The Burdens, Concerns, and Quality of Life of Patients with Gastroparesis.

AIMS: The impact of gastroparesis on patients from the patient's viewpoint is needed to better address treatment priorities. The aims of this study were to: (1) Delineate burdens and concerns of patients with gastroparesis; (2) investigate specific symptoms contributing to impaired quality of life (QOL) in gastroparesis. METHODS: The International Foundation for Functional GI Disorders gastroparesis survey questionnaire was developed to describe patients' viewpoint about their experience with gastroparesis and included Patient Assessment of Upper GI Symptoms (PAGI-SYM) and SF-36 QOL survey. RESULTS: A total of 1423 adult patients with gastroparesis completed the survey. Average duration of gastroparesis symptoms was 9.3 years with time from onset to diagnosis 5.0 years. Patients felt that they receive good information regarding treatment options from physicians, the Internet, and Facebook. Patients rated their satisfaction with available treatment for their gastroparesis as dissatisfied (33%), somewhat dissatisfied (27%), neutral (14%), somewhat satisfied (15%), and satisfied (4%). Patients felt that gastroparesis symptoms that are most important to improve with treatment are nausea, stomach pain, and vomiting. Overall, there was a decreased quality of life by SF-36. Physical health QOL score was negatively correlated with symptoms including nausea (r = -0.37), upper abdominal pain (r = -0.37), and early satiety (r = -0.37). CONCLUSIONS: This large series of patients with gastroparesis describes their burdens, concerns, and QOL. Nausea, vomiting, early satiety, and abdominal pain are important symptoms for treatment. Many patients are not satisfied with current treatments, wanting specific treatments for their disorder. Interestingly, a large number of patients find out about treatments, not only from their physician, but also using the Internet including social media.

A focus group assessment of patient perspectives on irritable bowel syndrome and illness severity.

There is a growing need to understand from the patient's perspective the experience of irritable bowel syndrome (IBS) and the factors contributing to its severity; this has been endorsed by the Food and Drug Administration (FDA). Accordingly, we conducted focus groups to address this issue. A total of 32 patients with mostly moderate to severe IBS were recruited through advertising and were allocated into three focus groups based on predominant stool pattern. The focus groups were held using standard methodology to obtain a general assessment of the symptoms experienced with IBS, its impact, and of factors associated with self-perceived severity. Patients described IBS not only as symptoms (predominantly abdominal pain) but mainly as it affects daily function, thoughts, feelings and behaviors. Common responses included uncertainty and unpredictability with loss of freedom, spontaneity and social contacts, as well as feelings of fearfulness, shame, and embarrassment. This could lead to behavioral responses including avoidance of activities and many adaptations in routine in an effort for patients to gain control. A predominant theme was a sense of stigma experienced because of a lack of understanding by family, friends and physicians of the effects of IBS on the individual, or the legitimacy of the individual's emotions and adaptation behaviors experienced. This was a barrier to normal functioning that could be ameliorated through identifying with others who could understand this situation. Severity was linked to health-related quality of life (HRQOL) and was influenced by the intensity of abdominal pain and other symptoms, interference with and restrictions relating to eating, work, and social activities, and of the unpredictability of the condition. This study confirms the heterogeneous and multi-component nature of IBS. These qualitative data can be used in developing health status and severity instruments for larger-scale studies.

International survey of patients with IBS: symptom features and their severity, health status, treatments, and risk taking to achieve clinical benefit.

BACKGROUND: Although clinicians generally make treatment decisions in irritable bowel syndrome (IBS) related to the type of symptoms, other factors such as the perceived severity and the risks patients are willing to tolerate for effective treatment are also important to consider. These factors are not fully understood. OBJECTIVE: To describe among patients with IBS their symptoms and severity, quality of life and health status, medications taken, and the risk that they would take to continue medications for optimal relief. METHODS: Adult patients diagnosed with IBS who accessed the websites of the International Foundation for Functional GI Disorders or the University of North Carolina Center for Functional GI Disorders filled out questionnaires to address the study aims. RESULTS: The 1966 respondents (83% female, 91% white, 78% US/Canada) reported impaired health status: restricting on average 73 days of activity in a year, having poor health-related quality of life particularly with dietary restrictions, mood disturbance, and interference with daily activity, and 35% reported their symptoms as severe defined primarily as pain, bowel difficulties, bloating, and eating/dietary restrictions). These symptoms were reported in some combination by over 90%, and 35.1% endorsed all 4 items. To receive a treatment that would make them symptom free, patients would give up 25% of their remaining life (average 15 y) and 14% would risk a 1/1000 chance of death. Most of the medications being taken were for pain relief and 18% were taking narcotics. Complementary and alternative treatments were used by 37%. CONCLUSIONS: Patients accessing IBS informational websites report moderate-to-severe impairments in health status, and would take considerable risk to obtain symptom benefit. There is an unmet need to find effective treatments for patients with IBS and regulatory agencies might consider raising risk-benefit ratios when approving new medications for IBS.