Cohort Profile: The Danish Testicular Cancer Late Treatment Effects Cohort (DaTeCa-LATE)

Abstract

The cohort was set up in order to analyze late effects in long-term testicular cancer survivors (TCS) and to contribute to the design of future follow-up programs addressing and potentially preventing late effects. Data for this cross-sectional study were collected between January 1, 2014, and December 31, 2016, among living Danish TCS and 60% agreed to participate in the cohort (N = 2,572). Mean time since testicular cancer (TC) diagnosis was 18 years (range 7–33) and mean age of participants was 53 years (range 25–95). Data consist of results of a questionnaire with patient reported outcomes which covers a broad range of items on late-effects. The study also included data obtained through linkages to Danish registries, a biobank, and clinical data from hospital files and pathology reports originating from the Danish Testicular Cancer Database (DaTeCa). The treatment during the observation period has been nearly the same for all stages of TC and is in agreement with today’s standard treatment, this allows for interesting analysis with a wide timespan. We have extensive data on non-responders and are able to validate our study findings. Data from a Danish reference population (N = 162,283) allow us to compare our findings with a Danish background population. The cohort can easily be extended to access more outcomes, or include new TCS. A limitation of the present study is the cross-sectional design and despite the large sample size, The Danish Testicular Cancer Late Treatment Effects Cohort (DaTeCa-LATE) lacks statistical power to study very rare late effects. Since it was voluntary to participate in the study we have some selection bias, for instance, we lack responders who were not in a paired relationship, but we would still argue that this cohort of TCSs is representative for TCSs in Denmark.Collaboration and data accessResearches interested in collaboration with the DaTeCa-LATE study group please contact Professor Gedske Daugaard kirsten.gedske.daugaard@regionh.dk.

Sexual Function in a Nationwide Cohort of 2,260 Survivors of Testicular Cancer after 17 Years of Followup

“…Between 2014-2016 we conducted a questionnaire survey evaluating patient reported outcomes in Danish TCS with a median follow-up of 17 years after diagnosis (DaTeCa-LATE) 5 . All Danish TCS included in the national DaTeCa database (TC patients treated from 1984-2007) 6 were invited, and of 4271 eligible TCS, 2572 (60%) filled in the 167-item questionnaire.…”

“…All Danish TCS included in the national DaTeCa database (TC patients treated from 1984-2007) 6 were invited, and of 4271 eligible TCS, 2572 (60%) filled in the 167-item questionnaire. Detailed information about the design of DaTeCa-LATE can be found elsewhere 5 . Briefly, responders were older than non-responders, and in line with other studies more responders were in relationship 7 , while there was no difference in Charlson co-morbidity index between responders and non-responders.…”

“…We present data from a large nationwide and population-based cross-sectional study of 2572 long-term TCS treated with today's standard of care 5 . The aim of the study was (1) to clarify the association between treatment modalities and different aspects of sexual function and (2) to investigate if possible associations between treatment modalities and sexual function were mediated through psychological factors or physiological factors.…”

Quality of life, anxiety and depression patient‐reported outcome measures in testicular cancer: A systematic review

“…A diagnosis of TCa has a significant impact on mental health and in like manner, identification of a mental health disorder affects the treatment plan. TCa patients have a higher suicide mortality rate, depression and anxiety prevalence when compared to the general population estimates 11–14 . Currently, there is no recommended universal PROM questionnaire for screening of these constructs in TCa, only guidance that selection of the most appropriate PROM depends on the clinical setting (i.e., treatment modality, patient characteristics) 35 .…”

“…Several studies have shown that psycho‐social and functional limitations of TCa compromise overall patient QoL and health‐related QoL (HR‐QoL). These studies have also shown higher rates of depressive symptoms (34%), depression and anxiety disorders (19% vs. 13.5%) compared to the general population 11–14 …”