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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 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
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?
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
GBA: Municipal Personal Records Database • Administrative database • Goal: provide data for population statistics • Demographic information • 1995-2008
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
Difficulty hospitalization register (1) Hospitalizations lost if a person changes address Postal code 1 Postal code 2 GBA X LMR
Difficulty hospitalization register (2) Hospitalized persons are not always a unique person Not unique Unique Not unique GBA LMR
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%)
Practical issues • Remote access to CBS • Shared computer • Outputs
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
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
Methods: Treatment Risk Factor Analysis • Within CCS • Same Poisson model • Treatment Risk factors: • Cancer treatments
Hospitalization Rate Over Time CCS POP
Treatment Risk Factors Within CCS Significant risk factors:
Objective 2: Hospitalization-related health problems in CCS hospitalizations
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)
Statistical Analysis • Longitudinal analysis: CCS vs POP • Poisson regression model • Gender, year of birth and calendar year • Recurrent events • Censored recurrences
Discussion & Conclusion • 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
Contributers & Acknowledgement 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