A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options

Abstract

Objective: To compare amyotrophic lateral sclerosis (ALS) patients and their caregivers on measures of quality of life (QOL), depression, and their attitudes toward treatment options. Methods: Over a 14-month period, we analyzed responses from 27 ALS patients and 19 ALS caregivers as they arrived at the Department of Neurology, Baylor College of Medicine, Vicki Appel MDA, ALS Clinic, and those who completed the study measures. Patients were given the Appel ALS Rating Scale (AALS), the ALS Functional Rating Scale (ALSFRS), McGill Quality of Life Questionnaire Single-Item Scale (MQOL-SIS), and the Beck Depression Inventory-II (BDI-II). An internally generated scale of 1–7 was used to measure perception of emotional support, QOL for others (i.e., the patient's perception of the caregiver's QOL and the caregiver's perception of the patient's QOL), and experience of pain. Attitudes toward treatment options were assessed by yes/no/uncertain responses. Caregivers were administered all of the above measures except the AALS, ALSFRS, and pain scale. Percentage, mean, and standard deviation values were determined. Significance levels were also calculated. Results: Twenty-seven patients with a mean age of 57.2 (range 34–81) years and nineteen caregivers with a mean age of 56.9 (range 28–82) years completed the study. The patients were of moderate disease severity with a mean AALS total score of 76.3 (range 39–134) and a mean ALSFRS score of 28.4 (range 12–40). The mean rating of QOL for patients was 5.9 and the mean rating of QOL for caregivers was 5.7 (range 1–7). The patients reported slightly less depression (9.8) than their caregivers (10.7) (range 0–63). There was, however, no significant difference between patients and caregivers on scores of QOL and depression. Patients tended to overestimate caregivers' QOL by a small degree, whereas caregivers tended to underestimate the patients' QOL by a greater degree. Over one-half of both groups would consider percutaneous esophageal gastrostomy (PEG) placement. Patient and caregiver responses to the use of BIPAP differed. Though over half of both groups endorsed the idea of future BIPAP use, more patients (41%) than caregivers (5%) were uncertain. Only 3% of patients responded negatively compared to 32% of caregivers. Both groups were only minimally interested in future invasive ventilation. Discussion: Factors contributing to quality of life, depression, and attitudes toward treatment options need to be periodically explored with patients and caregivers throughout the course of the illness. Health care professionals should recognize that the needs and goals of the two groups might differ. For both patients and caregivers, health care professionals should provide education and opportunities for discussion centered on the issues followed by referrals and interventions appropriate to the situation.

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.