OPTILATER: optimal long-term survival after cancer – a cross-sectional study protocol for a quantitative survey on the care situation of long-term cancer survivors in Germany

TL;DR

This study aims to understand the challenges faced by long-term cancer survivors in Germany and improve their post-treatment care.

Contribution

The study introduces a large-scale survey protocol to assess the care needs of diverse long-term cancer survivors in Germany.

Findings

The survey will assess experiences with care, including diet, mental health, and quality of life.

It will focus on vulnerable groups, such as those with migration backgrounds.

Findings will inform inclusive care strategies for long-term cancer survivors.

Abstract

Cancer survivors in Germany face considerable challenges related to the late and long-term effects of treatment and a lack of post-treatment support. Despite an increasing number of cancer survivors, existing healthcare systems are insufficiently adapted to meet their ongoing needs, particularly for long-term survivors who may experience physical, emotional, and socio-economic hardships. This study aims to address the knowledge gaps in the care situation of long-term cancer survivors, focusing on their experiences and the barriers they face in accessing care.

This study protocol outlines the methodology for a quantitative survey involving up to 3,300 long-term cancer survivors across various cancer types in Germany. The survey assesses their experiences with cancer care, focusing on diet, exercise, mental health, sleep, cognition, overall health-related quality of life, and somatic late effects. Special attention is given to survivors from diverse socio-demographic backgrounds, including those with a migration history, in order to explore the unique challenges they face.

The results of the study will contribute to the development of needs-based care recommendations for cancer survivors, particularly those in potentially vulnerable groups. The findings will inform the design of more inclusive care strategies and interventions, leading to better long-term health outcomes for cancer survivors in Germany.

German Clinical Trials Register: DRKS00032146, registered on 03/12/2024.

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