NPDA National Paediatric Diabetes Audit December 2013 2013 The Healthcare Quality Improvement Partnership (HQIP). All rights reserved.
National Paediatric Diabetes Audit Report 2011-12 Care processes and outcomes December 2013 Report produced by the National Paediatric Diabetes Audit Project Board, Royal College of Paediatrics and Child Health
Contents FOREWORD...3 1. SUMMARY OF KEY FINDINGS... 4 2. INTRODUCTION...5 3. COVERAGE AND PARTICIPATION...7 4. DEMOGRAPHIC AND POPULATION ASSESSMENT... 8 4.1 REGISTRATIONS... 8 4.1.1 Registrations by age and sex...8 4.1.2 Registrations by ethnicity and region... 9 4.1.3 Registrations by diabetes type...10 4.1.4 Registrations by diabetes type and ethnicity... 12 4.2 INCIDENCE RATES...12 4.2.1 Incidence rates by country for type 1 diabetes... 12 5. CARE PROCESSES AND TREATMENT TARGETS... 15 5.1 CARE PROCESSES...15 5.2 ANALYSIS...18 6. OUTCOMES OF CARE... 20 6.1 TREATMENT TARGETS... 20 6.1.1 target achievement...20 6.1.2 Paediatric Diabetes Unit variation in... 24 7. CONCLUSIONS AND FUTURE DIRECTIONS... 29 8. ACKNOWLEDGMENTS AND COLLABORATORS... 30 9. REFERENCES... 32 10. APPENDIX A: Data on Paediatric Diabetes Units in the 2011-12 National Paediatric Diabetes Audit...33 2
Foreword We are pleased to introduce the second annual report from the National Paediatric Diabetes Audit (NPDA), prepared by the Royal College of Paediatrics and Child Health. The report covers the period 2011-2012 for paediatric diabetes units in England and Wales. Findings from this year s Audit are both heartening, and troubling. On the positive side, nearcomplete national coverage of paediatric diabetes units has been achieved, and the number of infants, children and young people with diabetes under the age of 25 years reported to the NPDA has increased. Measurements of have also improved, and the percentage of patients with values in the target range <58mmol/mol (7.5%) has risen. Despite these achievements, fewer than one in five patients overall reach this level of diabetes control. We also note that the extent to which children and young people receive the care processes recommended by the National Institute for Health and Care Excellence remains low. The NPDA illustrates the quality of care delivered and it is clear there are many improvements to be made. We hope that clinical teams, NHS managers, and commissioners will use the findings from the Audit to improve both the organisation and delivery of diabetes care. We thank the NHS clinical teams that submitted data for their participation in the 2011-2012 Audit, and the important role played by the regional paediatric diabetes networks across England and Wales. We applaud the clinical leadership that has helped paediatric diabetes units submit high quality, complete data, and acknowledge this is sometimes difficult. We recognise the pressures faced by busy clinical teams and, going forward, aim to implement further improvements to facilitate data submission. We remain confident that with the strong support shown by clinical teams and with further development of the paediatric diabetes networks around the country, the NPDA will continue to be a powerful tool for driving improvements in the delivery of care and improving outcomes for infants, children, and young people with diabetes. Neena Modi Vice President for Science and Research RCPCH and Chair NPDA Justin Warner RCPCH Clinical Lead for the NPDA 3
1. Summary of key findings The 2011-12 National Paediatric Diabetes Audit (NPDA) report represents a transition to a new dataset and a new electronic web platform for data submission. We are pleased to have been able to implement the submission of information from multiple patient visits over the audit period. Though this has provided many challenges to Paediatric Diabetes Units submitting data, and to the NPDA, we believe this will strengthen the quality of the Audit. Coverage of children and young people with diabetes by the NPDA has increased. Records from 25,390 children and young people with diabetes were submitted to the 2011-12 NPDA, an increase of 7.2% compared with 23,676 in 2010-11. Some of this may be a real increase in diabetes incidence. For England and Wales combined, there were a total of 25,199 children and young people under the age of 25 years cared for in Paediatric Diabetes Units with a diagnosis of diabetes, and with a valid age and sex attached to their record, reported by 177 Paediatric Diabetes Units. An additional five Units registered with the NPDA, but did not submit data. In 2011-12 a new dataset and data collection process was adopted. The new dataset has many improvements over the previous version, including provision for multiple and other tests, and more accurate recording of dates and data. Improvements to individual aspects of this report and methodological changes are discussed in the relevant section. For example, the results now represent medians of several submitted values per patient, as opposed to a single value in 2010-11. This means caution should be taken when comparing some results with previous audit years. Despite improvements in the recording of some individual care processes from previous years, the percentage of children and young people diagnosed with diabetes for at least one year and over the age of 12 years at the start of the audit year with all care processes recorded, as recommended by the National Institute for Health and Care Excellence (NICE), has increased marginally to 6.7% in 2011-12, up from 5.8% in 2010-11. This proportion falls well short of similar data from the 2011-12 National Diabetes Audit (NDA) report for adults with diabetes, which shows for England and Wales, the proportion receiving all eight adult care processes in 2011-12 is 60.5% for all diabetes and 42.4% for Type 1 diabetes. In England, 89% of boys and girls under the age of 25 years had their measured, and 87% in Wales. This is a small improvement from the 85% who had their measured in 2010-11. The percentage of children and young people with diabetes achieving an <58 mmol/mol (7.5%) has increased from 14.5% in 2009-10 and 15.8% in 2010-11 to 17.4% in 2011-12. The greatest numbers of patients have an between 58 mmol/mol (7.5%) and 80 mmol/mol (9.5%). Over a quarter of children and young people have an unacceptable of >80 mmol/mol (9.5%). Admissions to hospital with Diabetic Ketoacidosis will be published as a supplement to this report in February 2014. 4
