Cancer is a horrible diagnosis for anybody – but it can seem especially tough for teenagers and young adults. How do you ask them about it? What can you learn from their answers, to treat others?
This article describes an effort by a group of Danish university and hospital researchers to develop a methodologically sound questionnaire to probe these problems – and is offered by them now in English to help researchers elsewhere in the world. The study highlights the importance of active patient participation in the questionnaire development process.
From the report:
“Cancer is the leading cause of nonaccidental death among adolescents and young adults (AYAs). Every year, about 500 Danish citizens aged 15–29 are diagnosed with cancer. The incidence is three times that of childhood cancer (0–15 years), yet it only accounts for less than 2% of all cancers. Internationally, improvements in survival rates among AYAs with cancer are lower than the improvements observed for children and adults. Several factors may explain this inferior survival gain such as delay in diagnostic period, lower participation in clinical trials, distinct tumor biology, distinct pathophysiological mechanisms, insufficient treatment adherence, and lack of professional expertise.
“Adolescence and young adulthood is a life-period of substantial physical, emotional, cognitive, social, and sexual development. AYAs may therefore have particular attitudes, wishes, and needs for care. Thus, being diagnosed with cancer during this transition period will often have substantial impact on their lives. Due to the lack of improvements in survival and access to supportive care, cancer among AYAs is increasingly recognized as a sub-speciality distinguished from both pediatric and adult oncology. Several countries such as England and Australia have set up policies to develop organizational frameworks for healthcare services designed for this particular patient group. However, there are significant gaps in knowledge about AYA cancer patients' needs and experiences. Lack of survey instruments targeting AYAs with cancer in particular contribute to the scarce knowledge. In Denmark, no national framework or clinical guidelines exist that focus on AYAs, despite increasing clinical attention. To fill these gaps, we initiated the development of a questionnaire targeting AYAs with cancer aiming to evaluate treatment and survivorship from the perspective of the patients and to reflect their needs and experiences throughout the cancer trajectory. The questionnaire was developed as part of a large national population-based cross-sectional study among AYAs with cancer in Denmark. This article outlines the development of a patient survey questionnaire targeting AYAs with cancer.”
“Being young and getting cancer: Development of a questionnaire reflecting the needs and experiences of adolescents and young adults with cancer.” Published 21 September 2016 in the Journal of Adolescent and Young Adult Oncology.
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