Background:
Amyotrophic Lateral Sclerosis (ALS) is a rare, fatal neurodegenerative disorder with nocurative treatment characterized by degeneration of motor neurons involving a progressiveimpairment of motor and respiratory functions. Most patients die of ventilator respiratoryfailure. Caregivers have a great influence on the patient"s quality of life as well as on thequality of care. Home influence of the caregiver on patient care is notable. To date, no studyhas investigated how psychological issues of caregivers would influence respiratory variablesof ALS patients. The study aimed at finding out if there is a relationship between therespiratory function of ALS patients and the level of distress of their caregivers.
Methods:
A cross-sectional study was conducted to investigate respiratory issues (PCF and FVC) andthe perception of social support of ALS patients. Caregivers filled questionnaires about traitanxiety, depression, and burden of care. Forty ALS patients and their caregivers wererecruited.
Results:
FVC and PCF were positively related to patient perception of social support and negativelyrelated to caregiver anxiety, depression, and burden.DiscussionThe distress of ALS caregivers is related to patient respiratory issues. The first and moreintuitive explanation emphasizes the impact that the patient’s clinical condition has withrespect to the caregiver. However, it is possible to hypothesize that if caregivers feelpsychologically better, their patient’s quality of life improves and that a condition of greaterwell-being and relaxation could also increase ventilatory capacity. Furthermore, caremanagement could be carried out more easily by caregivers who pay more attention to thepatient’s respiratory needs.
Conclusion:
Patient perception of social support and caregiver distress are related to respiratory issues inALS.