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Data Quality in Renal replacement Therapy Registries: Impact of Data Extraction Strategies.

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Presentation on theme: "Data Quality in Renal replacement Therapy Registries: Impact of Data Extraction Strategies."— Presentation transcript:

1 Data Quality in Renal replacement Therapy Registries: Impact of Data Extraction Strategies

2 Background A study looking at the impact of data extraction strategies. Part of the larger Quest project with the EEC. UK Renal Registry, French REIN Registry, QiN database covering part of Germany

3 Methodology 5 sites per country 20 patients per site Total 300 Data Accuracy assessed against North American Association of Central Cancer Registries (NAACCR) gold standard

4 NAACCR gold standard Case ascertainment has achieved 95% or higher completeness. Fewer than 0.1% duplicate case reports are in the file. All data variables used to create incidence statistics by cancer type, sex, race, age, and county are 100% error-free. Less than 2% of the case reports in the file are missing meaningful information on age, sex, and county. Less than 3% of the cases in the file are missing meaningful information on race (US only).

5 Site visit to check paper records and the hospital renal database. Hospital records checked against information held on Registry Database

6 VariableType and definitionCriterion of accuracy Date of birthdd/mm/yyyy Must be exactly equal to gold standard: Major discrepancy : error in month or year: Minor discrepancy : error in the day GenderM or FMust be exactly equal to gold standard Date of first RRT dd/mm/yyyy first dialysis session Must be exactly equal to gold standard Major discrepancy : error in month or year Minor discrepancy : error in the day Treatment modality Conventional HD, HemoFiltration, HemoDiaFiltration (or Biofiltration) Must be consistent to gold standard. Major discrepancy : peritoneal dialysis Minor discrepancy : lack of precision / HD type unknown Number of HD session/week numericalMust be exactly equal to gold standard Length of HD session Mean length for the week considered Deviation from gold standard must not exceed 30 minutes Vascular access Fistula, graft, catheter or other If change occur during the week, consider most used during the week Must be consistent to gold standard.

7 VariableType and definitionCriterion of accuracy Primary renal disease Glomerulonephritis, pyelonephritis, polycystic kidneys, adult type, diabetes, renal vascular disease, hypertension, miscellaneous, unknown Must be consistent to gold standard. In case of discrepancy, the manager from the centre will arbitrate to define the good value. Weight proximal values in the medical record to the date of declaration Deviation from gold standard must not exceed 10% Heights proximal values in the medical record to the date of declaration Deviation from gold standard must not exceed 10% Diabetes presence or absence as declared in the patient medical record Must be consistent to gold standard. Active cancer presence or absence as declared in the patient medical record Must be consistent to gold standard. Haemoglobin proximal values in the medical record to the date of declaration Deviation from gold standard must not exceed 1g/dl Albumin proximal values in the medical record to the date of declaration Deviation from gold standard must not exceed 5g/l

8 Additional Items First Name Last Name NHS No Local Hospital Number Start Date of RRT on Renal Timeline

9 Validity of a set of Variables REIN Registry QiN Database UK Registry NNN Number of patients controlled 100611 100 Number of variables inspected 14008 554 1400 Major error 91(6.5%)NA 29 (2%) Minor error 31 (2%)NA18 (1%) Missing value in the registry 17 (1%)240 (3%) 281(20%) Information not found in the medical record during the audit 32 (2%)NA0

10 REIN Registry QiN Database UK Registry (100 patients)(611 patients)(100 patients) Major Error Missing value Value not found in Medical record Error Missing value Major error Missing value N (%) Date of birth2 (2%)00NA000 Gender000NA000 date of first RRT16 (16%)01 (1%)NA014 (14%)2 (%) Primary renal disease 13 (13%)02 (2%)NA25 (4%)9 (9%)2 (2%) Treatment modality 001 (1%)NA001 (1%) Number of HD session/week 3 (3%)00NA01 (1%)25 (25%) Length of HD session 4 (4%)00NA02 (2%)29 (29%)

11 REIN Registry QiN Database UK Registry (100 patients)(611 patients)(100 patients) Major Error Missing value Value not found in Medical record Error Missing value Major error Missing value N (%) Weight3 (3%)7 (7%)0NA01 (1%)45 (45%) Heights02 (2%)14 (14%)NA0046 (46%) Diabetes3 (3%)01 (1%)NA0010 (10%) Active cancer10 (10%)02 (2%)NA0011 (11%) Haemoglobin17 (17%)4 (4%)2 (2%)NA01 (1%)5 (5%) Albumin14 (14%)4 (4%)9 (9%)NA01 (1%)6 (6%)

12 UK Results: Field Major Error Minor Error Missing Vascular Access00100 Weight11844 Height0040 Length of HD Sessions2729 Number HD Sessions Week1125 1st RRT1581 Primary Renal Disease1102 Haemoglobin166 Albumin175 Malignancy0011 Diabetic0010 NHS No006 last Name100 Treatment Modality010 First Name000 Date of Birth000 Gender000 Total3348279

13 MISSING IN RENAL IT SYSTEM OR FROM EXTRACTION Missing In Renal System Missing in Extraction Count VA Missing2278100 Weight Missing24244 Height missing400 Dialysis Hours per week missing22729 Dialysis Times per week missing91625 Malignancy Missing110 Diabetes Missing (non-esrf)9110 Hb Missing156 NHS No Missing606 Albumin Missing145 Diagnosis Code Missing202 1st RRT101 38%62%

14 Serious Errors Incorrect Diagnosis in Renal System9 Incorrect date recorded as first RRT date4 Transfer in from another country, transfer letter states 1st RRT in 1997 - date of 1st RRT recorded as date started in UK 3 Incorrect Weight1 Renal System shows started with PD but problematic - discussed with Consultant and agrees that 1st RRT should be date first PD and not when transferred to HD 1 Treatment Modality Haemofiltration but recorded in Renal System as Haemodialysis 1 Pre/Post Weights transposed in euclid extraction15 1st RRT at Registry correct but also has a Timeline start date 8 days earlier which we can't see in either renal system or notes 1

15 Major Errors 1st DX recorded acute with timeline showing start RRT later but actual session are continuous 9 Dialysis start date recorded in Registry - but did recover after 69 days. Re-started as Chronic later same year but outside 90 days. Registry entry incorrect 1 Dialysis started, then stopped and resumed all within 90 days1 Incorrect dialysis details taken from prescription and not calculated from actual dialysis given 10 Lab result at registry more than 1 month out of date8 Lab result different but identifiable within 1 month7 Female changed last name but Registry not updated1

16 Minor Errors/Inconsistencies Start date in Registry but not in Renal Sys - patient transferred in from another unit 5 Diagnosis at Registry same as notes but different or missing in Renal IT system 2 Diagnosis in Registry but not in Renal System - patient transferred in from another unit 1 1st RRT at Registry correct with hosp notes yet Renal System has later date 1

17 How Useful was this exercise? ?Too small a sample Shows the need for accuracy when recording data from paper to Renal Database Data Extraction routines need updating to reflect changing specifications so need for better liaison with system suppliers and in-house programmers when extraction routines not collecting data items as expected Shows the need for the whole Renal Team to understand the advantages for correct data entry.


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