2. Introduction The National Paediatric Diabetes Audit (NPDA) report highlights the main findings on the quality of care for children and young people with diabetes mellitus in England and Wales. This is the ninth report and covers data submitted for patients under the age of 25 years who were being cared for in Paediatric Diabetes Units (PDUs) during the audit year 2011-12. This is the second report from the Royal College of Paediatric and Child Health (RCPCH), awarded the contract to conduct the NPDA from May 2011. The NPDA is commissioned and sponsored by the Healthcare Quality Improvement Partnership (HQIP) as part of the national clinical audit programme. The programme is funded by NHS England and the Welsh Government. The NPDA covers the components of the National Service Framework for Diabetes and includes details on the number of children and young people with diabetes in England and Wales, the care processes they receive and outcome measures, including inpatient admissions for diabetic ketoacidosis. This report covers the care process and outcome data only, with complications data to follow in a separate report. The National Diabetes Audit (NDA) for adults reports on the provision of core diabetes care for everyone with diabetes, whereas the NPDA reports only on individual participation of PDUs and children and young people attending such services. Those reviewing the NDA and the NPDA reports side by side need to be aware of these differences but, equally, those wanting to get the most complete picture of local needs and service provision should consider the two reports together. 2011-12 has seen the launch of a new dataset, the development of a new electronic web platform (EWP) for submitting data and a new online data quality reporting tool. The new dataset has been developed to allow more scope for data analysis. Based on feedback the EWP has undergone some developmental changes to improve data collection and quality reporting for the 2012-13 NPDA. There is a clear recognition that 2011-12 has been a year of transition to this new dataset and * Because the care of adults and children with diabetes is mixed between GP services (this includes ALL patients) and hospital, paediatric and community specialist services (these each include SOME patients), the different views that the two national audits NDA and NPDA give to the providers of the services will inevitably include overlapping patients. Thus, someone with diabetes attending a specialist service should also appear in the relevant GP report. The NDA integrates data from participating specialist and GP services for adults with diabetes so that if a care process or treatment target is recorded by one but not the other, both get the complete data reported back to them i.e. a whole person view. This reflects the fact that there is no clinical value in duplicating something carried out elsewhere. The population level NDA reports include all people with diabetes in a geographical area, irrespective of their mix of provider services, and use integrated data where they are available. The NPDA runs independently of the NDA and of GP services, so its data are not integrated. It is, therefore, possible that GP reports do not include all care processes or treatment targets measured in specialist paediatric units, and vice versa. Specialist PDUs are primarily responsible for the care of most children and young people with diabetes, and for the collection of their care process and outcome data. Although GPs do not provide the majority of care for children and young people living with diabetes, they do prescribe all their medications. Therefore it is this age group, and also adults with Type 1 or complex diabetes, that attend specialist services not participating in NDA, where lack of data integration is most likely to result in a slightly deficient whole systems view. Furthermore, for under-17s, the age cut-off for the Quality and Outcomes Framework (QOF) GP incentive scheme means that there is no financial value to the practice in replicating results from external services. Nonetheless, because fewer than 10% of all people with Type 1 diabetes, and fewer than 1% of people with diabetes in general are under 17years, the overall impact on population level NDA results is minimal. 5
submission process. It has presented many challenges to PDUs who are now asked to submit patient data for multiple visits over the audit year. Despite these challenges the number of PDUs submitting data has remained stable and the number of patient records has increased. The new dataset has also presented challenges to the NPDA in terms of providing timely data quality reports back to submitting PDUs, and the extraction and analysis of multilevel patient data. However, this new dataset will come into line with many other international audits and registries, making comparisons more valid. Over the nine years that the NPDA has been the basis for data collection on process and outcome measures of care for children and young people with diabetes, there have been many changes in the way services are structured and delivered. In England, with the help of the former NHS Diabetes, ten Regional Networks have been established and are geographically located in the former Strategic Health Authorities. The development of these Networks has helped considerably in the collection of annual audit data. They have also helped facilitate monitoring and benchmarking of services within region. Participation in the NPDA is now a mandatory standard for a PDU to receive its tariff in England. No such commissioning arrangements exist in Wales. Over the last few years there has been a move towards intensification of therapy, including insulin dose adjustment for carbohydrate intake using multiple daily injections and/or continuous subcutaneous insulin infusions. There is also recognition of the need for continuous structured educational programmes starting from diagnosis and continuing throughout childhood, adolescence and transition into adult services. The NPDA will act as the measuring tool for the implementation of such initiatives. This report has