Gastroparesis Patients Willing to Take Massive Risks for Cure
Gastroparesis is a motility disorder in which food does not move from the stomach into the intestine as quickly as it should (delayed gastric emptying). It occurs when the pair of nerves that connects the brainstem to the gastrointestinal tract (vagus nerve) is damaged or does not function properly. This makes it difficult for the brain to send messages through the nervous system that ensure the muscles in the stomach work normally. Consequently, food remains in the stomach for much longer than it should, leading to symptoms such as nausea, vomiting, reduced appetite, abdominal pain, heartburn, regurgitation, bloating, muscle weakness, night sweats, and feeling full after consuming small amounts of food. In addition, these symptoms can lead to weight loss and nutritional deficiencies by making it difficult for those affected to consume enough food. Another serious complication is periods of very low blood sugar while the food remains in the stomach and very high blood sugar when it finally makes it to the small intestine. The most common cause of gastroparesis is diabetes (type 1 or type 2), making these rapid blood sugar changes even more dangerous.
The Difficulties of Gastroparesis
Gastroparesis often has a negative impact on many areas of life. The constant debilitating symptoms and the inability to eat normal meals can make patients feel depressed and anxious and can interfere with their ability to work and participate in social activities. It is a difficult condition to treat, with few effective medications and surgeries. There are some medications available that cause the stomach to empty more rapidly, but these aren’t always effective. Typically, patients must rely on treating the symptoms, such as nausea, rather than the cause.
The Patient Perspective
Researchers in the United States sent out a questionnaire with a focus on medication risk-taking behaviour to patients who have gastroparesis.1 They also asked questions about demographics, types and severity of symptoms, the kinds of treatments respondents had sought to improve their gastroparesis, side effects from these treatments, comorbid conditions, and fears and concerns about gastroparesis. They received completed surveys from 103 individuals with a mean age of 47.9 years, 76% of whom were women. Diabetes was the underlying cause of gastroparesis in 37% of respondents. Other causes included a preceding viral or bacterial infection and an unknown cause (idiopathic).
When it came to symptoms, patients rated nausea (37%), abdominal pain (27%), and vomiting (15%) as the most disruptive. They also reported that the frequency and unpredictability of symptoms were very bothersome. Many respondents were worried about the long-term effects of gastroparesis, with 30% concerned that gastroparesis would shorten their lives, and 44% worried that their symptoms would never go away.
Anything for a Cure
One of the questions they asked brought up a hypothetical drug that would either cure the patient’s gastroparesis – if they took it for the remainder of their life – or would cause a sudden and painless death in their sleep. The question specified that the prescribing physician would have no way of knowing how each patient would react to the drug but would support each individual’s decision. The question then proceeded to list a percentage chance of cure versus death, and patients were asked to decide whether or not they would take the risk. The respondents reported that they would accept a median 13% chance of sudden death for an 87% chance to cure their symptoms using this hypothetical medication. However, when broken down by the severity of their gastroparesis symptoms, those who rated their symptoms as mild would risk a median 6% chance of death, those with moderate gastroparesis a median 8% chance, and those with severe symptoms were willing to take a staggering 18% chance of death. In addition, individuals who were most concerned about the long-term affects of gastroparesis, such as that it would shorten their lifespan or cause cancer, were most willing to take larger risks for a cure.
The researchers also asked questions about general risk-taking behaviour and impulsivity, employment status, annual income, presence of health or life insurance, and current medication use, and found no significant association between these aspects and an individual’s willingness to take medication risks. There were also no significant differences between women and men.
Conclusion
Gastroparesis is a serious condition that significantly affects quality of life. Many patients are willing to take stark risks if it means that they could be cured. In addition, gastroparesis is considered common, affecting approximately 4% of the population,2 whereas a rare disease affects less than 0.05% of the population. We greatly need more safe and effective treatment options for this condition, so that patients don’t feel like they need to take major risks to get relief.