RESUMO
INTRODUCTION: Although the incidence of achalasia is low, the burden of suffering is high because it is a chronic incurable disease that predominantly affects young persons. This article aims to describe the impact of achalasia on health-related quality of life, patient cost burden, time dedicated to treatment, and work productivity. METHODS: Consecutive patients enrolled in a clinical trial comparing laparoscopic myotomy with pneumatic dilatation from 4 sites across Canada (whose clinical and manometric diagnosis was confirmed) were studied using standardized patient-reported outcomes instruments, including the Achalasia Severity Questionnaire (ASQ), the Medical Outcomes Study 36-item Short Form Questionnaire (SF-36), and the Gastrointestinal Disease-Specific Quality of Life (GIQLI) questionnaire. The authors also measured health care utilization. RESULTS: Questionnaires were completed by 54 patients (median age = 53.5 years; range = 25-78 years; 50.0% male). Patients had been experiencing symptoms for a mean of 4.5 years (standard deviation = 6.1), and 42.6% were on medication for symptom relief. Among them, 74.1% reported that their disease limited their lifestyle. Patients spent an average of CAD$30.70 a month on medication; 37.0% reported that their disease interfered with their work, and patients missed an average of 10.2 days per 6 months. Patients also spent an average of CAD$24.30 on transportation to and from each clinical appointment. CONCLUSION: Achalasia substantially limits the lifestyle of patients with the disease. It also implies a financial burden of care for patients and leads to decreased work productivity.