Exploring the digital technology preferences of teenagers and young adults (TYA) with cancer and survivors: a cross-sectional service evaluation questionnaire

Abstract

PurposeDigital technology has the potential to support teenagers and young adults (TYAs) with cancer from the onset of their disease into survivorship. We aimed to establish (1) the current pattern of use of TYA digital technologies within our service-user population, and (2) their preferences regarding digital information and support within the service.MethodsA cross-sectional survey was administered as a paper and online self-completed questionnaire to TYAs aged 13–24 accessing outpatient, inpatient, and day care cancer services at a regional specialist centre over a 4-week period.ResultsOne hundred two TYAs completed the survey (55.7% male; 39.8% female; 83.3% paper; 16.7% online; mean age 18.5 years [SD = 3.51]). Of the TYAs, 41.6% rated the importance of digital communication as “essential” to their lives. Half (51.0%) kept in contact with other patients they had met during treatment, and 12.0% contacted patients they had not met in person. Respondents wanted to receive clinical information online (66.3%) and use online chat rooms (54.3%). Future online services desired included virtual online groups (54.3%), online counselling or psychological support (43.5%), and receiving (66.3%) and sharing (48.9%) clinical information online.ConclusionsYoung people with cancer are digital natives. A significant subgroup expressed a desire for digital resources from oncology services, though existing resources are also highly valued. Digital resources have potential to improve patient experience and engagement.Implications for cancer survivorsThere is considerable scope to develop digital resources with which TYAs can receive information and connect with both professionals and fellow patients, following diagnosis, through treatment and survivorship.

Introduction to special section on digital technology and cancer survivorship

“…In their in depth qualitative exploration of how adult cancer survivors discuss navigating the internet, Harkins et al [1] describe a number of perceived positive benefits including the potential facilitation of reframing survivors' post diagnosis identity. Abrol and colleagues [2] present findings from a survey of technology preferences among young cancer survivors (aged 13-24 years). As the authors acknowledge, this generation is heralded as Bdigital natives^: therefore, the perceived importance of online communication was high in this group.…”

Relational processes and psychological adjustment among young adults with cancer: The role of technology‐related communication

“…More importantly, young adults with cancer are increasingly turning to interactive technology platforms (eg, texting and social media applications) as a form of soliciting and eliciting cancer support, as well as support in general . These types of platforms allow young adults to interact with their peers and support network as well as with other cancer patients about their diagnosis and its impact on their lives without needing to be in the same physical space . Indeed, studies have started to analyze narrative content and structure of online young adult cancer social support groups .…”

Engagement with INSPIRE, an Online Program for Hematopoietic Cell Transplantation Survivors

“…Although studies show that engagement declines rapidly [21,22], strategies such as sending “push” e-mail links, regularly updating content, and providing personal feedback and contact can enhance engagement [23–29]. Conversely, some studies have demonstrated that characteristics of individuals most likely to enroll in or engage with an online program include white race, female sex, younger age, higher income and education, and healthy, with less depression and fewer comorbidities [1,30–33]. …”