Scoping review: the social and emotional impacts of gastroparesis

Introduction

Gastroparesis is a chronic digestive condition characterized by delays in gastric emptying that are associated with early satiety, excessive fullness, loss of appetite, nausea, vomiting, and abdominal pain. These symptoms can have a significant negative impact on overall quality of life, including mood, social and occupational functioning, and one’s relationship with food and eating.

As is the case with treating many chronic conditions, there is a difference between observable abnormalities (such as the severity of delay in gastric emptying) and subjective symptom reporting. In gastroparesis, the severity of delay in gastric emptying is not generally associated with the severity of nausea (1,2), bloating (3), or pain (1). From a treatment standpoint, then, setting normalization of gastric emptying as the treatment target does not always effectively address symptoms, especially if a patient experiences concurrent hind-gut dysmotility. When gastric emptying is normal but symptoms persist, this is more appropriately diagnosed as functional dyspepsia. In recent years, there has been extensive discussion of the possibility that functional dyspepsia and gastroparesis may exist along a spectrum of gastroduodenal neuromuscular disorders as opposed to being distinct clinical entities (4). This may be similar to the discourse around inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS), where a patient may be symptomatic despite evidence of histological remission and we begin to question dysregulation of the gut-brain axis as playing a contributing role in ongoing symptoms.

Higher severity of any one gastroparesis symptom is associated with worse quality of life (1-3,5). Compared to patients with idiopathic gastroparesis, those with diabetic gastroparesis tended to have more severe nausea, vomiting, and retching and reported higher levels of distress overall (2). On average, patients with idiopathic gastroparesis report an average of 3.5 vomiting episodes per day, whereas those with diabetic gastroparesis report an average of 7.3 vomiting episodes per day (6). Forty-one percent of patients reported severe bloating that was associated with worse nausea, fullness, distension, pain, and bowel function (3). In one small study (n=55) the physical sub-score of the Short Form-12 and severity of anxiety and depression were associated with reported symptom severity (5).

In a large study of gastroparesis patients (n=715), 50% of patients acknowledged poor quality of life (7). Quality of life appears to be influenced by the severity of the symptoms themselves (nausea, vomiting, and abdominal pain), whether symptoms presented acutely and/or progressively worsened, presence of medical and psychological comorbidities, and lifestyle/behavioral factors (including smoking) (7). The purpose of this review was to review the literature on the social and emotional impacts of gastroparesis. Specific recommendations for assessing quality of life in clinical practice are provided. We present this article in accordance with the PRISMA-ScR reporting checklist (available at https://tgh.amegroups.com/article/view/10.21037/tgh-23-124/rc).

Methods

The following electronic databases were searched: PubMed and Google Scholar in October 2023 using search terms “gastroparesis”, “emotional”, “social”, and “quality of life.” We retrieved articles based on subject headings and keywords in both databases and duplicates were removed. The reference lists of articles selected for full-text review were manually screened for additional articles.

The search was limited to peer-reviewed original studies published in English. Conference proceedings, review articles, and theoretical articles were excluded. In this search, the population of interest was adults diagnosed with gastroparesis based on abnormal gastric scintigraphy. Studies involving patients with gastroparesis-like symptoms, who did not have abnormal gastric emptying (e.g., patients with functional dyspepsia), were excluded unless they included a gastroparesis comparator group. Studies evaluating a specific treatment for gastroparesis (e.g., pharmacological, surgical, dietary) were also excluded, as the purpose of this review was to focus on the social and emotional impacts of being diagnosed with gastroparesis.

Our initial searches retrieved 439 results, of which we excluded 375 based on title and abstract review. This left 31 articles for full text review that were appropriate for inclusion (see Figure 1 for the PRISMA diagram). Included articles were reviewed and major themes were identified. Three major themes emerged: interactions with the medical system including healthcare utilization including opioid use, psychological considerations with gastroparesis, and lifestyle factors including nutrition, sleep, and social functioning. A small group of studies evaluated the role of sociodemographic factors including race/gender with symptoms and these studies were aggregated also. These studies are summarized in Table 1.

Figure 1 PRISMA diagram reflecting article review process.

Results

Interactions with the medical system

On average, there is a nine-year delay from time of symptom onset to being accurately diagnosed with gastroparesis (33). Thirty-three percent of patients with gastroparesis symptoms describe feeling frustrated with their diagnostic journey (30) and “unsatisfied” with their treatment, highlighting pain, nausea, and vomiting as the most important symptoms they would like to see improve (33). In fact, abdominal pain and vomiting are the symptoms most likely to be associated with emergency department (ED) visits and pursuit of additional testing (14). Severe gastroparesis symptoms may increase patients’ willingness to take risks with their healthcare, including agreeing to additional diagnostic tests and use of medications (14,21). More diagnostic testing in the ER did not improve treatment or outcomes, but it was associated with increased financial cost to the patient and increases in overall risk associated with care (14).

