Long-term care, care needs and wellbeing of individuals after cancer in childhood or adolescence (VersKiK): study protocol of a large scale multi-methods non-interventional study

Abstract

Background It has been shown previously that a relevant proportion of childhood cancer survivors suffers from late effects, which are often directly related to the cancer itself or its therapy, resulting in particular follow-up needs, additionally burdening healthcare systems. Being diagnosed with cancer at a vulnerable stage of development, this group of cancer survivors is at comparatively higher risk of relapse or subsequent cancer. Although national and international follow-up guidelines based on treatment modalities have been developed, their implementation seems to leave room for improvement. Additionally, they lack a sufficient consideration of the survivors’ psychosocial needs, affecting their adherence to them. The aim of the VersKiK study is to provide representative information on late effects in childhood and adolescence cancer survivors in Germany. The main research objectives are: (1) to describe the state of follow-up care among survivors after a cancer diagnosis in childhood or adolescence; (2) to quantify the occurrence of late effects among this group of survivors; (3) to examine the adherence to selected audiological and cardiological follow-up guidelines and to identify factors affecting it; (4) to explore actual follow-up needs of paediatric cancer survivors; (5) to review selected follow-up guidelines with the aim to improve and expand them. Methods VersKiK is designed as a mixed-methods non-interventional study. We will use claims data from statutory health insurance companies in combination with individually linked population-based registry data from the German Childhood Cancer Registry (GCCR). This data base will permit us to quantify diagnoses and procedures in comparison to the general population as well as the adherence to existing follow-up guidelines. Additional information will be obtained through interviews with childhood and adolescence cancer survivors and their informal caregivers, as well as in focus groups with healthcare professionals. Discussion The present study aims to research the actual needs of individuals after cancer diagnosis and treatment in childhood or adolescence – physical, psychological and organisational – in order to improve existing follow-up guidelines. These improvements might further positively affect not only actual care provided to paediatric cancer survivors, but also benefit healthcare systems in general while decreasing consequent medical visits in this group of patients. Trial registration Registered at German Clinical Trial Register (ID: DRKS00025960 and DRKS00026092).

VersKiK qualitative study design: actual follow-up needs of paediatric cancer survivors, their informal caregivers and follow-up stakeholder perceptions in Germany

“…44 Moreover, they are shown to influence survivors' mental and physical health, 45 thus affecting their coping strategies. 46 Details of the VersKiK study are published elsewhere 47 ; the study has a duration of 4 years (September 2020-August 2024).…”

“…Details of the VersKiK study are published elsewhere 47 ; the study has a duration of 4 years (September 2020–August 2024).…”

Implementation of a clinical long-term follow-up database for adult childhood cancer survivors in Germany: a feasibility study at two specialised late effects clinics

“…At least every 5 years, the GCCR carries out questionnaire-based follow-up on relapses and subsequent neoplasms as part of mandated duties (Kaatsch et al 2022;Erdmann et al 2020;Grabow et al 2011;Langer et al 2018). In addition, EpiKiK/GCCR-affiliated investigators have initiated and collaborated on numerous (inter)national studies on long-term health-related outcomes (Kaatsch et al 2022;Byrne et al 2022;van den Oever et al 2023;Kaatsch et al 2021;Aleshchenko et al 2022;Botta et al 2022).…”