Measurement of health-related quality of life in children undergoing external fixator treatment for lower limb deformities

Journal of Pediatric Orthopaedics

Volumn 29, Issue 8, 2009, Pages 920-926

  Montpetit, Kathleen ^a   Hamdy, Reggie C ^b   Dahan Oliel, Noémi ^a   Zhang, Xun ^c   Narayanan, Unni G ^d  

^a SHRINERS HOSPITAL FOR CHILDREN   (Canada)

^b MONTREAL CHILDREN S HOSPITAL   (Canada)

^c RESEARCH INSTITUTE OF THE MCGILL UNIVERSITY HEALTH CENTRE   (Canada)

^d HOSPITAL FOR SICK CHILDREN   (Canada)

Author keywords

External fixators; Health status indicators; Lower limb deformities; Quality of life; Treatment outcome

Indexed keywords

BOTULINUM TOXIN A;

ADOLESCENT; ADOLESCENT PEDIATRIC PAIN TOOL; ARTICLE; CHILD; CLINICAL TRIAL; CLUBFOOT; CONSTRUCT VALIDITY; CONTROLLED CLINICAL TRIAL; CONTROLLED STUDY; DRUG EFFICACY; DRUG SAFETY; FEMALE; FRACTURE EXTERNAL FIXATION; FUNCTIONAL ASSESSMENT; GILLETTE FUNCTIONAL ASSESSMENT QUESTIONNAIRE; HEALTH STATUS; HUMAN; INJECTION; LEG LENGTH INEQUALITY; LIMB MALFORMATION; MAJOR CLINICAL STUDY; MALE; ORTHOPEDIC SURGERY; OUTCOME ASSESSMENT; PAIN ASSESSMENT; PARENT; PEDIATRIC QUALITY OF LIFE INVENTORY; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; RANDOMIZED CONTROLLED TRIAL; RATING SCALE; SCORING SYSTEM; TREATMENT OUTCOME; VISUAL ANALOG SCALE;

ADOLESCENT; BONE LENGTHENING; BOTULINUM TOXIN TYPE A; CHILD; CHILD, PRESCHOOL; EXTERNAL FIXATORS; HEALTH STATUS INDICATORS; HUMANS; LEG LENGTH INEQUALITY; NEUROMUSCULAR AGENTS; OUTCOME ASSESSMENT (HEALTH CARE); QUALITY OF LIFE; REPRODUCIBILITY OF RESULTS; YOUNG ADULT;

EID: 74249114579     PISSN: 02716798     EISSN: None     Source Type: Journal    
DOI: 10.1097/BPO.0b013e3181c1e2e2     Document Type: Article

References (46)

