Currently submitted to: JMIR Research Protocols
Date Submitted: Jan 19, 2026
Open Peer Review Period: Jan 19, 2026 - Mar 16, 2026
(closed for review but you can still tweet)
NOTE: This is an unreviewed Preprint
Warning: This is a unreviewed preprint (What is a preprint?). Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn (a note "no longer under consideration" will appear above).
Peer review me: Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period (in this case, a "Peer Review Me" button to sign up as reviewer is displayed above). All preprints currently open for review are listed here. Outside of the formal open peer-review period we encourage you to tweet about the preprint.
Citation: Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author).
Final version: If our system detects a final peer-reviewed "version of record" (VoR) published in any journal, a link to that VoR will appear below. Readers are then encourage to cite the VoR instead of this preprint.
Settings: If you are the author, you can login and change the preprint display settings, but the preprint URL/DOI is supposed to be stable and citable, so it should not be removed once posted.
Submit: To post your own preprint, simply submit to any JMIR journal, and choose the appropriate settings to expose your submitted version as preprint.
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Assessing Psychosocial and Supportive Care Needs of Families with Children and Adolescents Diagnosed with Cancer Predisposition Syndromes: study protocol of the KiTDS-Care Study
ABSTRACT
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. Discussion 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. 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. Trial registration German Clinical Trials Register, ID: DRKS00035594, Registered on 9th December 2024
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.