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NIHPA Author Manuscripts logoLink to NIHPA Author Manuscripts
. Author manuscript; available in PMC: 2019 Dec 1.
Published in final edited form as: JCO Clin Cancer Inform. 2018 Dec;2:1–15. doi: 10.1200/CCI.17.00138

Digital Health Interventions for Adolescent and Young Adult Cancer Survivors

Katie A Devine 1, Adrienne S Viola 2, Elliot J Coups 3, Yelena P Wu 4
PMCID: PMC6547376  NIHMSID: NIHMS1032303  PMID: 30652583

Abstract

This narrative review describes the evidence regarding digital health interventions targeting adolescent and young adult (AYA) cancer survivors. We reviewed the published literature for studies involving Internet, mHealth, social media, telehealth, and other digital interventions for AYA survivors. We highlight selected studies to illustrate the state of the research in this unique patient population. Interventions have used various digital modalities to improve health behaviors (eg, physical activity, nutrition, tobacco cessation), enhance emotional well-being, track and intervene on cancer-related symptoms, and improve survivorship care delivery. The majority of studies have demonstrated feasibility and acceptability of digital health interventions for AYA survivors, but few efficacy studies have been conducted. Digital health interventions are promising to address unmet psychosocial and health information needs of AYA survivors. Researchers should use rigorous development and evaluation methods to demonstrate the efficacy of these approaches to improve health outcomes for AYA survivors.

INTRODUCTION

Digital health can be broadly defined as the use of technology in the promotion, prevention, treatment, and maintenance of health and health care.1,2 Digital health includes electronic health (eHealth), mobile health (mHealth), health information technology, wearable devices, telehealth, and telemedicine. Such technology can be used in multiple ways, including for information delivery, two-way communication, or longitudinal assessment.3 Digital health is particularly relevant for adolescents and young adults (AYAs), who are pervasive users of technology. In the general population, 93% of adolescents ages 13 to 17 years and 99% of young adults ages 18 to 29 years use the Internet.4,5 Most connect to the Internet with mobile devices; 88% of teenagers and 98% of young adults are smartphone or cell phone users. In addition, the vast majority of teens (89%) and young adults (90%) report using at least one social media site (eg, Facebook, Instagram, Snapchat, Twitter).4

AYA cancer survivors are a growing group of survivors ages 15 to 39 years who were diagnosed with cancer during childhood, adolescence, or young adulthood.6 There are over 379,000 childhood cancer survivors in the United States, and approximately one in every 530 young adults ages 20 to 39 years is a cancer survivor.7 The AYA years are a unique developmental period characterized by autonomy and identity development, pursuit of education and career goals, establishment of financial independence, independent living, and formation of intimate relationships.8 It is also a period of increasing mental health problems and risk-taking behaviors.9 AYA cancer survivors face multiple challenges including disruptions to education, employment, and social milestones, and coping with ongoing late effects from their treatment.10,11 A majority of survivors will develop at least one chronic health condition12 that will require life-long follow-up care. However, AYAs are often lost to follow-up, do not have adequate knowledge of their cancer treatment history and late-effects risks,13 and engage in health-compromising behaviors at rates similar to their peers.14,15 Thus, interventions to improve AYA survivors’ health behaviors and address their unmet psychosocial needs are greatly needed.16,17

Digital health interventions have been increasingly examined to overcome barriers to AYA survivors’ participation in health promotion interventions, including their geographic mobility, relatively small number of AYAs at single institutions, and lack of time and competing priorities.18 Such technology aligns well with AYA preferences for program delivery, use of technology in their daily lives, and use of technology for seeking health information and support.1922 For example, up to 92% of AYA survivors use the Internet to seek health information, but have concerns about trustworthiness of the information and lack of tailoring to their needs.23 AYA survivors also use mobile devices and online support forums to exchange emotional and informational support and to connect with other survivors.19,24

