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Impact on Emotions

Excerpts from the presentation by:

Teresa Cutts, PhD.

Formerly: Associate Director of Community Affairs

University of Tennessee Health Science Center, &

Senior Scholar for the Interfaith Health Program, Memphis

Methodist LeBonheur Healthcare Systems

This special features column was created to highlight the speakers who presented at the American Neurogastroenterology & Motility Society, and GPDA organized: Consensus meeting on the Treatment of Gastroparesis, held in September 2004 at the Kahler Grand Hotel, Rochester, MN.

 

Nausea, Vomiting and Abdominal Distress Gets no Respect!

Since the dawn of reason, maladies of the body have been ascribed to bad sprits or psychological states of mind. In this topic of Motility Monitor, the “Psychological Aspects of Gastroparesis” is of particular importance.

It is still common to hear stories from gastroparesis patients about the psychological blame game that is used to explain their digestive suffering. Some patients believe the labels that have been put upon them and work hard to “fix” their “psychological disorders”, while others expend personal finances and time seeking out an accurate diagnosis and a physician who will truly listen to them and help manage their symptoms.

Here we are in the 21st century and only recently is the momentum of evidence emerging to unseat the notion that your brain is at fault for your gut's dysfunction. The mid-gut may well be the last bastion to get the recognition it deserves. As it is inaccessible for easy analyses, a biological model has yet to be devised for addressing the complex cellular abnormalities that disrupt digestive motility.

Looking back, we are not alone. Peptic ulcer disease had entire institutions funded and built upon the psychological model of illness, while even Crohn's disease and colitis (collectively knows as inflammatory bowel diseases or IBD) were defined by scholarly lectures as the prototypical psychosomatic illnesses.

If we step out of the world of gastroenterology and step into the worlds of space motion sickness, obstetrics, or cancer care, nausea garners much more respect and empathy.

How did we get here? The “first-in-the-door phenomenon”.

Research exploring psychological profiles in an attempt to associate stress, depression, anxiety and past abuse with digestive symptoms has generated a heap of the funding for inquiries. Delving into the enteric (gut) and autonomic nervous system and untangling this picture is much more laborious, time-consuming and challenging. Needless to say, it takes time to change medical biases and thankfully, groups like the American Motility Society are tackling this…

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Teresa Cutts, PhD, in her presentation to the consensus task force team, shared with our audience her insights from a decade and a half of experience working with gastroparetic patients. Following are excerpts from her lecture.

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I'm very happy to be here among this very distinguished group of experts. First, let me share my history of involvement in this field of work. I actually began many, many years ago while doing a post-doctoral fellowship at the University of Tennessee, in the Department of Psychiatry. My boss at the time informed me of a young gastroenterologist researcher, recently moved from the Mayo clinic, and his enthusiasm for including psychology and quality-of-life studies in his clinical work. So I went and spoke to him, and thus began my 17-year journey of working together with Dr. Thomas Abell.

Currently, my day job is working at a faith-based organization that provides care for the under-served. My focus over the last three years has shifted more to primary care and community health, working with chronic illnesses and chronic-care models.

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Many population-based studies looking at quality of life and the impact of dyspeptic symptoms on people's lives have consistently shown a very poor quality of life – with an impact similar to individuals with cardiovascular illnesses.

The people we were seeing [at] our tertiary care center reflected these similar findings. Our patient group consisted of individuals who were quite sick, quite ill and had quite severe symptoms. The devastation and the impact on the lives of these gastroparetic sufferers were very negative. I will return to that theme later.

There are no randomized clinical studies available looking at psychological aspects of gastroparesis; yet, in the studies we do find, virtually all show impaired quality of life, increased levels of anxiety, depression and somatization in gastroparesis sufferers versus medical or normal controls.

Much of the problem with this published scientific literature is that [it has] measured the psychological effects of chronic illness as an artifact. In other words, the persistent symptoms are driving the poor, psychological outcomes, but this has not been elucidated. It is not hard to imagine how chronic, unrelenting nausea – and often – chronic pain can lead to this negative impact.

The published studies on the psychological impact of gastroparesis have many confounding factors. One is just the duration of the illness itself, although we have not published this literature. Symptom duration is very highly correlated with the depression level, anxiety levels, and social introversion that you see with these folks. And actually, when you think about it, the experience of the illness is such that it begs for social isolation. Most people do not want to throw up in front of others; they don't want to belch in public or be seen when their bellies are swollen out like they're nine months pregnant. This illness is socially isolating.

 

I think the stress of the illness and the disruption on the lifestyle is a huge variable in terms of what we see – the so-called psychological sequalae, especially on moods, depression, and anxiety. Most of the very ill patients have lost their work; they have lost their lifestyle, and these were often very [highly] functioning men and women. This was a common story we heard over and over again.

