# What Patients Know About Irritable Bowel Syndrome (IBS) and What They Would Like to Know.



## eric (Jul 8, 1999)

*What Patients Know About Irritable Bowel Syndrome (IBS) and What They Would Like to Know*National Survey on Patient Educational Needs in IBS and Development and Validation of the Patient EducationalPosted 09/18/2007Albena Halpert, M.D.; Christine B. Dalton, PA-C; Olafur Palsson, Psy.D.; Carolyn Morris, Ph.D.; Yuming Hu, Ph.D.; Shrikant Bangdiwala, Ph.D.; Jane Hankins; Nancy Norton; Douglas Drossman, M.D.Abstract and IntroductionAbstractPatient education improves clinical outcomes in patients with chronic illness, but little is known about the education needs of patients with IBS.Objectives: The objective of this study was to identify: (1) patients perceptions about IBS; (2) the content areas where patients feel insufficiently informed, i.e., "knowledge gaps" about diagnosis, treatment options, etiology, triggers, prognosis, and role of stress; and (3) whether there are differences related to items 1 and 2 among clinically significant subgroups.Methods: The IBS-Patient Education Questionnaire (IBS-PEQ) was developed using patient focus groups and cognitive item reduction of items. The IBS-PEQ was administered to a national sample of IBS patients via mail and online.Analysis: Frequencies of item endorsements were obtained. Clinically relevant groups, (a) health care seekers or nonhealth care seekers and (