In this review, we extend prior reviews of psychological and health promotion interventions for AYA cancer survivors16,17,2527 to examine the evidence for digital health interventions targeting AYA survivors. We searched PubMed and Google Scholar using combinations of the following search terms: adolescent, young adult, cancer, survivor, digital, eHealth, mHealth, telehealth, and social media. We also reviewed the reference lists of published studies for additional relevant articles. We highlight primary results from select studies that use the Internet, mHealth, social media, telehealth, and other emerging digital modalities to illustrate the state of the research targeting this unique patient population (Table 1). As can be seen by the studies described, this is an emerging area of research primarily composed of feasibility studies with methodologic weaknesses, such as a lack of control groups and small sample sizes.

Table 1.

Highlighted Digital Health Intervention Studies for AYA Survivors

Intervention and First Author Primary Health Outcome(s) Design Sample Results
Internet-based interventions
  Gilliam28 Physical activity Pre-post 20 adolescents ages 6–18 years 12 completers demonstrated significant improvements in physical functioning
Adherence to home-based daily exercise log was low
  Le29 Physical activity Pre-post 19 AYAs ages 15–35 years Low enrollment (13.4%) but good retention (79%)
Nonsignificant increases in moderate-to-vigorous activity and VO2 max
  Rabin30 Physical activity RCT 18 young adults ages 18–39 years 86% would recommend intervention and 71% satisfied
No significant differences between groups but estimated effect size for changes in physical activity were medium
  Berg31 Physical activity, alcohol, and smoking cessation Pre-post 24 young adults ages 18–34 years 85.7% were satisfied with the program but unsatisfied with low level of tailoring to individual needs
Reduction in binge drinking; no other significant changes in behaviors
  Emmons32 Smoking cessation RCT 374 adult survivors ages 18–55 years Similar rates of cessation in Web and tailored print arms
High rates of satisfaction with both arms
  Hollen33 Substance use RCT 243 adolescents ages 14–20 years 90% rated program positively
Intermediate effects for change in risk motivation among low-risk adolescents that was not sustained at 12 months
No differences in quality decision making between groups
  Huang34 Weight management RCT 38 adolescents ages 8–18 years Fit4Life group showed improved negative mood compared with control
No significant group differences on weight, but treatment effects by age
  Kunin-Baston35 Cancer knowledge RCT 52 AYAs ages 15–28 years Web site use was low, but satisfaction among users was high
No differences between intervention and standard care
  Ewing36 Cancer information and social support Pre-post 21 families; 12 adolescents ages 12–17 years Web site usage was low (9 of 21 families logged in)
Discussion groups were most frequently accessed
  Stinson37 Self-management Qualitative 22 adolescents ages 12–18 years Adolescents found information credible and relevant
Reported Web site would be useful when first diagnosed
  Poplack38 Survivorship care Cross sectional 84 clinicians 82% reported adhering more closely to guidelines when using Passport for Care, and 79% felt it enabled sharing information with survivors
90% reported satisfaction with Passport for Care
  Blaauwbroek39 Survivorship care Cross sectional 80 adults/79 clinicians ages 19–56 years Survivors found Web-based & written survivorship care plans user friendly
Family doctors found survivorship care plan user friendly, and 83% performed screening according to guidelines
mHealth applications
  Jibb40 Pain management Pre-post 40 adolescents ages 12–18 years Fidelity affected by technologic & logistic challenges
Intervention was acceptable to participants
Significant improvements in pain, pain interference, health-related QOL
  Wu41 Oral medication adherence Pre-post 23 AYAs ages 15–29 years 91% reported the app set-up instructions were clear
91% used the app at least once, and 65% reported the app was useful
  Stinson42 Pain assessment Pre-post 47 adolescents ages 9–18 years Participants completed 81% of assessments
84% of participants “very much liked” or “liked” the app
  Tomlinson43 Symptom assessment Pre-post 40 adolescents ages 8–18 years 100% of participants noted the app was very easy to use
95% reported it was easy or very easy to understand
  Baggott44 Symptom assessment Pre-post 10 adolescents ages 13–21 years Overall completion rate was 91%−97%
100% of participants reported the app was easy or very easy to use
  Macpherson45 Symptom assessment Pre-post 72 adolescents ages 13–29 years 100% of participants completed the assessment
App was acceptable (89% found the questions to be clear)
