Endoscopists attitudes on the publication of "quality" data for endoscopic procedures: a cross-sectional survey.

BACKGROUND: Whilst the public now have access to mortality & morbidity data for cardiothoracic surgeons, such "quality" data for endoscopy are not generally available. We studied endoscopists' attitudes to and the practicality of this data being published. METHODS: We sent a questionnaire to all consultant gastrointestinal (GI) surgeons, physicians and medical GI specialist registrars in the Northern region who currently perform GI endoscopic procedures (n = 132). We recorded endoscopist demographics, experience and current data collection practice. We also assessed the acceptability and utility of nine items describing endoscopic "quality" (e.g. mortality, complication & completion rates). RESULTS: 103 (78%) doctors responded of whom 79 were consultants (77%). 61 (59%) respondents were physicians. 77 (75%) collect any "quality" data. The most frequently collected item was colonoscopic completion rate. Data were most commonly collected for appraisal, audit or clinical governance. The majority of doctors (54%) kept these data only available to themselves, and just one allowed the public to access this. The most acceptable data item was annual number of endoscopies and the least was crude upper GI bleeding mortality. Surgeons rated information less acceptable and less useful than physicians. Acceptability and utility scores were not related to gender, length of experience or current activity levels. Only two respondents thought all items totally unacceptable and useless. CONCLUSION: The majority of endoscopists currently collect "quality" data for their practice although these are not widely available. The endoscopists in this study consider the publication of their outcome data to be "fairly unacceptable/not very useful" to "neutral" (score 2-3). If these data were made available to patients, consideration must be given to both its value and its acceptability.

The epidemiology of primary biliary cirrhosis.

Over the last 30 years, many studies have reported on the epidemiology of PBC. Substantial increases in prevalence were noted in the majority of studies examining longitudinal data, and several have reported increases in the incidence of PBC. Furthermore, although it is difficult to compare studies directly, as methods of case ascertainment have greatly improved over this period, there has been a definite trend toward increasing prevalence (and also possibly incidence) across studies. Together, these data strongly suggest that in many countries, the frequency with which PBC is diagnosed has increased considerably between 1980 and the present time. The reasons for this change may be complex. There may have been a true increase in the incidence of PBC, reflecting either increased exposure to a currently unknown environmental etiological agent or demographic changes with an increased elderly, at-risk population. The prevalence may have further increased due to increased survival of patients, either due to improved care or earlier diagnosis. Some of the apparent increase in PBC frequency may also be artifactual, however, resulting from increased use of diagnostic tests, particularly autoantibody screens. This may be due to increased availability of testing, increased clinician (or patient) awareness of PBC, increased use of testing in well-person screening, or increased investigation of ill-defined symptoms. Furthermore, there may also have been an improvement in clinicians' ability to recognize PBC on the basis of the clinical picture (in one study, 37% of patients whose clinical results indicated a diagnosis of PBC were not recognized by the clinician caring for the patient at that time). The last factor alone suggests that all studies based only upon cases known to interested clinicians have probably substantially underestimated the prevalence of disease. Whatever the reason, the recognized epidemiology of PBC has dramatically changed over the past 30 years. It is now a frequent cause of liver morbidity, and patients with PBC are significant users of health resources, including liver transplantation. Large geographical variations in disease frequency, both between and within studies, tantalizingly suggest the presence of as-yet-unidentified risk factors. This should be further followed up with new analytical epidemiological studies. Only two case control studies have examined risk factors for PBC, and these have been either relatively small or used poorly defined and potentially biased experimental groups. These need repeating in new settings. We suggest that, as with other diseases, modern epidemiological instruments used in well-designed studies may provide important clues to the cause or causes of this disease.

The true impact of fatigue in primary biliary cirrhosis: a population study.

BACKGROUND & AIMS: Patient surveys suggest that fatigue is a common problem in primary biliary cirrhosis (PBC). The actual extent of the problems caused by fatigue in PBC has yet to be determined as previous studies addressing this question have tended to use selected patient subgroups and subjective or non-quantitative fatigue assessment tools. Here, we have attempted to more accurately assess the extent of fatigue in PBC, and the specificity of the symptom for this disease, by the application of an objective measure of fatigue impact (the fatigue impact score [FIS]) to a geographically based patient cohort, age- and sex-matched normal controls, and chronic liver disease controls. METHODS: Postal completion of the FIS and linked symptom assessment tools. RESULTS: Median FIS was significantly higher in patients (n = 136) than community controls (40 [0-138] vs. 28 [0-156]; P < 0.0001) and chronic liver disease controls (n = 38) (20.5 [0-145]; P < 0.05). Fatigue scores in the 11 patients who had undergone liver transplantation (median 3.5 years previously) were the same as those in non-transplanted patients with advanced disease. CONCLUSIONS: Fatigue is a significant and specific problem in PBC. It is not, however, universal and affects fewer patients than has previously been thought to be the case based on data from selected patient cohorts. This definition of the "normal range" for fatigue in PBC will assist in future studies of etiology and therapy.

Pain as a complication of use of opiate antagonists for symptom control in cholestasis.

Controlled trials have suggested that opiate antagonist therapy may be effective for the treatment of the symptoms of cholestasis. The oral opiate antagonist naltrexone in particular has started to enter into routine clinical use for amelioration of cholestatic itch. Attention regarding the side effects of opiate antagonist therapy has, to date, largely focused on an opiate withdrawal-type reaction (which can be controlled effectively by titrated therapy introduction regimens). Here we describe 3 cases of a further clinically important side effect, loss of control of pain resulting from other pathologies, which in each case necessitated the withdrawal of hitherto clinically effective opiate antagonist therapy. Of the 14 patients treated by our unit with opiate antagonist agents for the control of cholestatic symptoms, 13 (93%) showed resolution of, or significant improvement in, symptoms. Of the 13 patients showing a clinical response, 7 (54%) subsequently had to discontinue therapy because of side effects (including the 3 patients with uncontrolled pain). It is our experience that in the routine clinical setting, opiate antagonists are highly effective for the treatment of cholestatic symptoms. In practice, however, their usefulness is limited by their side-effect profile.