The Burdens, Concerns, and Quality of Life of Adults with Gastroparesis

Gastroparesis is a long-term (chronic) medical condition in which certain symptoms occur and the stomach does not empty properly.

The clinical descriptions of patients with gastroparesis are mostly drawn from study of patients at academic medical centers, which are often taking care of the more severe type of patients. Descriptions of patients with gastroparesis in the community at large and the concerns that they have with their disorder has been lacking.

This survey sponsored by the International Foundation for Functional Gastrointestinal Disorders (IFFGD), and conducted by IFFGD in collaboration with clinical researchers from Temple University School of Medicine, was undertaken to more broadly describe patients in the community with gastroparesis and the clinical burden, or impact on their lives, that they experience from the patients’ viewpoint.

Better understanding of the patient experience will help more effectively address their needs, helping to guide healthcare providers, treatment developers, and regulators.

Thank you to all the people with gastroparesis who participated in this research survey. Your voices will help improve clinical practice, medical research, and education about gastroparesis.

About the Survey

The confidential online survey instrument was administered by SurveyMonkey software. IFFGD posted the survey online and opened it for the period beginning February 18, 2015 through May 31, 2015 to adults reporting a diagnosis of gastroparesis. Some of the results were presented in May 2016 to physicians and investigators at the DDW 2016 conference. Full results were published in the peer-reviewed journal Digestive Diseases and Sciences in January 2017.[1]

All respondents in the survey reported being diagnosed by a physician or other healthcare provider as having gastroparesis. A total of 1,423 adults aged 18 years and over completed the survey, including both the PAGI-SYM and SF-36 sections that measure symptom severity and quality of life.

Highlights

  • Gastroparesis leads to a variety of symptoms, and decreased quality of life
  • Social function and general health are most negatively affected
  • Respondents report nausea, vomiting, and stomach pain as most important symptoms to improve with treatment
  • Onset of gastroparesis symptoms is gradual in 52% and sudden in 48% of respondents.
  • On average the respondents report having gastroparesis symptoms for 9.3 years
  • On average the diagnosis of gastroparesis was made 5.0 years after symptoms began
  • Over half (52%) report their symptoms as being severe or very severe
  • Bodily pain is severe or extremely severe in nearly half of respondents
  • Nearly half the respondents expect their health to get worse over time
  • A large number of respondents find out about treatments, not only from their physician, but also using the Internet, including social media
  • Respondents report using multiple categories of drugs and other therapeutic approaches to treat their gastroparesis symptoms
  • Most respondents (60%) are not satisfied with available treatments for gastroparesis
  • Side effects from therapies are frequently reported
  • Severe side effects occur most commonly with prokinetic agents, analgesic (pain) medications, and surgical procedures
  • Complementary and Alternative Medicine (CAM) therapies have the least reported side effects and highest satisfaction rate
  • Respondents most want specific treatments for their disorder

The results of this survey present a picture of chronic, debilitating symptoms, that negatively impact daily living, and for which there are few satisfactory treatments. More needs to be done to improve care and treatment for this patient population.

In this report:

Relationship with Providers

An accurate diagnosis from a physician is the starting point for effective treatment of gastroparesis.

These respondents report their gastroparesis diagnosis was on average made 5.0 years after the symptoms began.

The first person who suggested that the respondents might have gastroparesis was most often a gastroenterologist (72%), followed by a primary care physician (10%), or surgeon (5%).

In more than 4 out of 5 respondents a gastroenterologist made the diagnosis. A primary care physician made the diagnosis in 1 out of 14 patients.

Healthcare Provider Seen for Gastroparesis During Prior 12 Months

Respondents were asked what healthcare providers they saw for their gastroparesis during the prior 12 months.

% of respondents

  • 79% Gastroenterologist
  • 72% Primary Care Physician
  • 32% Nurse Practitioner
  • 32% Dietitian or Nutritionist
  • 26% Physician Assistant

Satisfaction with Healthcare Providers

When asked how satisfied they are with the medical care that they received for their gastroparesis in the last 12 months from their physicians and other healthcare providers, 1 out of 5 respondents report being satisfied, while 1 out of 7 report being dissatisfied.

