Evaluation of the quality of life of children with Duchenne's progressive muscular dystrophy;Evaluación de la calidad de vida de los niños con distrofia muscular progresiva de Duchenne

Revista de Neurologia

Volumn 45, Issue 2, 2007, Pages 81-87

  Longo Araújo De Melo, Egmar ^a,b   Moreno Valdes M T ^a  

^a UNIVERSITY OF FORTALEZA   (Brazil)

^b NONE   (Brazil)

Author keywords

Caregivers; Children; Duchenne's muscular dystrophy; Leasure; Quality of life; Rehabilitation

Indexed keywords

ARTICLE; CAREGIVER; CLINICAL ARTICLE; DUCHENNE MUSCULAR DYSTROPHY; FAMILY; FUNCTIONAL STATUS; HAPPINESS; HUMAN; LEISURE; PROGRESSIVE MUSCULAR DYSTROPHY; QUALITATIVE ANALYSIS; QUALITY OF LIFE; QUANTITATIVE ANALYSIS; QUESTIONNAIRE; SCHOOL CHILD; ADOLESCENT; CHILD; DISEASE COURSE; EVALUATION; FEMALE; HANDICAPPED CHILD; MALE; PATHOPHYSIOLOGY; PSYCHOLOGICAL ASPECT;

ADOLESCENT; CAREGIVERS; CHILD; DISABLED CHILDREN; DISEASE PROGRESSION; FEMALE; HUMANS; MALE; MUSCULAR DYSTROPHY, DUCHENNE; QUALITY OF LIFE; QUESTIONNAIRES;

EID: 35148841682     PISSN: 02100010     EISSN: None     Source Type: Journal    
DOI: 10.33588/rn.4502.2007055     Document Type: Article

References (29)

1. Anderson JL, Head, SL, Rae, C, Morley, JW. Brain function in Duchenne muscular dystrophy. Brain 2002; 125: 4-13.
2. Dubowitz V. Muscle disorders in childhood. 2 ed. London: WB Saunders; 1995. p. 3-73.
3. Araújo APQC, Deco MC, Klôh BS, Costa MR, Góis FV, Guimarães AFCM. Diagnosis delay of Duchenne muscular dystrophy. Rev Bras Saúde Matern Infant 2004; 4: 179-83.
4. Nereo NE, Hinton VJ. Three wishes and psychological functioning in boys with Duchenne muscular dystrophy. J Dev Behav Pediatr 2003; 24: 96-103.
5. Thong MK, Bazlin RI, Wong KT. Diagnosis and management of Duchenne muscular dystrophy in a developing country over a 10-year period. Dev Med Child Neurol 2005; 47: 474-7.
6. Fleck MPA, Louzada S, Xavier M, Chachamovic HE, Vieira G, Santos L, et al. Desenvolvimento da versão em português do instrumento de avaliação de qualidade de vida da OMS (WHOQOL-100). Rev Bras Psiquiatr 1999; 21: 19-28.
7. Schalock RL, Verdugo MA. Calidad de vida: manual para profesionales de la educación, salud y servicios sociales. Madrid: Alianza; 2003.
8. Melo ELA, Valdés MTM, Pinto JMS. Qualidade de vida de crianças e adolescentes com distrofia muscular de Duchenne. Pediatria (São Paulo) 2005; 27: 28-37.
9. Firth M, Gardener-Medwin D, Hosking G, Wilkinson E. Interviews with parents of boys suffering from Duchenne muscular dystrophy. Dev Med Child Neurol 1983; 25: 466-71.
10. Witte RA. The psychosocial impact of a progressive physical handicap and terminal illness (Duchenne muscular dystrophy) on adolescents and their families. Br J Med Psychol 1985; 58: 179-87.
11. Miller JB, Colbert AP, Osberg JS. Ventilator dependency: decision-making, daily functioning and quality of life for patients with Duchenne muscular dystrophy. Dev Med Child Neurol 1990; 32: 1078-86.
12. Kohler M, Clarenbach CF, Böni L, Brack T, Russi EW, Bloch KE. Quality of life, physical disability, and impairment in Duchenne muscular dystrophy. Am J Respir Crit Care Med 2005; 172: 1032-6.
13. 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.
14. Assumpção FR Jr, Kuzynski E, Sprovieri MH, Aranha EMG. Escala de avaliação da qualidade de vida (autoquestionnaire qualité de vie enfant imagé): validade e confiabilidade de uma escala para qualidade de vida em crianças de 4 a 12 anos. Arq Neuropsiquiatr 2000; 58: 119-27.
15. Bardin L. Análise de conteúdo. Lisboa: Edições 70; 1977.
16. Minayo MC, Hartz ZMA, Buss PM. Qualidade de vida e saúde: um debate necessário. Ciênc Saúde Coletiva 2000; 5: 7-18.
17. Brown M, Gordon WA. Empowerment in measurement: 'muscle', 'voice', and subjective quality of life as a gold standard. Arch Phys Med Rehabil 2004; 85 (Suppl 2): S13-20.
18. Öhman A. Qualitative methodology for rehabilitation research. J Rehabil Med 2005; 37: 273-80.
19. Bothwell JE, Dooley JM, Gordon KE, MacAuley A, Camfield PR, MacSween J. Duchenne muscular dystrophy -parental perceptions. Clin Pediatr (Phila) 2002; 41: 105-9.
20. 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: 347-57.
21. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001; 5: 1-156.
22. Munguba MC, Valdés MTM, Matos VC, Silva CAB. Jogos eletrônicos: apreensão de estratégias de aprendizagem. RBPS 2003; 16: 47-56.
23. Verdugo MA, Sabeh EN. Evaluación de la percepción de calidad de vida en la infancia. Psicothema 2002; 14: 86-91.
24. Ennett ST, DeVellis BM, Earp JA, Kredich D, Warren RW, Wilhelm CL. Disease experience and psyhossocial adjustment in children with juvenile rheumatoid arthritis: children's versus mothers' reports. J Pediatr Psychol 1991; 16: 557-68.
25. Rone-Adams SA, Stern DF, Walker V. Stress and compliance with a home exercise program among caregivers of children with disabilities. Pediatr Phys Ther 2004; 16: 140-8.
26. Badía M. Estrés y afrontamiento en familias con hijos afectados de parálisis cerebral. Publicaciones del INICO. Universidad de Salamanca. URL: http://www3.usal.es/~inico/investigacion/invesinico/estresPC. [01.10.2001].
27. Well CL. Parent's perspectives on coping with Duchenne muscular dystrophy. Child Care Health Dev 2005; 31: 385-96.
28. Iversen MD, Shimmel LP, Ciacera SL, Prabhakar M. Creating a family-centered approach to early intervention services: perceptions of parents and professionals. Pediatr Phys Ther 2003; 15: 23-31.
29. Gross A, Eudy C, Drabman R. Training parents to be physical therapists with their physically handicapped child. J Behav Med 1982; 5: 321-7.