83% supported the app version over a paper version
  Rodgers46 Symptom management Pre-post 16 adolescents ages 11–18 years Acceptability ratings were high (average scores of 28.5–28.9 of 30)
Usability ratings were moderate (average scores of 10.1–11.2 of 15)
All were able to correctly use the program after a brief orientation
  Kock47 Long-term follow-up Pre-post 13 adolescents ages ≥ 15 years On average, the evaluation of the app (eg, suitability for its purpose) yielded a score of 130 of 147
  Vollmer Dahlke48 Survivorship care delivery Qualitative 4 AYAs, 18 health care professionals & cancer advocates Survivors reported utility of cancer survivorship care plans and educational content in workshops
Social media
  Valle49 Physical activity RCT 86 AYAs ages 21–39 years Moderate-to-vigorous–intensity activity increased in both the Facebook physical activity group and the Facebook-based self-help comparison group
Changes in light physical activity and weight loss were greater in the Facebook group compared with the self-help comparison group
  Valle50 Physical activity RCT 86 AYAs ages 21–39 years Participants in the self-help group were more likely than participants in the Facebook physical activity group to indicate that group discussions caused them to become physically active and that group members were supportive
Posts from participants (v moderators) elicited more comments and likes
  Mendoza51 Physical activity Feasibility 60 adolescents ages 14–18years Participants wore the Fitbit on the majority of days
No significant group differences between the intervention and usual-care groups in moderate-to-vigorous physical activity or sedentary time
  McLaughlin52 Social capital, social support, depression, self-efficacy, QOL Pre-post 14 AYAs ages 18–29 years Participation in the social network was higher among individuals with weak bonding social capital, lower social support, and lower family interactions
  Gibson53 Psychological and physical cancer effects Qualitative 18 AYAs ages 11–25 years Four themes identified: treatment & adverse effects, rehabilitation & moving on with life, relapse & ongoing treatment, and coming to terms with dying
Telehealth
  Campo54 Psychological symptom reduction Pre-post 25 AYAs ages 18–29 years 85% of participants completed 75% of sessions
All psychosocial outcomes except resilience showed significant change
  Sansom-Daly55 Psychological symptom reduction Case series 11 AYAs ages 15–24 years Videoconferencing offers alternative solution for adolescents who may otherwise be unable to access mental health resources
  Seitz56 Psychological symptom reduction Pre-post 20 AYAs ages 20–36 years Participants demonstrated significant decreases in PTSS, anxiety, fear of relapse/progression, and depression
  Cantrell57 Promote hope Pre-post 6 females Web-based delivery was effective
Online sessions promoted intimate meaningful conversations
Emerging digital health interventions
  Sabel58 Physical activity RCT 13 adolescents ages 7–17 years Body coordination improved by 15%
No change in daily time spent doing moderate/vigorous physical activity
  Kato59 Medication adherence RCT 375 AYAs ages 13–29 years Participants who played the cancer-targeted video game demonstrated better objective medication adherence, self-efficacy, and knowledge
No group differences for QOL, stress, control, or self-reported adherence
  Cox60 Working memory RCT 68 adolescents ages 8–16 years 88% of the treatment sample completed the intervention
The training was beneficial (70%) and time commitment acceptable (63%)
  Hardy61 Working memory Pre-post 9 adolescents ages 10–17 years Participants’ working memory scores increased from baseline to follow-up
  Gershon62 Psychological Symptom reduction Pre-post 59 adolescents ages 7–19 years Participants had lower pulse rate and less report of pain using the distraction technique
  Laing63 Psychological symptom reduction Qualitative 16 AYAs or family members ages 5–56 years Digital stories offer therapeutic benefits in communicating about experience
The further one is from diagnosis, the more reflective
  Li64 Psychological symptom reduction Quasi-experimental 122 adolescents ages 8–16 Intervention group had significantly fewer depressive symptoms
No change in anxiety
  Pereira65 Psychological symptom reduction Case study 1 adolescent age 14 years Video narratives are a way for patients to communicate needs to their medical team
  Schneider66 Psychological symptom reduction, distraction Crossover 20 women ages 18–55 years Significant decreases in distress and fatigue when using virtual reality
  Casillas67 Survivorship care delivery Pre-post 37 AYAs ages 15–39 years Text reminders were acceptable, and tailored suggestions were relevant
Participants suggested forming AYA survivor networks

