Irritable bowel syndrome patients' ideal expectations and recent experiences with healthcare providers: a national survey.

UNLABELLED: The purpose of this paper is to identify patients' ideal expectations from their healthcare providers. The IBS-Patient Education Questionnaire was developed using focus groups, and was administered to a national sample of IBS patients. Frequencies of item endorsements were obtained. Subgroup analysis was done comparing the responses for patients' ideal expectations of their healthcare providers vs. their experiences with their last provider. Among the 1,242 patients who completed the survey, the mean age was 39.3 years, educational attainment 15 years, 85% female, IBS duration 6.9 years, 1,028 (83%) had seen a physician for IBS in the past, and 92.6% have used the Internet to obtain health information. Among the subjects who have seen a physician for IBS, the most desired qualities of providers were to give comprehensive information (96%), to refer to a source for additional information (95.8%), to answer questions (95.9%), to listen (94.4%), to provide information about IBS studies and medications (94%), and to provide support (88.6%) and hope (82.1%). Importantly, patients' prior experiences with their last healthcare provider differed from their ideal expectations: "provide information" (38.3%); answer questions during the visit (68%), "to listen" (63.8%), and support (47.1%). Patients' ideal expectations from healthcare providers (what patients ideally would like to experience) relate to obtaining information and relationship needs of receiving support and hope. Notably, their prior experiences with recent healthcare providers (what patients perceived actually occurred) were different from their ideal expectations. A better understanding of different types of expectations is necessary in order to construct an effective therapeutic relationship, which is critical for the management of IBS. PRACTICE IMPLICATIONS: Practice guidelines for IBS should emphasize a better understanding of a patient's expectations and the therapeutic value of patient-provider communication.

A very low-carbohydrate diet improves symptoms and quality of life in diarrhea-predominant irritable bowel syndrome.

BACKGROUND & AIMS: Patients with diarrhea-predominant irritable bowel syndrome (IBS-D) anecdotally report symptom improvement after initiating a very low-carbohydrate diet (VLCD). This study prospectively evaluated a VLCD in IBS-D. METHODS: Participants with moderate to severe IBS-D were provided a 2-week standard diet, then 4 weeks of a VLCD (20 g carbohydrates/d). A responder was defined as having adequate relief of gastrointestinal symptoms for 2 or more weeks during the VLCD. Changes in abdominal pain, stool habits, and quality of life also were measured. RESULTS: Of the 17 participants enrolled, 13 completed the study and all met the responder definition, with 10 (77%) reporting adequate relief for all 4 VLCD weeks. Stool frequency decreased (2.6 +/- 0.8/d to 1.4 +/- 0.6/d; P < .001). Stool consistency improved from diarrheal to normal form (Bristol Stool Score, 5.3 +/- 0.7 to 3.8 +/- 1.2; P < .001). Pain scores and quality-of-life measures significantly improved. Outcomes were independent of weight loss. CONCLUSIONS: A VLCD provides adequate relief, and improves abdominal pain, stool habits, and quality of life in IBS-D.

Atypical antipsychotic quetiapine in the management of severe refractory functional gastrointestinal disorders.

Management of severe refractory functional gastrointestinal disorders (FGIDs) is difficult. Quetiapine, an atypical antipsychotic, may benefit patients by mitigating associated anxiety and sleep disturbances, augmenting the effect of antidepressants, and providing an independent analgesic effect. Outpatient records from a university-based FGID clinic were reviewed, and 21 patients with refractory symptoms who received quetiapine were identified and interviewed. Outcomes included global relief of symptoms, treatment efficacy questionnaire, and change in gastrointestinal (GI) and psychological symptoms. Eleven of 21 patients continued therapy at the time of interview. Six of 11 demonstrated global relief of symptoms, and 9 were satisfied with treatment. The remaining 10 of 21 discontinued therapy because of somnolence and lack of GI benefits. Quetiapine in low doses appeared beneficial in more than half of the adults with severe FGIDs who stayed on treatment. This response in otherwise refractory patients suggests quetiapine might augment the effectiveness of antidepressants in severe FGIDs.

Patient educational media preferences for information about irritable bowel syndrome (IBS).

