渡邉 賢治

Objectives: Treatment guidelines recognize the importance of gastric tube (G-tube) placement in amyotrophic lateral sclerosis (ALS) patients. However, the effects of a G-tube on the patients’ quality of life (QOL) are still unclear. Previous studies have revealed that ALS patients’ quality of life is determined by their social values. Therefore, this review investigated the sociological outcomes reported by G-tube studies that investigated the QOL of patients living with ALS. Methods: The literature review was conducted through PubMed (2016–2020) using the keywords “ALS” and “QOL.” Articles written in English were included, while a review article was excluded. Of 95 studies that were found through the search, four from Australia, Brazil, the Netherlands, and the US met the review’s criteria. Results: The studies investigated QOL using questionnaires and interviews. One study suggested that using a G-tube increased QOL, two stated that the G-tube maintained QOL, and one found that the G-tube decreased QOL. In Australia and Brazil, patients did not have timely access to doctors when they wished to start a G-tube, and made patients’ QOL decrease. In all four countries, patients were reluctant to use a G-tube when their families were responsible for its care. Finally, in Australia, Brazil, and the Netherlands in which eating is a symbol of well-being, the G-tube signified powerlessness instead of a tool for prolongation of survival. However, family members and healthcare providers in these countries reminded patients of their eating difficulties, which cost time and fatigued the patients. For patients who received this feedback, the G-tube was more positively perceived. Conclusions: The effects of G-tubes cannot be adequately measured by a single assessment like QOL. Nurses must also understand ALS patients’ values, including their sociocultural influences. KEYWORDS: Amyotrophic Lateral Sclerosis, Quality of Life, Sociological effects

[BACKGROUND] ALS guidelines recognize the importance of establishing a scale for the quality of life (QOL) of amyotrophic lateral sclerosis (ALS) patients: the patient-reported outcome measure (PROM). However, guidelines do not question but rather treat proxies’ answers to the questionnaire in the same manner as an ALS patient’s reply because the literal meaning of proxy suggests that proxy refers to a person who knows the ALS patient well (family member, nurses, or care givers). [AIM] To review all answers obtained from proxies and identify improvements for ALS patient QOL outcomes. [METHODOLOGY] The literature review is conducted through PubMed (2010–2020): based on the keywords “ALS” and “QOL.” [RESULTS] Reviewing 208 studies, 19 met the criteria for this study. However, three issues arise. First, 16 of 19 studies do not describe whether participants included proxies at all. The remaining three studies do not reveal participant details (total number of proxy participants, proxy ages, and health status of proxies, such as back-pain or depression). Second, all 19 studies handle the respondents the same way, which means that responses from ALS patients and responses from proxies are equal, and these respondents answer the following questionnaires: Europol 5 dimensions 5-level (EQ-5D-5L), Swallowing Quality of Life questionnaire (SWAL-QOL), and the original numerical rating scale (eleven-point format, 0–10). These studies conclude a correlation between the ALS functional rating scale-revised (ALSFRS-R), penetration-aspiration scale (PAS) scores, and the wish of patients to discuss suicide with a physician. Third, these studies do not refer to confound variables that proxy responses might include their biases. Patients tend to compare themselves to other patients, whereas proxies make comparisons between the patient’s current and past condition. [CONCLUSION] Regarding ALS patient-reported outcomes, ALS patient answers are never the same as answers from proxies. Re-evaluating the measurement for ALS QOL is a necessity in scaling PROM. Keywords: amyotrophic lateral sclerosis (ALS), quality of life (QOL), proxy, patient-reported outcome measure (PROM)