users or nonusers of the Web, were identified and grouped as MD/Web, MD/non-Web, and non-MD/Web.Results: 1,242 patients completed the survey (371 via mail and 871 online), mean age was 39.3 ± 12.5 yr, educational attainment 15 ± 2.6 yr, 85% female, IBS duration 6.9 ± 4.2 yr, 79% have seen an MD for IBS in the last 6 months, and 92.6% have used the Web for health information. *The most prevalent IBS misconceptions included (% of subjects agreeing with the statement): IBS is caused by lack of digestive enzymes (52%), is a form of colitis (42.8%), will worsen with age (47.9%), and can develop into colitis (43%) or malnutrition (37.7%) or cancer (21.4%). IBS patients were interested in learning about (% of subjects choosing an item): (1) foods to avoid (63.3%), (2) causes of IBS (62%), (3) coping strategies (59.4%), (4) medications (55.2%), (5) will they have to live with IBS for life (51.6%), and (6) research studies (48.6%). Patients using the Web were better informed about IBS.Conclusion: (1) Many patients hold misconceptions about IBS being caused by dietary habits, developing into cancer, colitis, causing malnutrition, or worsening with age; (2) patients most often seek information about dietary changes; and (3) educational needs may be different for persons using the internet for medical information.*IntroductionBecause of the impact of chronic conditions on health status and health care expenditures, managing chronic illness is one of the major challenges of modern medicine. Consequently, there is growing interest in effective educational programs, to provide patients with the necessary knowledge, skills, and confidence (self-efficacy) to manage their disease-related problems.The goal of patient education is to facilitate changes in patient behavior for the purpose of disease management or prevention. While different health education theories focus on many different aspects of this complicated process, most agree that facilitating change of behavior requires incorporating the patients' current knowledge, prior disease experiences, attitudes, goals, motivations, and cultural perceptions. The existing literature describes educational interventions based on a variety of health education models (e.g., health belief model, the theory of planned behavior, or theory of self-efficacy) in search of effective educational models for the management of diabetes, hypertension, arthritis, and cancer. However, relatively little is known about what constitutes an effective patient education model in irritable bowel syndrome (IBS) and other functional bowel disorders. *The emerging research typifies IBS as a brain-gut disorder where psychosocial factors (e.g., stress, cognitions, coping, etc.) can alter the symptoms and illness experience for better or worse. Due to these and other disease specific characteristics, that are amenable to education, we believe effective educational interventions may significantly impact the management of this common disorder.* Prior to designing, studying, and implementing theory based educational strategies for IBS, we need to better understand patients' disease experience, knowledge, misconceptions, motivations, and perceptions. Few studies to date have evaluated IBS "through the patients' eyes" and none have systematically examined patients' prior knowledge about IBS.--------------------------------------------------------------Current Knowledge and Misconceptions About IBSThe majority of participants were able to correctly identify the symptoms and triggers of IBS. Stress at work and psychological factors were identified as triggers by more than 70% of subjects. Of note is that a significant number of patients held misconceptions, including that IBS can develop into: colitis (43% agree, 29.7% not sure), malnutrition (37.7% agree, 33% not sure), a problem needing surgery (34.3% agree, 33% not sure), and cancer (21.4% agree and 36.3% not sure). In addition, a significant number of responders thought that IBS results from lack of digestive enzymes (52.1% agree and 28.2% not sure) and would worsen with age (47.9% agreed and 30.4% not sure). The majority of the participants were optimistic that new treatments will be soon available for IBS (62.6% agreed, 27.8% not sure). See Table 3 , Table 4 , Table 5 and Table 6 for correct conceptions and misconceptions (the latter shown in italics) about IBS. Regarding knowledge about lifestyle modifications as a treatment for IBS, subjects endorsed mainly eating small meals, a high fiber, low fat diet, and avoiding milk products. Nondietary lifestyle modifications such as exercise were not frequently endorsed ( Table 7 ). The majority of our subjects were familiar with first-line treatments for IBS such as antispasmodics, antidiarrheals, and fiber agents. A total of 35% endorsed antidepressants, 16% tegaserod, and 5% alosetron ( Table 8 ). When asked if psychological treatments (cognitive behavior therapy, relaxation techniques, etc.) are potential treatments for IBS, 29.1% of participants disagreed, 41.7% agreed, and 21.4% were neutral/not sure. Educational Needs Regarding IBSSubjects were primarily interested in learning about what foods to avoid, causes of IBS, and coping strategies. In addition, more than 50% of responders wondered if IBS will shorten their lives, how psychological factors affect IBS, and what medications they can use to prevent an IBS "attack." Of note is that close to half of the participants wanted to know about what is a normal bowel habit, whether IBS will get worse and about available IBS research. See Table 9 and Table 10 for more detailed results on patient educational needs. IBS Educational Needs Regarding IBS in SubgroupsPatients who used the Web, regardless of clinic status, seemed better informed about IBS and held fewer misconceptions (e.g., had less need to know what IBS is, or whether it will shorten their lives), and more interested in learning about the causes of IBS, foods to avoid, and coping strategies ( Table 13 ). Finally, based on our findings we created a summary of an IBS patient profile regarding IBS knowledge and educational needs ( Table 14 ). ===================DiscussionEducating patients about their illnesses improves adherence to treatment, quality of life, and satisfaction with care.___________________________________Our survey identified what IBS patients in the United States know about their condition and what their educational needs are in regard to IBS. There are several key findings, which have implications for the way in which clinicians needs to offer education.Patients' Misconceptions About Implications of IBS: Patients hold misconceptions about IBS developing into cancer, colitis, causing malnutrition, or shortening the life expectancy. Such misconceptions can produce great concern, anxiety, and reluctances to accept reassurance, particularly if the physician is not aware of them. This only reinforces a vicious cycle of health worry and urgent requests for diagnosis, along with increased physician visits and demands for more testing.