% of respondents

  • 19% Satisfied
  • 30% Somewhat satisfied
  • 14% Neither satisfied nor dissatisfied
  • 22% Somewhat dissatisfied
  • 15% Dissatisfied

Satisfaction with All Current Medical Care

When asked, in general, how satisfied are they with all of the current medical care, including visits to providers, medications, and any other treatments that they currently receive for their gastroparesis, 1 out of 10 respondents report being satisfied and 1 out of 4 report being dissatisfied.

% of respondents

  • 11% Satisfied
  • 25% Somewhat satisfied
  • 14% Neither satisfied nor dissatisfied
  • 27% Somewhat dissatisfied
  • 23% Dissatisfied

Causes of Gastroparesis

The onset of gastroparesis symptoms was gradual in 53% and sudden in 47% of the respondents.

Potential Cause of Gastroparesis in Respondents

Respondents were asked, did the doctor who diagnosed you indicate a potential cause of your gastroparesis. Idiopathic gastroparesis (unknown cause) was most frequently suggested.

% of respondents

  • 44% Cause not known (idiopathic)
  • 15% Not told potential cause
  • 12% Diabetes
  •   5% Vagal nerve injury
  •   3% Virus
  •   3% Surgery
  •   2% Autoimmune disorders (e.g., lupus, scleroderma)
  •   1% Medication-induced

Of the 3% of respondents where surgery is the potential cause, gallbladder surgery was suspected in 37% followed by fundoplication surgery in 17%.

Of the 1% with medication-induced cause, narcotics are suspected in 41% and antirejection immunosuppressive medications in 17%.

Coexisting Conditions

In addition to gastroparesis, most respondents also report having been diagnosed with other medical conditions. The most frequently reported is gastroesophageal reflux disease.

Reported Diagnoses of Other Medical Conditions

% of respondents

  • 55% Gastroesophageal reflux disease (GERD)
  • 42% Anxiety
  • 41% Depression
  • 34% Migraine
  • 31% Irritable bowel syndrome (IBS)
  • 26% Chronic constipation
  • 19% Fibromyalgia
  • 19% Diabetes
  • 18% Thyroid dysfunction
  • 13% Autoimmune disorder
  • 13% Chronic fatigue syndrome
  •   9% Neurologic disorders

Five percent (5%) or less of respondents reported other diagnoses in each of several other conditions, including chronic intestinal pseudo-obstruction, cyclic vomiting syndrome, functional dyspepsia, and eating disorders.

Symptoms and Severity

The respondents were asked to describe their severe and troubling symptoms of gastroparesis.

Severity of Symptoms

Over half rate their gastroparesis as severe or very severe.

% of respondents

  •   7% Very mild
  • 41% Moderate
  • 36% Severe
  • 16% Very severe

Most Troubling Symptoms

When gastroparesis symptoms became severe, the most troubling symptoms reported were nausea and stomach pain.

% of respondents

  • 51% Nausea
  • 46% Stomach pain
  • 30% Vomiting
  • 25% Bloating
  • 15% Stomach discomfort

Symptoms Rated by Severity

Respondents report experiencing a variety of symptoms. They were asked to rate severity of their symptoms during the prior 2 weeks on a numerical scale (PAGI-SYM) ranging from 0-none to 5-very severe.

(Averages: Higher Number = More Severe)

  • 3.9 Feeling excessively full after meal
  • 3.8 Stomach fullness
  • 3.8 Bloating
  • 3.7 Unable to finish normal-size meal
  • 3.5 Stomach/belly visibly larger
  • 3.4 Upper abdominal (above the navel) discomfort
  • 3.4 Nausea
  • 3.3 Loss of appetite
  • 3.2 Upper abdominal pain

Other symptoms reported as more mild to moderate include lower abdominal (below the navel) pain, lower abdominal discomfort, heartburn, regurgitation or reflux, chest discomfort, retching, and vomiting.

Daily Living and Quality of Life

Health in General

When asked to rate their health in general, two-thirds (67%) rate it as fair or poor.

% of respondents

  •   1% Excellent
  •   7% Very good
  • 24% Good
  • 35% Fair
  • 32% Poor

General Health Now Compared to 1 Year Ago

When rating their health in general now compared to one year ago, most (58%) report a worsening.

% of respondents

  •   6% Much better
  • 11% Somewhat better
  • 25% About the same 
  • 30% Somewhat worse
  • 28% Much worse

Nearly half of respondents (48%) say they expect their health to get worse over time.

Since their diagnosis of gastroparesis, 60% of respondents have lost weight, 18% have stayed the same weight, and 22% have increased weight.

