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Quantifying the economic impact of caregiving for Duchenne muscular dystrophy (DMD) in Spain


  • David Flores

    (Universidad San Jorge, Campus Universitario de Villanueva de Gállego Zaragoza)

  • María P. Ribate

    (Universidad San Jorge, Campus Universitario de Villanueva de Gállego Zaragoza)

  • Marisol Montolio

    (Barcelona University)

  • Feliciano J. Ramos

    (Universidad de Zaragoza)

  • Manuel Gómez

    (Universidad San Jorge, Campus Universitario de Villanueva de Gállego Zaragoza)

  • Cristina B. García

    (Universidad San Jorge, Campus Universitario de Villanueva de Gállego Zaragoza)


Aim To establish the potential economic burden in caregivers to patients with DMD and the potential causative factors. Method Caregivers to patients with DMD were recruited through the DMD patients Register and questioned about several economic aspects using “ad-hoc” questionnaires. Results All families, apart from one (97.2% n = 36), incurred in monthly medical costs (44% of the families more than 50 euros/month). 97.2% of the households considered looking after a patient of DMD as financially burdensome, and 80.5% of households declared to have suffered work changes, especially the mothers (job timetable-related mainly). The presence of obsessive–compulsive disorders (OCD) in patients was significantly associated with caregivers’ high financial burden as these were six times more likely to have this perception OR = 6468 IC 95% (1056–39,601), p = 0.043. Also, when patients had learning difficulties, caregivers had up to six times more chances to incur in monthly expenditure for formal care OR = 6089 IC 95% (1112–33,342), p = 0.037. Interpretation Caregivers have relevant financial burden that might be conditioned by the clinical condition of the patient. What this paper adds Quantitative data about financial burden in DMD Spanish families providing informal care. Identification of the patient’s main clinical issues associated with financial burden.

Suggested Citation

  • David Flores & María P. Ribate & Marisol Montolio & Feliciano J. Ramos & Manuel Gómez & Cristina B. García, 2020. "Quantifying the economic impact of caregiving for Duchenne muscular dystrophy (DMD) in Spain," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 21(7), pages 1015-1023, September.
  • Handle: RePEc:spr:eujhec:v:21:y:2020:i:7:d:10.1007_s10198-020-01197-6
    DOI: 10.1007/s10198-020-01197-6

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    References listed on IDEAS

    1. Lee, S. & Colditz, G. & Berkman, L. & Kawachi, I., 2003. "Caregiving to Children and Grandchildren and Risk of Coronary Heart Disease in Women," American Journal of Public Health, American Public Health Association, vol. 93(11), pages 1939-1944.
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    1. Chris Sampson’s journal round-up for 7th September 2020
      by Chris Sampson in The Academic Health Economists' Blog on 2020-09-07 11:00:07


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    Cited by:

    1. Alicia Aurora Rodríguez & Óscar Martínez & Imanol Amayra & Juan Francisco López-Paz & Mohammad Al-Rashaida & Esther Lázaro & Patricia Caballero & Manuel Pérez & Sarah Berrocoso & Maitane García & Paul, 2021. "Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease," IJERPH, MDPI, vol. 18(6), pages 1-16, March.

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    More about this item


    Duchenne muscular dystrophy; Caregiver burden; Economic impact; TREAT-NMD;
    All these keywords.

    JEL classification:

    • I19 - Health, Education, and Welfare - - Health - - - Other


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