Through questionnaires and interviews, we will identify and address the challenges faced by patients and families regarding testing, aiming to enhance informed consent processes and provider-family communication. The study is funded by the Norwegian Cancer Society (273371) and involves collaboration with several Nordic and international partners, creating one of the largest research networks in this field. Ultimately, it is hoped the findings will inform clinical guidelines, improve patient outcomes, and support ethical genetic testing practices.
Psychosocial Aspects
Work Package 1 of the PROTECT-CARE study addresses the psychosocial, care, and communication challenges associated with Childhood Cancer Predisposition Syndromes (CPS) testing in clinical practice. It involves two sub-studies: the first explores parents' and patients' perceptions, experiences, and information needs regarding CPS testing, assessing its impact over time and identifying factors influencing decisional satisfaction and mental distress.
The second sub-study aims to adapt a Finnish communication tool to help healthcare providers improve information provision related to CPS testing through co-creation workshops with key stakeholders. The results will aid in developing recommendations for more effective, patient-centered implementation of CPS testing in clinical settings, with anticipated deliverables including multiple scientific articles and an adapted communication tool.
Ethical-legal Aspects
Work Package 2 of the PROTECT-CARE study examines the ethical and legal challenges associated with Childhood Cancer Predisposition Syndromes (CPS) testing in clinical practice. It consists of multiple sub-studies: the first investigates how parents and adolescent patients perceive the benefits, challenges, and family communication aspects related to genetic testing soon after the diagnosis of childhood cancer.
The second sub-study follows how these perceptions may change over time (longitudinally), and to what degree they are influenced by factors like socioeconomic status and severity of cancer.
The third sub-study explores autonomy and informed consent, assessing how well parents' and patients' needs are addressed by existing legal regulations. Finally, the fourth sub-study examines moral motivation, responsibility, regret, and satisfaction about genetic testing, aiming to align ethical and legal implications with empirical findings and potentially inspire improvements in legal regulations and guidelines. Together, these efforts aim to clarify ethical and legal considerations and inform healthcare practices, ensuring patient autonomy and consent are safeguarded effectively.
Communication Tool Development
One objective of the PROTECT-CARE project is to develop an easy-to-use communication tool to help healthcare providers explain Childhood Cancer Predisposition Syndromes (CPS) testing to patients and their families. Originally developed by the Finnish PeCCaPS study team, the tool consists of a checklist designed to facilitate structured information sharing of the test and aspects from genetic counseling by pediatric oncologists. The checklist includes key topics to discuss with parents and patients, such as the information they can expect from the test, potential implications for relatives, and other considerations like insurance issues.
Within the PROTECT-CARE study, the tool is being adapted for use in Norwegian clinical practice through co-creation workshops with pediatric oncologists, genetic counselors, and patients and parents. These workshops allow stakeholders to provide input on the tool’s acceptability, usability, and necessary adaptations to fit the local clinical context. The goal is to tailor the communication tool to address local needs effectively, ultimately facilitating better communication and understanding during CPS testing and implementation in pediatric oncology settings. Once adapted, the tool will undergo feasibility testing to assess its practicality and impact in clinical practice.
Patient Involvement
Patient involvement in the PROTECT-CARE study is essential for the success of the project. It will ensure that the research aligns with the needs and perspectives of those directly affected. The study actively engages patients and their families through questionnaires and interviews to capture their experiences, perceptions, and information needs regarding Childhood Cancer Predisposition Syndromes (CPS) testing. Additionally, patients and parents are included as user representatives to contribute input throughout the project, including co-creation workshops for adapting the communication tool. This involvement helps ensure that the tools and recommendations developed are relevant, acceptable, and tailored to the needs of patients and families. By integrating the real-life experiences and insights from patients, the study aims to achieve patient-centered outcomes and recommendations that can translate into improved clinical practice and support for families during challenging times.
