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Disparities in perceptions of distress and burden in ALS patients and family caregivers

From the Feinberg School of Medicine (E.E. Adelman), Northwestern University, Chicago, IL, Gertrude H. Sergievsky Center (Dr. Albert, T. Tider and I. O’Sullivan), Department of Neurology and Eleanor and Lou Gehrig MDA/ALS Center (Dr. Albert, M.L. Del Bene), and Department of Psychiatry (Dr. Rabkin), Columbia University, New York.

Address correspondence and reprint requests to Dr. S.M. Albert, Gertrude H. Sergievsky Center, PH-19, 630 W. 168 St., New York, NY 10032; e-mail: sma10{at}columbia.edu

Objectives: To examine agreement between end-stage ALS patients and their family caregivers on indicators of physical and psychological status at the end of life.

Methods: Patient–caregiver pairs completed monthly interviews in patient homes. Patients were asked to rate their current pain, energy, suffering, depression, control over ALS, optimism, interest in hastened death, weariness from ALS, will to live, and how burdened they thought caregivers were on Visual Analogue Scales. Caregivers completed identical ratings of patients as well as a measure of their own burden. Both independently completed the ALS Functional Rating Scale–Rev. (ALSFRS-R), a measure of patient disability and physical function.

Results: A total of 69 patient–caregiver pairs participated. For measures of physical function, ranged from 0.49 to 0.83, indicating moderate to excellent agreement. Patient and caregiver composite ALSFRS-R scores were highly correlated (r = 0.92, p < 0.001). Agreement between patients and caregivers was high for ratings of patient pain, control over ALS, optimism, and will to live, and this level of agreement remained high over multiple assessments. In pairwise analyses, caregivers rated patients as having less energy, greater suffering, and greater weariness than patients indicated for themselves, whereas patients rated caregivers as more burdened than caregivers reported for themselves.

Conclusions: Caregivers can accurately report information about a patient’s physical function at the end of life. However, patients and caregivers each overestimated the psychosocial impact of the disease on the other.

Received October 17, 2003. Accepted in final form January 19, 2004.

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