Abstract:This study was undertaken by sending a questionnaire to 148 people suffering from irritable bowel syndrome (IBS). The respondents all were members of the IBS Network, a national independent organization formed to help alleviate the suffering and distress of people diagnosed as having irritable bowel. They were asked about their symptoms, the medical tests they had undergone, how they felt about the treatment they received, and how IBS affected their lives. The study found that IBS affected all aspects of their… Show more
“…Studies have shown that irritable bowel syndrome can affect sleep, 1 employment, 2 sexual functioning, 3 leisure, travel, diet, and can cause depression and anxiety. 4,5 Questionnaires have been used in clinical research, as well as by physicians, to describe symptoms of patients with irritable bowel syndrome and to differentiate irritable bowel syndrome from organic conditions such as in¯ammatory bowel disease. 6,7 None of these questionnaires, however, have focused exclusively on measuring the impact of irritable bowel syndrome on dimensions of quality of life.…”
Background:
We describe the development and evaluation of a new disease‐specific instrument, the Irritable Bowel Syndrome Quality of Life Questionnaire (IBSQOL), which was designed for use in patients with irritable bowel syndrome. The IBSQOL measures 10 domains found to be relevant to patients with irritable bowel syndrome: emotional health, mental health, health belief, sleep, energy, physical functioning, diet, social role, physical role, and sexual relations.
Methods:
During its development and evaluation, the IBSQOL was administered to over 500 patients with irritable bowel syndrome—two groups of patients from tertiary care centres, three focus groups of 8–12 patients each, and 287 patients in a national irritable bowel syndrome support network. As a control, the IBSQOL was also administered to 37 patients who did not have irritable bowel syndrome but had other gastrointestinal disorders. Statistical analyses to test the reliability and validity of the IBSQOL were performed using Cronbach's α coefficient.
Results:
Responses from the focus groups indicated that the IBSQOL was easy to complete and did not require too much time to fill out (≈ 25 min). Statistical analyses of the final 30‐item version of the IBSQOL demonstrated that it had both adequate validity and reliability (α ≥ 0.60). A comparison of mean IBSQOL scores of persons with and without irritable bowel syndrome (but with other gastrointestinal conditions) showed no difference between the two groups with irritable bowel syndrome; however, scores for both irritable bowel syndrome groups were considerably lower than for the non‐irritable bowel syndrome group, suggesting better health‐related quality of life in patients who do not have irritable bowel syndrome. This further demonstrated the validity of the IBSQOL in targeting questions and domains specific to patients with irritable bowel syndrome.
Conclusions:
Evaluation of the IBSQOL included testing the questionnaire in a large number of patients, which resulted in a revised and well‐constructed instrument that demonstrated both adequate validity and reliability. The IBSQOL is currently being used in large‐scale clinical trials to measure changes in quality of life in patients with irritable bowel syndrome following treatment intervention.
“…Studies have shown that irritable bowel syndrome can affect sleep, 1 employment, 2 sexual functioning, 3 leisure, travel, diet, and can cause depression and anxiety. 4,5 Questionnaires have been used in clinical research, as well as by physicians, to describe symptoms of patients with irritable bowel syndrome and to differentiate irritable bowel syndrome from organic conditions such as in¯ammatory bowel disease. 6,7 None of these questionnaires, however, have focused exclusively on measuring the impact of irritable bowel syndrome on dimensions of quality of life.…”
Background:
We describe the development and evaluation of a new disease‐specific instrument, the Irritable Bowel Syndrome Quality of Life Questionnaire (IBSQOL), which was designed for use in patients with irritable bowel syndrome. The IBSQOL measures 10 domains found to be relevant to patients with irritable bowel syndrome: emotional health, mental health, health belief, sleep, energy, physical functioning, diet, social role, physical role, and sexual relations.
Methods:
During its development and evaluation, the IBSQOL was administered to over 500 patients with irritable bowel syndrome—two groups of patients from tertiary care centres, three focus groups of 8–12 patients each, and 287 patients in a national irritable bowel syndrome support network. As a control, the IBSQOL was also administered to 37 patients who did not have irritable bowel syndrome but had other gastrointestinal disorders. Statistical analyses to test the reliability and validity of the IBSQOL were performed using Cronbach's α coefficient.
