A psychometric evaluation of the PedsQL™ Family Impact Module in parents of children with sickle cell disease

Health and Quality of Life Outcomes

Volumn 7, Issue , 2009, Pages

  Panepinto, Julie A ^a,b   Hoffmann, Raymond G ^a,b   Pajewski, Nicholas M ^c  

^a Medical College of Wisconsin ^*  (United States)

^b MEDICAL COLLEGE OF WISCONSIN   (United States)

^c UNIVERSITY OF ALABAMA AT BIRMINGHAM   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; CHILD PARENT RELATION; CLINICAL ASSESSMENT TOOL; COGNITION; CONSTRUCT VALIDITY; CONTROLLED STUDY; DAILY LIFE ACTIVITY; EMOTIONAL STABILITY; FAMILY ATTITUDE; FAMILY FUNCTIONING; FAMILY RELATION; FEMALE; HUMAN; INTERPERSONAL COMMUNICATION; MALE; PHYSICAL CAPACITY; PSYCHOMETRY; QUALITY OF LIFE; RELIABILITY; SICKLE CELL ANEMIA; SOCIAL STATUS; URBAN AREA; CROSS-SECTIONAL STUDY; HEALTH STATUS; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; STANDARD; VALIDATION STUDY;

ADOLESCENT; ADULT; ANEMIA, SICKLE CELL; CHILD; CHILD, PRESCHOOL; CROSS-SECTIONAL STUDIES; FEMALE; HEALTH STATUS; HUMANS; MALE; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES;

EID: 65549142823     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/1477-7525-7-32     Document Type: Article

References (29)

