Patient Insight on Gastroparesis
James Lind Institute
November 2019 Report
Uncovering the symptoms and knowledge of gastroparesis among adults with diabetes, revealing astonishing results about non-diagnosis and ignorance. Gastroparesis symptoms in type2 diabetes.
Introduction
Gastroparesis symptoms in type2 diabetes.
James Lind Institute has learned that gastroparesis is a condition with debilitating symptoms that negatively impact the daily lives of those suffering from it. Few satisfactory treatments exist, so we decided to investigate the disease by asking our community members about their knowledge of and experiences with its symptoms. Existing literature highlights many interesting aspects of the disease, and we have chosen to emphasize the following:
- Long-standing diabetes is the most common known cause of gastroparesis
- Classic symptoms include nausea, stomach pain, vomiting, bloating, and early satiety
- Most patients report these symptoms as severe or very severe
- Most patients expect their health to deteriorate over time
- Most patients remain unsatisfied with the available treatments
- Let us present the findings from 1,045 answers from our community members with diabetes.
Gastroparesis is a Rare Diagnosis and an Unknown Disease Among Diabetics
- 0.8% of patients have a gastroparesis diagnosis.
- 1.2% of GPs suspect patients have gastroparesis.
- 21% of patients have heard of gastroparesis.
- 72% of patients have not heard of gastroparesis.
Gastroparesis Symptoms in Type2 Diabetes :
Among diabetics aged 30-70 years, only 1.2% have received a gastroparesis diagnosis, while another 0.8% report that their GP suspects they have the disease, totaling 2%. Furthermore, only 20% of patients are aware of gastroparesis.
Living with Chronic Illness vs. Living with an Undiagnosed Illness
Living with gastroparesis can feel like an insurmountable challenge. It is demoralizing, scary, isolating, and frustrating. However, living with an undiagnosed illness can be even worse. Based on the data from this survey, it is reasonable to assume that many people live with severe symptoms of gastroparesis without any explanation. In fact, as a study nurse, I can easily imagine the terror and anguish these individuals experience every day. Patients with these symptoms know something is wrong with their bodies, but if their GP or specialist doesn’t provide an answer, they continue living in ignorance.
Birgit Hauggaard, Study Nurse, James Lind Institute
Many Suffer from Severe Symptoms Without Diagnosis or Information
6% of diabetics aged 30-70 years experience severe symptoms of gastroparesis, but only a fraction are diagnosed. As a result, many patients live with painful symptoms without receiving any treatment. Existing literature suggests that early diagnosis provides fairly good treatment outcomes.
Women Are at Higher Risk for Gastroparesis
Our survey results confirm the well-known gender difference in gastroparesis diagnosis. Twice as many women as men have gastroparesis, especially in the high predictive value group with severe symptoms. This group consists of 69% women and 31% men.
Adults with Type2 Diabetes Seem to Be Overlooked as Potentially Having Gastroparesis
Despite severe symptoms of gastroparesis being just as common among type 2 diabetics as among type 1, very few type 2 patients are diagnosed or even suspected by their GP of having gastroparesis. Only a small percentage of people with type 2 have heard of the disease.
Patients with Severe Symptoms Often Consult a Physician Without Being Diagnosed
Among patients with severe symptoms, those consulting their GP or specialist are rarely diagnosed with gastroparesis. This is especially common among type 2 diabetics, where 43% consult a specialist, yet none receive a gastroparesis diagnosis. This finding highlights the need for improved communication about the symptoms of gastroparesis. Therefore, a targeted campaign for both patients and healthcare professionals is essential.
Symptoms Reported by Diabetics Aged 30-70 Years
The following symptoms were reported by 1,063 diabetics:
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Nausea
Type 1: Often (6%), Sometimes (13%), Rarely (29%), Never (52%)
Type 2: Often (2%), Sometimes (15%), Rarely (29%), Never (54%) -
Abdominal Pain
Type 1: Often (5%), Sometimes (15%), Rarely (29%), Never (51%)
Type 2: Often (5%), Sometimes (19%), Rarely (28%), Never (48%) -
Bloating
Type 1: Often (13%), Sometimes (23%), Rarely (28%), Never (36%)
Type 2: Often (12%), Sometimes (30%), Rarely (23%), Never (35%) -
Vomiting
Type 1: Often (0%), Sometimes (4%), Rarely (21%), Never (75%)
Type 2: Often (2%), Sometimes (5%), Rarely (18%), Never (76%) -
Early Satiety
Type 1: Often (7%), Sometimes (17%), Rarely (21%), Never (56%)
Type 2: Often (10%), Sometimes (20%), Rarely (20%), Never (50%)
Predictive Model for Gastroparesis Diagnosis
James Lind Institute has introduced a predictive model for gastroparesis diagnosis, where all symptoms receive equal weight. “Often” is assigned a value of 3, “Sometimes” a value of 2, “Rarely” a value of 1, and “Never” a value of 0. We have defined three categories:
- High Predictive Value Group (score 10-15): Severe symptoms
- Medium Predictive Value Group (score 7-9): Some symptoms
- Low Predictive Value Group (score 0-6): Few or no symptoms
Other Questions and Results
The data from our survey is more extensive than what we’ve shared here. It also includes insights on:
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- Opioid use and dependency
- Nausea relief medication use and dependency
- Diabetes treatment
Survey Details
- Date: September 18–23, 2019
- Sample: 2,500 members of our community in Denmark, aged 30-70 years, diagnosed with diabetes
- Responses: 1,063 respondents, 541 with type 1 diabetes, and 522 with type 2 diabetes
- Gender: 577 men, 485 women
These results represent our volunteer members, who joined the community to stay informed about research and clinical trials relevant to their disease.
For further data analysis, please contact:
- Torben Lind
+45 4044 3853
torbenlind@jameslindcare.com
About James Lind Institute
James Lind Institute is an international patient organization founded in 2011. It facilitates research-focused patient communities in Europe and guides patients in their clinical trial engagement. With our vast membership and unique international presence, James Lind Institute addresses issues related to patient-centricity in clinical trials, such as clear communication, gentle protocol design, attentive enrollment, and providing adequate feedback on research results.
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