As a disease with a relapsing-remitting course, it can be difficult to determine a symptom or quality of life endpoint as the targets for treatment may change frequently. Similarly, patients can feel frustrated or discouraged by the unpredictable and uncontrollable nature of symptoms (25). In a small pilot study of patients receiving gastric stimulation for gastroparesis, over half of all clinical encounters were associated with a “transition”, where symptoms either improved or became worse from one visit to the next (29). This may reflect the waxing and waning of a particular symptom (e.g., nausea) or the quieting of one symptom during the building of another. When multiple symptoms are present, it can be difficult to identify improvements in a particular symptom when others are worsening.

Despite generally reporting more severe symptoms, females in one study were less likely to be hospitalized for their symptoms than males (34). Anecdotally, female patients describe having their physical symptoms attributed to a psychological cause more often than males. In three separate qualitative studies exploring stigma and quality of life in patients with gastroparesis, patients frequently identified stigma or lack of understanding from their medical providers as a significant source of frustration in their healthcare experience, though gender differences were not explored in these studies (8,25,26). This lack of understanding can become more damaging, progressing even to medical gaslighting or post-traumatic stress.

Opioid use

While nausea and vomiting have been the symptoms most traditionally associated with gastroparesis, many patients with gastroparesis also endorse a high level of abdominal pain. In fact, over two-thirds of patients report moderate to severe upper abdominal pain, with pain being the predominant symptom in 21% of patients (1). When pain was the predominant symptom, patients tended to experience reduced quality of life, more opiate use, and reduced use of anti-emetics, despite similar gastric scintigraphy profiles as those with a nausea-predominant presentation (1).

Although opioids have been highly associated with intestinal dysmotility (35), a small number of studies have examined opioid use in patients with gastroparesis. The majority of patients (70%) with gastroparesis denied use of opioids (16). Of those prescribed opioids, 19.3% were using them chronically and 8% were prescribed opioids specifically for their abdominal pain (16). Those who used opioids were likely to report more severe upper gastrointestinal (GI) symptoms, including a longer duration of nausea and more vomiting episodes per day, and the pain was more likely to interfere with social and occupational functioning (16).

Mental health symptoms

Quality of life in gastroparesis seems to be affected by a combination of symptom severity, depression, symptom anxiety, and coping styles (5,10,13,20,27,31). The most common health related social need expressed by gastroparesis patients was mental health, followed closely by financial strain and food security (20). Patients with gastroparesis appear to experience higher rates of depression and anxiety than what is typical in the general population. In one study, 47% met criteria for generalized anxiety disorder and 38% met criteria for major depressive disorder, compared to 2.7% and 3.8% of the general population respectively (12,28). The level of psychological distress a patient experienced due to their symptoms did not appear to be influenced by the severity of gastric retention; those with functional dyspepsia experienced similar levels of distress as those with gastroparesis (12). However, when mental health needs are high, patients also report more severe gastroparesis symptoms and reduced quality of life (20).

When we consider psychological factors that may influence functioning with a chronic digestive disease, we typically separate generalized anxiety or depression from symptom specific anxiety or depression, where the primary source or focus of distress is around the symptoms themselves. Consistent with the literature in esophageal conditions, symptom specific anxiety was associated with greater severity of gastroparesis symptoms and was more strongly correlated than depression, anxiety, or somatization (27). Similarly, one study found illness perception to be the mediating factor in the relationship between symptom severity and psychological distress (31). This theme also emerged in qualitative interviews with patients with gastroparesis, where patients who had a more health-focused and resilient identity were better able to adapt to the difficulties of their condition compared to those who were more illness-focused (30).

Lifestyle factors

Nutrition

Gastroparesis symptoms often lead to a loss of normalcy around eating (8), as many patients describe eating as the primary trigger for symptoms. Patients describe their relationship with food and eating to be significantly impacted by their gastroparesis symptoms, including feeling isolated and rejected during social eating opportunities (8). Some patients with gastroparesis also describe alterations in taste and smell, which may impact the desire and ability to eat food orally (17). Severity of heartburn, regurgitation, and gastroparesis symptoms were all associated with taste and smell disturbances (17). Despite the significant negative impact gastroparesis has on eating behaviors and food related quality of life, there is limited empirical literature available on this topic.