1. Lawoko S Soares JJ Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children Qual Life Res 2003, 12:655-666. 10.1023/ A:1025114331419 14516175
2. Sales E Family burden and quality of life Qual Life Res 2003, 12(Suppl 1):33-41. 10.1023/A:1023513218433 12803309
3. Helgeson VS Social support and quality of life Qual Life Res 2003 12 Suppl 1 25 31 10.1023/A:1023509117524 12803308
4. Moskowitz JT Butensky E Harmatz P et al. Caregiving time in sickle cell disease: Psychological effects in maternal caregivers Pediatr Blood Cancer 2007, 48:64-71. 10.1002/pbc.20792 16622841
5. Campo JV Comer DM Jansen-Mcwilliams L Gardner W Kelleher KJ Recurrent pain, emotional distress, and health service use in childhood J Pediatr 2002, 141:76-83. 10.1067/mpd.2002.125491 12091855
6. Janicke DM Finney JW Riley AW Children's health care use: A prospective investigation of factors related to care-seeking Med Care 2001, 39:990-1001. 10.1097/00005650-200109000-00009 11502956
7. Brandow AM Brousseau DC Panepinto JA Postdischarge pain, functional limitations and impact on caregivers of children with sickle cell disease treated for painful events Br J Haematol 2009, 144(5):782-8. 10.1111/j.1365-2141.2008.07512.x 19055663
8. Panepinto JA Brousseau DC Hillery CA Scott JP Variation in hospitalizations and hospital length of stay in children with vaso-occlusive crises in sickle cell disease Pediatr Blood Cancer 2005, 44:182-186. 10.1002/pbc.20180 15390359
9. Swift AV Cohen MJ Hynd GW et al. Neuropsychologic impairment in children with sickle cell anemia Pediatrics 1989, 84:1077-1085. 2587138
10. Schatz J Brown RT Pascual JM Hsu L DeBaun MR Poor school and cognitive functioning with silent cerebral infarcts and sickle cell disease Neurology 2001, 56:1109-1111. 11320190
11. Cremeens J Eiser C Blades M Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales Health Qual Life Outcomes 2006, 4:58. 1564004 16942613 10.1186/1477-7525-4-58
12. Panepinto JA O'Mahar KM DeBaun MR Rennie KM Scott JP Validity of the child health questionnaire for use in children with sickle cell disease J Pediatr Hematol Oncol 2004, 26:574-578. 10.1097/ 01.mph.0000136453.93704.2e 15342984
13. Panepinto JA Pajewski NM Foerster LM Hoffmann RG The performance of the PedsQL generic core scales in children with sickle cell disease J Pediatr Hematol Oncol 2008, 30:666-673. 10.1097/MPH.0b013e31817e4a44 18776758
14. Charache S Terrin ML Moore RD et al. Effect of hydroxyurea on the frequency of painful crises in sickle cell anemia. Investigators of the Multicenter Study of Hydroxyurea in Sickle Cell Anemia N Engl J Med 1995, 332:1317-1322. 10.1056/NEJM199505183322001 7715639
15. Scott JP Hillery CA Brown ER Misiewicz V Labotka RJ Hydroxyurea therapy in children severely affected with sickle cell disease J Pediatr 1996, 128:820-828. 10.1016/S0022-3476(96)70335-9 8648542
16. Walters MC Patience M Leisenring W et al. Bone marrow transplantation for sickle cell disease N Engl J Med 1996, 335:369-376. 10.1056/ NEJM199608083350601 8663884
17. Varni JW Sherman SA Burwinkle TM Dickinson PE Dixon P The PedsQL Family Impact Module: Preliminary reliability and validity Health Qual Life Outcomes 2004, 2:55. 521692 15450120 10.1186/1477-7525-2-55
18. Scarpelli AC Paiva SM Pordeus IA Varni JW Viegas CM Allison PJ The pediatric quality of life inventory (PedsQL) family impact module: reliability and validity of the Brazilian version Health Qual Life Outcomes 2008, 6:35. 2412859 18492262 10.1186/1477-7525-6-35
19. Varni J The PedsQL™ 4.0 Measurement Model for the Pediatric Quality of Life Inventory™ Version 4.0: Administration Guidelines 2004. http://www.pedsql.org/pedsqladmin.html
20. Varni JW The PedsQL™ Scoring Algorithm: Scoring the Pediatric Quality of Life Inventory™ 2007:2007. http://pedsql.org/score.html
21. Cohen LaH M Statistics for social scientists London: Harper and Row 1982.
22. Varni JW Burwinkle TM Seid M The PedsQL 4.0 as a school population health measure: Feasibility, reliability, and validity Qual Life Res 2006, 15:203-215. 10.1007/s11136-005-1388-z 16468077
23. Raat H Landgraf JM Oostenbrink R Moll HA Essink-Bot ML Reliability and validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) in a general population and respiratory disease sample Qual Life Res 2007, 16:445-460. 10.1007/s11136-006-9134-8 17111231
24. Varni JW Burwinkle TM Seid M Skarr D The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity Ambul Pediatr 2003, 3:329-341. 10.1367/ 1539-4409(2003)003<0329:TPAAPP>2.0.CO;2 14616041
25. Panepinto JA Pajewski NM Foerster LM Sabnis S Hoffmann RG Impact of family income and sickle cell disease on the health-related quality of life of children Qual Life Res 2009, 18:1-5. 13 Epub 2008 Nov 7 10.1007/ s11136-008-9412-8 18989755
26. Tweel van den XW Hatzmann J Ensink E et al. Quality of life of female caregivers of children with sickle cell disease: A survey Haematologica 2008, 93:588-593. 10.3324/haematol.11610 18322259
27. Mansour ME Kotagal U Rose B et al. Health-related quality of life in urban elementary schoolchildren Pediatrics 2003, 111:1372-1381. 10.1542/ peds.111.6.1372 12777555
28. Price MR Bratton DL Klinnert MD Caregiver negative affect is a primary determinant of caregiver report of pediatric asthma quality of life Ann Allergy Asthma Immunol 2002, 89:572-577. 12487222
29. Spilker B Quality of Life and Pharmacoeconomics in Clinical Trials Lippincott Williams and Wilkins 1996.