John G Williams

Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales.

BackgroundHealth related quality of life (HRQL) has been recognised as an important paediatric outcome measurement. One of the more promising measures to emerge in recent years is the Pediatric Quality Of Life Inventory (PedsQL™), developed in the US. Advantages of the PedsQL™ include brevity, availability of age appropriate versions and parallel forms for child and parent. This study developed a UK-English version of PedsQL™ generic module and assessed its performance in a group of UK children and their parents.MethodsPedsQL™ was translated to UK-English. The psychometric properties of the UK version were then tested following administration to 1399 children and 970 of their parents. The sample included healthy children, children diagnosed with asthma, diabetes or inflammatory bowel disease and children in remission from cancer.ResultsPsychometric properties were similar to those reported for the original PedsQL™. Internal reliability exceeded 0.70 for all proxy and self-report sub-scales. Discriminant validity was established for proxy and self-report with higher HRQL being reported for healthy children than those with health problems. Sex differences were noted on the emotional functioning subscale, with females reporting lower HRQL than males. Proxy and self-report correlation was higher for children with health problems than for healthy children.ConclusionThe UK-English version of PedsQL™ performed as well as the original PedsQL™ and is recommended for assessment of paediatric HRQL in the UK.

The national colonoscopy audit: a nationwide assessment of the quality and safety of colonoscopy in the UK

Objective To perform a comprehensive audit of all colonoscopy undertaken in the UK over a 2-week period. Design Multi-centre survey. All adult (≥16 years of age) colonoscopies that took place in participating National Health Service hospitals between 28 February 2011 and 11 March 2011 were included. Results Data on 20 085 colonoscopies and 2681 colonoscopists were collected from 302 units. A validation exercise indicated that data were collected on over 94% of all procedures performed nationally. The unadjusted caecal intubation rate (CIR) was 92.3%. When adjusted for impassable strictures and poor bowel preparation the CIR was 95.8%. The polyp detection rate was 32.1%. The polyp detection rate for larger polyps (≥10mm diameter) was 11.7%. 92.3% of resected polyps were retrieved. 90.2% of procedures achieved acceptable levels of patient comfort. A total of eight perforations and 52 significant haemorrhages were reported. Eight patients underwent surgery as a consequence of a complication. Conclusions This is the first national audit of colonoscopy that has successfully captured the majority of adult colonoscopies performed across an entire nation during a defined time period. The data confirm that there has been a significant improvement in the performance of colonoscopy in the UK since the last study reported seven years ago (CIR 76.9%) and that performance is above the required national standards.

Mortality in patients with and without colectomy admitted to hospital for ulcerative colitis and Crohn's disease: record linkage studies

Objective To compare mortality outcomes in the three years after elective colectomy, no colectomy, and emergency colectomy among people admitted to hospital for inflammatory bowel disease, to inform whether the threshold for elective colectomy in clinical practice is appropriate. Design Record linkage studies. Setting Oxford region (1968-99) and England (1998-2003). Participants 23 464 people with hospital stay for more than three days for inflammatory bowel disease, including 5480 who had colectomy. Main outcome measures Case fatality, relative survival, and standardised mortality ratios. Results In the Oxford region, three year mortality was lower after elective colectomy than after either no colectomy or emergency colectomy, although this was not significant. For England, mortality three years after elective colectomy for ulcerative colitis (3.7%) and Crohns disease (3.3%) was significantly lower than that after either admission without colectomy (13.6% and 10.1%; both P<0.001) or emergency colectomy (13.2% and 9.9%; P<0.001 for colitis and P<0.01 for Crohns disease). Three or more months after elective colectomy, mortality was similar to that in the general population. Adjustment for comorbidity did not affect the findings. Conclusions In England, the clinical threshold for elective colectomy in people with inflammatory bowel disease may be too high. Further research is now required to establish the threshold criteria and optimal timing of elective surgery for people with poorly controlled inflammatory bowel disease.

Hospitalized incidence and case fatality for upper gastrointestinal bleeding from 1999 to 2007: a record linkage study

Aliment Pharmacol Ther 2011; 33: 64–76

The UK IBDQ—A British version of the inflammatory bowel disease questionnaire: development and validation

Measurement of health-related quality of life (HRQL) is becoming more important in studies of patients with inflammatory bowel disease. The McMaster IBDQ is the most widely used HRQL instrument for these patients. However, its use with patients in the United Kingdom has not been validated. This study develops and validates a UK version of the McMaster IBDQ (UK IBDQ). The UK IBDQ was tested with two samples of patients for its reliability, validity, reproducibility, and responsiveness. The first sample consisted of 180 patients participating in a randomized clinical trial. The second was recruited from members of the National Association for Colitis and Crohns Disease. Reliability of the subscales and the summary score of the UK IBDQ is demonstrated by Cronbachs alpha and item-total correlations. Their validity is demonstrated by their correlations with SF-36 subscales and an empirical index of disease activity. Good intraclass correlations and responsiveness ratios show their reproducibility and responsiveness. The findings support the reliability, validity, reproducibility, and responsiveness of the UK IBDQ and its acceptability to patients in UK.