Abbreviations: AYA, adolescent and young adult; pre-post, pretest–post-test design; PTSS, post-traumatic stress symptoms; QOL, quality of life; RCT, randomized controlled trial; VO2 max, maximal oxygen uptake (measure of cardiorespiratory fitness).

INTERNET INTERVENTIONS

Early applications of digital health interventions included static Web sites or CD-ROMs.33,36 More recent applications incorporate sophisticated elements of engagement within Web sites (eg, interactive tools, media, and gamification) or other digital health components (eg, text or short messaging service) delivered in conjunction with Web sites.37 Internet-based interventions have been used to translate evidence-based interventions to the digital realm to increase access and convenience for participants, as well as reduce provider resources and costs needed to deliver interventions. For example, a randomized trial of a Web-based versus print smoking cessation intervention for young adult survivors of childhood and adolescent cancers demonstrated equivalency in cessation rates and quit attempts.32 These results support the use of the Internet to scale efficacious interventions.

Internet interventions have also been used as adjuncts to telephone or in-person interventions. For example, a weight loss intervention for child and adolescent acute lymphoblastic leukemia survivors used a combination of Web, text, and telephone counseling to promote weight loss and improve physical activity.34 Other Internet interventions have targeted health promotion behaviors among AYA survivors using a custom-designed Web site,31 an adapted version of an effective Web-based program designed for adults,30 or a commercially available fitness tracker and Web site.29

Although the Internet offers great promise in delivering high-quality and tailored information to AYA survivors and increasing engagement outside of in-person meetings, a major challenge is the reliance on the user to initiate use.68 A randomized pilot study of a Web-based portal to provide AYA cancer survivors with tailored treatment summaries and guidance regarding risk for late effects had low usage, with only 46% accessing the Web site and, of those, only one third logging in more than once.35 Gilliam et al28 demonstrated the feasibility of a Web-based token economy to promote adherence to a community-based face-to-face exercise intervention for child and adolescent survivors, but the intervention did not increase adherence to home exercise between sessions.

Although the majority of Internet interventions have focused on survivors, several studies targeted providers to improve the delivery of survivorship care. In the United States, the Passport for Care Web-based clinical tool was developed for providers to create individual patient survivorship care plans using guidelines-based recommendations for follow-up care.36 Evaluation of a patient-focused portal is ongoing.36 Similarly, in the Netherlands, a Web-based survivorship care plan portal was created to enhance communication among oncologists, family medicine providers, and survivors promoting guidelines-based shared care for long-term follow-up.39

In sum, the Internet offers great promise in terms of convenience, access, and opportunities for engagement in behavioral interventions. There are few rigorously designed studies to make conclusions regarding the efficacy of Internet interventions for AYA survivors. However, it is encouraging that recent reviews have found evidence for the efficacy of Internet interventions in related areas (eg, improving mental health in adults,68 health outcomes in pediatrics69).

