The performance of the PedsQL generic core scales in children with sickle cell disease.
The objective of this study was to determine the feasibility, reliability, and validity of the Pediatric Quality of Life Inventory generic core scales (PedsQL questionnaire) in children with sickle cell disease. This was a cross-sectional study of children from an urban hospital-based sickle cell disease clinic and an urban primary care clinic. The study participants were children of ages 2 to 18 years who presented to clinic for a routine visit. Health-related quality of life (HRQL) was the main outcome. HRQL of children with sickle cell disease were compared with children without disease to test validity. Missing items were used to determine feasibility and Cronbach's alpha was used to determine reliability. Parents of 178 children (104 with sickle cell disease and 74 without disease) and 118 children (78 with sickle cell disease and 40 without disease) completed HRQL questionnaires. The PedsQL questionnaire was feasible and reliable. The parent proxy and child self-report questionnaire differentiated between children with and without sickle cell disease. The parent proxy-report differentiated well between children with mild and severe sickle cell disease. The questionnaire performed well in children with sickle cell disease and is a feasible, reliable, and valid tool to measure HRQL in children with sickle cell disease.
Panepinto
Julie A
JA
Department of Pediatrics, Hematology/Oncology/Bone Marrow Transplantation, Children's Hospital of Wisconsin of the Children's Research Institute, Milwaukee, WI 53226, USA. jpanepin@mcw.edu
Pajewski
Nicholas M
NM
Foerster
Lisa M
LM
Hoffmann
Raymond G
RG
D000293:Adolescent; D000755:Anemia, Sickle Cell / Q000175:diagnosis*; D016022:Case-Control Studies; D002648:Child; D002675:Child, Preschool; D006305:Health Status Indicators; D006801:Humans; D010290:Parents; D011788:Quality of Life; D011795:Surveys and Questionnaires
Med Care. 2001 Aug;39(8):800-12
11468499
Arthritis Rheum. 2002 Mar;46(3):714-25
11920407
Qual Life Res. 2006 Mar;15(2):203-15
16468077
Ned Tijdschr Geneeskd. 1999 Oct 9;143(41):2049-53
10560546
Diabetes Care. 2003 Mar;26(3):631-7
12610013
Qual Life Res. 2005 Mar;14(2):407-14
15892429
J Pediatr Hematol Oncol. 2004 Sep;26(9):574-8
15342984
Cancer. 2002 Apr 1;94(7):2090-106
11932914
Health Qual Life Outcomes. 2006 Sep 14;4:61
16972987
N Engl J Med. 1995 May 18;332(20):1317-22
7715639
Health Qual Life Outcomes. 2006 Oct 11;4:79
17034633
Dev Med Child Neurol. 2006 Jun;48(6):442-9
16700934
Pediatrics. 2003 Jun;111(6 Pt 1):1372-81
12777555
Qual Life Res. 2002 May;11(3):193-205
12074258
J Behav Med. 2002 Jun;25(3):269-83
12055777
J Behav Med. 2004 Jun;27(3):297-318
15259457
J Pediatr. 1996 Jun;128(6):820-8
8648542
Br J Haematol. 2005 Aug;130(3):437-44
16042695
N Engl J Med. 1996 Aug 8;335(6):369-76
8663884
J Child Psychol Psychiatry. 2001 Jul;42(5):661-7
11464970
Arch Phys Med Rehabil. 2005 Oct;86(10):1901-9
16213229
Ambul Pediatr. 2003 Nov-Dec;3(6):329-41
14616041