Case–control study of the health of those looked after by local authorities

AIMS To assess the health needs and provision of health care to school age children in local authority care. METHODS A total of 142 children aged 5 to 16 in local authority care, and 119 controls matched by age and sex were studied. Main outcome measures were routine health care, physical, emotional, and behavioural health, health threatening and antisocial behaviour, and health promotion. RESULTS Compared with children at home, those looked after by local authorities were significantly more likely to: experience changes in general practitioner; have incomplete immunisations; receive inadequate dental care; suffer from anxieties and difficulties in interpersonal relationships; wet the bed; smoke; use illegal drugs; and have been cautioned by police or charged with a criminal offence. They also tend to receive less health education. They were significantly more likely to have had a recent hearing or eye sight test, and reported significantly less physical ill health overall. CONCLUSIONS The overall health care of children who have been established in care for more than six months is significantly worse than for those living in their own homes, particularly with regard to emotional and behavioural health, and health promotion. In contrast to uncontrolled observational studies we have not found evidence of problems with the physical health of these children.

Open access follow up for inflammatory bowel disease: pragmatic randomised trial and cost effectiveness study.

Abstract Objective: To evaluate whether follow up of patients with inflammatory bowel disease is better through open access than by routine booked appointments. Design: Pragmatic randomised controlled trial. Setting: Two district general hospitals in Swansea and Neath, Wales. Participants: 180 adults (78 with Crohns disease, 77 ulcerative or indeterminate colitis, 25 ulcerative or idiopathic proctitis) recruited from outpatient clinics during October 1995 to November 1996. Intervention: Open access follow up according to patient need. Main outcome measures: Generic (SF-36) and disease specific (UK inflammatory bowel disease questionnaire UKIBDQ) quality of life, number of primary and secondary care contacts, total resource use, and views of patients and general practitioners. Results: There were no differences in generic or disease specific quality of life. Open access patients had fewer day visits (0.21 v0.42, P<0.05) and fewer outpatient visits (4.12 v4.64, P<0.01), but some patients had difficulty obtaining an urgent appointment. There were no significant differences in specific investigations undertaken, inpatient days, general practitioner surgery or home visits, drugs prescribed, or total patient borne costs. Mean total cost in secondary care was lower for open access patients (P<0.05), but when primary care and patient borne costs were added there were no significant differences in total costs to the NHS or to society. General practitioners and patients preferred open access. Conclusions: Open access follow up delivers the same quality of care as routine outpatient care and is preferred by patients and general practitioners. It uses fewer resources in secondary care but total resource use is similar. Better methods of ensuring urgent access to outpatient clinics are needed.

Incidence and case fatality for acute pancreatitis in England : geographical variation, social deprivation, alcohol consumption and aetiology -a record linkage study

Background  Regional studies in the UK indicate that the incidence of acute pancreatitis increased from the 1940s to the 1990s, while case fatality fell until the 1970s but has levelled‐off since.

Clinical and lay preferences for the explicit prioritisation of elective waiting lists: survey evidence from Wales

Waiting lists are a persistent feature of public health care systems. The United Kingdom National Health Service (NHS) is considering priority scoring systems as a means of ensuring that patients are treated according to clinical need rather than maximum waiting time targets. Our objective was to elicit the preferences of those involved in the finance, delivery and receipt of elective health care regarding the clinical and social factors that should and should not determine waiting time. We conducted a postal survey of 750 general practitioners, 500 consultants, 29 health authority commissioners and 1000 members of the general public across Wales. We found both professional and lay support for a more explicit system of rationing access to elective health care by waiting list. The majority of each of the survey groups believe that level of pain, rate of deterioration of disease, level of distress and level of disability should play the most influential role in determining waiting times. They agree that age, ability to pay, cost of treatment, evidence of cost-effectiveness, existence of dependants, and self-inflicted ill health should have little or no influence on patient priority. In conclusion, were the NHS to widen its use of waiting list priority scoring systems, our study suggests that there may be some degree of consensus as to the criteria to be used.

Effectiveness of nurse delivered endoscopy: findings from randomised multi-institution nurse endoscopy trial (MINuET)

Objective To compare the cost effectiveness of nurses and doctors in performing upper gastrointestinal endoscopy and flexible sigmoidoscopy. Design As part of a pragmatic randomised trial, the economic analysis calculated incremental cost effectiveness ratios, and generated cost effectiveness acceptability curves to address uncertainty. Setting 23 hospitals in the United Kingdom. Participants 67 doctors and 30 nurses, with a total of 1888 patients, from July 2002 to June 2003. Intervention Diagnostic upper gastrointestinal endoscopy and flexible sigmoidoscopy carried out by doctors or nurses. Main outcome measure Estimated health gains in QALYs measured with EQ-5D. Probability of cost effectiveness over a range of decision makers’ willingness to pay for an additional quality adjusted life year (QALY). Results Although differences did not reach traditional levels of significance, patients in the doctor group gained 0.015 QALYs more than those in the nurse group, at an increased cost of about £56 (€59,