Feasibility of Integrating a Standardized Psychosocial Follow-Up After Childhood Cancer-An Interim Analysis of the LE-Na Study.

BACKGROUND

Many childhood and adolescent cancer survivors suffer from late effects that impair quality of life and life expectancy. However, only an estimated 5% of > 47,000 survivors in Germany receive adequate long-term follow-up (LTFU) care. The LE-Na (Evaluation and implementation of multidisciplinary, standardized, guideline-based long-term follow-up care for adult survivors of childhood cancer in Germany) study aims to address this care gap. Our interim analysis compares three recruitment and information pathways and provides information on the feasibility and acceptance of a guideline-based psychosocial screening.

METHODS

Over the total study period of 5 years, 5000 survivors without previous LTFU care are systematically invited to specialized LTFU clinics in Germany: (1) through the German Childhood Cancer Registry (GCCR), (2) during transition from pediatric to adult care, and (3) via media presence. Longitudinal sociodemographic, medical, and psychosocial data are documented in an online database. Follow-up intervals are based on therapy-associated risk for late effects: annually (high risk), biannually (medium risk), or every 5 years (low risk).

RESULTS

By the time of our interim analysis, 300 survivors with completed data documentation had been enrolled: 121 (40.3%) were recruited via GCCR invitations, 155 (51.7%) through a structured transition, and 24 (8%) via media presence. Nearly half (131/300; 43.7%) were at high risk for late effects. Almost all (299/300, 99.7%) completed psychosocial screening. A Distress-Thermometer score of ≥ 5 was found in half of the participants (146/299; 48.8%), indicating relevant psychosocial distress.

CONCLUSION

Through the different recruitment methods, survivors with a high risk for late effects were particularly encouraged to accept the LTFU care offer. Integrating a psychosocial screening is feasible and confirms survivors' distress.

TRIAL REGISTRATION: DRKS identifier: DRKS00033303.