mHEALTH APPLICATIONS

mHealth interventions have used text messaging/short messaging service or mobile applications (apps) to deliver interventions targeting a variety of health outcomes. One study examined the feasibility of using text message reminders to increase compliance with survivorship care recommendations and resource use.67 Participants found the text messages to be acceptable, and they recommended adding a social networking component to the program.67 Smartphone apps for AYA cancer survivors have targeted cancer-related symptoms, medication taking, post-treatment follow-up and survivorship, and other health behaviors. A main area of focus has been symptom assessment and management. Existing apps enable AYA patients to record ongoing symptoms, including pain,40,42 mucositis,43 or multiple symptoms.44,45 For example, Macpherson et al45 pilot tested an app that assessed a range of possible symptoms and provided a personalized visualization of symptom clusters. Preliminary evaluations of such symptom assessment apps indicate that they are feasible in terms of the time required to complete the symptom assessment and acceptable to patients in terms of ease; patients were also generally compliant with prompts to complete the electronic assessments.4345

Other apps have built on assessment to also provide real-time symptom management interventions.40,46 For example, Stinson et al42 piloted an app for pain assessment with adolescent patients with cancer that incorporated a gamebased reward system. The assessment app was feasibly deployed, and adolescents reported high satisfaction. In a follow-up study, adolescents using the app received automated messages related to pain management when they reported experiencing pain. If participants reported per-sistent pain, a nurse contacted the adolescent to discuss other pain management strategies, such as potential medication changes.40

In addition to symptom assessment and management, apps have been used to target other health behaviors, such as medication adherence and compliance with follow-up care. Results of initial feasibility and acceptability studies indicate that AYA patients find such apps easy to use.41,47 For example, 91% of participants offered an app to prompt oral medication taking used the app at least once, and 74% reported that the reminders provided by the app helped them to take their oral medications as prescribed.41 Apps have also been used as part of a larger intervention package, including in an AYA cancer survivorship program with educational components for providers, advocates, survivors, and their families.48 In this latter example, the app provided survivors with information on health behaviors and survivorship care plans.

Given the widespread use of smartphones among AYAs in general,4 apps offer a ubiquitous medium through which to deliver interventions for AYA survivors. Studies on app use in this population thus far have focused primarily on single-site, pretesting/post-testing designs, with initial feasibility and acceptability metrics. As the field develops, multisite studies and efficacy trials will be essential for extending the generalizability of results and documenting the symptom or health behavior outcomes associated with app use. Future work should also examine the potential benefits of using apps to connect survivors with support networks (eg, peers, their families), health care providers, and other digital health technologies (eg, fitness trackers, electronic medical record systems) in real-time across multiple settings.

SOCIAL MEDIA

Social media platforms can be used in health behavior interventions to reach diverse groups without geographic restrictions, provide a forum for information dissemination and exchange, and enable provision of support from peers, family, and health professionals. There is accumulating evidence from studies across target populations that interventions delivered via social media platforms have significant potential to facilitate health communications and promote an array of health-related behaviors.70

Among AYA survivors, social media health promotion research has thus far primarily used Facebook. In an early study, Valle et al49 conducted a randomized controlled trial of a Facebook-based physical activity intervention versus a self-help comparison among young adult cancer survivors. Self-reported moderate to vigorous physical activity increased equally in both groups over a 12-week period, although the participants in the Facebook group had significantly greater increases in light physical activity. Similar to other studies of social media–based interventions with different populations, participant engagement decreased over the course of the intervention, and greater engagement was positively associated with changes in physical activity.50 Several other recent pilot studies demonstrated encouraging feasibility results of Facebook-based interventions for AYA cancer survivors, but they have provided limited evidence of their efficacy with regard to increasing self-reported or objectively measured physical activity.29,51

In terms of other social media platforms, video-based approaches have been used in a number of studies. For example, McLaughlin et al52 developed their own social media site (LIFECommunity) for young adult cancer survivors that allowed individuals to create a blog and share messages, photographs, and videos with other participants. Participants were encouraged to create and share video narratives on different topics (eg, communicating with health care providers, coping with cancer). Participants with weaker face-to-face family and friend social networks used the social media site to a greater degree than individuals with stronger social networks. Interestingly, participants with preexisting strong social connections with other cancer survivors also used the site to a greater degree than individuals with fewer such connections.52 Thus, engagement in social media sites may serve the dual purpose of fulfilling potential deficits in support from family and friends and reaffirming or bolstering support from other cancer survivors.

