Weight Loss and Dysphagia in Patients With ALS
Weight Loss and Dysphagia in Patients With ALS
56.2% (n = 68) of the patients in our cohort reported about weight loss. Weight loss was associated with a significantly worse ALSFRS_R score and also with higher depression (BDI, not significant) and significantly lower QOL scores (SF36) regarding the subscales "physical functioning" and "vitality" (Figure 1A and B). Multiple regression analysis identified the ALSFRS_R score as confounding factor, showing that the differences in BDI and "physical functioning" were probably caused by the discrepancy in the ALSFRS_R. But the difference in the SF36 subscale "vitality" between patients with and without weight loss remained highly significant (Table 3A), which means that patients with weight loss feel more often exhausted, tired and spiritless, regardless of the disease stage. Multiple regression analysis showed that this influence of weight loss on vitality was independent of respiratory distress which had a significant effect on vitality as well (Table 3B).
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Figure 1.
Mean scores of ALSFRS_R and SF36 questionnaire of patients without and with weight loss and impact of high calorie supplements/PEG. Mean scores of ALSFRS_R (A) and SF36 questionnaire (B) of patients without and with weight loss. The latter group showed significantly lower scores at the ALSFRS_R and the SF36 subscales "physical functioning" and "vitality". 58.3% of patients consuming high calorie supplements and 76.9% of patients who had undergone PEG reported subsequent weight stabilization or even weight gain (C and D). * p < 0.05, ** p < 0.01.
33.8% (n = 23) of patients with weight loss consumed high calorie supplements and 60.8% (n = 14) of these reported subsequent weight stabilization or even weight gain (Figure 1C). 25.5% (n = 13) of patients with dysphagia had undergone PEG; 76.9% (n = 10) of these patients declared weight stabilization or weight gain (Figure 1D) and 84.6% (n = 11) stated an improvement of QOL after PEG insertion. Remarkably, no patient indicated deterioration of QOL after PEG insertion (although this is often suspected by patients and relatives prior to the procedure).
38.2% (n = 26) of patients with weight loss did not suffer from dysphagia (according to self-reported statement and ALSFRS_R). This patient group did not differ from patients without weight loss regarding ALSFRS_R (total and bulbar) and depression (BDI) nor did they report changes in their eating habits. Patients with dysphagia on the other hand showed significantly lower ALSFRS_R scores, mainly due to the bulbar subscore (Figure 2A). The prevalence of fasciculations in patients with weight loss without dysphagia was equal to patients without weight loss. They did, however, more often declare increased respiratory efforts compared to patients without weight loss (Figure 2B).
(Enlarge Image)
Figure 2.
Comparison of patients with weight loss with/without dysphagia and patients without weight loss. Patients with weight loss and dysphagia differed significantly from patients without weight loss in BDI and ALSFRS_R (total and bulbar). Patients with weight loss without dysphagia, on the other hand, did not have higher BDI/lower ALSFRS_R scores than patients without weight loss (A). Weight loss in patients without dysphagia therefore does not seem to be directly related to a more advanced disease stage or increased depression. Patients with weight loss and dysphagia significantly more often declared increased respiratory work than patients without weight loss. Patients with weight loss without dysphagia showed a tendency towards increased respiratory work compared to patients without weight loss (p = 0.12). There were no differences regarding frequency of fasciculations between the groups (B). Follow-up by telephone two years after the initial survey highlighted the prognostic value of weight loss: Kaplan-Meier survival analysis for ALS patients with and without weight loss revealed significantly shorter survival of ALS patients with weight loss (log rank p = 0.001) (C).
The telephone survey after two years showed that weight loss was a strong negative prognostic factor: Kaplan- Meier survival curves of patients with and without weight loss showed significantly shorter survival of patients with weight loss (log rank p = 0.001) (Figure 2C).
54.5% (n = 67) of the patients stated regular intake of other (not high-calorie) dietary supplements (e.g. vitamins). 44.8% (n = 30) of them consumed more than one supplement, some up to five simultaneously or preparations containing up to seven ingredients. Overall 23 different supplements were mentioned (Table 4). Analysis of the ALSFRS_R showed an inverse correlation between disease severity and supplement intake (i.e. patients taking dietary supplements were significantly less impaired than those who did not) (Figure 3A). There also was a significant difference in the BDI scores as well as the SF-36 subscales "physical functioning", "vitality" and "social functioning" between the two groups: patients with supplement intake were significantly better regarding mood and QOL (Figure 3B and C). However, multiple regression analysis again showed that these differences are mainly attributable to the discrepancies in disease severity as assessed by the ALSFRS_R (=confounding factor). Only the difference in "social functioning" between patients with and without supplement intake remained highly significant, showing an independent influence of both supplement intake and ALSFRS_R (Table 3C). Hence patients using dietary supplements are feeling less affected in their "social functioning" which means contact or visit family members, friends and neighbours. However it could also be the other way around, meaning that patients with a more active social life are more likely to start taking dietary supplements. At the follow-up telephone interview two years after the first survey, 42.9% of the patients who had initially reported use of dietary supplements now declared that they had stopped any supplement intake.
(Enlarge Image)
Figure 3.
Mean scores of ALSFRS-R, BDI and SF36 of patients with and without intake of dietary supplements. Mean scores of ALSFRS-R (A), BDI (B) and SF36 (C) of patients with and without intake of other (not high calorie) dietary supplements. Supplement intake was associated with significantly higher scores at the ALSFRS_R and the SF36 subscales "physical functioning", "vitality" and "social functioning" and significantly lower scores in BDI. * p < 0.05.
