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Respiratory function of people with amyotrophic lateral sclerosis and caregiver distress level: a correlational study

Francesco Pagnini1*, Paolo Banfi23, Christian Lunetta2, Gabriella Rossi2, Gianluca Castelnuovo14, Anna Marconi2, Federica Fossati2, Massimo Corbo2 and Enrico Molinari14

Author Affiliations

1 Department of Psychology, Catholic University of Milan, Milan, Italy

2 NEuroMuscular Omnicentre (NEMO), Fondazione Serena Onlus, Ospedale Niguarda Cà Granda, Milan, Italy

3 Department of Neuromuscular Disease, Fondazione Don Gnocchi, Milan, Italy

4 Istituto Auxologico Italiano Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS), Psychology Research Laboratory, San Giuseppe Hospital, Verbania, Italy

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BioPsychoSocial Medicine 2012, 6:14  doi:10.1186/1751-0759-6-14

Published: 21 June 2012



Amyotrophic Lateral Sclerosis (ALS) is a rare, fatal neurodegenerative disorder with no curative treatment characterized by degeneration of motor neurons involving a progressive impairment of motor and respiratory functions. Most patients die of ventilator respiratory failure. Caregivers have a great influence on the patient”s quality of life as well as on the quality of care. Home influence of the caregiver on patient care is notable. To date, no study has investigated how psychological issues of caregivers would influence respiratory variables of ALS patients. The study aimed at finding out if there is a relationship between the respiratory function of ALS patients and the level of distress of their caregivers.


A cross-sectional study was conducted to investigate respiratory issues (PCF and FVC) and the perception of social support of ALS patients. Caregivers filled questionnaires about trait anxiety, depression, and burden of care. Forty ALS patients and their caregivers were recruited.


FVC and PCF were positively related to patient perception of social support and negatively related to caregiver anxiety, depression, and burden.


The distress of ALS caregivers is related to patient respiratory issues. The first and more intuitive explanation emphasizes the impact that the patient’s clinical condition has with respect to the caregiver. However, it is possible to hypothesize that if caregivers feel psychologically better, their patient’s quality of life improves and that a condition of greater well-being and relaxation could also increase ventilatory capacity. Furthermore, care management could be carried out more easily by caregivers who pay more attention to the patient's respiratory needs.


Patient perception of social support and caregiver distress are related to respiratory issues in ALS.

Quality of life; Bio-psycho-social interaction; Amyotrophic lateral sclerosis; Non-invasive ventilation; Health care; Caregivers