Observing AYA survivors’ use of existing social media platforms may lead to novel insights on how survivors express and receive social support in these digital mediums. For example, researchers have examined the content of posts in Twitter communities using cancer hashtags,71 online cancer support forums,24 and video diaries in an online support community.53 A list of organiza-tions that use social media platforms to connect with AYA cancer survivors and other interested individuals is available elsewhere.21

Overall, social media–based research related to AYA cancer survivors is in its early stages and has consisted primarily of small-scale pilot and feasibility studies. Future studies should use larger sample sizes, rigorous research designs, and both subjective and objective outcome measures when possible, and expand to consider a broad array of social media platforms that may appeal to AYA cancer survivors (eg, Instagram, Snapchat).

TELEHEALTH

Telehealth is the use of technology such as videoconferencing to connect two or more individuals (eg, AYA survivor and health care provider) in replacement of an in-person connection.3 For example, an Internet cognitive-behavioral intervention to reduce post-traumatic stress symptoms and anxiety had AYA survivors engage in writing sessions online and connected them virtually with a therapist.56 Similarly, group-based interventions have been successfully delivered using online videoconferencing. One example is a nurse-led intervention to enhance hope among young adult survivors of childhood cancer.57 Another example is an instructor-led mindfulness-based self-compassion group intervention to reduce distress and improve psychosocial out-comes.54 This study primarily recruited via social media, demonstrating the feasibility of recruiting and intervening online. Although there are ethical and clinical challenges associated with providing psychotherapy online, giving hard-to-reach groups access to evidence-based interventions is a major advantage.55

Telehealth interventions have also been examined as a strategy for overcoming patient and provider barriers to long-term follow-up care. One study tested the feasibility of a telemedicine transition visit using videoconferencing between a primary care provider and a member of a survivorship care team. Primary care physician and AYA cancer survivor dyads communicated with a pediatric survivorship clinic team member who reviewed the patient’s treatment summary and survivorship care plan. Patients and providers rated the intervention highly, but technologic limitations curtailed the feasibility of this model.72

EMERGING DIGITAL HEALTH INTERVENTIONS

Emerging areas include the use of digital storytelling, video gaming, and virtual reality to address psychosocial and health care utilization concerns of AYA survivors. Digital storytelling involves the creation of a video narrative or personal story through the use of computer and multimedia tools combining video, images, music, voice narration, or other sounds. A qualitative study of 16 AYA survivors and their family members found that the process of creating a digital story provided AYAs and their family members new ways to communicate about and make meaning of their cancer experience.63 The results of a case study of an adolescent who created a video narrative demonstrated similar therapeutic benefits.65

Video gaming has been explored as an intervention for physical activity and adherence for AYA survivors. For example, 13 adolescent brain tumor survivors participated in an active video gaming intervention with videoconference coaching to improve physical activity.58 Despite small to modest improvements in energy expenditure and body composition, high patient-reported satisfaction with the coaching component provided preliminary support for this method of delivery.58 Another video game intervention was used with AYAs to increase medication adherence by targeting behavioral correlates, including self-efficacy and locus of control. This 375-participant, multicenter randomized controlled trial (RCT) showed significantly improved levels of adherence among the intervention group.59 Computerized cognitive remediation uses game-like exercises to improve working memory and has shown promise for acute lymphoblastic leukemia and brain tumor survivors.60,61 Virtual reality has been used to reduce anxiety and depression during medical procedures and chemotherapy for younger62,64 and older adult66 cancer populations. Future exploration of virtual reality for AYA survivors is warranted.

