A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options
Introduction
The amyotrophic lateral sclerosis (ALS) care team, composed of neurologists, pulmonologists, nurses, occupational therapists, physical therapists, speech pathologists, psychologists, social workers, representatives from the Muscular Dystrophy Association, and community volunteers, can play a significant role in the care not only of the patient with ALS but also of the patient's caregiver. It is important to understand and distinguish between the attitudes, attributes, and psychosocial characteristics of both patients and caregivers to plan and provide effective treatment interventions with the aim of improving the quality of life (QOL) for both groups. While studies have addressed the ALS patient's psychological status [1], quality of life [2], [3], [4], [5], and attitudes toward treatment options [6], we have found only a few studies that compared patients' and caregivers' viewpoints on these issues.
Rabkin et al. [7] contrasted ALS patients and caregivers on measures of clinical depression, anxiety, and quality of life. Neither group exhibited elevated rates of clinical depression. Gelinas et al. [8] compared quality of life between 7 ventilator-dependent ALS patients and 15 caregivers. The instruments they used were unable to measure patients' quality of life due to the severity of their disability. In comparing ALS patients' and caregivers' ratings of suffering, pain, and quality of life, Ganzini et al. [9] found a greater concordance between the two groups on suffering and pain than on quality of life. In another study, Ganzini et al. [10] compared ALS patients' and caregivers' attitudes toward assisted suicide and found a 73% agreement in opinion between the two groups.
In a qualitative study, Bolmgjö and Hermerèn [11] compared eight ALS patients and eight ALS caregivers on their perceptions and experiences of ALS and found differences in some areas. Jenkinson et al. [12] gathered data on quality of life and caregiver stress from patients in Europe and concluded that any treatment that can reduce the burden of ill health upon patients is likely to have beneficial effects upon caregivers. A study in Germany [13] surveyed ventilated ALS patients and their caregivers and indicated 89% of patients and 80% of caregivers would make the same treatment choice again.
We developed the following study that compared ALS patients and caregiver attitudes on a variety of measures, including quality of life, depression, palliative care, and psychosocial issues.
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Methods
We analyzed responses from 27 ALS patients and 19 caregivers who arrived at the Department of Neurology, Baylor College of Medicine, Vicki Appel MDA, ALS Clinic, from July 2000 through September 2001 and who completed all of the study measures. All of the caregivers were spouses or family members and were familiar with the patient's functioning. At baseline, two patients used a PEG, four patients used BIPAP, and no patients used invasive ventilation.
Approval for the study was granted by the
Results
Twenty-seven ALS patients (18 men and 9 women) and nineteen caregivers (9 men and 10 women) participated in the study by completing the written instruments and questionnaires and agreeing to the measurements of physical strength and functioning. The mean age of the patients was 57.2 (range 34–81) years, and the mean age of the caregivers was 56.9 (range 28–82) years (Table 1). Twenty-six percent of the patients and 42% of the caregivers had college or graduate degrees. Seventy percent of
Discussion
The assessment of factors contributing to QOL in ALS patients and ALS caregivers needs to be multifaceted and include physical changes, financial and work concerns, social and leisure activities, spirituality/religious issues, and family/friends/community attitudes and behaviors that affect both patients and caregivers.
When we matched patients' AALS scores with scores on the BDI-II, the four patients with severe physical disability were generally not depressed. Their BDI-II scores fell within
Acknowledgments
The authors gratefully acknowledge the ALS patients, their families, and their caregivers who made this study possible.
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