Objective: We proposed a novel palliative care scale (Amyotrophic Lateral Sclerosis Palliative Care Scale: ALSPCS) for patients with ALS, and analyzed the suffering reported by patients.
Methods: Thirty-one patients participated in the study. The ALSPCS has 15 items to evaluate physical and psychological suffering; patients scored their subjective suffering on a scale of 0-5 for each item. This study analyzed 13 of 15 items.
Results: The mean scores obtained from the patients were as follows: 'dyspnea', 2.5; 'pain', 2.4; 'restlessness', 2.4; 'thirst', 3.0; 'burning sensation', 2.0; 'choking', 2.0; 'nausea', 0.4; 'constipation', 1.5; 'insomnia', 2.5; 'anxiety', 3.5; 'loneliness', 2.4; 'irritation', 2.1; and 'communication difficulty', 2.3. Multiple correlation analysis using Spearman's rank correlation coefficient showed significant correlations of dyspnea with restlessness, thirst, burning sensation and anxiety; of restlessness with dyspnea, thirst, loneliness and irritation; and of anxiety with dyspnea, thirst and loneliness (P < 0.0038 after Bonferroni's correction). In the principal component analysis, every item showed a positive loading value in the first principal component. Dyspnea, restlessness, thirst, anxiety, loneliness and irritation had loading values >0.7; thus, these symptoms might be the main features in ALS patients. The total scores or each ALSPCS score showed no significant association with post-assessment survival period.
Conclusion: This study, using ALSPCS, showed that the subjective suffering of ALS patients was variable and strongly correlated with each other. Appropriate and comprehensive assessment of physical and psychological affliction with ALSPCS could be potentially useful in verifying the effectiveness of palliative care for end-of-life stage ALS patients in the future.
Keywords: amyotrophic lateral sclerosis; dyspnea; end-of-life care; palliative care scale; suffering.