Reliability and validity of the Chinese version of the pediatric quality of life inventoryTM (PedsQLTM) 3.0 neuromuscular module in children with Duchenne muscular dystrophy

Health and Quality of Life Outcomes

Volumn 11, Issue 1, 2013, Pages

  Hu, Jun ^a   Jiang, Li ^a   Hong, Siqi ^a   Cheng, Li ^a   Kong, Min ^a   Ye, Yuanzhen ^a  

^a CHONGQING MEDICAL UNIVERSITY   (China)

Author keywords

Chinese version; Duchenne muscular dystrophy; Neuromuscular module; Pediatric quality of life inventoryTM; Reliability; Validity

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; CHINESE; CLINICAL ARTICLE; CORRELATION COEFFICIENT; DUCHENNE MUSCULAR DYSTROPHY; FEMALE; HUMAN; INTERNAL CONSISTENCY; MALE; PRESCHOOL CHILD; PSYCHOMETRY; QUALITY OF LIFE INDEX; SCHOOL CHILD; SELF REPORT; TEST RETEST RELIABILITY; VALIDITY;

ADOLESCENT; CHILD; CHILD, PRESCHOOL; HUMANS; MALE; MUSCULAR DYSTROPHY, DUCHENNE; PARENTS; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS; TRANSLATING;

EID: 84874939748     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/1477-7525-11-47     Document Type: Article

References (46)

