메뉴 건너뛰기




Volumn 47, Issue 8, 2011, Pages 557-562

Health status of boys with Duchenne muscular dystrophy: A parent's perspective

Author keywords

Duchenne muscular dystrophy; health status measurement; health related quality of life; parent; proxy rater

Indexed keywords

ADOLESCENT; ADULT; CHILD; CHILD HEALTH QUESTIONNAIRE; COMPARATIVE STUDY; DISEASE COURSE; DUCHENNE MUSCULAR DYSTROPHY; FOLLOW UP; HEALTH STATUS; HEREDITARY MOTOR SENSORY NEUROPATHY; HUMAN; MAJOR CLINICAL STUDY; MALE; NAMED INVENTORIES, QUESTIONNAIRES AND RATING SCALES; PRESCHOOL CHILD; PRIORITY JOURNAL; REVIEW; SCHOOL CHILD; SCORING SYSTEM;

EID: 80051872238     PISSN: 10344810     EISSN: 14401754     Source Type: Journal    
DOI: 10.1111/j.1440-1754.2011.02022.x     Document Type: Review
Times cited : (29)

References (34)
  • 1
    • 0003041607 scopus 로고    scopus 로고
    • Diseases of muscle
    • Fauci A.S. Braunwald E. Isselbacher K.J. eds. 14th edn. New York: McGraw-Hill.
    • Mendell JR, Griggs RC, Ptacek LJ,. Diseases of muscle. In:, Fauci AS, Braunwald E, Isselbacher KJ, eds. Harrison's Principles of Internal Medicine, 14th edn. New York: McGraw-Hill, 1998; 2473-83.
    • (1998) Harrison's Principles of Internal Medicine , pp. 2473-2483
    • Mendell, J.R.1    Griggs, R.C.2    Ptacek, L.J.3
  • 2
    • 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
  • 4
    • 33749264062 scopus 로고    scopus 로고
    • "My Son Is Still Walking": Stages of Receptivity to Discussions of Advance Care Planning Among Parents of Sons With Duchenne Muscular Dystrophy
    • DOI 10.1016/j.spen.2006.06.009, PII S1071909106000994, Update in Hereditary Childhood Neuromuscular Diseases
    • 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: 132-40. (Pubitemid 44486828)
    • (2006) Seminars in Pediatric Neurology , vol.13 , Issue.2 , pp. 132-140
    • Erby, L.H.1    Rushton, C.2    Geller, G.3
  • 5
    • 0030093958 scopus 로고    scopus 로고
    • Diagnosis of Duchenne muscular dystrophy: Parents' experiences and satisfaction
    • Green JM, Murton FE,. Diagnosis of Duchenne muscular dystrophy: parents' experiences and satisfaction. Child Care Health Dev. 1996; 22: 113-28. (Pubitemid 126456467)
    • (1996) Child: Care, Health and Development , vol.22 , Issue.2 , pp. 113-128
    • Green, J.M.1    Murton, F.E.2
  • 6
    • 21044447396 scopus 로고    scopus 로고
    • Parents' perspectives on coping with Duchenne muscular dystrophy
    • DOI 10.1111/j.1365-2214.2005.00518.x
    • Webb CL,. Parents' perspectives on coping with Duchenne muscular dystrophy. Child Care Health Dev. 2005; 31: 385-96. (Pubitemid 40873214)
    • (2005) Child: Care, Health and Development , vol.31 , Issue.4 , pp. 385-396
    • Webb, C.L.1
  • 8
    • 31944448013 scopus 로고    scopus 로고
    • Health related quality of life in people with hereditary neuromuscular diseases: An investigation of test-retest agreement with comparison between two generic questionnaires, the Nottingham health profile and the short form-36 items
    • DOI 10.1016/j.nmd.2005.11.002, PII S0960896605003160
    • Boyer F, Morrone I, Laffont I, Dizien O, Etienne JC, Novella JL,. Health related quality of life in people with hereditary neuromuscular diseases: an investigation of test-retest agreement with comparison between two generic questionnaires, the Nottingham health profile and the short form-36 items. Neuromuscul. Disord. 2006; 16: 99-106. (Pubitemid 43190741)
    • (2006) Neuromuscular Disorders , vol.16 , Issue.2 , pp. 99-106
    • Boyer, F.1    Morrone, I.2    Laffont, I.3    Dizien, O.4    Etienne, J.C.5    Novella, J.L.6
  • 9
    • 0034993579 scopus 로고    scopus 로고
    • Relating familial stress to the psychosocial adjustment of adolescents with Duchenne muscular dystrophy
    • Reid DT, Renwick RM,. Relating familial stress to the psychosocial adjustment of adolescents with Duchenne muscular dystrophy. Int. J. Rehabil. Res. 2001; 24: 83-93. (Pubitemid 32531169)
    • (2001) International Journal of Rehabilitation Research , vol.24 , Issue.2 , pp. 83-93
    • Reid, D.T.1    Renwick, R.M.2
  • 10
    • 0031116745 scopus 로고    scopus 로고