Gastroparesis has a major effect on daily living, including social and work activities. Nearly one-third (30%) of respondents report they are not working because of the condition, and 15% report they are working limited hours because of their gastroparesis.

Treatments for Gastroparesis

Satisfaction with Available Treatment Options

Respondents express dissatisfaction when asked, in general, how satisfied are they with available treatment options for their gastroparesis. Less than 1 out of 20 report being satisfied, while more than 1 out of 3 report being dissatisfied.

% of respondents

  •   4% Satisfied
  • 16% Somewhat satisfied
  • 15% Neither satisfied nor dissatisfied
  • 29% Somewhat dissatisfied
  • 36% Dissatisfied

The respondents feel the symptoms that are most important to improve with treatment are nausea (21%), stomach pain (20%), and vomiting (11%).

Respondents were asked about what treatment measures for gastroparesis they had used in the past or were presently using, including:

  • dietary measures,
  • complementary and alternative medicine (CAM) therapies,
  • medications,
  • and surgical procedures.

In the survey questions, satisfaction reporting included: satisfied, somewhat satisfied, neither satisfied nor dissatisfied, somewhat dissatisfied, or dissatisfied. Side effects reporting included: none, mild, moderate, or severe.

Dietary Measures

Dietary modifications are made to try to control symptoms. Most current dietary advice is based on observations of what foods normally tend to promote or delay gastric emptying.

Respondents report having used one of these measures in the past or present:

Used  
%  
Dietary Measures             
Satisfied
with Treatment  
 Side Effects
Moderate or Severe  
94% Small frequent meals 32% 25%
90% Low-fat foods 30% 18%
88% Low-fiber diet 27% 25%
74% Liquid nutritional products 30% 32%
54% Avoiding carbonated
drinks
52% 17%
54% High-calorie
liquids/blenderized meals
24% 30%
50% Daily multivitamin 53% 17%
36% Diabetes diet 27% 21%
17% Feeding tube/enteral
nutrition
29% 55%
16% Central line/parenteral
nutrition
37% 36%

 N=1386

Complementary and Alternative Medicine (CAM) Therapies

CAM therapies refer to approaches that are done in addition to conventional, or mainstream, medical treatments (complementary), or instead of conventional medical treatments (alternative).

Respondents report having used one of these therapies in the past or present.

Used  
%  
CAM Therapies                 
Satisfied
with Treatment  
 Side Effects
Moderate or Severe  
71% Probiotics 45% 11%
61% Ginger 42%   8%
58% Dietary supplements 37% 15%
36% Meditation 43%   3%
33% Relaxation therapy 45%   2%
32% Massage therapy 59%   6%
29% Acupuncture 47%   8%
28% Herbal therapy 40% 13%
19% Homeopathy 36%   8%
17% Guided imagery 43%   5%
15% Biofeedback 20%   3%
11% Chinese medicine 19% 15%
  7% Hypnotherapy 47%   3%

 N=1322

Medication Treatments

Prokinetic, or promotility, agents directly help the stomach empty more quickly and may improve symptoms such as nausea, vomiting, and bloating.

Respondents report having used one of these agents in the past or present:

Used  
%  
Prokinetic Agents            
Satisfied
with Treatment  
 Side Effects
Moderate or Severe  
67% Metoclopramide (Reglan,  
Metozolv)
23% 63%
46% Erythromycin (Emycin) 25% 45%
44% Domperidone (Motilium) 28% 34%

 N=1363

Antiemetic agents are used to treat nausea and vomiting. These agents do not improve gastric emptying.

Respondents report having used one of these agents in the past or present:

Used 
%  
 Antiemetic Agent              Satisfied
with Treatment  
 Side Effects
Moderate or Severe  
68% Ondansetron (Zofran,
Zuplenz)
43% 18%
66% Diphenhydramine
(Benadryl) 
32% 22%
52% Promethazine
(Phenergan)
46% 28%
39% Lorazepam (Ativan) 47% 23%
37% Dimenhydrinate
Dramamine)
33% 20%
29% Prochlorperazine
(Compro, Compazine)
34% 36%

 N=1352

Analgesics are medications taken to help control pain.