The prevalence of avoidant/restrictive food intake disorder (ARFID) has been assessed in one study involving patients with gastroparesis. Based on the Nine Item ARFID Screen, 39.9% of patients with gastroparesis were considered to have possible ARFID based on a conservative scoring system and 23.3% were considered to have probable ARFID based on the presence of psychosocial/medical impairments due to food restriction. Self-reported symptom severity was associated with the likelihood of patients exhibiting signs of a feeding/eating disorder, as well as the severity of the ARFID symptoms themselves, but not the severity of gastric emptying.

In a small group of patients with very severe gastroparesis (23), supportive nutrition may be considered when patients are not able to adequately meet caloric targets via oral food consumption. Parkman et al. found that out of a group of 971 patients, 1.4% used exclusive parenteral nutrition (PN) and 1.9% used enteral nutrition (EN) (23). Characteristics that were associated with the need for supportive nutrition included younger age, lower body mass index (BMI), and more severe gastroparesis symptoms. Overall, the need for PN or EN was associated with a reduction in physical quality of life but not mental or gastroparesis related quality of life. Those dependent on supportive nutrition generally had more impairments in gastric accommodation via the water load satiety test but not more severe delays in gastric emptying. Notably, at 48 weeks follow up for these patients, 50% of those with exclusive PN resumed oral nutrition and 25% of those with exclusive EN resumed oral nutrition (23).

Sleep

93% of patients with gastroparesis endorse feeling “fatigued”, with 51% of patients reporting severe fatigue (11). Upper abdominal pain and discomfort were most associated with fatigue and fatigue had significant negative association with quality of life (11). Seventy-four percent of patients with gastroparesis report experiencing abdominal pain in the nighttime, with it being severe enough in 66% of patients to interfere with sleep (6,10).

Social functioning

One of the themes identified in qualitative interviews of patients with gastroparesis is the challenge of managing social situations with gastroparesis (8). More than two thirds of gastroparesis patients report reductions in daily activities and 28.5% report reductions in annual income related to their symptoms (18). Gastroparesis symptoms lead to full disability in 11% of patients (18). There is preliminary evidence that how a person identifies with the illness shapes their pattern of social engagement (31).

Race

A small group of studies have explored the specific impacts of race and gender on the etiology and symptoms of gastroparesis. Non-Hispanic black individuals were more likely to have diabetic gastroparesis (18) with more severe retching/vomiting and a higher likelihood of hospitalization with symptoms, whereas Hispanic individuals reported less nausea and early satiety (34). A separate study similarly demonstrated higher rates of gastroparesis related emergency room visits and hospitalizations among non-White patients (15). When compared with healthy controls, Israeli patients with gastroparesis were more likely to have cardiovascular disease but less likely to be obese, with more hospitalizations and emergency room visits (32).

Discussion

Symptoms of gastroparesis can have a significant negative impact on a patient’s quality of life. Conversely, many lifestyle/behavioral factors have an influential role on a patient’s symptom experience. The areas highlighted by this review include how symptoms affect healthcare utilization, mental health, and lifestyle factors including nutrition, sleep, and social engagement.

We did not include studies that focused on the impact of treatments for gastroparesis on quality of life, as this was not within the scope of this paper and could comprise its own review. However, it is worth bringing attention to the relative dearth of highly effective treatments for gastroparesis, as this significantly influences a patient’s quality of life and hopefulness about the future. Pharmacologic options primarily target symptom control, and can include prokinetics, neuromodulators, or anti-emetics. However, some of the medications used to manage symptoms may compound a patient’s difficulties; for example, although ondansetron can be helpful in reducing nausea and vomiting, it can also be highly constipating and thus result in the same upper GI symptoms. Surgical interventions including per-oral pyloromyotomy may be helpful in normalizing gastric emptying and reducing symptoms of nausea and vomiting, but patients with hind-gut dysmotility may be less likely to benefit from this and it does not typically improve other gastroparesis symptoms including bloating, abdominal pain, and early satiety. Thus, we recognize the effective treatment of gastroparesis often requires a multidisciplinary approach, including a physician, surgeon, behavioral health provider, pelvic floor physical therapist, and dietitian. Of note, patients with gastroparesis were willing to take on a significant number of risks with respect to medication use and procedures they would undergo to find relief from symptoms or a source of their suffering. This is likely a reflection of the severity of the person’s physical and emotional distress with their symptoms. Patients were at risk of greater emotional distress when their symptoms were of acute onset and when they gradually worsened over time. It may be particularly important to screen for these two risk factors when working with patients with gastroparesis to mitigate the effects of symptoms on overall psychological well-being. When offering treatment options that have risks associated with them (whether pharmacological, surgical, dietary, or behavioral intervention), it is also important for providers to keep in mind patients’ susceptibility to taking on excessive risks, helping patients navigate the decision between risks and benefits for their situation.

