RESUMO
BACKGROUND: Adolescents and young adults often experience existential concerns in addition to side effects during a cancer trajectory, which they often carry alone. Thus, cohesion with other adolescents and young adults with cancer is essential but difficult due to the relatively small, widely dispersed nationwide population. In cocreation, a smartphone app has been developed and includes an information bank, a symptom tracker, and a social community platform, aiming to improve the quality of life (QoL) in this patient group. OBJECTIVE: This nationwide, multicenter study aimed to investigate the QoL in adolescents and young adults undergoing a cancer trajectory as they used the app for 6 weeks. METHODS: Via youth support initiatives, participants were recruited from hospitals in all regions of Denmark. Inclusion criteria were patients with cancer aged 15-29 years who either initiated any cancer treatment or started follow-up after cancer treatment within 30 days. Participants used the adolescents and young adults cancer app for 6 weeks. Before and after the 6 weeks of app use, they completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). The participants were divided into a treatment and a follow-up group for analysis. A high score for a functional scale or the global health or overall QoL represents a high or healthy level of functioning or high QoL, respectively; however, a high score for a symptom scale or item represents a high level of symptomatology. RESULTS: Overall, 81 participants were recruited. However, 4 participants did not answer the questionnaire and 6 participants did not use the app. In the treatment group (n=36), significant improvement was found in 2 domains: "Role functioning" (baseline median 33.33, IQR 16.67-83.33 vs 6 weeks median 66.67, IQR 33.33-83.33; P=.04) and "Pain" (baseline median 33.33, IQR 16.67-50.00 vs 6 weeks median 16.67, IQR 0.00-33.33; P=.04). The "Global health/Overall QoL" scale remained stable (baseline median 58.33, IQR 45.83-77.08 vs 6 weeks median 62.50, IQR 41.67-75.00; P=.25). In the follow-up group (n=35), significant improvement was found in 3 domains: "Physical functioning" (baseline median 79.23, IQR 73.33-93.33 vs 6 weeks median 82.86, IQR 73.33-100.00; P=.03), "Cognitive functioning" (baseline median 62.38, IQR 50.00-83.33 vs 6 weeks median 69.52, IQR 50.00-100.00; P=.02), and "Social functioning" (baseline median 76.19, IQR 50.00-100.00 vs 6 weeks median 85.71, IQR 83.33-100.00; P=.05), as well as in the "Global health/Overall QoL" scale (baseline median 57.14, IQR 83.33-100.00 vs 6 weeks median 75.0, IQR 62.91-85.73; P<.001). CONCLUSIONS: In this study, we found an improvement in specific QoL scales for both participants in treatment and follow-up when using the app for 6 weeks. The global health or overall QoL score improved significantly in the follow-up group. In the treatment group, it remained stable. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/10098.
RESUMO
OBJECTIVES: Adolescents and young adults (AYAs) with cancer have identified connection to online communities of same-age peers to be essential for psycho-social support. In this study, the aim was to explore AYAs with cancers' and AYA cancer survivors' use of the Kræftværket cancer app's social forum and experiences of peer communities in the forum. Differences due to gender and treatment status were investigated. DATA SOURCES: In all, 85 AYAs aged 15-29 were recruited: 46 on and 39 off cancer treatment. The use of the social forum was assessed by a questionnaire, which were analyzed using descriptive statistics, and telephone interviews were analyzed thematically by the Framework Method. CONCLUSION: Some AYAs assessed the social forum to be more valuable at time of diagnosis, while others experienced meaningful peer-support after cancer. Women were more active and diligent users than men. The following themes were found: 1) Common understanding of each other's challenges; 2) Other AYAs' stories increase the feeling of comfort but can also be difficult to accommodate; 3) A temporary and unwanted community; and 4) The interaction is personal but quickly stalls. IMPLICATIONS FOR NURSING PRACTICE: The results are relevant to the development of AYA cancer apps, with a view to strengthening peer-to-peer relationships. Although the use of the Kræftværket app was temporary, it presented a meaningful community for AYAs with cancer. The community feeling reduced loneliness and increased the sense of togetherness. The app met AYAs' needs and wishes for peer-to-peer age-appropriate cancer support, which can be implemented and provided by nurses.