demonstrated a significant improvement in the number of children and young people with diabetes achieving an of <58mmol/mol (7.5%), which is anticipated to be the beginning of year-on-year improvement as quality of care escalates. The peer review process established in England, and under negotiation in Wales, will act as a quality assurance tool to ensure nationally agreed standards are met. The NPDA hopes that PDUs will use the data presented in this report to benchmark their own centres against others, and explore methods of driving up quality of care for their patients. The Royal College of Paediatrics and Child Health and the NPDA would like to thank PDUs that have submitted data to the 2011-12 audit. Finally, data quality is of paramount importance when submitting data and PDUs are reminded to check the data quality report provided and act on any outstanding issues. The NPDA can only analyse data that fulfil the data entry criteria. Patients must have a valid NHS number, date of birth, date of diagnosis and gender submitted to be included in analyses of care processes and outcomes. Furthermore, they must be assigned a PDU PZ code. Care processes and outcomes can only be analysed if the result is a valid response and the date of measurement falls within the audit year. Much data submitted have to be excluded because it does not fulfil these criteria. The NPDA would urge submitting PDUs to check their data quality to ensure it is accurate and avoid any data being excluded. 6
3. Coverage and participation A total of 177 PDUs in England and Wales successfully submitted data to the 2011-12 NPDA, representing 25,199 patients. A Paediatric Diabetes Unit is defined as a unit which delivers a paediatric diabetes healthcare service. It may represent one or more hospitals, as some services provide care across multiple sites. Data were received from 163 PDUs in England, which represents 97% of those registered with the NPDA (168), and from 14 PDUs within the six Health Boards in Wales, comprising 100% of services registered with the NPDA in Wales. Figure 1 shows the geographical spread of the 177 PDUs in England and Wales. Figure 1: PDUs that submitted data to the NPDA 2011-12 7
4. Demographic and population assessment 4.1 Registrations Records from 25,390 children and young people with diabetes were submitted to the 2011-12 NPDA, an increase of 7.2%, compared with 2010-11. There were 417 patients who had visited (and as a result were recorded at) more than one PDU. A total of 191 records have been excluded from the 2011-12 analysis, as 114 were related to patients over the age of 25 years, or without a valid age; 65 did not have a valid record of gender, and 12 did not have a valid PDU code attached to them. Therefore, for England and Wales combined, there were a total of 25,199 children and young people under the age of 25 years registered with diabetes and with a valid age and sex attached to their record, reported from 177 PDUs, which were used in the analysis for the 2011-12 Report. Table 1 shows the breakdown in registration by country, age and English region. The age breakdown categories have been changed from 2010-11 to allow comparisons to be made with the same age groups represented in the Census and other Office for National Statistics publications. Within England, the maximum number of registrations across all age groups was observed in the North West and East of England regions. In both England and Wales, age groups 10-14 and 15-19 years comprised the two largest groups of registered children and young people with diabetes. Table 1: Diabetes registrations by country, age and English Region, 2011-12 Area Age group 0-4 5-9 10-14 15-19 20-24 Total England and Wales 1,354 4,861 10,987 7,764 233 25,199 England 1,282 4,618 10,314 7,287 229 23,730 Wales 72 243 673 477 <5 1,469 Regions in England East of England 150 571 1,180 997 21 2,919 East Midlands 97 399 808 433 0 1,737 London 172 500 916 676 83 2,347 North East 60 243 555 436 0 1,294 North West 173 612 1,484 908 60 3,237 South Central 114 376 855 600 41 1,986 South East 135 562 1,275 875 5 2,852 South West 111 382 925 662 5 2,085 West Midlands 135 487 1,190 850 12 2,674 Yorkshire and the Humber 135 486 1,126 850 <5 2,599 4.1.1 Registrations by age and sex Table 2 and Figure 2 shows registrations for boys and girls in each age band. Slightly more boys have been registered with diabetes than girls. 8
Table 2: Number of children and young people with diabetes by age band, for England and Wales combined, 2011-12 0-4 5-9 10-14 15-19 20-24 Total Under 25 Boys 704 2,587 5,674 4,097 113 13,175 Girls 650 2,274 5,313 3,667 120 12,024 Total under 25 1,354 4,861 10,987 7,764 233 25,199 Figure 2: Number of children and young people with diabetes by age band, for England and Wales combined, 2011-12 4.1.2 Registrations by ethnicity and region Of the 25,199 records analysed, 681 do not specify a valid ethnic origin as part of their registration. For PDUs in Wales, 98.9% of records provide ethnic origin; the corresponding figure from England is 97.0% which is significantly improved from 2010-11 when just 72.6% of registrations from England specified ethnic origin. Table 3 and Figure 3 show the percentage of children and young people registered with diabetes by ethnic group for 2011-12. In both England and Wales the largest group was White. In England, Asians and Blacks were the two next largest patient ethnic groups. Note that some ethnic groups with very small populations have not been shown, so the percentages may not add up to 100%. 'Not stated' is offered as a specific response when parents or children do not wish to provide ethnicity information. However, the NPDA cannot validate this response as it may also be entered by a PDU when ethnicity is unknown or not recorded. In addition, there are some records with missing data on ethnicity which are also not shown. 9
