Long-term course of gastrostomy nutritional management in patients with Duchenne muscular dystrophy: A retrospective cohort study

Abstract

Duchenne muscular dystrophy (DMD) is a progressive neuromuscular disease that commonly requires gastrostomy due to dysphagia. This study aimed to investigate the proportion of patients with DMD requiring gastrostomy and to assess the timing and outcomes of gastrostomy in patients with DMD to optimize perioperative care and improve long-term management. We conducted a retrospective cohort study by reviewing the medical records of patients with DMD treated between March 1991 and November 2023 at Kobe University Hospital. To identify risk factors for gastrostomy, Fisher's two-tailed test and logistic analysis were used to compare the gastrostomy (group G) and comparison group without gastrostomy (group C) groups. We identified patients >18 years with DMD. We excluded those without medical records from the last decade and those on nasogastric tube feeding. Among the 135 eligible patients, five (median age, 23 years) underwent percutaneous endoscopic gastrostomy (PEG; uptake rate, 3.7 %), and their data were analyzed for perioperative outcomes. Complications included ventilatory disturbances, aspiration pneumonia, and hemorrhagic shock. Two patients experienced significant postoperative complications, underscoring the high-risk nature of PEG in this population. Participants' postoperative weight changes varied significantly. The presence or absence of ventilatory management, cardiomyopathy treatment, scoliosis, and steroid treatment were examined as risk factors between groups G and C, but no significant differences were observed. This study highlights low gastrostomy usage among patients with DMD, with varying outcomes. Meticulous planning and early consideration of gastrostomy are crucial to enhance the quality of life and nutritional outcomes in these patients.

Keywords: Duchenne muscular dystrophy; Follow-up; Gastrostomy; Quality of life.