Journal of Neurology

, Volume 264, Issue 5, pp 898–904 | Cite as

Caregivers of patients with amyotrophic lateral sclerosis: investigating quality of life, caregiver burden, service engagement, and patient survival

  • Tom BurkeEmail author
  • Miriam Galvin
  • Marta Pinto-Grau
  • Katie Lonergan
  • Caoifa Madden
  • Iain Mays
  • Sile Carney
  • Orla Hardiman
  • Niall Pender
Original Communication


Few studies in amyotrophic lateral sclerosis (ALS) have profiled disease-specific features of the condition in conjunction with assessment of caregivers’ burden, distress, quality of life, and investigated patient survival. Eighty-four ALS patients and their primary caregivers were enrolled. Patients completed ALS-specific measures of physical and cognitive function, while caregivers completed measures of anxiety, depression, caregiver burden, and quality of life. Patient-caregiver dyads were interviewed about their health-service utilisation. Survival data were obtained through the Irish register for ALS. Participants were dichotomised into low/high groups according to the severity of self-reported caregiver burden, based on statistically derived cut-off scores. High-burdened caregivers (n = 43) did not significantly differ from low-burdened caregivers (n = 41) with respect to disease-specific characteristics, i.e., ALSFRS-R, bulbar- or spinal-onset ALS, disease duration, or survival data. However, significant differences were reported on subjective measures of anxiety (p < 0.000), depression (p < 0.001), distress (p < 0.000), and quality of life (p < 0.000). These data demonstrate the limited impact of ALS patient-related variables, i.e., ALSFRS-R and onset, on caregiver burden in ALS, and identify the importance of the psychological composition of caregivers. This study suggests that the subjective experience of individual caregivers is an important factor influencing the severity of experienced caregiver burden.


Caregiver burden Quality of life ALS Survival 


Compliance with ethical standards

Conflicts of interest

The authors report no conflict of interest.

Ethical standards

Ethical approval was granted by the Research Ethics Committee (REC) in Beaumont Hospital, Dublin.

Supplementary material

415_2017_8448_MOESM1_ESM.docx (55 kb)
Supplementary material 1 (DOCX 54 kb)


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Copyright information

© Springer-Verlag Berlin Heidelberg 2017

Authors and Affiliations

  • Tom Burke
    • 1
    • 2
    Email author
  • Miriam Galvin
    • 1
  • Marta Pinto-Grau
    • 1
    • 2
  • Katie Lonergan
    • 1
    • 2
  • Caoifa Madden
    • 1
  • Iain Mays
    • 1
  • Sile Carney
    • 1
    • 2
  • Orla Hardiman
    • 1
    • 3
  • Niall Pender
    • 1
    • 2
  1. 1.Department of Psychology, Lower Ground FloorBeaumont HospitalDublin 9Ireland
  2. 2.Academic Unit of NeurologyTrinity Biomedical Sciences InstituteDublin 2Ireland
  3. 3.Department of NeurologyBeaumont HospitalDublin 9Ireland

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