Table 1 Study design

Study objectives

To describe the current state of the follow-up care among childhood and adolescence cancer survivors;

To quantify the occurrence of late effects among this group of survivors

To explore actual follow-up needs of survivors of cancer in childhood or adolescence

To examine the adherence to selected audiological and cardiological follow-up guidelines and to identify factors affecting it;

To review selected follow-up guidelines with the aim to improve and adapt them

Study population

GCCR patients (N = 46.200 individuals); matched comparison group of persons selected from the pool of insured persons of the participating statutory health insurance companies (expected N = 154,000 individuals)

Childhood and adolescence cancer survivors and their relatives – up to 30 patients;

Healthcare professionals – up to 48 persons

GCCR patients with selected diagnoses and corresponding follow-up guidelines

Data collection

Data linkage of GCCR data and health insurance data based on cryptographed identity data via trust centres

Comparison group: Matched random draw procedure from the pool of insured persons according to year of birth and gender of GCCR patients (relation: 1:5)

Episodic narrative interview;

Instrumental case study;

Focus group

Data linkage of GCCR data and health insurance data focused on diagnostic and therapeutic procedures for cardiological and audiological late effects in subgroups with available treatment data; Comparison of groups with different grade of guidelines adherence

Methods

Calculation of prevalence of late effects and frequencies of medical care claims in both the cohort of GCCR cancer cases and the comparison group; estimation of crude, matched and adjusted Prevalence Ratios (PR) using multiple log-linear regression models

Framework analysis

Calculation of prevalence of adherence to guidelines; estimation of crude and adjusted PR for late effects depending on degree of adherence using multiple log-linear regression models