Table 3: Percentage of children and young people with diabetes by ethnic group, 2011-12 White Mixed Asian Black Other Not stated England and Wales 76.0 1.8 4.3 2.8 1.3 13.9 England 74.6 1.8 4.5 2.9 1.4 14.7 Wales 96.9 1.2 0.2 0.1 0.1 1.5 Regions in England East of England 81.9 1.8 2.6 1.1 0.7 11.9 East Midlands 86.3 1.8 5.2 1.8 1.5 3.4 London 39.2 5.2 11.0 17.6 4.8 22.2 North East 53.9 0.2 0.5 0.1 0.1 45.2 North West 74.9 1.0 3.4 1.1 1.0 18.6 South Central 83.8 0.8 1.8 0.9 0.4 12.2 South East 77.9 2.8 5.2 3.8 2.4 8.0 South West 84.7 0.8 0.8 1.3 0.3 12.1 West Midlands 71.4 2.2 6.5 1.9 1.0 16.9 Yorkshire and the Humber 82.8 1.0 6.4 0.7 1.0 8.1 Figure 3: Percentage of children and young people with diabetes by ethnic group, 2011-12 4.1.3 Registrations by diabetes type Over 98% of the records submitted to the Audit had a diabetes type recorded. 308 of those records did not specify ethnicity. Table 4 shows the breakdown of diabetes type by sex, nation and region in England. The vast majority of children and young people have Type 1 diabetes, although there is variability across regions in England. In both England and Wales there were slightly more boys with Type 1 diabetes. The second major group was those with Type 2 diabetes. 10
Table 4: Percentage of children and young people with diabetes by sex and type, for England and Wales, 2011-12 Type 1 Diabetes Mellitus Type 2 Diabetes Mellitus Cystic Fibrosis Related Diabetes Mellitus Monogenic forms of Diabetes Mellitus (gene known) Monogenic forms of Diabetes Mellitus (gene unknown) Other specified forms of Diabetes Mellitus Not Specified forms of Diabetes Mellitus Boys Girls Boys Girls Boys Girls Boys Girls Boys Girls Boys Girls Boys Girls England and Wales 97.4 95.2 1.1 2.6 0.4 0.6 0.3 0.4 0.1 0.1 0.4 0.8 0.3 0.5 England 97.4 95.1 1.1 2.6 0.4 0.5 0.3 0.4 0.0 0.1 0.4 0.8 0.4 0.5 Wales 97.6 95.6 0.9 2.4 0.8 1.3 0.4 0.3 0.3 0.1 0.0 0.3 0.0 0.0 Regions in England East of England 97.9 96.4 0.5 0.8 0.3 0.5 0.3 0.4 0.1 0.0 0.3 0.9 0.6 1.1 East Midlands 98.0 95.7 0.8 2.0 0.0 0.2 0.5 0.5 0.0 0.1 0.3 1.1 0.4 0.4 London 96.4 91.6 2.2 6.3 0.7 0.7 0.0 0.3 0.0 0.0 0.3 0.5 0.3 0.6 North East 98.4 96.4 0.9 3.1 0.0 0.0 0.1 0.0 0.0 0.0 0.4 0.3 0.1 0.2 North West 96.8 95.3 0.9 1.6 0.7 1.0 0.7 0.3 0.0 0.2 0.4 0.7 0.5 0.8 South Central 98.4 96.2 0.5 1.4 0.5 0.6 0.2 0.8 0.1 0.1 0.3 0.6 0.1 0.2 South East 98.1 97.0 1.2 1.6 0.0 0.1 0.1 0.1 0.0 0.0 0.1 0.4 0.6 0.7 South West 97.7 95.8 1.0 2.0 0.3 1.2 0.2 0.7 0.1 0.0 0.5 0.1 0.2 0.1 West Midlands 97.6 93.6 1.5 4.4 0.3 0.1 0.1 0.3 0.0 0.0 0.4 1.5 0.1 0.2 Yorkshire and the Humber 95.8 93.9 1.3 3.3 0.6 0.4 0.4 0.4 0.1 0.2 1.3 1.4 0.5 0.5 *Due to rounding to one decimal place, the total may not add to 100.0 per cent. 11
4.1.4 Registrations by diabetes type and ethnicity Table 5 shows the breakdown of children and young people with diabetes by type and ethnicity. There are a much higher proportion of children and young people with Type 2 diabetes in Asian, Other and Black ethnicities compared to White and Mixed ethnic groups. Table 5: Percentage of children and young people with diabetes by type and ethnic group, England and Wales 2011-12 Diabetes type White Asian Black Mixed-ethnic group Other Not stated England and Wales Type 1 Diabetes 97.4 96.3 85.5 91.7 91.6 95.4 Type 2 Diabetes 1.0 2.1 8.7 6.2 7.1 2.7 Cystic Fibrosis Related Diabetes Monogenic forms of Diabetes (gene known) Monogenic forms of diabetes (gene unknown) Other specified Diabetes Not specified Diabetes 0.5 0.2 0.4 0.0 0.3 0.6 0.4 0.0 0.7 0.3 0.0 0.1 0.0 0.0 0.3 0.1 0.0 0.0 0.5 0.2 3.0 1.0 0.3 0.6 0.3 1.2 1.5 0.6 0.6 0.6 4.2 Incidence rates 4.2.1 Incidence rates by country for type 1 diabetes This section includes age and sex-specific diabetes population incidence rates for Type 1 diabetes for 2011-12. Recent evidence suggests that the incidence of Type 1 diabetes in children is rising and may double by 2020, which has important health care implications 1. NPDA incidence time trends need to be interpreted with caution, as the increase may be due to better reporting coverage of patients with diabetes, rather than to a true increase in incidence. The age-specific incidence rate is defined as the number of newly diagnosed cases of diabetes in a specific age group over a specific time period (i.e. 2011-12 year period) per total number of children and young people in that age group in the general population. Table 6 and Figure 4 a and b show incidence rates by age and sex for England and Wales and combined in 2011-12. The 10-14 age group years had the highest rate of incidence of Type 1 diabetes. In England and Wales, boys had a marginally higher rate of incidence than girls for 2011-12, except in the 0-4 year age group. Note that the number of patients in the age group 20-24 years is small and only represents patients in this age group still being cared for at a PDU. By this age many patients will have moved to adult services and the rate in this age group will not represent a true rate. The reader should compare the rates published in the adult NDA 2011-12 for more information on this age range 2. 12
Table 6: Type 1 diabetes incidence rates per 100,000 persons by age group and sex, 2011-12 England Wales England and Wales Age group Boys Girls Boys Girls Boys Girls 0-4 12.5 13.8 9.8 11.5 12.4 13.6 5-9 24.8 20.6 17.9 31.5 24.5 23.5 10-14 35.5 28.3 40.6 40.4 35.8 29.0 15-19 6.6 5.4 5.9 4.1 6.5 5.4 20-24 0.1 0.0 0.9 0.0 0.2 0.0 Total under 25 15.2 13.4 14.3 16.3 15.2 13.6 Figure 4: Type 1 diabetes incidence rates per 100,000 persons by age group and sex, 2011-12 4a) Age-Sex Type 1 Diabetes Incidence Rates by Country 4b) Age-Sex Type 1 Diabetes Incidence Rates for England and Wales Combined 13
Figure 5 shows the incidence rate (numbers of new cases per 100,000 age-specific population) in 2011-12, by country and by English region. For each region, the age group 10-14 years had the highest incidence per 100,000 persons in that age group, followed by those in age group 5-9 years. In addition, the incidence rate in England for all children and young people under 25 years is lower than the rate in Wales. Among all the regions in England, London has the lowest incidence rate of Type 1 diabetes. Figure 5: Type 1 diabetes incidence rate by country and English region, 2011-12 14
