zeitschrift Für Rehabilitationsforschung. Revue Internationale De Recherches De Réadaptation·Jennifer Jelsma
Oct 28, 2010·Health and Quality of Life Outcomes·Channa T HijmansMartha A Grootenhuis
Jan 13, 2010·Haematologica·Mariane de Montalembert, Irene Roberts
Nov 29, 2011·The Pan African Medical Journal·Mostafa Abdel-Monhem AmrOmar Ahmed Al-Omair
Jul 25, 2013·Journal of Genetic Counseling·Ambroise WonkamFru F Angwafo
Aug 16, 2014·Indian Journal of Palliative Care·Vijay M BhagatRamchandra C Goyal
Oct 29, 2010·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Hein RaatJohan P Mackenbach
Aug 15, 2014·Journal of Clinical Psychology in Medical Settings·Jamie L JacksonMelissa Rhodes
Nov 13, 2012·Journal of Pediatric Health Care : Official Publication of National Association of Pediatric Nurse Associates & Practitioners·Brian H WrotniakVirginia A Stallings
May 7, 2013·Comptes rendus biologies·Jean-Hugues Dalle
Jun 28, 2011·Journal of Pediatric Health Care : Official Publication of National Association of Pediatric Nurse Associates & Practitioners·Juanita Conkin DaleGeorge R Buchanan
Oct 28, 2014·American Journal of Hematology·Lauren M BeverungSIT trial investigators
Jun 14, 2008·The Journal of Pain : Official Journal of the American Pain Society·Tonya M PalermoBrian A Mitchell
May 23, 2007·The Journal of Pediatrics·David C BrousseauJulie A Panepinto
Jun 17, 2009·Journal of the American Academy of Nurse Practitioners·Valerie Mann-Jiles, Diana Lynn Morris
Dec 9, 2008·Pediatric Blood & Cancer·Courtney D ThornburgRussell E Ware
Dec 29, 2007·American Journal of Hematology·Patricia Adams-GravesPat Corley
Dec 21, 2011·Pediatric Blood & Cancer·Michael J KellyJourneys to Recovery Study, HSCT-CHESS™ Study
Feb 27, 2013·Pediatric Blood & Cancer·Julie A PanepintoJames W Varni
Jul 27, 2010·Pediatric Blood & Cancer·Carlton DampierComprehensive Sickle Cell Centers (CSCC) Clinical Trial Consortium (CTC)
Apr 24, 2012·Pediatric Blood & Cancer·Julie A Panepinto, Melanie J Bonner
Apr 16, 2011·Pediatric Blood & Cancer·John LeschkeDavid C Brousseau
Jan 13, 2011·Pediatric Blood & Cancer·Julie A WolfsonMichele D Kipke
Jan 21, 2014·Pediatric Blood & Cancer·Oluwakemi Badaki-MakunPediatric Emergency Care Applied Research Network (PECARN) Magnesium in Sickle Cell Crisis (MAGiC) Study Group
May 22, 2016·Revista brasileira de hematologia e hemoterapia·Maria Elvira Pizzigatti Correa
Apr 29, 2010·American Journal of Medical Genetics. Part a·Julie S Cohen, Barbara B Biesecker
Sep 29, 2009·Pediatric Blood & Cancer·Melanie J Bonner
Feb 2, 2010·Health & Social Care in the Community·B J BrownO O Akinyinka
Nov 18, 2015·Health and Quality of Life Outcomes·Anwar E AhmedWala E El-Toum
Sep 24, 2015·BMC Pediatrics·Jobert Richie N NansseuPaul Olivier N Koki
Mar 27, 2015·American Journal of Hematology·Erica B EsrickBenjamin L Ebert
Mar 17, 2015·Journal of Pediatric Health Care : Official Publication of National Association of Pediatric Nurse Associates & Practitioners·Mia AtouiMiguel Abboud
Aug 4, 2011·Molecular Genetics and Metabolism·Kee ChanMichael Apkon
