Assessing Psychosocial and Supportive Care Needs of Families with Children and Adolescents Diagnosed with Cancer Predisposition Syndromes: study protocol of the KiTDS-Care Study (Preprint)

BACKGROUND Cancer predisposition syndromes (CPS) are identified in approximately 10% of pediatric cancer patients, with an increasing number of affected families each year. Despite the known psychosocial challenges faced by these families, including uncertainty in communication, genetic risk implications, and lifelong surveillance, there is limited data on the specific support needs of families in Germany. OBJECTIVE The KiTDS-Care study aims to: (1) Conduct a comprehensive analysis of the current care landscape, psychosocial stressors, psychosocial burden and support needs of families with children/ adolescents diagnosed with CPS in Germany; and (2) Develop recommendations for improving psychosocial care based on these findings. METHODS A mixed-methods approach will be employed. The first phase involves a systematic review to systematically gather existing literature on the psychosocial situation and support needs of CPS families. In the second phase, a cross-sectional survey of families (parents and children/ adolescents aged ≥7 years) will assess e.g. psychosocial well-being, quality of life, support needs, and care utilization. Additionally, qualitative interviews will be conducted with families and healthcare providers to explore deeper psychosocial experiences, service and care gaps. Data will be analyzed using descriptive and inferential statistics, while qualitative data will be processed through content analysis. Recommendations for psychosocial care will be derived and validated through feedback from both families and healthcare professionals. RESULTS The study results will provide a comprehensive overview of the psychosocial situation and supportive care needs of families affected by CPS of a child/ adolescent. CONCLUSIONS The results will help to improve family-centered care and psychosocial support systems. It will help identify gaps in current care practices and inform more effective approaches. CLINICALTRIAL German Clinical Trials Register, ID: DRKS00035594, Registered on 9th December 2024