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Using linked data for assessing patterns of cancer care. Dianne O’Connell David Goldsbury POC Study Teams Cancer Epidemiology Research Unit Cancer Council, NSW. Overview. Patterns of cancer care studies Use of linked records Validation of linked data sets for patterns of care

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using linked data for assessing patterns of cancer care

Using linked data for assessing patterns of cancer care

Dianne O’Connell

David Goldsbury

POC Study Teams

Cancer Epidemiology Research Unit

Cancer Council, NSW

overview
Overview
  • Patterns of cancer care studies
  • Use of linked records
  • Validation of linked data sets for patterns of care
  • Possible analyses of linked data sets
  • Other research using linked records
patterns of cancer care studies
Patterns of Cancer Care Studies
  • Describe treatment patterns
  • Compare management with guidelines
  • Assess accessibility to care
  • Identify inequities in care
methods
Methods
  • Ad hoc data collections
  • Clinical Cancer Registries
  • Record linkage of routinely collected (administrative) data sets
patterns of cancer care studies1
Patterns of cancer care studies
  • Lung, colorectal, prostate cancers in NSW
  • Methods
    • Identify patients through population-based NSW Central Cancer Registry (CCR)
    • Consent from doctors and patients to pass details on to researchers
    • Informed consent from patients
patterns of care studies methods
Patterns of care studies – methods
  • Questionnaires from treating doctors
    • Find correct doctor
    • Obtain treatment and referral information
    • Field collection where necessary
    • Response rates
      • colorectal 88-97%
      • lung 62%
      • prostate 64%
  • Participants diagnosed 1999-2002
patterns of care studies limitations
Patterns of care studies - limitations
  • Resource intensive
  • Consent rates from patients
  • Response rates from doctors
  • Relies on doctors’ clinical notes
  • Data represents a snapshot and soon out of date
is there an easier way
Is there an easier way?
  • Cancer registry information in Australia does not include treatment
  • Hospital discharge records will not capture or identify all relevant cases of cancer
  • Combined, they may be more useful
use of administrative datasets 1
Use of administrative datasets (1)
  • NSW Central Cancer Registry (CCR)
  • Population-based
    • Cancer is notifiable due to Public Health Act
    • Hospitals, pathology labs, radiation oncologists, nursing homes, deaths
use of administrative datasets 2
Use of administrative datasets (2)
  • NSW Admitted Patient Data Collection (APDC)
    • All hospital separations (discharges, transfers, deaths)
    • All NSW public and private hospitals and day procedure centres
record linkage

Admitted Patient Data Collection

July 1992 - Jun 2003

NSW Central Cancer Registry 1993 - 2002

Record linkage
  • Linked by NSW Health in 2005
  • 86% of CCR cases linked to APDC
  • Procedures & comorbidities identified in APDC records
variables
Variables
  • CCR
    • sex, age at diagnosis, health area and SLA of residence, date of diagnosis, best method of diagnosis, spread of disease at diagnosis, cause of death (if dead), survival time
  • APDC
    • sex, age, health area and SLA of residence, health area of treatment, type of hospital, date of admission, date of separation, procedures, principal diagnosis, additional diagnoses, health insurance status on admission
analysis issues
Analysis issues
  • One record per hospital episode, each with multiple procedure/diagnosis codes
  • Assign relevant formats, SES and accessibility/remoteness categories
  • Identify procedure/diagnosis codes for each type of treatment
  • Summarise!
validation of ccr apdc data
Validation of CCR-APDC data
  • Cancer Council patient surveys were linked to CCR-APDC data set
  • Linked, routinely collected data validated at individual patient level
  • Usefulness of these data for patterns of cancer care studies assessed
validation data
Validation data

Prostate, colorectal and lung cases for linkage

(n=7425)

No CCR link

(n=206)

Link to CCR

(n=7219)

No survey treatment info

(n=576)

Survey treatment info

(n=6643)

No APDC link

(n=516)

Link to APDC

(n=6127)

validation data1
Validation data
  • Overall: 6127 cases with data from patient surveys and administrative records
    • Prostate: 1591 cases
    • Lung: 1580 cases
    • Colorectal: 2956 cases
surgery records missed
Surgery records missed
  • Extra cases in admin data: 2 for prostate, 15 for lung
validity of chemotherapy data
Validity of chemotherapy data

N/A

  • Generally an outpatient procedure, no admission recorded
validity of radiotherapy data
Validity of radiotherapy data
  • As with chemotherapy, often an outpatient procedure with no admission
prostate radiotherapy data
Prostate radiotherapy data
  • Brachytherapy involves general anaesthetic, often a hospital admission
validation conclusions
Validation conclusions
  • Linked routinely collected data useful for:
    • Major surgical procedures
    • Other inpatient procedures (e.g. brachytherapy)
  • Complementary data sources required for:
    • Chemotherapy
    • Radiotherapy
    • Investigative procedures
    • Comorbidities
  • Medicare Australia information to improve data coverage
    • MBS: referrals, diagnostic and therapeutic procedures
    • PBS: medicines
what else can we analyse using these ccr apdc data
What else can we analyse using these CCR-APDC data?
  • Treatment trends over time
  • Time from diagnosis to treatment
  • Distance travelled for treatment (approx.)
  • Changed address at treatment
  • Factors associated with treatment
    • Rural/urban, socioeconomic, age, insurance
  • Survival after treatment
slide26

Patterns of surgical care for prostate cancer in NSW, 1993-2002: rural/urban and socio-economic variation

Andrew Hayen et al

ANZ J Pub Health 2008;32:417-420

radical prostatectomy
Radical prostatectomy

* Adjusted for age, spread of disease and year of diagnosis

time from diagnosis to treatment
Time from diagnosis to treatment

Time to surgery for lung cancer

Using month of diagnosis from CCR

ccr apdc dataset advantages
CCR-APDC dataset - advantages
  • Availability of data
  • Relatively cheap
  • Includes large numbers of individuals
  • Ongoing data collection – monitoring
ccr apdc dataset limitations
CCR-APDC dataset - limitations
  • Incomplete coverage of chemotherapy and radiotherapy
  • Doesn’t cover pathways to diagnosis and referral patterns or outcomes
  • Lack of disease clinical detail (NSW – crude disease staging)
  • Incomplete matching – no hospital record  no treatment
  • Cross-border patient flows
other research with linked records
Other research with linked records
  • Descriptive patterns of care studies for other cancer types
  • Medicare and pharmaceutical benefits data to improve treatment coverage
    • Colorectal cancer referral pathways study
  • Survival follow-up analysis for previous POC studies
  • Hepatitis B and C linked with Cancer Registry (National Centre in HIV Epidemiology and Clinical Research)
  • Cancer Registry linked to Midwives Data Collection (Cancer Institute NSW)