1. Ramaker RR, Lagro SW, van Roermund PM, et al. The psychological and social functioning of 14 children and 12 adolescents after Ilizarov leg lengthening. Acta Orthop Scan. 2000;71:55-89.
2. Kaufman K, Miller L, Sutherland D. Gait asymmetry in patients with limb-length inequality. J Pediatr Orthop. 1996;16:144-150.
3. Song KM, Halliday SE, Little DG. The effect of limb-length discrepancy on gait. J Bone Joint Surg Am. 1997;79:1690-1698.
4. Ghoneem HF, Wright JG, Cole WG, et al. The Ilizarov method for correction of complex deformities. Psychological and functional outcomes. J Bone Joint Surg Am. 1996;78:1480-1485.
5. McCarthy J, MacEwen G. Management of leg length inequality. J South Orthop Assoc. 2001;10:73-85.
6. Moseley CF. Leg-length discrepancy. In: Morrissey RT, Weinstein SL, eds. Lovell and Winter's Pediatric Orthopaedics. 6th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2006:1214-1251.
7. Paley D. Current techniques of limb lengthening. J Pediatr Orthop. 1988;8:73-92.
8. Hamdy R, Fassier F, Lachapelle D, et al. The use of the Ilizarov method in children for limb lengthening. Medscape Orthop Sports Med. 1998;2:1-17.
9. McCarthy JJ, Glancy GL, Chang FM et al. Fibular hemimelia: comparison of outcome measurements after amputation and lengthening. J Bone Joint Surg Am. 2000;82:1732-1735.
10. Martin L, Farrell M, Lambrenos K, et al. Living with the Ilizarov frame: adolescent perceptions. J Adv Nurs. 2003;43:478-487.
11. Saran N, Hamdy R. DEXA as a predictor of fixator removal in distraction osteogenesis. Clin Orthop Rel Res. 2008;466:2955-2961.
12. Eyres KS, Bell MJ, Kanis JA. Methods of assessing new bone formation during limb lengthening. Ultrasonography, dual energy X-ray absorptiometry and radiography compared. J Bone Joint Surg Br. 1993;75:358-364.
13. Maffulli N, Cheng JC, Sher A, et al. Dual-energy X-ray absorptiometry predicts bone formation in lower limb callotasis lengthening. Ann R Coll Surg Engl. 1997;79:250-256.
14. Starr KA, Fillman R, Raney EM. Reliability of radiographic assessment of distraction osteogenesis site. J Pediatr Orthop B. 2004;24:26-29.
15. Tjernstrom B, Thoumas KA, Pech P. Bone remodeling after leg lengthening: evaluation with plain radiographs, and computed tomography and magnetic resonance imaging scans. J Pediatr Orthop. 1992;12:751-755.
16. Bond J, Kent GG, Binney VA, et al. Psychological adjustment of children awaiting limb reconstruction treatment. Child Care Health Dev. 1999;25:313-321.
17. WHOQOL Group. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995;41:1403-1409.
18. Ravens-Sieberer U, Erhart M, Wille N, et al. Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. Pharmacoeconomics. 2006;24:1199-1220.
19. Liptak GS, O'Donnell M, Conaway M, et al. Health status of children with moderate to severe cerebral palsy. Dev Med Child Neurol. 2001;43:364-370.
20. Varni JW, Limbers CA, Burwinkle TM. Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQLt 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5.
21. Connolly MA, Johnson JA. Measuring quality of life in paediatric patients. Pharmacoeconomics. 1999;16:605-625.
22. Cremeens J, Eiser C, Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventoryt 4.0 (PedsQLt) generic core scales. Health Qual Life Outcomes. 2006;4.
23. Jozefiak T, Larsson B, Wichstrøm L, et al. Quality of Life as reported by school children and their parents: a cross-sectional survey. Health Qual Life Outcomes. 2008;6.
24. Eiser C, Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res. 2001; 10:347-357.
25. Vitale M, Choe J, Sesko A, et al. The effect of limb length discrepancy on health-related quality of life: is the "2 cm rule" appropriate? J Pediatr Orthop B. 2006;15:1-5.
26. Clarke S-A, Eiser C. The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review. Health Qual Life Outcomes. 2004;2:66.
27. Kazis LE, Anderson JJ, Meenan RF. Effect Sizes for Interpreting Changes in Health Status. Med Care. 1989;27:S178-S189.
28. Streiner DL, Norman GR. Health Measurement Scales. A Practical Guide to Their Development and Use. New York, NY: Oxford University Press; 1989.
29. Savedra M, Tesler M, Holzemer W, et al. Adolescent Pediatric Pain Tool (APPT) Preliminary User's Manual. San Francisco, CA: University of California, San Francisco, School of Nursing; 1989.
30. Novacheck T, Stout J, Tervo R. Reliability and validity of the Gillette functional assessment questionnaire as an outcome measure in children with walking disabilities. J Pediatr Orthop. 2000;20:75-81.
31. Varni JW, Seid M, Kurtin PS. PedsQLt 4.0: reliability and validity of the Pediatric Quality of Life Inventoryt Version 4.0 Generic Core Scales in Healthy and Patient Populations. Med Care. 2001;39: 800-812.
32. Varni J, Burwinkle T, Seid M, et al. The PedsQL4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambul Pediatr. 2003;3:329-341.
33. Varni JW, Seid M, Smith Knight T, et al. The PedsQLt 4.0 Generic Core Scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med. 2002;25:175-193.
34. Varni JW, Burwinkle TM, Rapoff MA, et al. The PedsQLt in Pediatric Asthma: Reliability and Validity of the Pediatric Quality of Life Inventoryt Generic Core Scales and Asthma Module. J Behav Med. 2004;27:297-318.
35. Varni JW, Seid M, Smith Knight T, et al. The PedsQLt in pediatric rheumatology. Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventoryt Generic Core Scales and Rheumatology Module. Arthritis Rheum. 2002;46:714-725.
36. Terwee C, Dekker FW, Wiersinga WM, et al. On assessing responsiveness of health-related quality of life instruments: guidelines for instrument evaluation. Qual Life Res. 2003;12:349-362.
37. Cohen J. Statistical Power Analysis for the Behavioral Sciences. 2nd ed. Hillsdale, NJ: Lawrence Erlbaum Associates; 1988.
38. Husted J, Cook RJ, Farewell VT, et al. Methods for assessing responsiveness: a critical review and recommendations. J Clin Epidemiol. 2000;53:459-468.
39. Beaton DE, Hogg-Johnson S, Bombardier C. Evaluating changes in health status: reliability and responsiveness of five generic health status measures in workers with musculoskeletal disorders. J Clin Epidemiol. 1997;50:79-93.
40. Gofton J. Persistent low back pain and leg length disparity. J Rheumatol. 1985;12:747-750.
41. Grundy P, Roberts C. Does unequal leg length cause back pain? Lancet. 1984;2:256-258.
42. Young N, Bell DF, Anthony A. Pediatric pain patterns during Ilizarov treatment of limb discrepancy and angular deformity. J Pediatr Orthop. 1994;14:394-412.
43. Paley D. Problems, obstacles, and complications of limb lengthening by the Ilizarov technique. Clin Orthop Rel Res. 1990;250: 81-104.
44. Morton AA. Psychological considerations in the planning of staged reconstruction of limb deficiencies. In: Herring JA, Birch JG, eds. The Child With a Limb Deficiency. Rosemont, IL: American Academy of Orthopaedic Surgeons; 1998:195-204.
45. Varni JW, Setoguchi Y. Screening for behavioral and emotional problems in children and adolescents with congenital or acquired limb deficiencies. Am J Dis Child. 1992;146:103-107.
46. Wiebe S, Guyatt G, Weaver B, et al. Comparative responsiveness of generic and specific quality-of-life instruments. J Clin Epidemiol. 2003;56:52-60.