Abstract
BackgroundAdolescents and young adults with cancer face significant challenges during the course of their medical treatment and recovery from illness. Many adolescents and young adults struggle with long-term complications in the physical, psychosocial, economic, and academic domains. Mobile health (mHealth) interventions provide an innovative platform for delivering supportive care, particularly through the utilization of apps on smartphones and tablets. To create a successful mHealth intervention for adolescents and young adults, youth input and feedback is essential. The process of cocreation, in which the target app user has a direct role in dictating design and function, was utilized to create the prototype smartphone app for adolescents and young adults with cancer, “Kræftværket.”ObjectiveThe objective of this paper is to describe the protocol for the evaluation of the Kræftværket app, a prototype app designed via cocreation, to support and improve health-related quality of life for adolescents and young adults with cancer.MethodsThe Kræftværket app has three primary features, (1) a symptom and activity diary, (2) a supportive communication network between app users, and (3) a “one-stop shop” information bank with practical information as well as links to patient organizations and other resources. The app will be evaluated in two phases, a pilot test and an implementation test. In the pilot test, the app will be launched to a test group of 20 adolescents and young adults aged 15 to 29 years, selected for equal representation amongst age group and treatment status. Patients will be allowed to utilize the app over the course of six weeks and will complete a baseline and follow-up European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) health-related quality of life inventory. In addition, participant focus group interviews will be conducted according to a semistructured interview guide. Resulting data will be analyzed using thematic analysis. Results and appropriate analysis from both the qualitative and quantitative branches of the pilot test will be discussed amongst the research group, and appropriate changes based on user feedback will be made to the app before the final project phase. In the implementation test, the app will be provided and utilized by a sample of 50 adolescents and young adults aged 15-29 years selected for equal representation amongst gender, age group, diagnosis, and treatment status over the course of 3 months. Participants will be asked to complete a baseline and follow-up EORTC QLQ-C30 HRQoL inventory.ResultsPilot testing is expected to take place in February 2018, and implementation testing is expected to begin May 2018.ConclusionsIt is the hope that Kræftværket app will serve as a beneficial and easily utilized product. The process of evaluating the app and its effect on quality of life will address the absence of evidence-based mHealth interventions, and attempt to validate new approaches to benefitting adolescents and young adult oncology patients in the digital world.Registered Report IdentifierRR1-10.2196/10098
Highlights
Adolescents and young adults (AYAs) are a group with health care needs which are separate from both adult medicine and pediatrics
Patients will be allowed to utilize the app over the course of six weeks and will complete a baseline and follow-up European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) health-related quality of life inventory
The process of evaluating the app and its effect on quality of life will address the absence of evidence-based Mobile health (mHealth) interventions, and attempt to validate new approaches to benefitting adolescents and young adult oncology patients in the digital world
Summary
Adolescents and young adults (AYAs) are a group with health care needs which are separate from both adult medicine and pediatrics. While the age range definition for AYA patients varies by organization, the Danish Cancer Society has compiled a large-scale report addressing the AYA oncology population aged 15 to 29 years [5] This age range is used at our institution, as opposed to those proposed by the WHO (ages 12-24 years) or US National Cancer Institute (ages 15-39 years), in order to complement existing literature on AYA hematology and oncology in Denmark, as well as to correspond with the age range provided for AYA support organizations in Denmark [5,11,12]. The process of cocreation, in which the target app user has a direct role in dictating design and function, was utilized to create the prototype smartphone app for adolescents and young adults with cancer, “Kræftværket.”
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