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Volumn 25, Issue 10, 2010, Pages 1188-1194

Health-related quality of life in boys with duchenne muscular dystrophy: Agreement between parents and their sons

Author keywords

Duchenne; muscular dystrophy; proxy reporting; quality of life; self report

Indexed keywords

STEROID;

EID: 77957989520     PISSN: 08830738     EISSN: 17088283     Source Type: Journal    
DOI: 10.1177/0883073809357624     Document Type: Article
Times cited : (53)

References (47)
  • 1
    • 0025998134 scopus 로고
    • Population frequencies of inherited neuromuscular diseases: A world survey
    • Emery A. Population frequencies of inherited neuromuscular diseases: a world survey. Neuromuscul Disord. 1991; 1: 19-29.
    • (1991) Neuromuscul Disord , vol.1 , pp. 19-29
    • Emery, A.1
  • 3
    • 0028824086 scopus 로고
    • The World Health Organization Quality of Life Assessment (WHOQOL): Position paper from the World Health Organization
    • Whoqolgroup
    • Whoqolgroup The World Health Organization Quality of Life Assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995; 41 (10). 1403-1409.
    • (1995) Soc Sci Med , vol.41 , Issue.10 , pp. 1403-1409
  • 4
    • 0034077568 scopus 로고    scopus 로고
    • Quality of life: An overview of the issues for use in occupational therapy outcome measurement
    • Liddle J., McKenna K. Quality of life: an overview of the issues for use in occupational therapy outcome measurement. Aust Occup Ther J. 2000; 47: 77-85.
    • (2000) Aust Occup Ther J , vol.47 , pp. 77-85
    • Liddle, J.1    McKenna, K.2
  • 5
    • 77649177592 scopus 로고    scopus 로고
    • Assessing Daily Quality of Life with the Experience Sampling Method
    • Katschnig H, Freeman H, Sartorius N, eds. West Sussex: John Wiley & Sons Ltd;
    • Barge-Schaapveld D., Nicolson N., Delespaul P., deVries MW Assessing daily quality of life with the experience sampling method. In: Katschnig H, Freeman H, Sartorius N, eds. Quality of Life in Mental Disorders. West Sussex: John Wiley & Sons Ltd; 2006: 91-101.
    • (2006) Quality of Life in Mental Disorders , pp. 91-101
    • Barge-Schaapveld, D.1    Nicolson, N.2    Delespaul, P.3    Devries, M.W.4
  • 6
    • 0001846744 scopus 로고    scopus 로고
    • Critical Issues and Needs in Health-related Quality of Life Assessment of Children and Adolescents with Chronic Health Conditions
    • Drotar D, ed. Mahwah, NJ: Lawrence Erlbaum Associates Inc;
    • Levi R., Drotar D. Critical issues and needs in health-related quality of life assessment of children and adolescents with chronic health conditions. In: Drotar D, ed. Measuring Health-related Quality of Life in Children and Adolescents: Implications for Research and Practice. Mahwah, NJ: Lawrence Erlbaum Associates Inc; 1998: 3-24.
    • (1998) Measuring Health-related Quality of Life in Children and Adolescents: Implications for Research and Practice , pp. 3-24
    • Levi, R.1    Drotar, D.2
  • 7
    • 0035432179 scopus 로고    scopus 로고
    • PedsQLg™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventoryg™ version 4.0 generic scales in healthy and patient populations
    • Varni JW, Seid M., Kurtin PS PedsQLg™ 4.0: reliability and validity of the Pediatric Quality of Life Inventoryg™ version 4.0 generic scales in healthy and patient populations. Med Care. 2001; 39 (8). 800-812.
    • (2001) Med Care , vol.39 , Issue.8 , pp. 800-812
    • Varni, J.W.1    Seid, M.2    Kurtin, P.S.3
  • 8
    • 33645022184 scopus 로고    scopus 로고
    • Paediatric quality of life instruments: A review of the impact of the conceptual framework on outcomes
    • Davis E., Waters E., Mackinnon A., et al. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol. 2006; 48: 311-318.
    • (2006) Dev Med Child Neurol , vol.48 , pp. 311-318
    • Davis, E.1    Waters, E.2    MacKinnon, A.3
  • 9
    • 22344455083 scopus 로고    scopus 로고
