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Anna Font-Gonzalez PhD Student Emma Children ’ s Hospital/Academic Medical Center Amsterdam, The Netherlands. Burden of disease in childhood cancer survivors and consequences for the healthcare system: a follow-up study using medical record linkage.

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Anna font gonzalez phd student emma children s hospital academic medical center

Anna Font-Gonzalez

PhD Student

Emma Children’s Hospital/Academic Medical Center

Amsterdam, The Netherlands

Burden of disease in childhood cancer survivors and consequences for the healthcare system: a follow-up study using medical record linkage

Dag van de Gezondheidsstatistieken, 12th September 2013


Anna font gonzalez phd student emma children s hospital academic medical center

Childhood cancer survivors

  • Childhood cancer survivors (CCS): ↑ chronic health conditions

  • Serious outcome of health condition

  • Impact on patients’ daily life

  • Impact on health care system / society

    • Long term trends of hospitalizations over time?

    • Hospitalization-related health problems underlying hospitalizations?


Anna font gonzalez phd student emma children s hospital academic medical center

Objectives

Objective 1. To define long term trends of hospitalizations in CCS over time

Objective 2. To define hospitalization-related health problems in CCS hospitalizations


Anna font gonzalez phd student emma children s hospital academic medical center

GBA: Municipal Personal Records Database

  • Administrative database

  • Goal: provide data for population statistics

  • Demographic information

  • 1995-2008


Anna font gonzalez phd student emma children s hospital academic medical center

LMR: Hospital Discharge Register

  • Administrative register

  • Hospitalization-related health problems: Diagnosis at hospital discharge ICD9-CM

  • Hospitalization registration includes:

    • DoB

    • Gender

    • Postal code at the date of discharge

  • 1995-2005


Anna font gonzalez phd student emma children s hospital academic medical center

Difficulty hospitalization register

 (1) Hospitalizations lost if a person changes address

Postal code 1 Postal code 2

GBA

X

LMR


Anna font gonzalez phd student emma children s hospital academic medical center

Difficulty hospitalization register

 (2) Hospitalized persons are not always a unique person

Not unique Unique Not unique

GBA

LMR


Anna font gonzalez phd student emma children s hospital academic medical center

Cohort Study Using Record Linkage

CCS eligible for linkage

EKZ/ AMC cohort

N=1564

Gender, date of birth and postal code

BSN

Excluded:

Non-linked to GBA

Eligible reference population 1995-2005

N=28 255

Dutch Municipal Population Registry (GBA) N=1477

Gender, date of birth and postal code at the date of discharge

Corresponding year of birth, gender and calendar year (date of 5-year survival)

Excluded:

Non-unique after

5-year survivor

Excluded:Non-unique

after matched date

5-year survival

Dutch National Medical Registry (LMR) 1995-2005

Unique CCS

N=1382 (88%)

Unique Reference Population

N=26 583(94%)


Anna font gonzalez phd student emma children s hospital academic medical center

Practical issues

  • Remote access to CBS

  • Shared computer

  • Outputs



Anna font gonzalez phd student emma children s hospital academic medical center

Specific Aims For Objective 1: Hospitalizations in CCS

  • To determine:

  • Average Relative Hospitalization Rates of CCS in comparison with the reference population

  • Hospitalization rates of CCS over time in comparison to a reference population

  • Hospitalization characteristics in CCS

  • CCS risk groups for hospitalization


Anna font gonzalez phd student emma children s hospital academic medical center

Methods: Hospitalization Rates

  • Hospitalization rates of CCS vs POP

    • Average relative hospitalization rates

    • Rates over time

  • Poisson regression model

  • Adjusted for

  • Gender, year of birth, follow-up time and calendar year

  • Recurrent events


  • Anna font gonzalez phd student emma children s hospital academic medical center

    Methods: Treatment Risk Factor Analysis

    • Within CCS

    • Same Poisson model

    • Treatment Risk factors:

      • Cancer treatments





    Anna font gonzalez phd student emma children s hospital academic medical center

    Treatment Risk Factors Within CCS

    Significant risk factors:



    Anna font gonzalez phd student emma children s hospital academic medical center

    Specific Aims For Objective 2: Hospitalization-related health problems

    1. Average Relative Hospitalization Rate of hospitalization-related health problems in CCS compared with the reference population

    2. Hospitalization rates of hospitalization-related health problems over time compared to a reference population within specific disease groups

    3. Risk factors for hospitalization-related health problems (within CCS)


    Anna font gonzalez phd student emma children s hospital academic medical center

    Statistical Analysis health problems

    • Longitudinal analysis: CCS vs POP

    • Poisson regression model

      • Gender, year of birth and calendar year

      • Recurrent events

      • Censored recurrences


    Anna font gonzalez phd student emma children s hospital academic medical center

    Results health problems



    Anna font gonzalez phd student emma children s hospital academic medical center

    Discussion & Conclusion health problems

    • Childhood cancer survivors have an increased hospitalization rate up to 30 years after primary cancer diagnosis

    • Previously described risks in CCS of neoplasms, endocrine and circulatory diseases translate into increased risk of hospitalizations

    • Implications

    • High and long-term burden of health conditions

    • Need for awareness and knowledge among all healthcare professionals

    • Results can inform follow-up strategies and treatment among CCS and new childhood cancer patients


    Anna font gonzalez phd student emma children s hospital academic medical center

    Contributers & Acknowledgement health problems

    Leontien Kremer CBS

    Huib Caron Datamanagers

    Elske Sieswerda Survivors

    Ronald Geskus KiKa

    Hans Reitsma

    Marcel Dijkgraaf

    Heleen van der Pal

    Floor van Leeuwen

    Richard Heinen