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Volumn 47, Issue 2, 2015, Pages 161-166

Quality of life of adult men with Duchenne muscular dystrophy in the Netherlands: Implications for care

Author keywords

Adult; Duchenne muscular dystrophy; Quality of life

Indexed keywords

ADULT; CROSS-SECTIONAL STUDY; DUCHENNE MUSCULAR DYSTROPHY; HEALTH STATUS; HUMAN; HUMAN RELATION; LEISURE; MALE; MENTAL HEALTH; NETHERLANDS; PSYCHOLOGY; QUALITY OF LIFE; QUESTIONNAIRE; WORK CAPACITY;

EID: 84929232674     PISSN: 16501977     EISSN: 16512081     Source Type: Journal    
DOI: 10.2340/16501977-1898     Document Type: Article
Times cited : (30)

References (32)
  • 3
    • 84869164525 scopus 로고    scopus 로고
    • Survival in Duchenne muscular dystrophy
    • Rall S, Grimm T. Survival in Duchenne muscular dystrophy. Acta Myol 2012; 31: 117-120.
    • (2012) Acta Myol , vol.31 , pp. 117-120
    • Rall, S.1    Grimm, T.2
  • 4
    • 84869160655 scopus 로고    scopus 로고
    • Improvement of survival in Duchenne Muscular Dystrophy: Retrospective analysis of 835 patients
    • Passamano L, Taglia A, Palladino A, Viggiano E, D'Ambrosio P, Scutifero M, et al. Improvement of survival in Duchenne Muscular Dystrophy: retrospective analysis of 835 patients. Acta Myol 2012; 31: 121-125.
    • (2012) Acta Myol , vol.31 , pp. 121-125
    • Passamano, L.1    Taglia, A.2    Palladino, A.3    Viggiano, E.4    D'Ambrosio, P.5    Scutifero, M.6
  • 7
    • 0035092299 scopus 로고    scopus 로고
    • Long-term ventilation for patients with Duchenne Muscular Dystrophy: Physician's beliefs and practices
    • Gibson B. Long-term ventilation for patients with Duchenne Muscular Dystrophy: Physician's beliefs and practices. Chest 2001; 119: 940-946.
    • (2001) Chest , vol.119 , pp. 940-946
    • Gibson, B.1
  • 8
    • 0025835096 scopus 로고
    • Life satisfaction of individuals with Duchenne muscular dystrophy using long-term mechanical ventilatory support
    • Bach JR, Campagnolo DI, Hoeman S. Life satisfaction of individuals with Duchenne muscular dystrophy using long-term mechanical ventilatory support. Am J Phys Med Rehabil 1991; 70: 129-135.
    • (1991) Am J Phys Med Rehabil , vol.70 , pp. 129-135
    • Bach, J.R.1    Campagnolo, D.I.2    Hoeman, S.3
  • 9
    • 12344314856 scopus 로고    scopus 로고
    • Adult life with Duchenne muscular dystrophy: Observations among an emerging and unforeseen patient population
    • 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.
    • (2005) Pediatr Rehabil , vol.8 , pp. 17-28
    • Rahbek, J.1    Werge, B.2    Madsen, A.3    Marquardt, J.4    Steffensen, B.F.5    Jeppesen, J.6
  • 11
    • 35148841682 scopus 로고    scopus 로고
    • Evaluation of the quality of life of children with Duchenne's progressive muscular dystrophy
    • Longo-Araujo de Melo E, Moreno-Valdes MT. Evaluation of the quality of life of children with Duchenne's progressive muscular dystrophy. Rev Neurol 2007; 45: 81-87.
    • (2007) Rev Neurol , vol.45 , pp. 81-87
    • Longo-Araujo De Melo, E.1    Moreno-Valdes, M.T.2
  • 12
    • 79952340717 scopus 로고    scopus 로고
    • Duchenne muscular dystrophy: Quality of life among 95 patients evaluated using the Life Satisfaction Index for Adolescents
    • Simon VA, Resende MB, Simon MA, Zanoteli E, Reed UC. Duchenne muscular dystrophy: quality of life among 95 patients evaluated using the Life Satisfaction Index for Adolescents. Arq Neuropsiquiqtr 2011; 69: 19-22.