    • Evaluating health-related quality-of-life studies in paediatric populations: Some conceptual, methodological and developmental considerations and recent applications
    • De Civita M., Regier D., Alamgir AH, et al. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics. 2005; 23: 659-685.
    • (2005) Pharmacoeconomics , vol.23 , pp. 659-685
    • De Civita, M.1    Regier, D.2    Alamgir, A.H.3
  • 10
    • 47749143272 scopus 로고    scopus 로고
    • Health-related quality of life measurement in children and adolescents: A systematic review of generic and disease-specific instruments
    • Solans M., Pane S., Estrada M., et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health. 2008; 11: 742-764.
    • (2008) Value Health , vol.11 , pp. 742-764
    • Solans, M.1    Pane, S.2    Estrada, M.3
  • 11
    • 0442324864 scopus 로고    scopus 로고
    • Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues
    • Matza LS, Swensen AR, Flood EM, Secnik K., Leidy NK Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value Health. 2004; 7: 79-92.
    • (2004) Value Health , vol.7 , pp. 79-92
    • Matza, L.S.1    Swensen, A.R.2    Flood, E.M.3    Secnik, K.4    Leidy, N.K.5
  • 12
    • 34250827091 scopus 로고    scopus 로고
    • Self-reported quality of life of 8-12-year-old children with cerebral palsy: A cross-sectional
    • Dickinson HO, Parkinson KN, Ravens-Sieberer U., et al. Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. Lancet. 2007; 369: 2171-2178.
    • (2007) European Study. Lancet , vol.369 , pp. 2171-2178
    • Dickinson, H.O.1    Parkinson, K.N.2    Ravens-Sieberer, U.3
  • 13
    • 0035161833 scopus 로고    scopus 로고
    • Can parents rate their child's health-related quality of life? Results of a systematic review
    • 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.
    • (2001) Qual Life Res , vol.10 , pp. 347-357
    • Eiser, C.1    Morse, R.2
  • 14
    • 0033404589 scopus 로고    scopus 로고
    • Measuring quality of life in paediatric patients
    • Connolly MA, Johnson JA Measuring quality of life in paediatric patients. Pharmacoeconomics. 1999; 16: 605-625.
    • (1999) Pharmacoeconomics , vol.16 , pp. 605-625
    • Connolly, M.A.1    Johnson, J.A.2
  • 15
    • 33644871851 scopus 로고    scopus 로고
    • Assessment of agreement between parents and children on health related quality of life in children with cystic fibrosis
    • Havermans T., Vreys M., De Boeck C. Assessment of agreement between parents and children on health related quality of life in children with cystic fibrosis. Child Care Health Dev. 2006; 32: 1-7.
    • (2006) Child Care Health Dev , vol.32 , pp. 1-7
    • Havermans, T.1    Vreys, M.2    De Boeck, C.3
  • 16
    • 33644836013 scopus 로고    scopus 로고
    • Quality of life for children with functional abdominal pain: A comparison study of patients' and parents' perceptions
    • Youssef NN, Murphy TG, Langseder AL, Rosh JR Quality of life for children with functional abdominal pain: a comparison study of patients' and parents' perceptions. Pediatrics. 2006; 117: 54-59.
    • (2006) Pediatrics , vol.117 , pp. 54-59
    • Youssef, N.N.1    Murphy, T.G.2    Langseder, A.L.3    Rosh, J.R.4
  • 17
    • 33744951263 scopus 로고    scopus 로고
    • Agreement between parent and child report of quality of life in children with attention-deficit/ hyperactivity disorder
    • Klassen AF, Miller A., Fine S. Agreement between parent and child report of quality of life in children with attention-deficit/ hyperactivity disorder. Child Care Health Dev. 2006; 32: 397-406.
    • (2006) Child Care Health Dev , vol.32 , pp. 397-406
    • Klassen, A.F.1    Miller, A.2    Fine, S.3
  • 18
    • 16844369869 scopus 로고    scopus 로고
    • Association between intellectual functioning and age in children and young adults with Duchenne muscular dystrophy: Further results from a meta-analysis