SUMMARY AND FUTURE DIRECTIONS

Digital health technology offers immense promise for improving care and outcomes among AYA survivors across a variety of domains. Advantages and disadvantages of different digital modalities are listed in Table 2. Investigators should carefully consider the goal of the intervention; the purpose of the technology (eg, to provide information, to prompt adherence to an intervention, to connect AYA survivors with peer support, to replace face-to-face counseling); the suitability of available commercial platforms versus custom products; resources for developing, maintaining, and analyzing data from the technology; and any training or support required to implement the intervention to select the most appropriate platform.73,74 Notably, health behavior change theory and techniques can be applied in any modality, although some modalities may be advantageous for certain techniques (eg, interventions relying on prompts may prefer to use mobile apps or text messaging in response to triggers collected from mobile data, whereas interventions proposing to change social norms may prefer to use a social media platform).

Table 2.

Advantages and Disadvantages of Digital Health Modalities

Modality Examples Advantages Disadvantages
Internet Web sites Near-universal access among AYAs Relies on patient to initiate use
Asynchronous forums Web sites accessible across multiple devices Concerns about privacy/confidentiality
Chat/instant message Opportunity for interactive elements Technical expertise required to develop high-quality Web site
Electronic health records Asynchronous communication allows response at AYA’s convenience If site not mobile-responsive, may limit convenience and AYA willingness to access
Cost effective over time Asynchronous communication results in variable response times
mHealth Text messaging Real-time data collection and prompting Concerns about privacy/confidentiality
Smartphone applications Cell phone use is nearly universal among AYAs Requires developers or working with external companies to obtain data; companies may change policies over time
Wearable devices (eg, fitness trackers) Harness data from other smartphone components (eg, global positioning system, voice, camera) Technical expertise required to analyze and interpret large amount of data collected by mobile/wearable devices
Device and messaging costs are generally low Requires ongoing support and modification to avoid obsolete technology
Commercial apps available or can customize a new one
Social media73 Facebook Free and widely used commercial platforms available Concerns about privacy/confidentiality
Twitter Social media already embedded into daily life of most AYAs Participants may view intervention as intrusion to social network
Instagram Opportunities to use existing networks or create new peer support networks Requires conversion or development of content in a format appropriate for social media platform
Snapchat Potential recruitment tool Requires thoughtful engagement plan, but there is little existing research to guide strategies to promote meaningful engagement
Generally low cost May require developers or working with external programs to obtain usage data; existing social media platforms may change policies over time
Avenue for dissemination of evidence-based practice Institutional policies regarding professional use of social media and concerns about compliance with ethical standards (eg, seeming to provide diagnosis, informal interactions with patients in public context)
Telehealth Videoconferencing Increases access to those at great distance or unable to access in-person interventions Concerns about privacy/confidentiality
Remote delivery of group intervention Can facilitate collaboration among professionals (eg, cancer specialist and general practitioner) Concerns about quality/limited information compared with face-to-face interaction
Online counseling Allows patients to connect with one another even if geographically widespread Equipment and informational technology requirements
May replace or supplement in-person support Legal concerns
Concerns about reimbursement for services
Participants may require technical support
Digital storytelling Video narratives Provides a platform for education and communication Limited research on benefits
Digital scrapbooks Allows patient creativity Concerns about privacy/confidentiality
Patient centered May be difficult to disseminate
Requires production time/costs
Video gaming Active video games for exercise or physical activity Appealing or fun to AYAs Availability of technology
Games related to memory or cognitive rehabilitation May be used to reinforce health behaviors or simulate alternative consequences in safe environment Development requires technical expertise
Games can adapt level of difficulty on the basis of user response Educational games difficult to compete with video game industry
Virtual reality Headset to play distracting game during medical procedure Appealing or fun to AYAs Requires specialized device
Allows simulation of physical environments Expensive to disseminate
Limited research to date

Abbreviation: apps, applications; AYA, adolescent and young adult.