 

We used to hear the horror stories too; though I think this stomach disorder is more readily recognized now. For example, we had a 17-year-old way back in 1988, who had been in an in-patient psychiatric treatment for psychogenic vomiting. For 4 months, this teenage girl had been separated from her mother. The psychiatrist said she was “enmeshed”. Upon her starting Cisapride, within a month her vomiting and other symptoms were brought under control. This young girl went on to nursing school and thankfully had a happy ending.

 

We heard many similar stories back in the late '80s and '90s of individuals receiving poor treatment and being labeled with psychiatric illnesses. These individuals have to emotionally process this medical mismanagement, and it can be part of the trauma of their illness.

 

It is important to remember – and this has not been well documented in the gastroparesis literature – but when you improve symptom scores, then psychological measures and quality of life also improve dramatically. In 1996, we published a study on 27 patients taking a trial of Domperidone for 12 months, and we compared their symptom improvement from baseline (before they began the medical treatment). We showed their overall symptoms were radically decreased, and this correlated very highly with decreased levels of depression, anxiety and an overall improvement in quality of life measures.

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A bio-psycho-social model is key to supporting people with gastroparesis. Having a psychologist or psychiatrist as part of the team is essential. It is also important for this consultation to occur from the very start.

 

Building on strengths

We work on behavioral game plans – focusing on small things, which can be maintained and controlled. It could be something as simple as making sure there is always a citrus cooler or Gatorade in the fridge all the time. We also use prayer [and] meditation – or anything that helps with relaxation is also very important. I like to anchor people to past successes in coping as well as processing anger and teaching skills for coping with pain.

 

I really downplay that dichotomy of either/or – it's functional or it's organic; it's in your body, it's in your mind. I talk to them about the interaction between the gut and brain. I talk to them about sympathetic nervous system, arousal, and how that can attack their body and how that may be a part of the inner climate of nausea, vomiting and other symptoms they have. We talk about the impact of nausea and vomiting and recognition of just the bone- chilling fatigue that comes with nausea. Most of us don't realize how aversive and noxious that is for people and how it wears them down.

 

It is important to educate family and friends as well. Because of the cyclical nature of gastroparesis and the general “well” appearance [of patients], there can be a misconception that these patients are malingering or they're getting some secondary gain out of their illness.

 

Support groups are very helpful. For 12 years, we ran a monthly support group for our patients. It is important to link the resources and providers to the patients. Talk to them about new treatments– new things that are going on. Instill hope.

 

Group support really helps people say, “Oh, isn't it great to be in a room full of people who can laugh about throwing up!” Also, connecting people helps decrease isolation and makes them understand they are not alone.

 

Stress and anger management training can also be offered in this type of format. Instilling hope and providing consistent messages that we can always manage symptoms – that's important. New things are coming up. We always encourage learning and troubleshooting of emotional stress.

 

And since I am from a faith-based organization, I'll end with my final thought. I think part of the key model is that the provider team needs to build a relationship with the patient to aid in healing and to focus on the whole person. I think that's a really critical part of this. Something that I think everybody has resonated with in their talks today – and the beauty of GPDA – is that they've brought all these disciplines together to provide this dialogue.

 

 

 

In summary:

Patients with gastroparesis need an empathetic, non-labeling, primary-care physician who recognizes the devastation wrought by gastroparesis.

 

Use of a team approach: GI specialist, dietician, psychologist, and pain specialist in conjunction with a primary-care physician, who communicate constantly is essential, especially with severe cases.

 

Conceptualizing the disease in terms of more holistic, body-mind interactions helps put the focus on what an individual can control, and gets away from the focus on viewing the disease as "psychiatric."

 

Clinically, different therapies work best for different levels of symptom severity. Autogenic feedback therapy works well for those who are suffering with milder symptoms.

 

Drug therapies are best for moderate symptoms; and gastric electrical stimulation works best for the most severe symptoms. In a 3-year follow-up study of a small sample of patients with severe motility disorders, we found that gastric electrical stimulation was less costly and resulted in more improved quality of life compared to those patients enrolled in an intensive, out-patient therapy program.

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What is Autogenic Feedback Therapy?

 

Autogenic feedback training exercises (AFTE) were developed by NASA as a non-pharmacological approach to controlling the disabling nausea and vomiting of space motion sickness (SMS). Consisting of a total of 6 hour-long sessions, the trainee learns, through visual and auditory biofeedback, to control physiological parameters of: heart rate, skin temperature, respiration, blood pressure and other variables under control of the autonomic nervous system.

 

In clinical studies with patients, substantial relief from various symptoms of nausea, dizziness, fainting, severe abdominal pain, migraine headaches, and orthostatic hypotension has been observed. Clinical trials of AFTE's application for controlling symptoms of nausea and vomiting of gastroparesis have shown this therapy to be as effective as Phenergan (a popular anti-nauseant medication).

 

Researchers at NASA now have a Personal-Computer-Based Physiological Training System. For more information, you can call directly to Ames Research Center, (650) 604-5104.