Quality of Life of Family Caregivers of Patients with Duchenne Muscular Dystrophy

  • Lorrane Caroline de Oliveira Universidade Estadual de Goiás
  • Iriana Moraes Eduardo
  • Thaísa Fernandes Souza
  • Lorena Gomes de Medeiros
  • Cejane Oliveira Martins Prudente
  • Maysa Ferreira Martins Ribeiro

Resumo

Abstract

Duchenne Muscular Dystrophy (DMD) is the most common type of dystrophy. The care provided to the patient with DMD is exhausting and can affect the quality of life (QoL) of caregivers. The objective of the study was to describe the QoL of family caregivers of patients with DMD, relating to sociodemographic and clinical aspects of the patients. This is a cross-sectional quantitative study performed at a rehabilitation institution in Goiânia, Goiás. The sample consisted of 30 family caregivers and their patients with DMD. The instruments applied were: sociodemographic questionnaire; Scale Vignos; and Quality of Life Measure of the World Health Organization (WHOQOLbref). The mean age of the caregivers was 39.20 and the patients were 14.07 years. Most of the caregivers were female, had primary or secondary education. Symptoms of the disease began on average at 3.87 years of age. The mean score in the Vignos Scale was 7.13. The psychological domain of the WHOQOLbref had the highest mean (66.11%) and the lowest environment (55.52%). There was a negative correlation between the age of onset of symptoms and the psychological domain (r = -0.44; p = 0.01). There was a significant relationship between the transport medium and the environment domain (p = 0.05). Family caregivers present moderate QOL. The earlier the patients initiate the more favorable symptoms is the psychological aspect of the caregiver's QOL, suggesting that the earlier the diagnosis is the better the caregiver's QoL.

Keywords: Quality of Life. Caregivers. Muscular Dystrophy, Duchenne.

Resumo

A Distrofia Muscular de Duchenne (DMD) é o tipo de distrofia mais comum. O cuidado prestado ao paciente com DMD é desgastante e pode afetar a qualidade de vida (QV) dos cuidadores. O estudo teve como objetivo descrever a QV de cuidadores familiares de pacientes com DMD, relacionando com aspectos sociodemográficos e clínicos dos pacientes. Trata-se de um estudo quantitativo, transversal, realizado em uma instituição de reabilitação de Goiânia - Goiás. A amostra foi composta por 30 cuidadores familiares e seus pacientes com DMD. Os instrumentos aplicados foram: questionário sociodemográfico; Escala Vignos; e Medida de Qualidade de Vida da Organização Mundial de Saúde (WHOQOL- bref). A média de idade dos cuidadores foi de 39,20 e dos pacientes de 14,07 anos. A maioria dos cuidadores era do sexo feminino, possuía ensino fundamental ou médio. Os sintomas da doença iniciaram em média com 3,87 anos de idade. A média da pontuação na Escala Vignos foi de 7,13. O domínio psicológico do WHOQOL- bref apresentou maior média (66,11%) e o meio ambiente a menor (55,52%). Houve correlação negativa entre a idade de início dos sintomas e o domínio psicológico (r=-0,44;p=0,01). Houve relação significativa entre o meio de transporte e o domínio meio-ambiente (p=0,05). Os cuidadores familiares apresentam moderada QV. Quanto mais cedo os pacientes iniciam os sintomas mais favorável é o aspecto psicológico da QV do cuidador, sugerindo que quando mais precoce é o diagnostico melhor é a QV do cuidador.

Palavras-chave: Qualidade de Vida. Cuidadores. Distrofia Muscular de Duchenne.

Referências

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;10:43-4.

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 assitistida na distrofia muscular de Duchenne: aplicabilidade e benefícios. Rev. Neurociência. 2012;20(1):109-16.

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

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 parentes. J Child Neurol. 2011;26(6):707-13.

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

Rocha RER, Mineiro L, Boscatto EC, Mello MF. Aptidão funcional e qualidade de vida de idosos frequentadores de uma universidade aberta da maior idade. Journal of Physical Education, 2016;27

Vignos PJJr, Spencer GEJr. Archibald, K.C. Management of progressive muscular dystrophy in childhood. JAMA, 1963;(184):89-96

Tomiak EM, Samson A, Miles SA, Choquette MC, Chakraborty PK, Jacob PJ. Genderspecific differences in the psychosocial adjustment of parents of a child with Duchenne muscular dystrophy (DMD). Qualitative Research Journal. 2007;7:2–21

Kenneson A, Bobo JK. The effect of caregiving on women in families with Duchenne/Becker muscular dystrophy. Health Soc Care Community 2010;18:520–528.

Pimenta RA, Rodrigues LA, Greguol M. Avaliação da qualidade de vida e sobrecarga de cuidadores de pessoas com deficiência intelectual. Rev Bras Ciênc Saúde. 2014;(14)3:69-76

Thomas PT, Rajaram P, Nalini A. Psychosocial Challenges in Family Caregiving with Children Suffering from Duchenne Muscular Dystrophy, Health & Social Work. 2014;(39)3:144-152

Magliano L, Politano L. Family context in muscular dystrophies: psychosocial aspects and social integration. Acta Myol 2016;35:96-99

Nereo NE, Fee RJ, Hinton VJ. Parental stress in mothers of boys with Duchenne muscular dystrophy. J Pediatr Psychol. 2003;21:473–484.

Im SH, Lee SC, Moon JH, Park ES, Park YG. Quality of life for primary caregivers of muscular dystrophy Subject description. Chin Med J (Engl) 2010;123:452–457.

Connolly, A.M., Florence, J.M., Cradock, M.M. et al, Motor and cognitive assessment of infants and young boys with duchenne muscular dystrophy: results from the Muscular Dystrophy Association DMD Clinical Research Network. Neuromuscul Disord. 2013;23:529–539

Vuillerot C, Girardot F, Payan C, et al. Monitoring changes and predicting loss of ambulation in Duchenne muscular dystrophy with the motor function measure. Dev Med Child Neurol. 2010;52(1):60–65.

Ricotti V, Ridout DA, Pane M, Main M, Mayhew A, Mercuri E, Manzur AY, Muntoni F. The NorthStar Ambulatory Assessment in Duchenne muscular dystrophy: considerations for the design of clinical trials. J Neurol Neurosurg Psychiatry. 2016;87:149–155.

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

Lazarus R, Folkman S (1984) Stress, appraisal and coping. Springer, New York

Guillamón N, Nieto R, Pousada M et al., Quality of life and mental health among parents of children with cerebral palsy: the influence of self-efficacy and coping strategies. J Clin Nurs 2013;22:1579–1590

Magliano L, Patalano M, Sagliocchi A, Scutifero M, Zaccaro A, D'Angelo MG, et al. “I have got something positive out of this situation”: psychological benefits of caregiving in relatives of young people with muscular dystrophy. J Neurol 2014;261:188-195

Publicado
2020-05-28
Seção
Artigos