Long-term cancer survivors may suffer from significant bio-psycho-social burden even years after treatment. Yet, a structured approach to detect and address bio-psycho-social burden of long-term cancer survivors in primary care is missing in Germany, although family physicians are the primary medical contact for most patients. In this paper, we describe the DELPHIN study aiming to develop and test a structured care model for long-term cancer survivors. The DELPHIN study and intervention will facilitate networking of regional medical and non-medical services. This protocol describes the intervention as well as the pilot study.

The DELPHIN study comprises a developmental and a feasibility phase. In the developmental phase, we will assess (1) the current care needs of long-term cancer survivors (n=1000) using a cross-sectional questionnaire survey; (2) in an additional cross-sectional questionnaire survey, we will address medical and non-medical care providers to assess current care practice for this patient group (n≥250); (3) a qualitative interview study with both long-term cancer survivors (n=12) and family physicians (n=10) will assess patients’ needs and barriers for effective care. Results will then be triangulated to inform development of the DELPHIN intervention. The intervention shall include the following elements: the DELPHIN mobile app for patients with a digital screening tool, a digital treatment plan, a survivorship passport and information on regional medical and non-medical providers. Additionally, a DELPHIN website and a DELPHIN eLearning tool for family physicians will be developed. The subsequent feasibility study will follow 100 long-term cancer survivors using the DELPHIN app for 4 months, with two assessments (t⁰=baseline; t¹=4 months follow-up) regarding the usability of the app and their health-related quality of life. The eLearning tool will be tested by 50 family physicians using three measurement points to evaluate learning success (t^a=before; t^b=directly after eLearning; t^c=after 4 weeks).

The DELPHIN study seeks to address cancer survivors’ unmet bio-psycho-social needs through implementing a digital mobile application. Positive results in the feasibility study will provide the basis for a future effectiveness study and integration into routine care.

The study was reviewed by the Ethics Committee of the University of Bonn, Germany (No: 2024-409 BO) which did not object to the study.

DRKS00035726.

To assess the feasibility and preliminary effectiveness of ‘Partners for Patient Safety’ (P4PS) programme for strengthening competencies and patient engagement at the organisational level.

Prospective study with three measurement points (baseline, interim and follow-up) and an explanatory sequential mixed methods approach for formative and process evaluation.

Oncology-focused patient and family advisory councils (PFACs) integrated into healthcare organisations and networks in five German federal states.

Initially, 36 stakeholders of six PFACs were recruited. At follow-up, 27 participated in all intervention modules and completed all surveys. From those, 14 participated in follow-up interviews.

The P4PS programme consists of two sequentially implemented modules: (1) an e-learning module and (2) a 4-hour on-site workshop. The programme focuses on the following topics: patient safety (PS), communication strategies and PFAC engagement in respective care organisations.

Primary outcome measures were feasibility domains, assessed via standardised (acceptability, appropriateness, feasibility) and self-developed measures (relevance, acceptability and social validity, complexity and practicability, demand and implementation, and adaptability). Secondary outcome measure was preliminary effectiveness, measured via changes in self-assessed competencies in PS, communication and engagement.

Feasibility ratings were high across standardised and self-developed measures (median range: 4–5 of 5). Qualitative data showed P4PS programme’s practical relevance, need for organisational support and its adaptability across PFAC contexts. Effectiveness analyses showed significant improvements in PS competencies (adjusted pV) and selected domains of PFAC engagement (adjusted pd=–0.77 to –1.37). Participants expressed strong expectations for future improvements in competencies regarding PS, communication and PFAC engagement.

This P4PS programme showed high feasibility and effectiveness, it increased key competencies, clarified roles and promoted active PFAC engagement in PS. Future work needs to address organisational support and sustainable implementation with application to context as well as long-term evaluation across different care settings.

DRKS00034733; German Clinical Trials Register.