Project Introduction
About the Study
Every year in Finland, around 150 children under the age of 16 and around 80 young people aged 15-19 are diagnosed with cancer. We aim to enroll 30-50 families each year that have been diagnosed with cancer predisposition syndrome. The present study will involve all university hospitals in Finland and recruitment will take place between 2023 and 2025.
This prospective clinical study aims to investigate how parents experience and perceive genetic testing for cancer susceptibility that is performed on their children. The study focuses on information needs, longitudinal psychosocial effects, sense-making and integration, standardisation of testing, and the advancement of genetic counselling. This is a nationwide translational project, involving pediatric haemato-oncologists, geneticists, psychologists, and bioethicists.
To contact us about the project, please email us at peccaps@utu.fi
For Parents
Below is the information sheet given to parents who are considering taking part in the study, and a lighter version for explaining the study to children:
Our Finnish site includes useful links for those taking part in the research, considering it, or otherwise interested in it. Material includes articles on hereditary cancer and links to peer support groups.
For researchers
Infographics
Enlarge the graphs by clicking them.
Research instruments of the survey form
The last four are only included in the pre-interview questionnaire
| Family Assessment Device (General functioning) | Structural and organizational properties of the family |
| The Symptom Checklist | Symptoms of anxiety |
| Beck Depression Inventory | Depression |
| Warwick-Edinburgh Mental Well-being Scale | Mental well-being |
| Satisfaction with Life Scale | Life-satisfaction |
| EuroQol Group; EQ-5D-5L | Health-related quality of life, self-assessed |
| EuroQol Group; EQ-5D-Y | Health-related quality of life, adult’s assessment of the child |
| Precision in Pediatric Sequencing Knowledge Questionnaire | Knowledge about heredity and genetic susceptibility to disease |
| Multidimensional Impact of Cancer Risk Assessment | Different impacts of disclosing genetic test results |
| Reconstruction of LIFE-events questionnaire (Modified for genetic counseling) | Contingency, interpretation, meaning-making, and narrative integration |
| Existential Quest scale | Flexibility of worldview |
| Intolerance of Uncertainty scale | Tendency to find uncertainty upsetting and distressing |
| Sense of Coherence scale | View of life and coherence as a psychosocial resource |
Website and DALL-E 2 illustrations created by Joel Janhonen.
News