PURPOSE: To identify the educational media preferences of patients with irritable bowel syndrome (IBS). METHODS: The IBS-Patient Education Questionnaire (PEQ) was administered to a national sample of IBS patients. Frequencies of item endorsements were compared and meaningful clinical differences were used to identify differences among subgroups. RESULTS: 1,242 patients completed the survey, mean age 39.3 years, 85% female, IBS duration 6.9 years, 79% had seen an MD for IBS within 6 months, and 92.6% used the web for medical information. The most desired source of education was "my doctor" (68%), followed by Internet (62%) and brochure (45%). Notably, patients favored an increase in use of media in the future (past vs. future): doctor (43 vs. 68%); Internet (36 vs. 62%); and brochures (26 vs. 45%). CONCLUSION: IBS patients expect more education than they have received. Understanding IBS patients' learning preferences can be highly valuable in the development or implementation of educational interventions.

The narcotic bowel syndrome: clinical features, pathophysiology, and management.

Narcotic bowel syndrome (NBS) is a subset of opioid bowel dysfunction that is characterized by chronic or frequently recurring abdominal pain that worsens with continued or escalating dosages of narcotics. This syndrome is underrecognized and may be becoming more prevalent. In the United States this may be the result of increases in using narcotics for chronic nonmalignant painful disorders, and the development of maladaptive therapeutic interactions around its use. NBS can occur in patients with no prior gastrointestinal disorder who receive high dosages of narcotics after surgery or acute painful problems, and among patients with functional gastrointestinal disorders or other chronic gastrointestinal diseases who are managed by physicians who are unaware of the hyperalgesic effects of chronic opioids. The evidence for the enhanced pain perception is based on the following: (1) activation of excitatory antianalgesic pathways within a bimodal opioid regulation system, (2) descending facilitation of pain at the rostral ventral medulla and pain facilitation via dynorphin and cholecystokinin activation, and (3) glial cell activation that produces morphine tolerance and enhances opioid-induced pain. Treatment involves early recognition of the syndrome, an effective physician-patient relationship, graded withdrawal of the narcotic according to a specified withdrawal program, and the institution of medications to reduce withdrawal effects.

Characterization of health related quality of life (HRQOL) for patients with functional bowel disorder (FBD) and its response to treatment.

BACKGROUND AND AIMS: Assessing health related quality of life (HRQOL) is becoming more important in research and clinical care. However, little information is available on the performance of HRQOL questionnaires for the functional bowel disorders (FBD). The aims of this study were to (a) understand the performance of the Sickness Impact Profile (SIP) and IBS-QOL for the functional bowel disorders at baseline and after treatment, (b) determine which HRQOL subscales best improve with treatment, (c) determine clinically meaningful improvement, and (d) determine the predictors of HRQOL at baseline and in response to treatment. METHODS: Women with moderate to severe FBD were evaluated using both medical (desipramine vs placebo) and psychological (cognitive-behavioral therapy vs education) treatments. Clinical and psychosocial questionnaires along with the SIP and IBS-QOL were given at baseline and after 12-wk treatment. RESULTS: (a) Patients with FBD experience functional limitations in social interactions, home management, and recreational activities, respond emotionally to the pain, feel helpless, out of control, depressed, and irritable, and perceive restrictions in lifestyle relating to toilet accessibility, and eating; (b) HRQOL is not different among the FBD diagnoses or IBS subgroups; (c) the IBS-QOL is more responsive to treatment than the SIP; (d) meaningful clinical improvement is 2.8 points for SIP and 14 for IBS-QOL; and (e) improvement is demonstrated primarily in psychosocial rather than physical domains. In addition, we found that expectation of benefit is greater for taking a pill over a psychological intervention, and the predictive effects of abuse history and pain on outcome is mediated by psychosocial factors. CONCLUSIONS: The data support the value of the IBS-QOL over the SIP, and provide new information on the profile of impairment in FBD, and the ways in which medical and psychological treatments produce improvement in HRQOL.

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 Educational Needs Questionnaire (PEQ).

UNLABELLED: Patient 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 (b) 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.

Clinical response to tricyclic antidepressants in functional bowel disorders is not related to dosage.