1. Emery AE. Population frequencies of inherited neuromuscular diseases-a world survey. Neuromuscul Disord 1991, 1(1):19-29. 10.1016/0960-8966(91)90039-U, 1822774.
2. Kunkel LM, Hejtmancik JF, Caskey CT, Speer A, Monaco AP, Middlesworth W, Colletti CA, Bertelson C, Müller U, Bresnan M. Analysis of deletions in DNA from patients with becker and duchenne muscular dystrophy. Nature 1986, 322(6074):73-77. 10.1038/322073a0, 3014348.
3. Chakkalakal JV, Thompson J, Parks RJ, Jasmin BJ. Molecular, cellular, and pharmacological therapies for duchenne/becker muscular dystrophies. FASEB J 2005, 19(8):880-891. 10.1096/fj.04-1956rev, 15923398.
4. Moxley RT, Ashwal S, Pandya S, Connolly A, Florence J, Mathews K, Baumbach L, McDonald C, Sussman M, Wade C. Practice parameter: corticosteroid treatment of duchenne dystrophy: report of the quality standards subcommittee of the American academy of neurology and the practice committee of the child neurology society. Neurology 2005, 64(1):13-20. 10.1212/01.WNL.0000148485.00049.B7, 15642897.
5. Manzur AY, Kuntzer T, Pike M, Swan A. Glucocorticoid corticosteroids for duchenne muscular dystrophy. Cochrane Database Syst Rev 2008, 1:CD003725.
6. Bushby K, Finkel R, Birnkrant DJ, Case LE, Clemens PR, Cripe L, Kaul A, Kinnett K, McDonald C, Pandya S. Diagnosis and management of duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management. Lancet Neurol 2010, 9(1):77-93. 10.1016/S1474-4422(09)70271-6, 19945913.
7. Bushby K, Finkel R, Birnkrant DJ, Case LE, Clemens PR, Cripe L, Kaul A, Kinnett K, McDonald C, Pandya S. Diagnosis and management of duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. Lancet Neurol 2010, 9(2):177-189. 10.1016/S1474-4422(09)70272-8, 19945914.
8. Moxley RT, Pandya S, Ciafaloni E, Fox DJ, Campbell K. Change in natural history of duchenne muscular dystrophy with long-term corticosteroid treatment: implications for management. J Child Neurol 2010, 25(9):1116-1129. 10.1177/0883073810371004, 20581335.
9. Young HK, Lowe A, Fitzgerald DA, Seton C, Waters KA, Kenny E, Hynan LS, Iannaccone ST, North KN, Ryan MM. Outcome of noninvasive ventilation in children with neuromuscular disease. Neurology 2007, 68(3):198-201. 10.1212/01.wnl.0000251299.54608.13, 17224573.
10. Mah JK, Thannhauser JE, Kolski H, Dewey D. Parental stress and quality of life in children with neuromuscular disease. Pediatr Neurol 2008, 39(2):102-107. 10.1016/j.pediatrneurol.2008.04.011, 18639753.
11. Iannaccone ST, Hynan LS, Morton A, Buchanan R, Limbers CA, Varni JW, . AmSMART Group The PedsQL™ in pediatric patients with spinal muscular atrophy: feasibility, reliability, and validity of the pediatric quality of life inventory™ generic core scales and neuromuscular module. Neuromuscul Disord 2009, 19(12):805-812. 10.1016/j.nmd.2009.09.009, 2796341, 19846309, AmSMART Group.
12. Davis SE, Hynan LS, Limbers CA, Andersen CM, Greene MC, Varni JW, Iannaccone ST. The PedsQL™ in pediatric patients with duchenne muscular dystrophy: feasibility, reliability, and validity of the pediatric quality of life inventory™ neuromuscular module and generic core scales. J Clin Neuromuscul Dis 2010, 11(3):97-109. 10.1097/CND.0b013e3181c5053b, 20215981.
13. Felder-Puig R, Frey E, Proksch K, Varni JW, Gadner H, Topf R. Validation of the German version of the pediatric quality of life inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy. Qual Life Res 2004, 13(1):223-234.
14. Sprangers MA, Cull A, Bjordal K, Groenvold M, Aaronson NK. The European organization for research and treatment of cancer. Approach to quality of life assessment: guidelines for developing questionnaire modules. EORTC study group on quality of life. Qual Life Res 1993, 2(4):287-295. 10.1007/BF00434800, 8220363.
15. Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life. Med Care 1989, 27(3 Suppl):S217-S232.
16. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL in pediatric cancer: reliability and validity of the pediatric quality of life inventory generic core scales, multidimensional fatigue scale, and cancer module. Cancer 2002, 94(7):2090-2106. 10.1002/cncr.10428, 11932914.
17. Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman F, Jones KL. The PedsQL in type 1 and type 2 diabetes: reliability and validity of the pediatric quality of life inventory generic core scales and type 1 diabetes module. Diabetes Care 2003, 26(3):631-637. 10.2337/diacare.26.3.631, 12610013.
18. Varni JW, Burwinkle TM, Rapoff MA, Kamps JL, Olson N. The PedsQL in pediatric asthma: reliability and validity of the pediatric quality of life inventory generic core scales and asthma module. J Behav Med 2004, 27(3):297-318.
19. Varni JW, Burwinkle TM, Berrin SJ, Sherman SA, Artavia K, Malcarne VL, Chambers HG. The PedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the generic core scales and cerebral palsy module. Dev Med Child Neurol 2006, 48(6):442-449. 10.1017/S001216220600096X, 16700934.
20. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999, 37(2):126-139. 10.1097/00005650-199902000-00003, 10024117.
21. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001, 5(4):1-157.
22. Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001, 39(8):800-812. 10.1097/00005650-200108000-00006, 11468499.
23. Varni JW, Limbers CA. The pediatric quality of life inventory: measuring pediatric health-related quality of life from the perspective of children and their parents. Pediatr Clin North Am 2009, 56(4):843-863. 10.1016/j.pcl.2009.05.016, 19660631.
24. Hao Y, Tian Q, Lu Y, Chai Y, Rao S. Psychometric properties of the Chinese version of the pediatric quality of life inventory 4.0 Generic core scales. Qual Life Res 2010, 19(8):1229-1233. 10.1007/s11136-010-9672-y, 20473781.
25. Florence JM, Pandya S, King WM, Robison JD, Signore LC, Wentzell M, Province MA. Clinical trials in duchenne dystrophy. Standardization and reliability of evaluation procedures. Phys Ther 1984, 64(1):41-45.
26. Scaling and scoring of the Pediatric Quality of Life InventoryTM PedsQL (Updated version) http://www.pedsql.org.
27. PedsQL™ translation methodology http://www.pedsql.org.
28. McHorney CA, Ware JE, Lu JF, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care 1994, 32(1):40-66. 10.1097/00005650-199401000-00004, 8277801.
29. Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika 1951, 16(3):297-334.
30. Pedhazur EJ, Schmelkin LP. Measurement, design, and analysis: an integrated approach 1991, Hillsdale, NJ: Erlbaum.
31. Nunnally JC, Bernstein IH. Psychometric Theory 1994, New York: McGraw-Hill, 3.
32. Bartko JJ. The intraclass correlation coefficient as a measure of reliability. Psychol Rep 1966, 19(1):3-11. 10.2466/pr0.1966.19.1.3, 5942109.
33. Fayers PM, Machin D. Quality of life: assessment, analysis and interpretation 2000, New York: Wiley.
34. Wilson KA, Dowling AJ, Abdolell M, Tannock IF. Perception of quality of life by patients, partners and treating physicians. Qual Life Res 2000, 9(9):1041-1052. 10.1023/A:1016647407161, 11332225.
35. Faul F, Erdfelder E, Lang AG, Buchner A. G*Power 3: a flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behav Res Methods 2007, 39(2):175-191. 10.3758/BF03193146, 17695343.
36. Fayers PM, Hand DJ. Factor analysis, causal indicators and quality of life. Qual Life Res 1997, 6(2):139-150.
37. Cohen J. Statistical Power Analysis for the Behavioral Sciences 1988, 2. Hillsdale, NJ: Erlbaum.
38. McGraw KO, Wong SP. Forming inferences about some intraclass correlation coefficients. Psychol Meth 1996, 1(1):30-46.
39. 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. 10.1186/1477-7525-4-58, 1564004, 16942613.
40. Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the pediatric quality of life inventory generic core scales and rheumatology module. Arthritis Rheum 2002, 46(3):714-725. 10.1002/art.10095, 11920407.
41. Novick M, Lewis G. Coefficient alpha and the reliability of composite measurements. Psychometrika 1967, 32(1):1-13. 10.1007/BF02289400, 5232569.
42. Sprangers MA, Aaronson NK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol 1992, 45(7):743-760. 10.1016/0895-4356(92)90052-O, 1619454.
43. Achenbach TM, McConaughy SH, Howell CT. Child/adolescent behavioral and emotional problems: implications of cross-informant correlations for situational specificity. Psychol Bull 1987, 101(2):213-232.
44. Upton P, Lawford J, Eiser C. Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res 2008, 17(6):895-913. 10.1007/s11136-008-9350-5, 18521721.
45. Eiser C, Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001, 10(4):347-357. 10.1023/A:1012253723272, 11763247.
46. Tabachnick BG, Fidell LS. Using Multivariate Analysis 2001, 4. Boston, MA: Allyn and Bacon.