There is considerable scope to develop digital resources by means of which teenagers and young adults living with cancer can receive information and connect with both professionals and fellow patients. Such tools could help them gain different perspectives on treatment and survivorship, says Esha Abrol of the Camden and Islington NHS Foundation Trust and University College London in the UK, lead author of a study in Springer's Journal of Cancer Survivorship. The study presents the findings of a survey about the digital media use and needs of 102 cancer patients of the University College London Hospitals aged between 13 and 24 years old.
It established that such young people have active digital lives and that 41.6 percent rate it as "essential" to their lives. They already use a variety of healthcare-related digital resources to access information about their disease, including independent sources and ones recommended to them by the professional team treating them. Half (51 percent) of respondents kept in contact through digital means with other patients they had met during treatment, while 12 percent contacted others or started new digital relationships with people they had never met in person.
Compared to the teenagers (13-18 year-olds) surveyed, young adults aged between 19 and 24 were more interested in online counselling options and preferred receiving clinical information online. This may reflect young adults' greater independence, resilience, breadth of experience in the digital world, and confidence in discussing clinical matters online.
Despite these findings about the use of digital resources, the majority of young people were still most likely to get information about their treatment from professionals in a face-to-face environment, such as when visiting their doctor. "This is a reassuring and appropriate finding as this is the conventional means by which teenage and young adult oncology care is delivered by the multidisciplinary team, whether the young people choose to engage or not," says Abrol, who emphasizes the importance of a good doctor-patient relationship in an oncology clinic.
The survey participants expressed a need for virtual online groups (54.3 percent), online counselling or psychological support (43.5 percent) and to be able to receive (66.3 percent) and share (48.9 percent) clinical information online. These results suggest that teenage and young adult patients would prefer the option to choose between face-to-face interactions and other freely available alternatives.
Abrol believes the preliminary results can help inform the development of local, national and global services to teenagers and young adults with cancer to address their unmet needs. "These digital support resources have the potential to improve patient experience and engagement for an important subsection of teenagers and young people treated for cancer," says Abrol.
Each year approximately 2300 teenagers and young adults between the ages of 15 and 24 years old are diagnosed with cancer in the UK. Receiving the news that they have cancer is lifechanging at a critical stage in their social and emotional development, and is an experience unlikely to be shared by many of their peers. More than three in every four young people go on to live for at least another five years.
Reference: Abrol, E. et al (2017). Exploring the digital technology preferences of teenagers and young adults (TYA) with cancer and survivors: a cross-sectional service evaluation questionnaire, Journal of Cancer Survivorship DOI: 10.1007/s11764-017-0618-z
Journal of Cancer Survivorship