    • Cotton S., Voudouris NJ, Geenwood KM Association between intellectual functioning and age in children and young adults with Duchenne muscular dystrophy: further results from a meta-analysis. Dev Med Child Neurol. 2005; 47: 257-265.
    • (2005) Dev Med Child Neurol , vol.47 , pp. 257-265
    • Cotton, S.1    Voudouris, N.J.2    Geenwood, K.M.3
  • 19
    • 1342282774 scopus 로고    scopus 로고
    • Specific cognitive deficits are common in children with Duchenne muscular dystrophy
    • Rikard KW, Margareta K., Lennart M., Orvar E. Specific cognitive deficits are common in children with Duchenne muscular dystrophy. Dev Med Child Neurol. 2004; 46: 154.
    • (2004) Dev Med Child Neurol , vol.46 , pp. 154
    • Rikard, K.W.1    Margareta, K.2    Lennart, M.3    Orvar, E.4
  • 20
    • 47049118101 scopus 로고    scopus 로고
    • Parental stress and quality of life in children with neuromuscular disease
    • Mah JK, Thannhauser JE, Kolski H., Dewey D. Parental stress and quality of life in children with neuromuscular disease. Pediatr Neurol. 2008; 39: 102-107.
    • (2008) Pediatr Neurol , vol.39 , pp. 102-107
    • Mah, J.K.1    Thannhauser, J.E.2    Kolski, H.3    Dewey, D.4
  • 21
    • 0036726945 scopus 로고    scopus 로고
    • Physical capacity in non-ambulatory people with Duchenne muscular dystrophy or spinal muscular atrophy: A longitudinal study
    • Steffensen BF, Lyager S., Werge B., Rahbek J., Mattsson E. Physical capacity in non-ambulatory people with Duchenne muscular dystrophy or spinal muscular atrophy: a longitudinal study. Dev Med Child Neurol. 2002; 44: 623-632.
    • (2002) Dev Med Child Neurol , vol.44 , pp. 623-632
    • Steffensen, B.F.1    Lyager, S.2    Werge, B.3    Rahbek, J.4    Mattsson, E.5
  • 22
    • 33749264062 scopus 로고    scopus 로고
    • My son is still walking: Stages of receptivity to discussions of advance care planning among patients of sons with Duchenne muscular dystrophy
    • Erby LH, Rushtin C., Geller G. My son is still walking: stages of receptivity to discussions of advance care planning among patients of sons with Duchenne muscular dystrophy. Semin Pediatr Neurol. 2006; 13: 132-140.
    • (2006) Semin Pediatr Neurol , vol.13 , pp. 132-140
    • Erby, L.H.1    Rushtin, C.2    Geller, G.3
  • 24
    • 38949092529 scopus 로고    scopus 로고
    • Deflazacort use in Duchenne muscular dystrophy: An 8-year follow-up
    • Houde S., Filiatrault M., Fournier A., et al. Deflazacort use in Duchenne muscular dystrophy: an 8-year follow-up. Pediatr Neurol. 2008; 38: 200-206.
    • (2008) Pediatr Neurol , vol.38 , pp. 200-206
    • Houde, S.1    Filiatrault, M.2    Fournier, A.3
  • 26
    • 34347335503 scopus 로고    scopus 로고
    • Living with muscular dystrophy: Health related quality of life consequences for children and adults
    • Available at:
    • Grootenhuis MA, de Boone J., van der Kooi A. Living with muscular dystrophy: health related quality of life consequences for children and adults. Health Qual Life Outcomes. 2007; 5: 31. Available at: http://www.hqlo.com/ content/5/1/31. Accessed July 1, 2009.
    • (2007) Health Qual Life Outcomes. , vol.5 , pp. 31
    • Grootenhuis, M.A.1    De Boone, J.2    Van Der Kooi, A.3
  • 29
    • 0033073557 scopus 로고    scopus 로고
    • The PedsQL: Measurement model for pediatric quality of life inventory
    • Varni J., Seid M. The PedsQL: measurement model for pediatric quality of life inventory. Med Care. 1999; 37: 126-139.
    • (1999) Med Care , vol.37 , pp. 126-139
    • Varni, J.1    Seid, M.2
  • 30
    • 0348161127 scopus 로고    scopus 로고
    • The PedsQLg™ 4.0 as a pediatric population health measure: Feasibility, reliability, and validity
    • Varni JW, Burwinkle TM, Seid M., Skarr D. The PedsQLg™ 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003; 3: 329-341.
    • (2003) Ambul Pediatr , vol.3 , pp. 329-341
    • Varni, J.W.1    Burwinkle, T.M.2    Seid, M.3    Skarr, D.4
  • 31
    • 0036549713 scopus 로고    scopus 로고
    • The PedsQLg™ 4.0 generic core scales: Sensitivity, responsiveness, and impact on clinical decision-making
