Retrospective study of long-term epithelial ovarian cancer survivors: clinical data and population-based cancer registry data

Introduction:

Since diagnosis of ovarian cancer often occurs at a late disease stage, survival prospects are usually unfavorable. However, in clinical practice we experience long-term survivors of advanced stage ovarian cancer. Knowledge is sparse regarding health status, disabilities, quality of life and health care needs of long-term ovarian cancer survivors (LTS-OC) in Germany as well as regarding determinants of long-term survival. We present first results from an analysis of a clinical and a population based data base to characterize LTS-OC.

Methods:

The study is based on two data sources: the German population-based cancer registries (G-PCR) and the „Tumorbank Ovarian Cancer“ (TOC), a clinical data set with active follow up of ovarian cancer patients treated at the Charité hospital, Berlin. A subset of G-PCR were included based on data quality criteria. Descriptive analyses were conducted on LTS-OC (survival ≥8-years) from the OC cohort diagnosed 2003 – 2005, and on the clinical TOC dataset.

Results:

Overall, 2.795 LTS-OC were identified in the G-PCR data and 225 in TOC. The majority of LTS-OC in TOC were diagnosed at a late stage (53.8% ≥FIGO 3; 4% missings), while In G-PCR, the proportion was 34.4% (22.4% missings). Median age at diagnosis was 60 (range 15 – 94) in G-PCR and 52 years (range 19 – 79) in TOC. LTS-OC were mainly serous carcinoma (including endometrioid), in both TOC and G-PCR. Clear cell and mucinous adenocarcinoma were rare (11 cases in TOC, 428 in G-PCR).

Conclusion:

A large group of LTS-OC is initially diagnosed with late stage OC. LTS-OC in the clinical setting of the Charité were generally younger than the general patient population. An assessment of health status and health care needs of ovarian cancer survivors in Germany would benefit from recruitment via cancer registries, especially with regard to older LTS-OC.