Results:
Responses from the focus groups indicated that the IBSQOL was easy to complete and did not require too much time to fill out (≈ 25 min). Statistical analyses of the final 30‐item version of the IBSQOL demonstrated that it had both adequate validity and reliability (α ≥ 0.60). A comparison of mean IBSQOL scores of persons with and without irritable bowel syndrome (but with other gastrointestinal conditions) showed no difference between the two groups with irritable bowel syndrome; however, scores for both irritable bowel syndrome groups were considerably lower than for the non‐irritable bowel syndrome group, suggesting better health‐related quality of life in patients who do not have irritable bowel syndrome. This further demonstrated the validity of the IBSQOL in targeting questions and domains specific to patients with irritable bowel syndrome.
Conclusions:
Evaluation of the IBSQOL included testing the questionnaire in a large number of patients, which resulted in a revised and well‐constructed instrument that demonstrated both adequate validity and reliability. The IBSQOL is currently being used in large‐scale clinical trials to measure changes in quality of life in patients with irritable bowel syndrome following treatment intervention.
“…Studies have shown that patients with IBS are more likely to have symptoms of psychological distress, 1±7 use more health care, 8 and have reduced quality of life manifested by impact on sleep, 9 employment, 6 sexual functioning, 10 leisure, travel and diet. 11,12 While physicians have not yet agreed on a set of symptoms that de®ne IBS, they do recognize that the disease exists on a continuum. 13 Even patients, when asked to described their symptoms, categorize themselves in terms of severity of their IBS.…”
Aim:
In this study of patients with irritable bowel syndrome (IBS), we evaluated the relationship between patient‐rated severity of IBS and patients' physical and psychological symptoms, health care resource use and quality of life.
Methods:
One hundred and twenty‐six patients diagnosed with IBS were administered a series of questionnaires, including the Bowel Symptom Checklist, the Symptom Checklist‐90 R (a psychological symptom checklist), the IBSQOL (a disease‐specific quality of life instrument), the SF‐36 (a general health status instrument), and a health resource utilization assessment that measured health care use, time loss from work, impact on productivity, and days worked with symptoms.
Results:
No relationship was found between IBS severity and gastrointestinal symptoms, except for a feeling of unpassed stool. IBS severity was also not related to psychological symptom severity. Direct traditional indicators of resource use (e.g. physician visits, hospital admissions and emergency room visits) were not significantly associated by severity level; however, indirect measures of resource use (e.g. number of days with pain, productivity and number of bed days) were related to severity. Quality of life was clearly associated with perceived IBS severity. Patients who rated themselves as very severe reported the lowest scores and had the poorest health for all quality of life dimensions measured.
Conclusions:
These findings suggest that perceived IBS severity is defined by the limitations the disease imposes, rather than by the symptoms. Patients with reduced productivity and decreased functioning for most of the quality of life indicators were those who rated their IBS as very severe.
“…Other research has found that patients with IBS have decreased sexual functioning, 38 higher rates of psychological symptoms 39±41 and problems with employment, travel, leisure and diet. 42 Some studies have examined general quality of life in patients with IBS. Using the Short-Form 36 (SF-36), a commonly used general quality of life questionnaire, O'Keefe et al 10 found that in a population of elderly people, those with IBS and frequent abdominal pain had lower scores compared with either those with other bowel disorders or a control group.…”
The ubiquitous nature of irritable bowel syndrome (IBS), coupled with a lack of good treatment options, has created the impression that the condition must represent a large drain on health‐care resources. The literature certainly appears to support this view but is largely based on patients seen in referral centres (10–15%) and it may not be appropriate to extrapolate these data to the IBS population as a whole (85–90%).In addition to reviewing such literature that exists on the economics of IBS, this paper contains some new data, which suggest that the direct costs of the condition, certainly in the UK, may not be quite as high as has previously been assumed. This may be partly due to factors such as the low cost of the drugs used to treat the condition and the tendency for many patients to stop consulting because of disenchantment with the inadequacies of current therapy. Conversely, the indirect and intangible costs of the disorder appear to be much greater, but these burdens obviously do not have such an impact on those responsible for purchasing and providing health care for IBS sufferers.Paradoxically, if a new, effective therapy for IBS were forthcoming, the situation could change dramatically, especially if it involved a new drug. Any such agent would inevitably be more expensive than anything available today, leading to a potentially dramatic escalation in the direct costs of this disorder.
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