    • Caring for a child with a progressive illness during the complex chronic phase: Parents' experience of facing adversity
    • Gravelle A,. Caring for a child with a progressive illness during the complex chronic phase: parents' experience of facing adversity. J. Adv. Nurs. 1997; 25: 738-45. (Pubitemid 127686902)
    • (1997) Journal of Advanced Nursing , vol.25 , Issue.4 , pp. 738-745
    • Gravelle, A.M.1
  • 12
    • 12344314856 scopus 로고    scopus 로고
    • Adult life with Duchenne muscular dystrophy: Observations among an emerging and unforeseen patient population
    • DOI 10.1080/13638490400010191
    • Rahbek J, Werge B, Madsen A, Marquardt J, Steffensen BF, Jeppesen J,. Adult life with Duchenne muscular dystrophy: observations among an emerging and unforeseen patient population. Pediatr. Rehabil. 2005; 8: 17-28, January. (Pubitemid 40127948)
    • (2005) Pediatric Rehabilitation , vol.8 , Issue.1 , pp. 17-28
    • Rahbek, J.1    Werge, B.2    Madsen, A.3    Marquardt, J.4    Steffensen, B.F.5    Jeppesen, J.6
  • 13
    • 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: 311-8.
    • (2006) Dev. Med. Child Neurol. , vol.48 , pp. 311-318
    • Davis, E.1    Waters, E.2    MacKinnon, A.3
  • 14
    • 0013327506 scopus 로고    scopus 로고
    • Measurement of health outcomes in treatment effectiveness evaluations
    • (Suppl.).
    • Patrick DL, Chiang Y,. Measurement of health outcomes in treatment effectiveness evaluations. Med. Care 2000; 39 (Suppl. II): II14-25.
    • (2000) Med. Care , vol.39 , Issue.2
    • Patrick, D.L.1    Chiang, Y.2
  • 17
    • 54949111645 scopus 로고    scopus 로고
    • Health status of children with cerebral palsy living in Europe: A multicentre study
    • Beckung E, White-Koning M, Marcelli M, et al,. Health status of children with cerebral palsy living in Europe: a multicentre study. Child Care Health Dev. 2008; 34: 806-14.
    • (2008) Child Care Health Dev. , vol.34 , pp. 806-814
    • Beckung, E.1    White-Koning, M.2    Marcelli, M.3
  • 19
    • 37349105705 scopus 로고    scopus 로고
    • Self-Reported Health Status and Quality of Life in Youth With Cerebral Palsy and Typically Developing Youth
    • DOI 10.1016/j.apmr.2007.09.016, PII S0003999307015729
    • Bjornson KF, Belza B, Kartin D, Logsdon RG, McLaughlin J,. Self-reported health status and quality of life in youth with cerebral palsy and typically developing youth. Arch. Phys. Med. Rehabil. 2008; 89: 121-7. (Pubitemid 350298994)
    • (2008) Archives of Physical Medicine and Rehabilitation , vol.89 , Issue.1 , pp. 121-127
    • Bjornson, K.F.1    Belza, B.2    Kartin, D.3    Logsdon, R.G.4    McLaughlin, J.5
  • 20
    • 0033796268 scopus 로고    scopus 로고
    • The parent-form Child Health Questionnaire in Australia: Comparison of reliability, validity, structure, and norms
    • Waters E, Salmon L, Wake M,. The parent-form Child Health Questionnaire in Australia: comparison of reliability, validity, structure, and norms. J. Pediatr. Psychol. 2000; 25: 381-91.
    • (2000) J. Pediatr. Psychol. , vol.25 , pp. 381-391
    • Waters, E.1    Salmon, L.2    Wake, M.3
  • 21
    • 77649241209 scopus 로고    scopus 로고
    • Quality of life in children with Charcot-Marie-Tooth disease
    • Burns J, Ryan MM, Ouvrier RA,. Quality of life in children with Charcot-Marie-Tooth disease. J. Child. Neurol. 2010; 25: 343-7.
    • (2010) J. Child. Neurol. , vol.25 , pp. 343-347
    • Burns, J.1    Ryan, M.M.2    Ouvrier, R.A.3
  • 22
    • 0017848842 scopus 로고
    • Charcot-Marie-Tooth disease: Data for genetic counseling relating age to risk
    • Bird TD, Kraft GH,. Charcot-Marie-Tooth disease: data for genetic counseling relating age to risk. Clin. Genet. 1978; 14: 43-9. (Pubitemid 8381520)
    • (1978) Clinical Genetics , vol.14 , Issue.1 , pp. 43-49
    • Bird, T.D.1    Kraft, G.H.2
  • 24
    • 1242331431 scopus 로고    scopus 로고
    • Feasibility and reliability of a mailed questionnaire to obtain visual analogue scale valuations for health states defined by the Health Utilities Index Mark 3
    • Raat H, Bonsel GJ, Hoogeveen C, Essink-Bot M,. Feasibility and reliability of a mailed questionnaire to obtain visual analogue scale valuations for health states defined by the Health Utilities Index Mark 3. Med. Care 2004; 42: 13-8.
