Evolution of the quality of life of caregivers of patients with Duchenne muscular dystrophy
DOI:
https://doi.org/10.5902/2236583433398Keywords:
Caregivers, Duchenne Muscular Dystrophy, Quality of lifeAbstract
Objective: to analyze the evolution of the quality of life of caregivers of patients with Duchenne Muscular Dystrophy (DMD) after a year of rehabilitation, according to the degree of disease. Methods: quantitative and longitudinal Study, conducted in a rehabilitation institution in Goiânia-Goiás. The sample was composed of 27 patients with DMD and their family caregivers. The instruments were applied: demographic profile; Vignos Scale; and measure of quality of life of the World Health Organization (WHOQOL-bref). Results: mean age of carers was 39.44 years and patients of 14.59 years, the average scale of Vignos was 7.59 points. Vignos scale showed significant worsening after one year (p = < 0.001). With respect to the WHOQOL-bref, the domain environment showed the worst averages in the two collections, and the physical domain. There was no significant difference in the averages of the domains and WHOQOL-bref overall score after one year. There were decreases in psychological and social domains only caregivers whose children were more severe. Conclusion: Caregivers of patients more graves, which are in a phase of more advanced disease, require multidisciplinary care, because they were the ones who presented a worse quality of life after one year of follow-up.Downloads
References
Bendixen RM, Senesac C, Lott DJ, Vandenborne K. Participation and quality of life in children with Duchenne muscular dystrophy using the International Classification of Functioning, Disability, and Health. Health Qual Life Outcomes. 2012;22:43-44
Landfeldt E, Lindgren P, Bell CF, Guglieri M, Straub V, Lochmüller H. Quantifying the burden of caregiving in Duchenne muscular dystrophy. Journal of Neurology 2016;1-10
Malik V, Rodino-klapac LR, Viollet L, Mendell JR. Aminoglycoside-induced mutation suppression (stop codon readthrough) as a theratpeutic strategy for Duchenne muscular dystrophy. Therapeutic Advances in Neurological Disorders, 2010;(3)6:379-389
Wiski MB, Souza MC. Perfil clinico e funcional da distrofia muscular de Duchenne: atuação da enfermagem no tratamento e diagnóstico precoce. Ensaios e Ciência: Ciências Biológicas, Agrárias e da Saúde, 2015(19)2:81-88
Carbonero FC, Zago GM, Campos D. Tecnologia assistiva na distrofia muscular de Duchenne: aplicabilidade e benefícios. Revista Neurociência, 2012;20(1):109-116
Fernandes LAY, Caromano FA, Assis SMB, Hukuda ME, Voos MC, Carvalho EV. Relationship between the climbing up and climbing down stairs domain scores on the FES-DMD, the score on the vignos scale, age and timed performance of functional activities in boys with Duchenne muscular dystrophy. Brazilian Journal of Physical Therapy, 2014;(18)6:513-520
Pangalila RF, Van Den Bos GAM, Bartels B, Bergen MP, Kampelmacher MJ, Stam JH, et al., Quality of life of adult men with duchenne muscular dystrophy in the netherlands: implications for care. Journal Rehabilitation Medical, 2015;(47):161-166
Oliveira SS, Blascovi-Assis SM, Caromano FA. Qualidade de vida de crianças com distrofia muscular: estudo de dois casos. Licere 2013;16(3):1-25
Moura MCDS, Wutzki HC, Voos MC, Resende MBD, Reed UC, Hasue RH. Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers? Arquivos Neuropsiquiatria, 2015;(73)1:52-57
The WHOQOL Group. The World Health Organization quality of life assessment (WHOQOL): position paper from the World Health Organization. Social Science and Medicine, 1995;(41)10:1403-1409
Costa TF, Gomes TM, Viana LRC, Martins KP, Costa KNFM. Acidente vascular encefálico: características do paciente e qualidade de vida de cuidadores. Revista Brasileira de Enfermagem, 2016;69(5):933-939
Vignos PJJr, Spencer GEJr. Archibald, K.C. Management of progressive muscular dystrophy in childhood. JAMA, 1963;(184):89-96
Fleck MPA, Louzada S, Xavier M, Chachamovich E, Vieira G, Santos L, Pinzon V. Application of the Portuguese version of the abbreviated instrument of quality life WHOQOL-BREF. Revista de Saúde Pública. 2000;(34):178-183
Opstal SL, Jansen M, Van NA, De Groot IJ. Health‐related quality of life and its relation to disease severity in boys with Duchenne muscular dystrophy: satisfied boys, worrying parents‐a case‐control study. J Child Neurol, 2014;(29):1486-1495
Sá CSC, Fagundes IK, Araújo TB, Oliveira ASB, Fávero FM. The relevance of trunk evaluation in Duchenne muscular dystrophy: the segmental assessment of trunk control. Arq Neuropsiquiatr. 2016;74(10):791-5
Ferreira AVS, Goya PSA, Ferrari R, Durán M, Franzini RV, Coromano et al., Comparison of motor function in patients with Duchenne muscular dystrophy in physical therapy in and out of water: 2-year follow-Up. Acta Fisiátrica, 2015;(22)2:51-54
Simon, V. A. Qualidade de vida em crianças e adolescentes com doenças neuromusculares e validação de dois questionários para o português: Life Satisfaction Index for Adolescents - LSI-A e Pediatric Quality of Life Inventory Duchenne Muscular Dystrophy Module. Tese (Doutorado) – Faculdade de medicina, Universidade de São Paulo. São Paulo, 2016;229
Hwang JW, Koo YJ. Depressive Symptoms and Subjective Quality of Life in Parents of Boys with Duchenne/Becker Muscular Dystrophy. Journal of the Korean Academy of Child and Adolescent Psychiatry, 2010;(21)2:103-109
Çakaloz B, Ünlü G, Çardak GT, Kurul S. Duchenne Muskuler Distrofi ve Dikkat Eksikliği Hiperaktivite Bozukluğu Olan Çocukların Annelerinin Yaşam Kaliteleri. Pamukkale Tıp Dergisi 2010;3(2):90-95
Baiardini I, Minetti C, Bonifacino S, Porcu A, Klersy C, Petralia P, et al., Quality of life in Duchenne muscular dystrophy: The subjective impact on children and parents. J Child Neurol. 2011;26(6):707-713
Kenneson A, Bobo JK. The effect of caregiving on women in families with Duchenne/Becker muscular dystrophy. Health Soc Car Community, 2010;(18):520-528
Boyer F, Drame M, Morrone I, Novella JL: Factors relating to carer burden for families of persons with muscular dystrophy. J Rehabil Med 2006;38(5):309-315
Awad AG, Voruganti LN. The burden of schizophrenia on caregivers. Pharmacoeconomics. 2018;26(2):149-162
Candy B, Jones L, Drake R, Leurent B, King M: Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev 2011(6).
Larkindale J, Yang W, Hogan PF, Simon CJ, Zhang Y, Jain A, et al., Cost of illness for neuromuscular diseases in the U.S. Muscle Nerve, 2014;(49):431-438
Magliano L, Patalano M, Sagliocchi A, Scutifero M, Zaccaro A, D’angelo G, et al., Burden, professional support, and social network in families of children and young adults with muscular dystrophies. Muscle Nerve, 2015;(52):13-21
Magliano L, Fiorillo A, De Rosa C, Malangone C, Maj M. Family burden in long-term diseases: a comparative study in schizophrenia vs. physical disorders. Soc Sci Med, 2005;(61):313-322