Results
56.2% (n = 68) of the patients in our cohort reported about weight loss. Weight loss was associated with a significantly worse ALSFRS_R score and also with higher depression (BDI, not significant) and significantly lower QOL scores (SF36) regarding the subscales "physical functioning" and "vitality" (Figure 1A and B). Multiple regression analysis identified the ALSFRS_R score as confounding factor, showing that the differences in BDI and "physical functioning" were probably caused by the discrepancy in the ALSFRS_R. But the difference in the SF36 subscale "vitality" between patients with and without weight loss remained highly significant (Table 3A), which means that patients with weight loss feel more often exhausted, tired and spiritless, regardless of the disease stage. Multiple regression analysis showed that this influence of weight loss on vitality was independent of respiratory distress which had a significant effect on vitality as well (Table 3B).
(Enlarge Image)
Figure 1.
Mean scores of ALSFRS_R and SF36 questionnaire of patients without and with weight loss and impact of high calorie supplements/PEG. Mean scores of ALSFRS_R (A) and SF36 questionnaire (B) of patients without and with weight loss. The latter group showed significantly lower scores at the ALSFRS_R and the SF36 subscales "physical functioning" and "vitality". 58.3% of patients consuming high calorie supplements and 76.9% of patients who had undergone PEG reported subsequent weight stabilization or even weight gain (C and D). * p < 0.05, ** p < 0.01.
33.8% (n = 23) of patients with weight loss consumed high calorie supplements and 60.8% (n = 14) of these reported subsequent weight stabilization or even weight gain (Figure 1C). 25.5% (n = 13) of patients with dysphagia had undergone PEG; 76.9% (n = 10) of these patients declared weight stabilization or weight gain (Figure 1D) and 84.6% (n = 11) stated an improvement of QOL after PEG insertion. Remarkably, no patient indicated deterioration of QOL after PEG insertion (although this is often suspected by patients and relatives prior to the procedure).
38.2% (n = 26) of patients with weight loss did not suffer from dysphagia (according to self-reported statement and ALSFRS_R). This patient group did not differ from patients without weight loss regarding ALSFRS_R (total and bulbar) and depression (BDI) nor did they report changes in their eating habits. Patients with dysphagia on the other hand showed significantly lower ALSFRS_R scores, mainly due to the bulbar subscore (Figure 2A). The prevalence of fasciculations in patients with weight loss without dysphagia was equal to patients without weight loss. They did, however, more often declare increased respiratory efforts compared to patients without weight loss (Figure 2B).
(Enlarge Image)
Figure 2.
Comparison of patients with weight loss with/without dysphagia and patients without weight loss. Patients with weight loss and dysphagia differed significantly from patients without weight loss in BDI and ALSFRS_R (total and bulbar). Patients with weight loss without dysphagia, on the other hand, did not have higher BDI/lower ALSFRS_R scores than patients without weight loss (A). Weight loss in patients without dysphagia therefore does not seem to be directly related to a more advanced disease stage or increased depression. Patients with weight loss and dysphagia significantly more often declared increased respiratory work than patients without weight loss. Patients with weight loss without dysphagia showed a tendency towards increased respiratory work compared to patients without weight loss (p = 0.12). There were no differences regarding frequency of fasciculations between the groups (B). Follow-up by telephone two years after the initial survey highlighted the prognostic value of weight loss: Kaplan-Meier survival analysis for ALS patients with and without weight loss revealed significantly shorter survival of ALS patients with weight loss (log rank p = 0.001) (C).
The telephone survey after two years showed that weight loss was a strong negative prognostic factor: Kaplan- Meier survival curves of patients with and without weight loss showed significantly shorter survival of patients with weight loss (log rank p = 0.001) (Figure 2C).
54.5% (n = 67) of the patients stated regular intake of other (not high-calorie) dietary supplements (e.g. vitamins). 44.8% (n = 30) of them consumed more than one supplement, some up to five simultaneously or preparations containing up to seven ingredients. Overall 23 different supplements were mentioned (Table 4). Analysis of the ALSFRS_R showed an inverse correlation between disease severity and supplement intake (i.e. patients taking dietary supplements were significantly less impaired than those who did not) (Figure 3A). There also was a significant difference in the BDI scores as well as the SF-36 subscales "physical functioning", "vitality" and "social functioning" between the two groups: patients with supplement intake were significantly better regarding mood and QOL (Figure 3B and C). However, multiple regression analysis again showed that these differences are mainly attributable to the discrepancies in disease severity as assessed by the ALSFRS_R (=confounding factor). Only the difference in "social functioning" between patients with and without supplement intake remained highly significant, showing an independent influence of both supplement intake and ALSFRS_R (Table 3C). Hence patients using dietary supplements are feeling less affected in their "social functioning" which means contact or visit family members, friends and neighbours. However it could also be the other way around, meaning that patients with a more active social life are more likely to start taking dietary supplements. At the follow-up telephone interview two years after the first survey, 42.9% of the patients who had initially reported use of dietary supplements now declared that they had stopped any supplement intake.
(Enlarge Image)
Figure 3.
Mean scores of ALSFRS-R, BDI and SF36 of patients with and without intake of dietary supplements. Mean scores of ALSFRS-R (A), BDI (B) and SF36 (C) of patients with and without intake of other (not high calorie) dietary supplements. Supplement intake was associated with significantly higher scores at the ALSFRS_R and the SF36 subscales "physical functioning", "vitality" and "social functioning" and significantly lower scores in BDI. * p < 0.05.