This review highlighted a couple of specific populations of gastroparesis patients for whom treatment may be particularly challenging, including those using opioids to manage abdominal pain and those requiring enteral/PN because of insufficient oral intake. It also highlighted the significant burden of abdominal pain in gastroparesis, for which we have few effective treatments. This raises two important priorities in gastroparesis research: identification of treatments aimed specifically at reducing abdominal pain and optimizing nutrition status in patients with gastroparesis. Future studies aimed at understanding which patients are at risk of requiring supportive nutrition and their longitudinal outcomes will also be critical in optimizing care.

Dietary modification is considered a critical part of gastroparesis management, as patients are encouraged to eat smaller, more frequent meals, defer to liquid calories as tolerated, reduce particle size of foods consumed, and separate food and drink. Despite the likely significant role of diet in managing GI symptoms, only a small number of studies (included in this review) have evaluated the bidirectional relationship between gastroparesis symptoms and diet, including how gastroparesis symptoms affect the social experience of eating. In more severe cases or during disease flares, patients may be encouraged to consume a primarily soft solid or full liquid diet, especially in the evenings as motility tends to be at its slowest. However, when we consider dietary modification for patients with GI symptoms, it is important to recognize whether the patient can implement dietary change, including the amount of time necessary to prepare different meals, the financial resources to purchase needed foods, and sufficient dietary knowledge to modify intake according to the recommendations. It is also important to assess whether the patient can implement the diet without significantly compromising quality of life by assessing their ability to travel, eat socially, and plan a comprehensive, nutrient dense diet with the recommended restrictions.

Although a single data point, food insecurity, or the lack of regular access to nutritious and sufficient food, was one of the most commonly identified health related social need by patients with gastroparesis (20,36). Patients who are dependent on oral nutrition supplements or even EN in some cases may be particularly vulnerable to food insecurity. Typically, meal replacement shakes are not inexpensive and they are not likely to be covered by insurance, especially if consumed orally. This can present a significant barrier to maintaining nutrition support that may adequately manage symptoms, as patients may be unable to afford the expense of a full liquid diet. Patients may then defer to consumption of more solid foods that could exacerbate symptoms.

It is worth noting there is likely a reciprocal relationship between sleep quality and GI symptoms including nausea and abdominal pain. Patients with GI conditions tend to report poorer sleep quality than healthy controls (37-39). In patients with IBS, more waking episodes during sleep was predictive of more abdominal pain (38), GI distress, and worse quality of life but not bowel consistency or frequency (37). One study demonstrated that improving sleep quality using prescription sleep aids improved GI symptoms and quality of life in patients with functional dyspepsia (40). Poor sleep quality has been associated with increased nausea, fatigue, and abdominal pain in children and adolescents with disorders of gut brain interaction (41). Of note, the majority of these studies have relied on self-report data of perception of sleep quality. Objective measures of sleep quality, obtained via wearable devices, have so far not been demonstrated to be associated with GI symptoms (38).

Much of the research on the social and emotional impacts of gastroparesis has focused on depression and anxiety as the reciprocal entities. In clinical practice, it is important to distinguish what role these mental health symptoms may be playing in the experience of gastroparesis. For example, the presence of underlying depression may be contributing to overall fatigue or the inability to distinguish/appreciate incremental improvements in symptoms. Similarly, generalized anxiety may contribute to further avoidance of otherwise enjoyed activities, which may compound the distress associated with symptoms. Notably, there has not been a single study, to our awareness, published on the prevalence of posttraumatic stress disorder (PTSD) in patients with gastroparesis. Given active PTSD symptoms can contribute to chronic overactivation of the sympathetic nervous system, we hypothesize this to have a much more closely defined association with gastroparesis symptoms than underlying anxiety or depression. PTSD, whether related to psychosocial trauma or medical trauma, may also impact how a patient engages in treatment and which treatments they agree to. For example, if there is pelvic floor dysfunction, a history of sexual trauma may reduce a patient’s willingness to complete an anorectal manometry or engage in pelvic floor physical therapy. It would be important then to engage the patient in shared decision making about the order of treatments to make them most effective. In these cases, we would be considering treatment of the active PTSD symptoms to likely be paramount in improving the efficacy of pelvic floor physical therapy or other behavioral interventions.