5. Care processes and treatment targets Audit question: What proportion of children and young people with diabetes are getting the key age-specific processes of diabetes care, and what proportion achieve treatment targets? The NPDA collects information on the key care processes, recommended by the National Institute for Health and Care Excellence (NICE), for children and young people with diabetes 3. The NPDA measures the percentage of children and young people with diabetes who are receiving the key processes of care which include: Glycated Haemoglobin A1c () Body Mass Index (BMI) (from 2011-12 both height and weight were recorded and BMI calculated) Blood pressure Urinary albumin Cholesterol Eye screening Foot examination Key care processes are recorded to monitor diabetes management and detect long-term complications at the earliest treatable stage. Guidelines specify a starting age of 12 years for commencing all care processes with the exception of, which should be recorded in children and young people of all ages with diabetes. The NPDA incorporates data collection for the age-relevant care process and provides analysis on this information. The measurement of blood creatinine was removed from the dataset for 2011-12, as it was deemed to be poorly representative as a care process in children and young people with diabetes. In the analysis, children and young people were included if they had had a complete year of care, i.e. for 2011-12 had been diagnosed prior to 1st April, 2011 and for all care processes except were 12 years of age or older on 1 April, 2011. Furthermore, the data entered needed to be valid and have a date of measurement recorded that was within the audit year. 5.1 Care processes There has been a steady year-on-year improvement in the recording of all care processes individually, apart from and BMI (Table 7). For 2011-12 multiple data were collected on each patient, whereas previously it was a single data point. For BMI both height and weight were collected for 2011-12, which is more representative of the data collected by PDUs. In the 2011-12 NPDA, the percentage of children and young people over the age of 12 years with all care processes recorded has increased to 6.7% (Table 7 and Figure 6). Although this represents an improvement, the figure remains low. The NPDA is unable to validate this figure against patient records, as there may be significant under-reporting of the care processes being performed, but not recorded for audit purposes. The proportion receiving all checks is significantly less than the proportion in the NDA 2011-12 for adults receiving all eight adult care processes, which shows an uptake of 60.5% for all diabetes and 42.4% for Type 1 diabetes 4. 15
Table 7: Percentage of children and young people 12-24 having key age-specific care processes recorded (for this is all ages), 2004-05 to 2011-12 2004-05 2005-06 2006-07 2007-08 2008-09 2009-10 2010-11 2011-12 73.2 77.6 84.7 89.1 89.6 90.1 92.8 89.3 BMI 50.5 53.0 60.5 73.2 66.0 70.2 75.3 64.7 Blood pressure 44.1 40.6 53.3 60.1 57.1 58.8 62.7 67.7 Urinary albumin 18.7 23.3 30.3 34.1 32.2 36.5 40.3 40.7 Cholesterol 18.2 17.5 22.6 32.1 30.5 29.9 34.9 44.4 Eye screening 17.7 15.3 25.2 25.7 26.9 25.8 35.8 36.9 Foot examination 17.4 15.4 21.3 23.5 23.1 24.5 31.9 34.4 % with all care processes recorded 2.0 2.6 3.6 5.0 5.2 4.1 5.8 6.7 Figure 6: Percentage of children and young people with diabetes aged 12 years and over having all care processes recorded, 2011-12 Figure 7 shows the percentage of care processes incomplete (apart from ), by PDU. These care processes include measurement of cholesterol, blood pressure, urinary albumin, body mass index (both height and weight), eye screening and foot examination. Individual Units can be identified in Appendix A by their PZ code. There are only four PDUs that returned results of 100% incompleteness, with a wide variation for others. This is much improved on 2010-11, when there were 20 such units. 16
Figure 7: Percentage of care process incomplete (except ) by PDU, 2011-12 PDU PZ codes* *A list of PDU PZ codes and corresponding Unit names can be found in Appendix A. 17
5.2 analysis This section focuses specifically on as it is recommended as the best indicator of long-term diabetes control. 3 The following analysis examines the percentage of children and young people, of all ages, who had their checked and recorded. For the 2011-12 Audit, multiple recordings of could be submitted for each patient. This differs from previous audits where the last recorded was submitted to the NPDA during the audit year. In the analysis, children and young people were included if they had had a complete year of care, i.e. for 2011-12 had been diagnosed prior to 1st April, 2011. Table 8 and Figure 8 show the percentage of children and young people in different age groups by sex and nation who had their measured. In England 89.5% of boys and 89.4% of girls under the age of 25 years had their measured, and 86.4% of boys and 88.6% of girls in Wales. Table 8: Percentage of children and young people with measured, by age and sex, 2011-12 England Wales Boys Girls Boys Girls 0-4 92.9 90.1 94.7 92.9 5-9 92.0 90.9 95.3 95.7 10-14 90.3 91.5 96.0 96.5 15-19 87.8 87.0 69.8 75.8 20-24 53.4 56.3 0.0 0.0 Total Under 25 89.5 89.4 86.4 88.6 Figure 8: Percentage of children and young people with measured by age and sex, 2011-12 Figure 9 (overleaf) is a bar chart of the percentage of patients who did not have the care process completed, by PDU. The chart is similar to 2010-11 where 8 PDUs submitted less than 50% of their data. 18
Figure 9: Percentage who did not have the care process completed, England and Wales by PDU, 2011-12 120.0 100.0 80.0 60.0 40.0 20.0 0.0 9 18 24 29 38 47 50 57 62 72 86 96 111 119 130 153 167 178 186 215 223 238 5 171 231 242 49 64 156 33 99 7 175 101 30 183 113 121 10 32 225 94 76 127 177 141 31 4 168 91 20 173 159 82 202 128 157 12 36 109 137 163 213 74 230 1 226 145 219 14 59 68 97 151 190 22 132 193 187 122 228 220 56 110 191 108 75 107 139 PDU PZ codes* *A list of PDU DU codes and corresponding Unit names can be found in Appendix A. 19
