Cocreated Smartphone App to Improve the Quality of Life of Adolescents and Young Adults with Cancer (Kraeftvaerket): Protocol for a Quantitative and Qualitative Evaluation

被引:26
|
作者
Elsbernd, Abbey [1 ,2 ]
Hjerming, Maiken [3 ]
Visler, Camilla [3 ]
Hjalgrim, Lisa Lyngsie [4 ]
Niemann, Carsten Utoft [2 ]
Boisen, Kirsten [5 ]
Pappot, Helle [2 ]
机构
[1] Univ Kansas, Sch Med, Kansas City, KS USA
[2] Copenhagen Univ Hosp, Rigshosp, Dept Oncol, Blegdamsvej 9, DK-2100 Copenhagen, Denmark
[3] Copenhagen Univ Hosp, Rigshosp, Dept Hematol, Copenhagen, Denmark
[4] Copenhagen Univ Hosp, Rigshosp, Child & Youth Clin, Dept Pediat Hematol & Oncol, Copenhagen, Denmark
[5] Copenhagen Univ Hosp, Rigshosp, Ctr Adolescent Med, Copenhagen, Denmark
来源
JMIR RESEARCH PROTOCOLS | 2018年 / 7卷 / 05期
关键词
AYA; adolescent and young adult; cancer; mHealth; oncology; cocreation; HRQoL; quality of life; smartphone;
D O I
10.2196/10098
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Background: Adolescents 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, "Kraeftvaerket." Objective: The objective of this paper is to describe the protocol for the evaluation of the Kraeftvaerket app, a prototype app designed via cocreation, to support and improve health-related quality of life for adolescents and young adults with cancer. Methods: The Kraeftvaerket 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. Results: Pilot testing is expected to take place in February 2018, and implementation testing is expected to begin May 2018. Conclusions: It is the hope that Kraeftvaerket 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.
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页数:10
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