Dec 1, 2014·Journal of Pediatric Psychology·Caitlin B MurrayJames W Varni
Jun 5, 2012·Biology of Blood and Marrow Transplantation : Journal of the American Society for Blood and Marrow Transplantation·Michael RothRosanna Ricafort
Apr 17, 2015·BMC Psychiatry·Mohammad Gamal Sehlo, Hayat Zakaria Kamfar
Mar 20, 2015·Journal of Pediatric Psychology·Crystal S LimDavid M Janicke
Dec 9, 2014·Children's Health Care : Journal of the Association for the Care of Children's Health·Crystal S LimDavid M Janicke
Jun 7, 2016·The Journal of Pain : Official Journal of the American Pain Society·Soumitri SilLindsey L Cohen
Jul 22, 2016·Child Neuropsychology : a Journal on Normal and Abnormal Development in Childhood and Adolescence·Taryn M AllenMelanie J Bonner
Jul 16, 2013·Journal of Pediatric Oncology Nursing : Official Journal of the Association of Pediatric Oncology Nurses·Martin Schiavenato, Ofelia Alvarez
Jan 27, 2017·Children·Paolo T PianosiHan C G Kemper
Jun 10, 2017·Pediatric Blood & Cancer·Robert I LiemAlexis A Thompson
Dec 12, 2013·Journal of Pediatric Hematology/oncology·Aimee K HildenbrandMeghan L Marsac
Sep 7, 2017·The Clinical Journal of Pain·Sarah R MartinCarlton Dampier
Feb 11, 2016·World Journal of Clinical Pediatrics·L IughettiDonatella Venturelli
Nov 11, 2016·Archives of Disease in Childhood·L HavermanR J Klaassen
Dec 1, 2017·European Journal of Pediatrics·Adrienne LernerMarie-Hélène Odièvre
Oct 16, 2018·Psychology, Health & Medicine·Antoinette Barton-GoodenMonika Asnani
Mar 14, 2008·Pediatric Blood & Cancer·Julie A Panepinto
Apr 30, 2019·Social Work in Public Health·Kendall L MoodyMitzi Glass
Jul 31, 2019·Journal of the International Neuropsychological Society : JINS·Sarah E BillsJeffrey Schatz
Feb 19, 2015·Journal of Pediatric Hematology/oncology·Cynthia W KarlsonGail Megason
Jan 4, 2018·Blood Advances·Soheir S AdamLaura M De Castro
Feb 22, 2007·Anesthesia and Analgesia·Thomas R Vetter
May 4, 2006·Current Opinion in Allergy and Clinical Immunology·Hein RaatMartha A Grootenhuis
Aug 18, 2017·Journal of Developmental and Behavioral Pediatrics : JDBP·Jeffrey SchatzCarla W Roberts
Aug 5, 2009·Pediatric Blood & Cancer·Amanda M BrandowJulie A Panepinto
Feb 25, 2011·Pediatric Hematology and Oncology·Selma UnalMevhibe Gülen Uyanıker
May 25, 2013·Revista paulista de pediatria : orgão oficial da Sociedade de Pediatria de São Paulo·Adeline Soraya de O da P MenezesJosefina Aparecida P Braga
Oct 20, 2015·Journal of Pediatric Hematology/oncology·Lindsay M AndersonMelanie J Bonner
Jun 14, 2017·Learning Health Systems·Million A TegengeTelba Irony
Mar 17, 2017·BMC Infectious Diseases·Anastasie Nicole Alima YandaPaul Olivier N Koki
Jul 28, 2019·Blood Advances·Ashima Singh, Julie A Panepinto
Sep 15, 2020·Journal of Pediatric Hematology/oncology·Clara AbadessoGordon Allen Finley

Related Concepts

Anemia, Sickle Cell
Child Behavior
Illiteracy
Health Status Indicators
Step-parent
Perception
Quality of Life
Regression Analysis
Self-Criticism
Self-Perception

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