6. Outcomes of care 6.1 Treatment targets Treatment targets can be viewed as part of the process of care or as an 'intermediate outcome', i.e. an intermediary step between a care process (what is done to the patient) and a 'hard' endpoint such as development of complications. For 2011-12 the NPDA has reported values in accordance with the International Federation of Clinical Chemistry and Laboratory Medicine (IFCC) standardised concentrations of mmol/mol, indicating the Diabetes Control and Complications Trial (DCCT) aligned measures of percentage shown in brackets. For 2011-12, multiple s were submitted on each patient to give a more representative measure of diabetes control over the year of care, and to come into line with other international reporting audits and registries. values recorded less than three months from diagnosis were excluded as they are not representative of a patients overall diabetes control. In keeping with other international audits and registries the median value for the year for each patient was used in the analysis. Furthermore, there was little difference between means and medians for each patient. 6.1.1 target achievement Table 9 shows the percentage of children and young people with diabetes achieving the target ranges of <58 mmol/mol (7.5%), 58 mmol/mol (7.5%) to 80 mmol/mol (9.5%), and >80 mmol/mol (9.5%) by country and sex in 2011-12. Only 16.7% of boys and 18.1% of girls achieve a target of <58 mmol/mol (7.5%) nationally. The greatest number of patients have their recorded as between 58 mmol/mol (7.5%) and 80 mmol/mol (9.5%). There is virtually no difference in the percentage of children and young people within the categories between England and Wales. Around one quarter of children and young people with diabetes have an of >80 mmol/mol (9.5%). Figure 10 shows the percentage of children and young people with diabetes achieving the NICE recommended targets of <58 mmol/mol (7.5%), 58 mmol/mol (7.5%) to 80 mmol/mol (9.5%), and >80 mmol/mol (9.5%) by country in 2011-12. Table 9: Percentage of children and young people with diabetes achieving the target of <58 mmol/mol (7.5%), 58 mmol/mol (7.5%) to 80 mmol/mol (9.5%), and >80 mmol/mol (9.5%), by country and sex, 2011-12 <58 mmol/mol (7.5%) 58 mmol/mol (7.5%) to 80 mmol/mol (9.5%) >80 mmol/mol (9.5%) Boys Girls Total Boys Girls Total Boys Girls Total England 1,721 1,444 3,165 5,474 4,963 10,437 2305 2,238 4,543 % 16.7 18.1 17.4 57.4 57.6 57.5 25.9 24.3 25.0 Wales 109 101 210 348 348 696 161 148 309 % 16.9 17.6 17.3 58.3 56.3 57.2 24.8 26.1 25.5 England and Wales 1,545 1,830 3,375 5,311 5,822 11,133 2,386 2,466 4,852 % 16.7 18.1 17.4 57.5 57.5 57.5 25.8 24.4 25.1 20
Figure 10: Percentage of children and young people achieving the NICE recommended target of <58 mmol/mol (7.5%), 58 mmol/mol (7.5%) to 80 mmol/mol (9.5%), and >80 mmol/ mol (9.5%), by country, 2011-12 Table 10 shows the percentage of children and young people with diabetes by target band achieved, for England and Wales, for 2010-11 and 2011-12. The percentage achieving an of less than 58 mmol/mol (7.5%) in England and Wales, has increased from 15.8% in 2010-11 to 17.4% in 2011-12. Caution should be taken in the interpretation of this change, due to the change in the analysis of summarised above. Table 10: Percentage by target band achieved, England and Wales, 2009-10 and 2011-12 England Wales England and Wales Target Band 2010-11 2011-12 2010-11 2011-12 2010-11 2011-12 <48 mmol/mol (6.5%) 4.3 3.8 4.6 3.8 4.3 3.8 >48 mmol/mol (6.5%) and <58 mmol/mol (7.5%) 11.4 13.6 12.9 13.5 11.5 13.6 Total <58 mmol/mol (7.5%) 15.7 17.4 17.5 17.3 15.8 17.4 >58 mmol/mol (7.5%) and <80 mmol/mol (9.5%) 55.5 56.2 56.8 55.4 55.5 56.2 >80 mmol/mol (9.5%) and <102 mmol/mol (11.5%) 21.0 19.5 17.8 20.1 20.8 19.5 >102 mmol/mol (11.5%) and <124 mmol/mol (13.5%) 5.6 5.0 6.0 5.3 5.7 5.1 >124 mmol/mol (13.5%) and <147mmol/mol (15.5%) 2.0 1.7 1.9 1.9 2.0 1.7 >147mmol/mol (15.5%) and <169 mmol/mol (17.5%) 0.2 0.1 0.0 0.0 0.2 0.1 >169 mmol/mol (17.5%) 0.0 0.0 0.0 0.1 0.0 0.0> 21
Table 11 and Figure 11 show target band achieved (percentage and number) by ethnic group, in 2011-12. The 'Other' ethnic group has the highest percentage achieving the target of <58 mmol/mol (7.5%), with the lowest in the 'Black' ethnic group. 'Black' and 'Mixed' ethnic groups had the highest percentage of children and young people with >80 mmol/mol (9.5%). Table 11: target band achieved (number and %) by ethnic group, 2011-12 target band White Mixed Asian Black Other Not stated <58 mmol/mol (7.5%) Number 2,496 56 131 70 49 520 % 17.0 16.2 16.9 13.9 21.8 20.2 >58 mmol/mol (7.5%) and Number 8,559 177 436 205 122 1,481 <80 mmol/mol (9.5%) % 58.3 51.3 56.3 40.8 54.2 57.5 >80 mmol/mol (9.5%) Number 3,617 112 207 227 54 574 % 24.7 32.5 26.7 45.2 24.0 22.3 Note: Due to rounding, percentages in Table 11 do not all add to 100 percent. Figure 11: Percentage of children and young people with diabetes by target band achieved and Ethnic Group, 2011-12 Figure 12 shows percentage achievement of target of <58 mmol/mol, England and Wales combined by PDU, in 2011-12. Appendix A shows the individual PDU data. Please note: where the percentage of incomplete data is high, or the number of patients submitted low, the validity of the percentage with an <58 mmol/mol (7.5%) for an individual PDU should be interpreted with caution, as it may not truly represent that unit s overall outcome. Incomplete data for a patient is defined as: no submitted, invalid result, no date attached to the result or date outside the Audit period. See Appendix A for further details for each PDU. 22
Figure 12: Percentage achievement of target of <58 mmol/mol (7.5%), by PDU, 2011-12. 100.0 90.0 80.0 70.0 60.0 50.0 40.0 30.0 20.0 10.0 0.0 48 88 118 144 40 75 107 135 139 143 29 226 20 76 31 152 140 73 120 220 156 78 200 170 33 105 203 230 38 167 84 173 232 125 19 225 113 138 169 213 202 82 146 193 190 176 178 174 80 188 191 68 215 64 53 114 131 67 11 89 60 222 26 52 55 160 163 172 121 221 240 18 41 127 162 182 65 134 151 189 24 56 47 150 238 128 102 1 22 199 106 122 177 183 94 157 186 50 28 58 86 136 10 2 15 74 216 9 90 99 126 164 175 137 14 62 112 231 45 141 111 185 159 242 149 181 72 133 158 12 16 218 5 97 180 54 168 27 34 91 49 100 153 104 132 32 4 129 36 184 130 171 119 42 101 109 6 35 145 228 69 179 223 96 7 17 110 57 219 92 59 30 206 187 23 234 108 PDU PZ codes* *A list of PDU PZ codes and corresponding Unit names can be found in Appendix A. 23
