The willingness of patients with gastroparesis to take risks with medications

Abstract

Summary Background Gastroparesis has a significant negative impact on patients’ quality of life. Only one medication is approved for gastroparesis and it is associated with a significant risk of side effects. Aim To assess the willingness of patients to take risks associated with medications to treat gastroparesis symptoms. Methods We developed a questionnaire to assess medication risk‐taking behaviour in patients identified as having documented gastroparesis (consistent symptoms, normal upper endoscopy, delayed gastric emptying). The survey assessed demographics, symptoms, medication use, anxiety, depression and impulsivity. A standard reference gamble evaluated respondents’ willingness to take medication risks. Results Two hundred seven questionnaires were mailed to patients, 103 questionnaires were completed. Seventy‐six percent were female; the mean age was 48 years; average duration of gastroparesis symptoms was 10 years. Self‐reported symptom severity was severe in 52% and moderate in 32%. Gastroparesis patients reported that they would accept a median 13.4% risk of sudden death to cure their symptoms using a hypothetical medication. Self‐reported gastroparesis symptom severity and Gastroparesis Cardinal Symptom Index scores correlated significantly with increased willingness to take risks associated with medications to treat gastroparesis, while anxiety was negatively associated. Conclusions Gastroparesis patients are willing to accept markedly high risks with a hypothetical medication to cure their symptoms. Patients with severe gastroparesis symptoms and higher Gastroparesis Cardinal Symptom Index scores were more willing to take these risks. This study, the first to quantify gastroparesis patients’ willingness to accept medication associated risks, should help clinicians through the complex maze of gastroparesis therapies and their associated risks and benefits.

Epidemiology and outcomes of gastroparesis, as documented in general practice records, in the United Kingdom

“…8 9 The impact of gastroparesis is such that, in one study, patients were willing to accept a median 13.4% risk of death to cure their symptoms using a hypothetical medication. 10 Despite these detrimental effects, epidemiological data on this disease are limited, and most studies have been conducted in referral settings. [11][12][13][14] The only true population-based epidemiological study, from Olmsted County, Minnesota, USA, estimated the standardised prevalence of gastroparesis to be 24.2 per 100 000 persons and the standardised incidence to be 6.3 per 100 000 person-years.…”

Childhood gastroparesis is a unique entity in need of further investigation

“…15,24 GP patients with psychiatric co-morbidities tend to experience longer hospital stays and reduced work hours. 25 Psychiatric comorbidities are less common in children with GP compared with adults. In one study (n = 239), they were found in 28% of pediatric patients with GP (Table 1).…”

Pathophysiology and management of diabetic gastroenteropathy

“…70 A survey among people with gastroparesis observed a correlation between willingness to accept potentially lethal side effects and symptom severity. 76 This emphasizes how burdensome GI complications are.…”