Figure - available from: Journal of Cancer Research and Clinical Oncology
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Rate of number of endocrinological disorders documented in the database per childhood cancer survivor (CCS). RG1: low risk, RG2: intermediate risk, RG3: high risk for late effects. Order of legend labels/sections of respective bars: from bottom (“0 endocrinological disorders”) to top (“5 endocrinological disorders”)
Source publication
Purpose
Childhood cancer survivors (CCS) are at risk for increased morbidity and reduced quality of life associated with treatment-related late effects. In Germany, however, only a few of the more than 40,000 CCS registered in the German Childhood Cancer Registry (GCCR) currently benefit from adequate clinical long-term follow-up (LTFU) structures....
Citations
... The interdisciplinary project teams in Lübeck, Bonn, and Hamburg meticulously developed both medical and psychosocial interventions before the study commenced. For both intervention and control groups, study nurses received comprehensive online training, along with standard operating procedures (SOP´s) for patient documentation using the CentraXX database [19]. ...
... This approach focuses on the early detection and treatment of potential therapy-associated long-term and/ or late effects, considering both somatic and psychosocial factors. By employing evidence-based guideline recommendations [19] and utilizing risk stratification and informative materials for a successful transition, the study aims to provide high-quality healthcare to affected individuals, addressing the gap in their care and avoiding unnecessary treatment. Regular check-ups are expected to reduce long-term morbidity by enabling early treatment of potential late effects. ...
Background
In Germany, around 2.250 children and adolescents are diagnosed with cancer each year. Despite generally positive long-term survival rates, many patients must cope with late effects of the disease and its treatment. This highlights the need for a well-structured, long-term approach addressing both physical and mental health issues. Currently, the German healthcare system lacks such comprehensive structures. Our study aims to evaluate the effectiveness of a structured, multidisciplinary long-term approach compared to conventional “treatment as usual” (TAU).
Methods
A prospective, multicenter study with ten pediatric university clinics in Germany will be conducted. The cluster-randomization takes place at the clinic level. Children and adolescents who completed their cancer treatment at least five years ago and their parents will be eligible to participate. While the control group (CG) receives TAU, the intervention group (IG) participates in a structured program. This program includes risk-based medical treatment and psychosocial interventions tailored to each patient’s individual needs within a two-month timeframe. The primary outcome is the improvement of self-efficacy. Secondary outcomes are satisfaction with health care, improvement of health-related quality of life (HRQoL), reduction of mental health problems, and improvement of transition readiness.
Discussion
This approach has the potential to optimize the health care for individuals who survived cancer during childhood or adolescence. It addresses the challenges of overuse, underuse, and misuse of health care resources. By considering both medical and psychosocial factors and promoting increased self-efficacy, independent from parental involvement, it may facilitate a smoother transition to adult medicine and enhance adherence to lifelong aftercare. If proven successful, this approach will contribute to the integration of multidisciplinary strategies into standard healthcare practice.
Trial registration
German Clinical Trials Register DRKS00029269. Registered on December 23, 2022.
... This was a result of an unselected inclusion of every CCS receiving regular LTFU care in our specialized clinic, which renders comparison of different risk groups more difficult. A higher proportion of women in LTFU has also been observed in previous studies performed in our cohort, as well as in different LTFU cohorts, and was discussed as a consequence of an increased engagement in preventive health behavior in women compared with men [41,42]. ...
Background
Many childhood cancer survivors (CCS) develop treatment-related late effects, including an increased risk of obesity and metabolic syndrome. A healthy lifestyle can reduce the risk of associated comorbidities. Therefore, at-risk CCS could benefit from lifestyle counseling during regular long-term follow-up (LTFU).
Objective
We implemented a new form of care to decrease the long-term morbidity among CCS and to gain new insights into the lifestyle of those patients.
Methods
Over a 1-year study period, lifestyle counseling was integrated into LTFU care. Metabolic disorders, including hypercholesterolemia, diabetes mellitus, overweight or underweight, and low activity levels, were assessed as screening parameters for various risk groups. The perspectives of CCS, physicians, and sports scientists were compared to identify those with the highest needs. Each lifestyle counseling included general recommendations for physical activity, as well as an assessment of individual preferences for and barriers to the implementation of a healthy lifestyle. A follow-up appointment after 1 month was performed.
Results
Of the 155 CCS aged 18 to 63 years (n=100, 65% female and n=55, 35% male), 112 (72%) had an indication for lifestyle counseling, identified by physicians, sports scientists, or the CCS themselves. Metabolic disorders affected 45% (n=70) of these CCS, and 46% (n=72) did not meet recommended activity levels. A total of 120 (77%) CCS received lifestyle counseling, including 8 initially uninterested individuals who became open to recommendations. Those with intensive cancer treatment history showed the greatest need. A total of 65 (54%) CCS were advised to change their lifestyle in both areas (diet and exercise) while 51 (43%) CCS received recommendations for only exercise (n=43 CCS, 36%) or diet (n=8 CCS, 7%). A total of 4 (3%) CCS, although interested in counseling, received no advice, as they already met the recommendations. Follow-up revealed high adherence to recommendations and successful integration into daily lives. In total, 97% (n=150) of survivors indicated that the provision of lifestyle counseling during LTFU would be generally beneficial.
Conclusions
Incorporating specialized health care professionals such as sports scientists into survivorship care enhances the multidisciplinary approach of LTFU care. Promoting a healthy lifestyle by offering guideline-based lifestyle counseling is broadly accepted among CCS and may reduce long-term morbidity.