6.1.2 Paediatric Diabetes Unit Variation in Table 12 shows mean and standard deviation, median and interquartile ranges for for England, Wales and the English Regions. The mean and median for each region are similar, with means ranging between 68 and 76 mmol/mol (8.4% to 9.1%), and medians between 67 and 73 mmol/mol (8.3% to 8.8%). Table 12: Baseline values and statistics for mean and standard deviation, median and interquartile ranges for mmol/mol by country and English region Standard deviation 25 th percentile 75 th percentile Interquartile range England 73 (8.8%) 71 (8.6%) 18 (1.6%) 62 (7.8%) 81 (9.6%) 20.0 (1.8%) Wales 73 (8.8%) 71 (8.6%) 18 (1.7%) 62 (7.8%) 81 (9.6%) 20.0 (1.8%) Regions in England East of England 75 (9.0%) 72 (8.7%) 18 (1.6%) 63 (7.9%) 84 (9.8%) 21 (1.9%) East Midlands 71 (8.6%) 68 (8.4%) 16 (1.5%) 60 (7.6%) 77 (9.2%) 17 (1.6%) London 74 (8.9%) 71 (8.6%) 20 (1.8%) 61 (7.7%) 84 (9.8%) 23 (2.1%) North East 73 (8.8%) 71 (8.6%) 17 (1.6%) 62 (7.8%) 81 (9.5%) 19 (1.8%) North West 72 (8.7%) 68 (8.4%) 17 (1.6%) 61 (7.7%) 79 (9.4%) 19 (1.7%) South Central 68 (8.4%) 67 (8.3%) 15 (1.4%) 59 (7.5%) 76 (9.1%) 18 (1.6%) South East 74 (8.9%) 71 (8.6%) 17 (1.6%) 63 (7.9%) 81 (9.6%) 19 (1.8%) South West 73 (8.8%) 71 (8.6%) 17 (1.6%) 62 (7.8%) 80 (9.5%) 19 (1.7%) West Midlands 76 (9.1%) 73 (8.8%) 19 (1.7%) 63 (7.9%) 85 (9.9%) 22 (2.0%) Yorkshire and the Humber 73 (8.8%) 71 (8.6%) 17 (1.6%) 61 (7.7%) 80 (9.5%) 20 (1.8%) The following box plots (Figure 13 to Figure 22) show the median, interquartile range and outlying values of measurements by PDU (refer to Appendix A for the identification of each unit). The 5 Units which submitted incomplete data are excluded from the box plots. The PDUs have been separated by the various countries and regions in England. Please note: Where the % of incomplete data is high, or the number of submitted patients low, care must be taken in the interpretation of the results for an individual PDU. Refer to Appendix A for details of incomplete data and patient numbers. 24
Figure 13: Box and whisker plots of by PDU, Wales, 2011-12* Figure 14: Box and whisker plots of by PDU, East England* Figure 15: Box and whisker plots of by PDU, Yorkshire and the Humber* *Reference lines represent the upper and lower NICE targets of 58mmol/mol (7.5%) and 80mmol/mol (9.5%), respectively 25
Figure 16: Box and whisker plots of by PDU, East Midlands* Figure 17: Box and whisker plots of by PDU, West Midlands* Figure 18: Box and whisker plots of by PDU, South Central* *Reference lines represent the upper and lower NICE targets of 58mmol/mol (7.5%) and 80mmol/mol (9.5%), respectively 26
Figure 19: Box and whisker plots of by PDU, North West* Figure 20: Box and whisker plots of by PDU, North East* Figure 21: Box and whisker plots of by PDU, South West* *Reference lines represent the upper and lower NICE targets of 58mmol/mol (7.5%) and 80mmol/mol (9.5%), respectively 27
Figure 22: Box and whisker plots of by PDU, London* Figure 23: Box and whisker plots of by PDU, South East* *Reference lines represent the upper and lower NICE targets of 58mmol/mol (7.5%) and 80mmol/mol (9.5%), respectively 28
7. Conclusions and future directions The increased participation in the 2011-12 National Paediatric Diabetes Audit is an indicator that those delivering care to children and young people with diabetes value the importance of the annual audit. There have been some improvements in the recording of individual care processes, although the proportion of patients receiving all seven care processes remains low. The increased number of children and young people with an <58 mmol/mol (7.5%) is an encouraging sign that the tide has turned and marks the start of a year on year improvement in this outcome measure. There is of course much variability in this figure across England and Wales, which needs addressing through quality assurance programmes such as the peer review process, already established in England. The development of the Regional Networks and the introduction of the Best Practice Tariff in England will contribute towards delivery of a high-quality service to children and young people with diabetes. The NPDA will continue to monitor this process by mapping the recording of care processes and clinical outcomes. The NPDA team is aware that the new dataset and the new EWP for submission of data established for 2011-12 needs time to bed in, but we believe that in the long term it will provide an improved Audit that can be benchmarked equally against Audits and Registries internationally. 29
8. Acknowledgments and collaborators National Paediatric Diabetes Audit Project Board Professor Neena Modi, Professor of Neonatal Medicine, Imperial College London (Project Executive, Project Board Chair) Dr Justin Warner, Consultant in Paediatric Endocrinology and Diabetes, Cardiff and Vale University Health Board (RCPCH Lead) Dr Jeremy Allgrove, Consultant Paediatric Endocrinologist, Barts Health NHS Trust (IT Solutions Adviser) Mr Siôn Morris (Project Manager, RCPCH) Ms Katie Beddows, Paediatric Diabetes Specialist Nurse, Stockport NHS Foundation Trust (Senior User) Ms Rita Ranmal (Programme Lead, RCPCH) Project support Ms Naima Hussein (Project Administrator, RCPCH) Data analysis Dr Michael Soljak (Clinical Research Fellow, Imperial College London) Ms Swarna Khare (Research Assistant, Imperial College London) National Paediatric Diabetes Audit Dataset Working Group Dr Fiona Campbell, Consultant Paediatric Diabetologist, Leeds Teaching Hospitals NHS Trust (Chair) Dr Rakesh Amin, Consultant in Paediatric and Adolescent Endocrinology and Diabetes, Great Ormond Street Hospital for Children NHS Trust Dr James Greening, Consultant Paediatric Endocrinologist and Diabetologist, University Hospitals Leicester NHS Trust Dr Piyusha Kapila, Consultant Paediatrician, North Middlesex University Hospital NHS Trust Mr Gavin Terry, Policy Manager, Diabetes UK Ms Helen Thornton, Paediatric Diabetes Specialist Nurse, St Helens and Knowsley Teaching Hospitals NHS Trust National Paediatric Diabetes Audit Patient Reported Experience and Outcome Measures Working Group Dr Deborah Christie, Consultant Clinical Psychologist and Reader in Paediatric and Adolescent Psychology, University College London Hospitals NHS Foundation Trust (Chair) Ms Judith Campbell, Paediatric Diabetes Specialist Nurse, Central Manchester University Hospitals NHS Foundation Trust Ms Kate Fazakerley, Parent representative Ms Tat Gray, Experience Consultant Professor Peter Hindmarsh, Professor of Paediatric Endocrinology, University College London Mr Neil Musgrove, Parent representative 30