    • (2004) Med. Care , vol.42 , pp. 13-18
    • Raat, H.1    Bonsel, G.J.2    Hoogeveen, C.3    Essink-Bot, M.4
  • 25
    • 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 2-4 April 2004, Naarden, The Netherlands
    • DOI 10.1016/j.nmd.2004.05.006, PII S0960896604001324
    • Bushby K, Muntoni F, Urtizberea A, Hughes R, Griggs R,. Report on the 124th ENMC international workshop. Treatment of Duchenne muscular dystrophy; defining the gold standards of management in the use of corticosteroids. 2-4 April 2004, Naarden, The Netherlands. Neuromuscul. Disord. 2004; 14: 526-34, September. (Pubitemid 39141708)
    • (2004) Neuromuscular Disorders , vol.14 , Issue.8-9 , pp. 526-534
    • Bushby, K.1    Muntoni, F.2    Urtizberea, A.3    Hughes, R.4    Griggs, R.5
  • 26
    • 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
  • 27
    • 0019522162 scopus 로고
    • Clinical trial in Duchenne dystrophy. I. The design of the protocol
    • DOI 10.1002/mus.880040304
    • Brooke MH, Griggs RC, Mendell JR, Fenichel GM, Shumate JB, Pellegrino RJ,. Clinical trial in Duchenne dystrophy. I. The design of the protocol. Muscle Nerve 1981; 4: 186-97. (Pubitemid 11098499)
    • (1981) Muscle and Nerve , vol.4 , Issue.3 , pp. 186-197
    • Brooke, M.H.1    Mendell, J.R.2
  • 28
    • 34347335503 scopus 로고    scopus 로고
    • Living with muscular dystrophy: Health related quality of life consequences for children and adults
    • Available from: [accessed 1 July 2009].
    • 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 from: [accessed 1 July 2009].
    • (2007) Health Qual. Life Outcomes , vol.5 , pp. 31
    • Grootenhuis, M.A.1    De Boone, J.2    Van Der Kooi, A.3
  • 30
    • 0032542897 scopus 로고    scopus 로고
    • What's wrong with Bonferroni adjustments
    • Perneger T,. What's wrong with Bonferroni adjustments. BMJ 1998; 316: 1236-8. (Pubitemid 28171344)
    • (1998) British Medical Journal , vol.316 , Issue.7139 , pp. 1236-1238
    • Perneger, T.V.1
  • 31
    • 47049118101 scopus 로고    scopus 로고
    • Parental Stress and Quality of Life in Children With Neuromuscular Disease
    • DOI 10.1016/j.pediatrneurol.2008.04.011, PII S0887899408002403
    • Mah JK, Thannhauser JE, Kolski H, Dewey D,. Parental stress and quality of life in children with neuromuscular disease. Pediatr. Neurol. 2008; 39: 102-7. (Pubitemid 351970667)
    • (2008) Pediatric Neurology , vol.39 , Issue.2 , pp. 102-107
    • Mah, J.K.1    Thannhauser, J.E.2    Kolski, H.3    Dewey, D.4
  • 32
    • 38849098513 scopus 로고    scopus 로고
    • Children's quality of life: Separating the person from the disorder
    • DOI 10.1136/adc.2007.132167
    • Rosenbaum P,. Children's quality of life: separating the person from the disorder. Arch. Dis. Child. 2008; 93: 100-1. (Pubitemid 351204746)
    • (2008) Archives of Disease in Childhood , vol.93 , Issue.2 , pp. 100-101
    • Rosenbaum, P.1
  • 33
    • 22344455083 scopus 로고    scopus 로고
    • Evaluating health-related quality-of-life studies in paediatric populations: Some conceptual, methodological and developmental considerations and recent applications
    • DOI 10.2165/00019053-200523070-00003
    • De Civita M, Regier D, Alamgir AH, Anis AH, Fitzgerald MJ, Marra CA,. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics 2005; 23: 659-85. (Pubitemid 41003075)
    • (2005) PharmacoEconomics , vol.23 , Issue.7 , pp. 659-685
    • De Civita, M.1    Regier, D.2    Alamgir, A.H.3    Anis, A.H.4    FitzGerald, M.J.5    Marra, C.A.6
  • 34
    • 77957989520 scopus 로고    scopus 로고
    • Health-related quality of life in boys with Duchenne muscular dystrophy: Agreement between parents and their sons
    • Bray P, Bundy AC, Ryan MM, North KN, Everett A,. Health-related quality of life in boys with Duchenne muscular dystrophy: agreement between parents and their sons. J. Child Neurol. 2010; 25: 1188-94.
    • (2010) J. Child Neurol. , vol.25 , pp. 1188-1194
    • Bray, P.1    Bundy, A.C.2    Ryan, M.M.3    North, K.N.4    Everett, A.5


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.