Respondents report having used one of these agents in the past or present:

Used  
%  
Analgesic Medication        Satisfied
with Treatment  
 Side Effects
Moderate or Severe  
48% Oxycodone and
paracetamol (Percocet)
53% 39%
47% Tramadol (Ultram, Ultracet) 35% 30%
40% Oxycodone (Oxycontin) 36% 39%
36% Gabapentin (Neurontin) 41% 39%
34% Hydromorphone (Dilaudid) 75% 32%
31% Morphine (MSCotin) 63% 43%
31% Amitrptyline (Elavil) 23% 44%
20% Pregabalin (Lyrica) 39% 54%
13% Nortriptyline (Pamelor) 46% 35%

 N=1339

Surgical Procedures

Surgical procedures for gastroparesis are generally infrequently done, for various purposes, when other treatments fail or in addition to other treatments.

Respondents report having used or had one of these procedures in the past or present:

Used 
%  
Prokinetic Agents              
Satisfied
with Treatment  
 Side Effects
Moderate or Severe  
15% Botox  (botulinum toxin)
injection
22% 15%
  8% Gastric electrical stimulation
(GES) implanted
28% 37%
  7% Gastrojejunostomy 25% 48%
  7% Jejunostomy 34% 57%
  5% Gastrostomy for venting 51% 36%
  3% Pyloroplasty 29% 33%
  2% Completion gastrectomy 19% 52%

 N=1328

Sources of Information

Respondents were asked where they feel they receive good information regarding treatment options for their gastroparesis. Physicians (50%) are most frequently selected, and direct to consumer advertising (0%) is the least frequently selected.

Sources of Good Information about Gastroparesis Treatment Options

% of respondents

  • 50% Physicians
  • 47% Internet
  • 34% Facebook
  • 29% Patient organization
  • 27% Specialty sites
  • 12% Web MD
  • 10% Nurse practitioner
  •   8% Government agency
  •   8% Physician assistant
  •   2% News media
  •   0% Direct to consumer advertising

Profile of Participants

Demographic Profiles of Survey Respondents

% of respondents

  • 93% Under age 65 years
    • 30% age 8-34
    • 24% age 35-44
    • 22% age 45-54
    • 17% age 55-64
  • 93% Female gender
  •   7% Male gender
  • 53% Employed
  • 30% Not able to work because of gastroparesis
  • 15% Working limited hours because of gastroparesis
  • 84% Married or living as married
  • 49% College degree
  • 32% Some college
  • 88% Living in USA 

Summary

Much remains to be understood about gastroparesis causes, treatment approaches, natural history, and burden of illness. The perspective of patients who struggle to bring symptoms under control while living daily with this disorder is a key part of raising awareness. This study addresses the need for healthcare providers in the general community to be better informed about their patients with gastroparesis and where to focus attention on treatment.

Half or more of the patients in this survey are 1) not satisfied with current treatments, 2) expect their health to get worse, and 3) want specific treatments for gastroparesis.

While patients want better treatments for all symptoms that characterize gastroparesis, they regard nausea, abdominal pain, and vomiting as the most troubling severe symptoms for treatment.

The physical health component of quality of life – more than the emotional or mental health component – is particularly decreased in patients with gastroparesis. Not only symptom severity, but also duration of symptoms over time, has negative effects. Many patients have other coexisting conditions which add to the burden of their illness. Consideration of how best to improve quality of life for people with gastroparesis needs to be a part of all treatment plans.

Clearly gastroparesis is a condition that significantly impacts daily living and quality of life. Troublesome symptoms are many, and satisfactory treatments few.

There is a need for improved understanding about gastroparesis, among physicians and in the community. Research support needs to continue into prevention as well as treatments.

We thank all of you who took the time to complete this survey. Your participation contributes to a better understanding of the personal experience of struggling to manage gastroparesis.

We hope this survey will help provide guidance about meeting the needs of all patients with gastroparesis.

Additional Information

A full detailed report of this survey is published in the medical journal, Digestive Diseases and Sciences.

Citation:

  1. Yu D, Ramsey FV, Norton WF, Norton N, Schneck S, Gaetano T, Parkman HP. The burdens, concerns, and quality of life of patients with gastroparesis. Dig Dis Sci. 2017 Jan 21. doi: 10.1007/s10620-017-4456-7.

About IFFGD

IFFGD is a nonprofit education and research organization. Our mission is to inform, assist and support people affected by gastrointestinal disorders. We have been working since 1991 with patients, families, physicians, practitioners, investigators, employers, regulators and others to broaden understanding about gastrointestinal disorders and support research.