OBJECTIVE: No other disease creates a greater psychological impact than amyotrophic lateral sclerosis (ALS). As this disease rapidly destroys upper and lower motor neurons, while sparing cognitive functions, sufferers report psychological correlates of hopelessness as well as high levels of perceived stress and depression. Because psychological symptoms and physical pain are often overlooked in ALS patients, there is a need to explore this life-claiming disease. Therefore, the purpose of this study was to compare end-stage ALS patients with other hospice/palliative care populations, with an additional goal to provide an empirical basis for care management in the face of progressive physical decline. DESIGN: The design was a secondary analysis of data from a previous study that integrated a causal model and a grounded theory approach. The present study was a comparative analysis of three groups of end-of-life patients (AIDS, ALS, OTHER) for differences in pain, physical function, and psychological affect/adaptation. POPULATION: The sample was 10 AIDS patients(Group I), six ALS patients(Group II0, and five patients(Group III)with other end-stage,non-cancer diseases (cardiac, gastric, renal) for a total of 21 subjects. Due to unequal group variance, a larger group of cancer patients (n=76)was excluded from the analysis. The inclusion criteria were: 30 years of age or older, English speaking, evidence of cognitive function, signed hospice consent, and willing consent to participate. Human subjects approval was secured from the sponsoring university, the two participating hopsice programs, and informed consent was secured. The setting was the subjects' homes. The mean ages for the three groups were: Group I (37.1), Group II (56.2), and Group III (72). The group genders were: Group I (9 males, 1 female), Group II (3 males, 2 females), and Group III (3 females, 2 males). VARIABLES STUDIED: The independent factor in this one-way analysis of variance was end-of-life diagnosis. The dependent variables were pain, physical function, and psychological correlates of well-being and adaptation. The variables were measured by the McGill-Melzack Pain Questionnaire Part I (pain), the Karnofsky Performance Status Scale (physical function), The Affect Balance Scale (psychological well-being), and the Life Closure Scale (psychological adaptation), with two measured dimensions of derived meaning and maintained self-integrity. METHODS: SPSSX computations of analysis of variance (ANOVA) was performed on Groups I,II, and III with the LCS, ABS (total score), MPQ-Part I (total score) and KPS to test for group differences. A significance level of p<.05 was set for the test of homogeneity of variance. Post hoc tests of Scheffe and Duncan range tests were computed. Due to the small sample size, a two-tail t test was performed to reduce the possibility of a type II error. The qualitative component captured spontaneous reactions and responses during testing, which were recoreded, coded, and categorized. FINDINGS: Statistically significant differences were found for psychological adaptation between Groups II (ALS) and Groups III (OTHER)on the LCS (F[2,18]=4.3,p=.03). There were no statistically significant differences among the groups on measures of pain (MPQ), physical function (KPS), and psychological well-being (ABS). A Scheffe post hoc test at the .05 level and a Duncan range test at the .05 level confirmed a significant difference between the mean scores of the ALS group (m=58) and the OTHER group (M=76) on the LCS. The t test analysis reported a pooled variance estimate between Groups II and III that was significant (t9=4.1,p=.003). CONCLUSION: There was a significant difference between ALS patients and subjects with other end-stage disease on a test of psychological adaptation. Low scores on the LCS indicated the difficulty of ALS patients in maintaining self-integrity and in deriving meaning from illness. Qualitative data supported the psychological plight of ALS patients with fears of impending death, feelings of aloneness, and concerns about caregiver burden. IMPLICATIONS: Although limited by its small sample size, this study has the potential to add to professionals' understanding of the psychological impact of ALS. It also points to the need of hospice/palliative care providers to address the psychological ramifications of this destructive disease upon both the sufferer and the caregiver.
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