[14] Thus it is important for educational materials to explicitly identify and address these misconceptions. In addition, clinicians need to proactively inquire about the patient's beliefs and concerns (e.g., "What do you think is causing your symptoms?" and "What are your concerns about them?"). Eliciting these thoughts and feelings will have a palliative effect on health anxiety and will lead to a more therapeutic response when the reassurance occurs within the context of the patient's expressed concerns.Patients Seek Information Primarily About Food and Diet: Our data highlight the strong attribution patients make about the role of diet in IBS. Patients most often seek information about dietary changes and the role of food in contributing to IBS (reflected in concerns about "what foods to avoid?"). Yet because of the limited evidence for dietary factors being causative in IBS, physicians often are unable or unwilling to offer specific advice on diet. Nevertheless, our data support the importance of addressing this topic, and to educate against idiosyncratic food practices that may occur. For patients who focus excessively on unnecessary food elimination in seeking relief from IBS symptoms, it may be helpful to explain gut physiology and introduce the possibility that the ingestion of food in general, rather than specific foods, may be triggering the symptoms. Importantly, overly restrictive diets need to be replaced by recommendations for a well-balanced diet.Patients Associate IBS with Triggers and Distress: Notably 70% of the study subjects agreed that there is a connection between their symptoms and psychological distress. However, this report contrasts with our clinical experience, since patients less frequently volunteer this association in the clinical setting, possibly out of fear of stigmatization, or the perception that this is "all in my head." Thus it is important for the clinician to be open to this option but to inquire in a matter of fact manner: "Are there any other factors that can worsen your symptoms, like diet, physical activity, or stress?" In addition to obtaining potentially meaningful clinical data that will help treatment, this approach conveys a high level of acceptance of this association as a matter of course rather than it being a "psychiatric" problem. The high level of acceptance of stress as an operative factor in IBS may relate to the population that is being drawn from the community rather than referral settings. With the latter group, the high psychosocial morbidity is associated with denial of a role for stress.[15, 16]Patients Consider IBS a Diagnosis of Exclusion: Over 50% of the patients considered IBS to be a "catch all" diagnosis and another 22% were unsure. While this could reflect the information provided by their physicians (thus highlighting the need to also educate physicians about IBS), this misconception may motivate patients to seek more and more diagnostic studies to find "the cause." The use of the Rome criteria[17] permits the patient to have a positive diagnosis. With confidence in knowing that IBS is a specific entity, such behaviors are minimized. Thus it is important for the physician to provide proper education about the level of confidence in the diagnosis.Web Users are More Informed About IBS: We found that IBS patients who use the Web have better knowledge about IBS in general, fewer IBS misconceptions, and are more aware of psychosocial disturbances being associated with flares. They also seem more "up to date" with commonly used medications and more interested in learning coping strategies. The implication of this finding is that the nature and content of educational interventions will differ for Web and non-Web users with IBS. Prior data suggest that more than 50% of Americans use the Web and about 52% have used the Web for obtaining medical information.[18] Similarly, the majority of our participants have used the Web for obtaining medical information (92.6%), suggesting that future Web-designed educational interventions will probably be well accepted. For the clinician, it suggests that the type of education provided (e.g., Web sites vs brochures) and its content (i.e., the educational level of the information) must be individualized to the learning style of the patient. Our study has several limitations. First, enrollment bias exists, since subjects interested in participating in the study may have had a higher level of education and greater motivation to learn than other patients, and they may also be more symptomatic at the time of enrollment, than the average IBS patient. However, the results would certainly apply to any patient seeking or willing to receive educational information. The findings for this study group are clinically relevant since they result from a symptomatic IBS population likely to utilize health care. A subgroup of non-consulters may have different educational needs. We also think it is important that future efforts be directed toward studies that may increase interest in learning. Another limitation relates to the relevance of the information collected from subjects not recruited from internal medicine or GI clinics (e.g., online subjects). Some respondents may have entered the study without having IBS merely to obtain the compensation offered. We implemented several measures to minimize this possibility. The study was advertised only on IBS-related Web sites, subjects had to meet Rome II criteria for IBS, had to be invited to participate, and those who qualified by the screening questions did not receive the main questionnaire immediately. Instead, they were e-mailed an entry password 24-72 hr later. This made multiple attempts to qualify for participation by the same individuals unlikely. Furthermore, participants had to provide a mailing address to receive the payment, which avoided the possibility for multiple entries coming from the same person. Finally, we acknowledge that the nature of this instrument, to assess individual knowledge and informational needs, is not amenable to standard methods to assess criterion or construct validity. There is no "gold standard," and relative to other patient report instruments, such as a health related quality of life instrument, one cannot do convergent or discriminate validity with known groups because there are no other psychometric measures to correlate with the instrument. Furthermore, there are no known groups to identify since all responses are specific to the individual. However, as noted in the methods, the use of three focus groups with a broad clinical representation to generate items, and then the use of cognitive debriefing with the investigators and a sample of 50 patients, permitted the selection of the most representative sample of items that were then applied in the quantitative analysis.-----------------------------------------ConclusionOur study is the first to define the conceptions, misconceptions, and educational needs of a large national sample of IBS patients. We found that many patients hold misconceptions about the condition, some of which may negatively impact patients' emotional well-being and increase their health care needs. According to our data, patients are mostly interested in dietary modifications, and learning about coping strategies and what causes IBS. Patients who use the Web have fewer misconceptions about the disease and may differ in their educational needs from non-Web users. The results of the study can be used in both daily clinical practice and as a basis for developing a variety of patient-centered IBS educational interventions.http://www.medscape.com/viewarticle/562448


