The dynamics of quality of life in ALS patients and caregivers.
BACKGROUND
Quality of life (QOL) in people with amyotrophic lateral sclerosis (ALS) and their caregivers may depend on disease progression, premorbid characteristics (e.g., personality or demographics), or idiosyncratic effects (e.g., life events unrelated to the disease). Furthermore, effects may differ for patients and caregivers; physical decline may impact the caregiver more than the patient.


OBJECTIVE
The present study examined QOL in ALS patients and their caregivers over the course of the illness.


METHODS
Longitudinal data from ALS patients (N = 55) and caregivers (N = 53) yielded estimates of the sources of and changes over time in total QOL as well as individual domains (psychological existential, physical, and social) as measured by the McGill Quality of Life Questionnaire.


RESULTS
For both patients and caregivers, about half of QOL variance emerged from stable individual differences. Passage of time did not affect QOL in patients, but total QOL and particularly QOL related to physical symptoms declined over time in caregivers. Gender was mostly unrelated to QOL in patients and caregivers, but younger caregivers had lower QOL across a number of domains.


CONCLUSIONS
Low QOL among ALS patients is likely due to pre-existing individual differences, whereas both individual differences such as demographics (e.g., age) and disease progression are likely to affect QOL among caregivers.
Roach
Abbey R
AR
Department of Psychology, University of Kentucky, 115 Kastle Hall, Lexington, KY 40506-0044, USA. arcahi0@uky.edu
Averill
Alyssa J
AJ
Segerstrom
Suzanne C
SC
Kasarskis
Edward J
EJ
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000451:nursing / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D018450:Disease Progression; D005260:Female; D006304:Health Status; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D010551:Personality; D011788:Quality of Life / Q000523:psychology*; D012016:Reference Values; D013997:Time Factors