    • Varni JW, Seid M., Knight TS, et al. The PedsQLg™ 4.0 generic core scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med. 2002; 25: 175-193.
    • (2002) J Behav Med , vol.25 , pp. 175-193
    • Varni, J.W.1    Seid, M.2    Knight, T.S.3
  • 32
    • 34548523100 scopus 로고    scopus 로고
    • Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQLg™ 4.0 generic core scales
    • Available at:
    • Varni JW, Limbers CA, Burwinkle TM Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQLg™ 4.0 generic core scales. Health Qual Life Outcome. 2007; 5: 43. Available at: http://www.hqlo.com/content/5/1/43. Accessed July 1, 2009.
    • (2007) Health Qual Life Outcome. , vol.5 , pp. 43
    • Varni, J.W.1    Limbers, C.A.2    Burwinkle, T.M.3
  • 33
    • 0030769939 scopus 로고    scopus 로고
    • Children's quality of life measures
    • Eiser C. Children's quality of life measures. Arch Dis Child. 1997; 77: 350-354.
    • (1997) Arch Dis Child , vol.77 , pp. 350-354
    • Eiser, C.1
  • 34
    • 73649200203 scopus 로고
    • Management of progressive muscular dystrophy in childhood
    • Vignos PJ, Spencer GE, Archibald KC Management of progressive muscular dystrophy in childhood. JAMA. 1963; 184: 89-96.
    • (1963) JAMA , vol.184 , pp. 89-96
    • Vignos, P.J.1    Spencer, G.E.2    Archibald, K.C.3
  • 35
    • 12644289286 scopus 로고    scopus 로고
    • Evaluation of a program for long-term treatment of Duchenne muscular dystrophy: Experience at the University Hospitals of Cleveland
    • Vignos PJ, Wagner MB, Karlinchak B., Katirji B. Evaluation of a program for long-term treatment of Duchenne muscular dystrophy: experience at the University Hospitals of Cleveland. J Bone Joint Surg. 1996; 78: 1844-1852.
    • (1996) J Bone Joint Surg , vol.78 , pp. 1844-1852
    • Vignos, P.J.1    Wagner, M.B.2    Karlinchak, B.3    Katirji, B.4
  • 37
    • 48449093719 scopus 로고    scopus 로고
    • Parent-child agreement across child health-related quality of life instruments: A review of the literature
    • 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: 895-913.
    • (2008) Qual Life Res , vol.17 , pp. 895-913
    • Upton, P.1    Lawford, J.2    Eiser, C.3
  • 39
    • 4344588135 scopus 로고    scopus 로고
    • Report on the 124th ENMC International Workshop. Treatment of Duchenne muscular dystrophy: Defining the gold standards of management in the use of corticosteroids
    • Bushby K., Muntoni F., Urtizberea A., et al. Report on the 124th ENMC International Workshop. Treatment of Duchenne muscular dystrophy: defining the gold standards of management in the use of corticosteroids. Neuromuscul Disord. 2004; 14: 526-534.
    • (2004) Neuromuscul Disord , vol.14 , pp. 526-534
    • Bushby, K.1    Muntoni, F.2    Urtizberea, A.3
  • 43
    • 38849098513 scopus 로고    scopus 로고
    • Children's quality of life: Separating the person from the disorder
    • Rosenbaum P. Children's quality of life: separating the person from the disorder. Arch Dis Child. 2008; 93: 100-101.
    • (2008) Arch Dis Child , vol.93 , pp. 100-101
    • Rosenbaum, P.1
  • 44
    • 0141715205 scopus 로고    scopus 로고
    • Diary methods: Capturing life as it is lived
    • Bolger N., Davis A., Rafaeli E. Diary methods: capturing life as it is lived. Annu Rev Psychol. 2003; 54: 579-616.
    • (2003) Annu Rev Psychol , vol.54 , pp. 579-616
    • Bolger, N.1    Davis, A.2    Rafaeli, E.3
  • 45
    • 77649150200 scopus 로고    scopus 로고
    • Feasibility of a computerized method to measure quality of 'everyday' life in children with neuromuscular disorders
    • Bray P., Bundy AB, Ryan MM, North KN Feasibility of a computerized method to measure quality of 'everyday' life in children with neuromuscular disorders. Phys Occup Ther Pediatr. In press.
    • Phys Occup Ther Pediatr
    • Bray, P.1    Bundy, A.B.2    Ryan, M.M.3    North, K.N.4


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