Limitations

There are limitations of this review, which mainly reflect the limitations of the data available. Much of the research in gastroparesis is funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Gastroparesis Consortium, which is a multicenter endeavor to expand our knowledge of the etiology and effective treatment of gastroparesis. The strength of these studies is they tend to be quite large and therefore inclusive of many patients with gastroparesis. However, these may not capture the experience of patients presenting to their local or regional hospitals with gastroparesis like symptoms, where treating providers may not have the experience of working with a large enough volume of gastroparesis patients to know how to flexibly adapt treatment.

This review excluded studies focused on patients with functional dyspepsia. Although this homogenizes the data by including only those with abnormal gastric scintigraphy, there are some potential downsides of limiting the included data in this way. Most importantly, this review may not fully account for the presence of a disorder of gut brain interaction on top of a known delay in gastric emptying. This can come up when gastric emptying is normalized per a gastric emptying scan after surgical intervention but the patient remains symptomatic. In addition, many of the conclusions raised from this review are likely applicable to those with functional dyspepsia and, conversely, likely many of the strategies used to manage functional dyspepsia are likely useful in improving quality of life in patients with a known delay in gastric emptying. From a behavioral medicine standpoint, we find this to be true across GI conditions, regardless of affected organ or organic versus functional nature of the condition.

Clinical practice recommendations

Understanding symptoms is only the beginning in assessing the impact of those symptoms on quality of life in patients with gastroparesis. Providers may choose to use informal conversation or brief questionnaires to assess the impact of symptoms on quality of life. The use of brief, validated screening questionnaires can also help to identify a patient’s baseline level of functioning and provide interim measures of treatment effectiveness. Table 2 includes a list of questions that can be used to assess quality of life in patients with gastroparesis, as well as a list of commonly used quality of life questionnaires. When choosing assessment measures for use in your practice, we recommend choosing symptom specific quality of life assessments (as opposed to those that inquire about generalized quality of life). In Table 3, we provide a list of suggested assessments that could be used with new gastroparesis patients to help gain a more comprehensive understanding of their gastroparesis symptoms, quality of life, and cognitive-affective factors that may be affecting their symptom experience.

We recommend providers inquire about the patient’s main goal for treatment prior to discussing any treatment options. An example of this question may be: “What symptoms, if they improve, would translate to an improvement in quality of life for you?” The patient’s response helps to align the provider and patient in addressing their most distressing symptoms, as the target for treatment will vary significantly based on the patient. For some, reduction in pain or nausea is most important, whereas others may be seeking more dietary flexibility or to be able to socialize with friends again. As the provider, you ultimately want to know the answer to both questions: What symptoms need to improve? And what would you be doing more of if those symptoms were less frequent/severe? The treatment options being proposed should then align with the patient’s goals. Although in some cases we can effectively work toward symptom reduction, this also opens the opportunity to discuss where symptom anxiety may be playing a role in decreasing participation in otherwise enjoyed activities. For example, if a patient identifies more engagement with their social community as one of their goals and sees symptom relief/reduction as being critical to this, we may also work to increase social engagement despite the presence of symptoms to improve quality of life.

Conclusions

The presentation of gastroparesis can be highly variable and any one of the symptoms, whether nausea/vomiting, abdominal pain, or bloating, can significantly impair quality of life. When working with patients with gastroparesis, it is important to assess not only the severity of the symptoms themselves but also how the symptoms have negatively impacted a patient’s mood, sleep, relationship with food/eating, and ability to participate and find pleasure in activities they would otherwise enjoy. Patients with gastroparesis may have higher rates of healthcare utilization and be willing to take risks with procedures and medications to find relief from symptoms. Facilitating a collaborative and empathic relationship between the patient and provider are key steps in providing effective care for patients with gastroparesis.

Acknowledgments

Funding: None.

Footnote

Provenance and Peer Review: This article was commissioned by the Guest Editors (Sara H Marchese and Tiffany H Taft) for the series “Social and Emotional Impacts of Chronic Digestive Diseases” published in Translational Gastroenterology and Hepatology. The article has undergone external peer review.

Reporting Checklist: The authors have completed the PRISMA-ScR reporting checklist. Available at https://tgh.amegroups.com/article/view/10.21037/tgh-23-124/rc

Peer Review File: Available at https://tgh.amegroups.com/article/view/10.21037/tgh-23-124/prf

Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://tgh.amegroups.com/article/view/10.21037/tgh-23-124/coif). The series “Social and Emotional Impacts of Chronic Digestive Diseases” was commissioned by the editorial office without any funding or sponsorship. M.S. reported payment from Tuesday Night IBS. M.C. reported funding from Atmo and payment from Kate Farms. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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