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## Joan Mack (May 20, 2007)

After reading the gobbly-goke of if you think it is psychological you are nuts, if you don't think it is psychological you are nuttier...let me say.PRAY that the white medicine man comes down with this malady and everything will change. Even better...let the chief of the fda become impacted with poop!


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## eric (Jul 8, 1999)

Joan, with all due respects your missing how the brain and the gut work together in digestion in all people. It is a fact thoughts and emotions can effect digestion and how that is a problem in regards to the physical problems they are finding in IBS.In IBS the brain and the gut are both operational to cause the symptoms. They have known this now for many years. FYI"The 'brain-gut axis' helps to explain the influence that thoughts, emotions, and psychological or social stress have on the function of the gut."http://www.merck.com/yourhealthnow/volume2-2/braingut.html2007 IFFGD Symposium Summary Report, Very much worth reading/state of the art research"Stress can also significantly modify the immune response to the gut flora. So these are factors that could be affecting the sensitization in IBS and the condition itself. Brain-gut - The brain plays a role as well. The brain and the gut are connected. Thinking and feeling can have affects, influencing release of proteins that interactwith the nervous system (neuropeptides), which can affect motility, secretion, blood flow, and inflammation. Stress may influence inflammatory pathways causing a dysregulation that can lead to emotional conditions and more stress - a vicious cycle. It is not a question as to whether thiscycle begins in the gut or in the brain. The problem is that both systems are effected concurrently thus producing a disturbance of the regulation between the brain and gut; a "vicious cycle" with no beginning or end. Understanding this will open the door to more specific treatments. We can see examples of brain-gut interactions by looking at post-infectious IBS (PI-IBS) or dyspepsia."http://www.ibsgroup.org/forums/index.php?showtopic=92806altered serotonin signaling and ibs compilationhttp://www.ibsgroup.org/forums/index.php?showtopic=80198There are two very important cells in IBS research, enterochromaffin (EC) cells that release serotonin for gut functions and sensation and mast cells.Decreased expression of serotonin in the jejunum and increased numbers of mast cells in the terminal ileum in patients with irritable bowel syndrome.http://www.ibsgroup.org/forums/index.php?showtopic=91944Mast cellsFYI"You have two brains: one in your head and another in your gut. Dr. Jackie D. Wood is a renowned physiologist at The Ohio State University. He calls the second brain, "the-little-brain-in-the-gut." This enteric nervous system is part of the autonomic nervous system and contains over one hundred million neurons, which is as many as are in the spinal cord. This complex network of nerves lines the walls of the digestive tract form the esophagus all the way down to the colon. This little brain in the gut is connected to the big brain by the vagus nerves, bundles of nerve fibers running from the GI tract to the head. All neurotransmitters, such as serotonin that are found in the brain are also present in the gut.Dr Wood has discovered that this little-brain-in-the-gut has programs that are designed for our protection and which are very much like computer programs. They respond to perceived threats in the same way that the limbic system or the emotional brain does. So the threat of a gastrointestinal infection can activate the program that increases gut contractions in order to get rid of the infection. The symptoms are abdominal cramping and diarrhea. Dr. Wood has determined that a type of cell found in the body and the gut, called the mast cell, is a key to understanding the connection of the big brain in the head with the little-brain-in-the-gut. Mast cells are involved in defense of the body. In response to certain threats or triggers, such as pollen or infection, mast cells release chemicals, such as histamine, that help to fight off the invader. Histamine is one of the chemicals that causes the symptoms of an allergy or a cold. When an infection of the gut occurs, such as food poisoning or gastroenteritis, the mast cells of the gut release histamine. The little-brain-in-the-gut interprets the mast cell signal of histamine release as a threat and calls up a protective program designed to remove the threat â€" at the expense of symptoms: abdominal pain and diarrhea. The brain to mast cell connection has a direct clinical relevance for irritable bowel syndrome and other functional gastrointestinal syndromes. It implies a mechanism for linking allostasis and the good stress response to irritable states (e.g., abdominal pain and diarrhea) of the gut. Mast cells can be activated to release histamine in response to perceived psychological stress, whether the stressor or trigger is consciously perceived or not. So the end result is the same as if an infection activated the program in the-little-brain-in-the-gut: abdominal pain and diarrhea."http://www.parkviewpub.com/nuggets/n5.html So stress, emotions and anxiety and even PERCEIVED STRESSORS both physical and mental can trigger IBS. Part of that reaction has to do with the fight or flight reponce. This happens so fast you are NOT CONCIOUsLY AWARE of it happening. Fight or flighthttp://www.thebodysoulconnection.com/Educa...nter/fight.htmlThis system is connected to the autonomic nervous system and the parasympatheitc and sympathetic nervous systems. That help run digestion.The organs (the "viscera") of our body, such as the heart, stomach and intestines, are regulated by a part of the nervous system called the autonomic nervous system (ANS). The ANS is part of the peripheral nervous system and it controls many organs and muscles within the body. In most situations, we are unaware of the workings of the ANS because it functions in an involuntary, reflexive manner. For example, we do not notice when blood vessels change size or when our heart beats faster. However, some people can be trained to control some functions of the ANS such as heart rate or blood pressure. The ANS is most important in two situations:In emergencies that cause stress and require us to"fight" or take "flight" (run away) andIn nonemergencies that allow us to "rest" and "digest."http://faculty.washington.edu/chudler/auto.html


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