| Background: Amyotrophic lateral sclerosis(ALS)is a degenerative disease of the nervous system,mainly involving upper and lower motor neurons.Its clinical manifestations are mainly progressive muscle weakness and atrophy,fasciculation,bulbar paralysis and pyramidal tract sign.Currently,there is a lack of effective drugs.With the progress of the disease,patients may have dysphagia,malnutrition and other clinical symptoms,which seriously reduces the quality of life and long-term prognosis of patients.As an effective nutritional support method,percutaneous endoscopic gastrostomy(PEG)has been proved to improve malnutrition and reduce the risk of death in ALS patients.However,the clinical work found that the use of fistulation in ALS patients is not optimistic.For the current status of PEG use in ALS patients in China and the factors that affect the treatment decision of patients,there are few relevant studies at home and abroad,which need further investigation.Objective: To investigate the current situation of PEG use in ALS patients and the related factors affecting the decision-making of PEG in ALS patientsMethods: First of all,a retrospective cohort study was conducted to collect the clinical data of ALS patients registered in Yichang First People’s Hospital from April 2021 to November 2022,and observe the general situation of patients who have used PEG and those who have recommended PEG and meet the operation indications of PEG.At the same time,according to the grouping of PEG operation or not,the follow-up clinical data of patients were collected for comparative analysis.Subsequently,a cross-sectional study was conducted to sample the population of ALS patients.The questionnaire was distributed and collected to collect the general information of patients,clinical characteristics and treatment selection tendency,and the collected questionnaire data was sorted out to reach a conclusion.Results : In the retrospective study,patients were divided into patients who had undergone PEG(treatment group)and patients who had not undergone surgical treatment(control group),with 42 in the treatment group and 53 in the control group.A total of 45 eligible patient data were collected after a follow-up of 6 months.There was no significant difference in age(P=0.361)and gender(P>0.05)between the two groups.In terms of disease course,the PEG group was higher than the control group,and the difference in results was statistically significant(P<0.05).The ALSFRS-R score(P<0.0001)and FVC(P=0.0003)of patients in the treatment group were significantly lower than those in the control group,while the CNS-BFS(P<0.0001)score was higher than that in the control group.The results were statistically significant.In the cross-sectional study,a total of 166 valid questionnaires(101males and 65 females)were retrieved,and the overall utilization rate of PEG in ALS patients was 13.2%(22/166).The main channel for patients to receive PEG-related knowledge is We Chat(63.8%),followed by doctor’s lectures during hospitalization(28.9%),and the third factor is patients’ self-searching online(26.5%).Among them,60.2% of the patients tend to use We Chat,and 54.2% of the patients can receive face-to-face lectures to understand PEG-related information.The main reason for the patient’s final decision to refuse PEG was the fear of postoperative nursing and feeding difficulties(46.7%),the fear of affecting daily life(43.4%),and the fear of anesthesia leading to disease progression(33.3%).Regression analysis showed that the existence of cough and dysphagia in drinking water had a significant impact on patients’ decision-making(OR 18.636,3.717-9.3444 P<0.001;OR4.899,1.346-17.829 P=0.016).At the same time,the doctor’s recommendation was also significantly related to the patient’s choice(OR 6.70,1.778-25.251 P=0.005).Conclusion:1.The proportion of ALS patients receiving PEG in this study system is relatively low,and patients receiving PEG treatment have a more stable condition;2.The presence of coughing and swallowing difficulties in drinking water,as well as the recommendation of doctors,are factors that affect patients’ decision-making on PEG. |