    • (2011) Arq Neuropsiquiqtr , vol.69 , pp. 19-22
    • Simon, V.A.1    Resende, M.B.2    Simon, M.A.3    Zanoteli, E.4    Reed, U.C.5
  • 13
    • 77949442788 scopus 로고    scopus 로고
    • 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
    • Davis SE, Hynan LS, Limbers CA, Andersen CM, Greene MC, Varni JW, et al. 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: 97-109.
    • (2010) J Clin Neuromuscul Dis , vol.11 , pp. 97-109
    • Davis, S.E.1    Hynan, L.S.2    Limbers, C.A.3    Andersen, C.M.4    Greene, M.C.5    Varni, J.W.6
  • 14
    • 77956314050 scopus 로고    scopus 로고
    • Relationship between clinical outcome measures and parent proxy report of health-related quality of life in ambulatory children with Duchenne muscular dystrophy
    • McDonald CM, MacDonald DA, Bagley A, Sienko Thomas S, Buckon CE, et al. Relationship between clinical outcome measures and parent proxy report of health-related quality of life in ambulatory children with Duchenne muscular dystrophy. J Child Neurol 2010; 9: 1130-1134.
    • (2010) J Child Neurol , vol.9 , pp. 1130-1134
    • McDonald, C.M.1    MacDonald, D.A.2    Bagley, A.3    Sienko Thomas, S.4    Buckon, C.E.5
  • 15
    • 79957609976 scopus 로고    scopus 로고
    • Qualilty of life in Duchenne muscular dystrophy: The subjective impact on children and parents
    • Baiardini I, Minetti C, Bonifacino S, Porcu A, Klersy C, Petralia P, et al. Qualilty of life in Duchenne muscular dystrophy: the subjective impact on children and parents. J Child Neurol 2011; 26: 707-713.
    • (2011) J Child Neurol , vol.26 , pp. 707-713
    • Baiardini, I.1    Minetti, C.2    Bonifacino, S.3    Porcu, A.4    Klersy, C.5    Petralia, P.6
  • 16
    • 84870517916 scopus 로고    scopus 로고
    • Health related quality of life in children and adolescents with Duchenne muscular dystrophy
    • Uzark K, King E, Cripe L, Spicer R, Sage J, Kinnett K, et al. Health related quality of life in children and adolescents with Duchenne muscular dystrophy. Pediatrics 2012; 130: e1559-e1566.
    • (2012) Pediatrics , vol.130 , pp. e1559-e1566
    • Uzark, K.1    King, E.2    Cripe, L.3    Spicer, R.4    Sage, J.5    Kinnett, K.6
  • 18
    • 0032211654 scopus 로고    scopus 로고
    • Translation, validation and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations
    • Aaronson NK, Muller M, Cohen PD, Essink-Bot ML, Fekkes M, Sanderman R, et al. Translation, validation and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations. J Clin Epidemiol 1998; 51: 1055-1068.
    • (1998) J Clin Epidemiol , vol.51 , pp. 1055-1068
    • Aaronson, N.K.1    Muller, M.2    Cohen, P.D.3    Essink-Bot, M.L.4    Fekkes, M.5    Sanderman, R.6
  • 19
    • 30744471410 scopus 로고    scopus 로고
    • Do the SF-36 and WHOQOL-BREF measure the same constructs? Evidence from the Taiwan population
    • Huang IC, Wu AW, Frangakis C. Do the SF-36 and WHOQOL-BREF measure the same constructs? Evidence from the Taiwan population. Qual Life Res 2006; 15: 15-24.
    • (2006) Qual Life Res , vol.15 , pp. 15-24
    • Huang, I.C.1    Wu, A.W.2    Frangakis, C.3
  • 20
    • 0031775905 scopus 로고    scopus 로고
    • Development of the World Health Organization WHOQOL-BREF quality of life assessment
    • The WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med 1998; 28: 551-558.
    • (1998) Psychol Med , vol.28 , pp. 551-558
  • 22
    • 0028824086 scopus 로고
    • The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization
    • World Health Organization. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41: 1403-1409.
    • (1995) Soc Sci Med , vol.41 , pp. 1403-1409
    • World Health Organization1
  • 23
    • 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: 1188-1194.
    • (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
  • 24
    • 0037388810 scopus 로고    scopus 로고
    • Individualization in quality of life measurement: Instruments and approaches
    • Dijkers MP. Individualization in quality of life measurement: instruments and approaches. Arch Phys Med Rehabil 2003; 84 Suppl 2: S3-S14.
    • (2003) Arch Phys Med Rehabil , vol.84 , pp. S3-S14
    • Dijkers, M.P.1
  • 26
    • 77956237333 scopus 로고    scopus 로고
    • Applications of response shift theory and methods to participation measurement: A brief history of a young field
    • Schwartz CE. Applications of response shift theory and methods to participation measurement: a brief history of a young field. Arch Phys Med Rehabil 2010; 91 Suppl 9: S38-S43.
    • (2010) Arch Phys Med Rehabil , vol.91 , pp. S38-S43
    • Schwartz, C.E.1
  • 27
    • 34347325986 scopus 로고    scopus 로고
    • Men on the margin: A Bourdieusian examination of living into adulthood with muscular dystrophy
    • Gibson BE, Young NL, Upshur RE, McKeever P. Men on the margin: a Bourdieusian examination of living into adulthood with muscular dystrophy. Soc Sci Med 2007; 65: 505-517.
    • (2007) Soc Sci Med , vol.65 , pp. 505-517
    • Gibson, B.E.1    Young, N.L.2    Upshur, R.E.3    McKeever, P.4
  • 28
    • 17344385922 scopus 로고    scopus 로고
    • Duchenne muscular dystrophy. See me graduate
    • Verberkt HJ. Duchenne muscular dystrophy. See me graduate. Lancet 2001; 358 Suppl: S26.
    • (2001) Lancet , vol.358 , pp. S26
    • Verberkt, H.J.1
  • 29
    • 33846288380 scopus 로고    scopus 로고
    • Current treatment of adult Duchenne muscular dystrophy
    • Wagner KR, Lechtzin N, Judge DP. Current treatment of adult Duchenne muscular dystrophy. Biochim Biophys Acta 2007; 1772: 229-237.
    • (2007) Biochim Biophys Acta , vol.1772 , pp. 229-237
    • Wagner, K.R.1    Lechtzin, N.2    Judge, D.P.3
  • 30
    • 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
    • Erby LH, Rushton C, Geller G. "My son is still walking": stages of receptivity to discussions of advance care planning among parents 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    Rushton, C.2    Geller, G.3
  • 31
    • 84859641520 scopus 로고    scopus 로고
    • Transition to adulthood for young men with Duchenne muscular dystrophy: Research from the UK
    • Abbott D, Carpenter J, Bushby K. Transition to adulthood for young men with Duchenne muscular dystrophy: research from the UK. Neuromuscular Disord 2012; 22: 445-446.
    • (2012) Neuromuscular Disord , vol.22 , pp. 445-446
    • Abbott, D.1    Carpenter, J.2    Bushby, K.3
  • 32
    • 33947536564 scopus 로고    scopus 로고
    • Are persons with physical disabilities who participate in society healthier and happier? Structural equation modelling of objective participation and subjective well-being
    • van Campen C, Iedema J. Are persons with physical disabilities who participate in society healthier and happier? Structural equation modelling of objective participation and subjective well-being. Qual Life Res 2007: 16: 635-645.
    • (2007) Qual Life Res , vol.16 , pp. 635-645
    • Van Campen, C.1    Iedema, J.2


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.