The digital health interventions reviewed in this article targeted a range of health behaviors and outcomes, including physical activity, risk behaviors, psychosocial well-being, symptom management, and survivorship delivery and care. These interventions mostly demonstrated feasibility and acceptability among AYA survivors, but rigorous efficacy studies have generally not yet been conducted. Future work should address important AYA-specific concerns, such as successful health care transition (eg, to adult providers or to primary care providers); reproductive health and family planning; and promoting the social, economic, and employment outcomes of AYA patients with cancer.10 Despite the distinct psychological, developmental, and resource needs for this group, few studies have targeted AYA cancer survivors exclusively (instead of grouping them with a broader age range of adult or pediatric survivors).

Characteristic of early intervention work, the studies reviewed primarily used single-arm and feasibility designs. The majority of RCTs conducted thus far tested Internet interventions, which were one of the earlier digital health modalities established. Although RCTs are the traditional gold standard in research, the relatively slow nature of these designs poses problems with outdated and changing technology by the end of the trial.75 Other rigorous research designs have been recommended to optimize technology-based interventions, including single-case or n-of-1 designs, factorial designs, and sequential multiple assignment randomized trials (for review, see Dallery et al75).

Engaging AYA cancer survivors is challenging18,35,76; thus, future digital health interventions should consider methods for enhancing user engagement, which can be assessed subjectively (eg, using surveys or interviews with participants) and objectively (eg, frequency and duration of logins, proportion of intervention material viewed). There are insufficient data from studies of AYA cancer survivors to draw conclusions about user engagement. However, results of studies from other populations suggest that user engagement is positively associated with the efficacy of digital interventions.77 A variety of approaches have been found to enhance user engagement, including gamification, use of prompts, and tailoring of content.7880

In conclusion, the research to date is promising in that many digital health interventions are feasible and acceptable to AYA survivors. However, more work is needed to evaluate the effectiveness of such interventions in changing behaviors and improving health outcomes. There are many ongoing trials of digital health interventions for this group, particularly in mHealth and multicomponent Internet interventions. We recommend involving AYAs early in the development and usability testing of digital health interventions to gain valuable feedback in creating a feasible intervention.37 We recommend the use of a staged framework to design and evaluate a new intervention, focusing on understanding user and design needs,81 to help researchers decide whether and how to develop digital health solutions for AYA survivors. Although technology poses challenges in terms of the rapidly changing landscape of technical advances (in contrast to the slower speed of academic research) and the initial and ongoing expense of maintaining technology, there are numerous advantages that make it particularly powerful for AYA survivors. As technology is increasingly included in or becoming the primary modality of behavioral interventions, we recommend a team science approach to designing and implementing these interventions, including (but not limited to) behavioral scientists, computer scientists/human-computer interaction specialists, biostatisticians experienced in big data analysis, and mHealth/social media experts.

Acknowledgments

Elliot J. Coups

Research Funding: Johnson & Johnson

Supported in part by the National Cancer Institute of the National Institutes of Health (K07CA174728 to K.A.D., K07CA196985 to Y.P.W.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Footnotes

AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc.

Katie A. Devine

No relationship to disclose

Adrienne S. Viola

No relationship to disclose

Yelena P. Wu

No relationship to disclose

Contributor Information

Katie A. Devine, Rutgers Cancer Institute of New Jersey, New Brunswick, NJ

Adrienne S. Viola, Rutgers Cancer Institute of New Jersey, New Brunswick, NJ

Elliot J. Coups, Rutgers Cancer Institute of New Jersey, New Brunswick, NJ

Yelena P. Wu, Huntsman Cancer Institute, Salt Lake City, UT

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