Dr Shakeel Rahman, Consultant Paediatrician, Harrogate Health Care NHS Trust Mr Gavin Terry, Policy Manager, Diabetes UK Dr Nicola Trevelyan, Consultant Paediatrician, Southampton University Hospitals NHS Trust National Paediatric Diabetes Audit Collaborators Association of Children s Diabetes Clinicians British Society for Paediatric Endocrinology and Diabetes Diabetes UK Juvenile Diabetes Research Foundation Royal College of Nursing The British Dietetic Association The British Psychological Society 31
9. References 1. Department of Health. National Service Framework for Diabetes: London: Department of Health, 2001. 2. Patterson CC, Dahlquist GG, Gyürüs E, Green A, Soltész G. Incidence trends for childhood Type 1 diabetes in Europe during 1989 2003 and predicted new cases 2005 20: a multicentre prospective registration study. The Lancet 2009;373(9680):2027-33. 3. National Institute for Clinical Excellence. Clinical Guideline 15: Type 1 diabetes: Diagnosis and management of Type 1 diabetes in children, young people and adults. In: Excellence NIfC, editor. London: National Institute for Clinical Excellence, 2004. 4. NHS Health and Social Care Information Centre, Diabetes UK. National Diabetes Audit 2011-12: Report 1 Care Processes And Treatment Targets. National Diabetes Audit: The Health and Social Care Information Centre, 2013. 32
10. Appendix A: Data on PDUs in the 2011-12.National Paediatric Diabetes Audit PLEASE NOTE: Where the percentage of incomplete data is high, or the number of patients submitted low, the validity of the percentage with an <58 mmol/mol (7.5%), mean and median for an individual PDU should be interpreted with caution, as it may not truly represent that unit s overall outcome. Incomplete data is defined as: no submitted, invalid result, no date attached to the result or date outside the Audit period*. PDU code PDU name Total no. of patients submitted patients used for outcome analysis % of patients excluded from outcome % with <58 mmol/mol (7.5%) patients excluded from outcome % of incomplete records of care processes except PZ001 Singleton Hospital, Abertawe Bro Morgannwg University Health Board, Wales 155 138 17 11.0 16.7 73 8.8 67 8.3 55.8 PZ002 Norfolk and Norwich University Hospital, Norfolk and Norwich University Hospital Trust, East of England 291 102 189 64.9 17.6 74 8.9 69 8.5 34.2 PZ004 Northampton General Hospital, Northampton General Hospital NHS Trust, East Midlands 194 170 24 12.4 22.9 70 8.6 67 8.3 43.3 PZ005 Derbyshire Children s Hospital, Derby Hospitals NHS Foundation Trust, East Midlands 254 233 21 8.3 21.0 70 8.6 68 8.4 75.9 PZ006 Doncaster Royal Infirmary, Doncaster and Bassetlaw Hospitals NHS Foundation Trust, Yorkshire and the Humber 149 124 25 16.8 25.0 72 8.7 69 8.5 33.5 PZ007 John Radcliffe Hospital, Oxford Radcliffe Hospitals NHS Trust, South Central 336 306 30 8.9 27.8 66 8.2 64 8.0 25.3 PZ009 Macclesfield District General Hospital, East Cheshire NHS Trust, North West 94 89 5 5.3 18.0 70 8.6 66 8.2 26.3 PZ010 Luton and Dunstable Hospital, Luton and Dunstable Hospital NHS Foundation Trust, East of England 133 120 13 9.8 17.5 75 9.0 73 8.8 24.1 PZ011 Glan Clwyd District General Hospital, Besti Cadwaladr University Health Board, Wales 117 103 14 12.0 13.6 79 9.4 75 9.0 50.5 PZ012 Barnet Hospital, Barnet and Chase Farm Hospitals NHS Trust, London and South East 109 88 21 19.3 20.5 74 8.9 69 8.4 61.6 *For to be included in the analysis the patient needed a valid date of diagnosis, a valid submitted value, a date of submission which was within the audit year. Values obtained less than 3 months from diagnosis were not included. Where more than one value was submitted for a patient the median value was calculated for the audit year. 33
PLEASE NOTE: Where the percentage of incomplete data is high, or the number of patients submitted low, the validity of the percentage with an <58 mmol/mol (7.5%), mean and median for an individual PDU should be interpreted with caution, as it may not truly represent that unit s overall outcome. Incomplete data is defined as: no submitted, invalid result, no date attached to the result or date outside the Audit period*. PDU code PDU name Total no. of patients submitted patients used for outcome analysis % of patients excluded from outcome % with <58 mmol/mol (7.5%) patients excluded from outcome % of incomplete records of care processes except PZ014 Chase Farm Hospital, Barnet and Chase Farm Hospitals NHS Trust, London and South East 75 43 32 42.7 18.6 74 8.9 68 8.4 73.8 PZ015 Wythenshawe Hospital, University Hospital of South Manchester NHS Foundation Trust, North West 81 74 7 8.6 17.6 70 8.6 68 8.4 82.9 PZ016 Bassetlaw Hospital, Doncaster and Bassetlaw Hospitals NHS Foundation Trust, Yorkshire and the Humber 66 58 8 12.1 20.7 70 8.6 69 8.5 31.7 PZ017 Dorset County Hospital, Dorset County Hospital NHS Foundation Trust, South Central 92 86 6 6.5 27.9 68 8.4 65 8.1 61.8 PZ018 Worthing Hospital, Western Sussex Hospitals NHS, London and South East 116 105 11 9.5 15.2 74 8.9 69 8.5 37.7 PZ019 Basildon Hospital, Basildon and Thurrock University Hospitals NHS Foundation Trust, East of England 240 219 21 8.8 10.5 77 9.2 74 8.9 77.2 PZ020 Diana Princess Of Wales Hospital, Northern Lincolnshire and Goole Hospitals NHS Foundation Trust, Yorkshire and the Humber 122 107 15 12.3 4.7 81 9.6 75 9.0 54.6 PZ022 West Cumberland Hospital, North Cumbria University Hospitals NHS Trust, North West 58 36 22 37.9 16.7 74 8.9 75 9.0 34.8 PZ023 St George's Hospital, St George's Healthcare NHS Trust, London and South East 145 5 140 96.6 40.0 63 7.9 63 7.9 66.7 PZ024 East Kent Hospitals NHS Trust, East Kent Hospitals University NHS Foundation Trust, London and South East 317 298 19 6.0 16.1 74 8.9 72 8.7 34.0 PZ026 Hull Royal Infirmary, Hull and East Yorkshire Hospitals NHS Trust, Yorkshire and the Humber 262 243 19 7.3 14.0 76 9.1 73 8.9 78.9 PZ027 Friarage Hospital, South Tees Hospitals NHS Trust, Yorkshire and the Humber/ North East 65 60 5 7.7 21.7 69 8.5 66 8.2 45.9 *For to be included in the analysis the patient needed a valid date of diagnosis, a valid submitted value, a date of submission which was within the audit year. Values obtained less than 3 months from diagnosis were not included. Where more than one value was submitted for a patient the median value was calculated for the audit year. 34