BACKGROUND: As shown in the per protocol analysis of a recent randomized, controlled trial, when tolerated, Desipramine (DES) is effective over placebo (PLA) in treating moderate-to-severe functional bowel disorders (FBD). Clinical experience suggests that the benefit from tricyclic antidepressants (TCA) in FBD can be achieved at doses lower than those used to treat major depression. Within psychiatry, when using higher dosage of TCAs, plasma levels can be used to adjust daily dosage to optimize a treatment response. However, in FBD, it is not known whether plasma levels at the lower dosage are similarly related to a clinical response. AIM: To determine in treating FBD, whether DES blood levels or dose taken can predict a clinical response. METHODS: As part of a study of 12 wk of antidepressant and psychological treatment in 431 patients with FBD at UNC and U of Toronto, we studied those participants who completed treatment (per protocol analysis) taking DES (N = 97, dose 50-150 mg/day) or pill placebo (PLA) (N = 55 1-3 pills/day). The primary outcome measure was defined as a composite score (Satisfaction with Treatment, McGill Pain Questionnaire, Global Well-being, and IBS-QOL). The composite score was correlated with: (i) DES plasma levels at week 6, and (ii) number of pills taken over the duration of the 12-wk treatment period. In addition, we also compared DES dose with DES plasma levels. RESULTS: There was a modest correlation between mean DES dose at weeks 5 and 6 and DES blood level at week 6 (R = 0.2 p < 0.07). However, there were no significant correlations between the composite score either with DES dose or with DES blood levels. CONCLUSIONS: Detectable blood levels of DES are associated with a clinical response in FBD. However, with dosages up to 150 mg, there is no relationship between total dose or plasma level and the clinical response.

Perceptions of physicians and patients with organic and functional gastrointestinal diagnoses.

BACKGROUND AND AIMS: We studied patient after-hours telephone calls to gastrointestinal (GI) fellows at a university program to determine requests made, physicians' responses, and perceptions of patients and physicians to these requests. METHODS: During a 4-month period, 4 GI fellows taking call were asked about reasons for patient-initiated after-hours telephone calls, actions taken, and their perceptions about the nature of the request, the illness impact, and their role in the care administered. Patients were telephoned within 1 week and asked the same questions about their perceptions of the call. RESULTS: Patients (N = 102) made 103 telephone calls, averaging 8.7 minutes, for symptoms (56%), procedure-related concerns (19%), and medications (18%). Physicians usually referred the patient to the clinic or emergency room (40%) or provided discussion and reassurance (36%). Patients' perceptions differed from physicians' perceptions: patients believed their problems to be more severe and more disabling and requests were more reasonable than perceived by the physician. Furthermore, their interactions with physicians (physician helpfulness, satisfaction with the recommendation, and likeability of the physician) were more positive than believed by physicians. Physicians believed phone calls from patients with functional disorders were less serious and less reasonable, that these patients were less disabled, and also that these patients were less liked than patients with an organic diagnosis. CONCLUSIONS: In this study, physicians carried a lower perception of the importance of telephone requests, the impact of the disorder, and their perceived helpfulness to patients than did patients making these requests. Physician perceptions were significantly lower for all these factors for patients with functional GI diagnoses. Additional studies are needed to understand the reasons for differing perceptions between physicians and patients.

Flexible sigmoidoscopy: the patients' perception.

BACKGROUND: Anxiety, discomfort, and high levels of concern can affect patient attitude toward endoscopic procedures as well as compliance and adherence to current recommendations for the examination. This study evaluated how patients perceive flexible sigmoidoscopy. METHODS: A prospective study was conducted at two sites of 764 patients presenting for GI endoscopy (flexible sigmoidoscopy 175, colonoscopy 384, EGD 205). Before these procedures, patients rated their anticipated (preprocedure) difficulty and degree of concern for each of 30 specific concerns. After the procedure, the patients rated their actual (postprocedure) difficulty. Patients' levels of concerns and difficulty were compared before and after the procedure and among the 3 procedure types. RESULTS: Before the procedure, patients who were to undergo flexible sigmoidoscopy had fewer concerns and lower scores for the severity of the concerns than did patients having colonoscopy or EGD. After the procedure, patients who had flexible sigmoidoscopy rated it as more difficult than patients who had colonoscopy or EGD. Patients who had colonoscopy and EGD graded their actual difficulty as less than their anticipated difficulty. However, patients who had flexible sigmoidoscopy rated the actual difficulty the same as the anticipated difficulty. CONCLUSIONS: Although patients have fewer concerns regarding flexible sigmoidoscopy than for the other endoscopic procedures, after the procedure they rate sigmoidoscopy as more difficult compared with postprocedure ratings by patients who underwent colonoscopy or EGD. This suggests that it may be necessary to change the perception of flexible sigmoidoscopy as being the best tolerated of the endoscopic procedures.