Usability of a Mobile Phone App Aimed at Adolescents and Young Adults During and After Cancer Treatment: Qualitative Study.

BACKGROUND: Adolescent and young adult (AYA) cancer patients are seldom involved in the process of testing cancer-related apps. As such, knowledge about youth-specific content, functionalities, and design is sparse. As a part of a co-creation process of developing the mobile phone app Kræftværket, AYAs in treatment for cancer and in follow-up participated in a usability think-aloud test of a prototype of the app. Thus, the app was initiated, created, and evaluated by AYAs with cancer experience. OBJECTIVE: The aim of this study was to explore the results of a think-aloud test administered to see how the prototype of the app Kræftværket was used by AYAs in treatment for cancer and in follow-up, and to investigate the strengths and weaknesses of the app. METHODS: A total of 20 AYA cancer patients aged 16 to 29 years (n=10 on treatment, n=10 in follow-up) were provided with the first version of the co-created mobile phone app Kræftværket during a 6-week test period (April-May 2018). After the test period, 15 participated in individual usability think-aloud tests. The tests were video-recorded, transcribed verbatim, and analyzed using a thematic analysis approach. RESULTS: The thematic analysis led to the following themes and subthemes: navigation (subthemes: intuition, features, buttons, home page, profile), visual and graphic design (subthemes: overview, text and colors, photos, videos, YouTube), and usefulness (subthemes: notifications, posts, adding). The analysis identified gender differences in app utilization-female participants seemed to be more familiar with parts of the app. The app seemed to be more relevant to AYAs receiving treatment due to app functions such as tracking symptoms and searching for relevant information. Lack of notifications and incorrect counting of posts were perceived as barriers to using the app. CONCLUSIONS: Usability testing is crucial to meet the needs of the AYA target audience. AYA cancer apps should preferably be relevant, targeted, and unique, and include a tracking function and AYA-produced videos. Notifications and correct marking and ordering of posts are critical to make apps engaging and dynamic. Further research is recommended to evaluate the Kræftværket app with the input of more AYAs.

Health-Related Quality of Life Before and After Use of a Smartphone App for Adolescents and Young Adults With Cancer: Pre-Post Interventional Study.

BACKGROUND: Adolescent and young adult (AYA) patients with cancer are a group with underexplored needs throughout treatment and in survivorship. This missing knowledge can influence their quality of life (QoL). Given this fact, we have developed a smartphone app based on a cocreation process and have an investigation of QoL among users planned as part of pilot testing this app. Future research is warranted to determine the effect of mobile health (mHealth) tools such as smartphone apps among the AYA cancer population. OBJECTIVE: The aim of this study was to investigate the feasibility of a smartphone app among AYA patients with cancer in active treatment and posttreatment, in a pilot test by measuring health-related QoL before and after the use of the app. METHODS: Participants were recruited via the youth support initiative and social organization for AYAs with cancer, Kræftværket, based at Rigshospitalet, University Hospital of Copenhagen, Denmark. Participants were evenly distributed in active treatment and posttreatment groups. After written informed consent, all participants were asked to use the app Kræftværket as they deemed appropriate over a 6-week period. The participants were asked to complete the 30-item European Organization for Research and Treatment of Cancer Quality of Life Questionnaire before and after the 6-week period. The collected QoL data were analyzed with t tests to determine differences between groups and from baseline. RESULTS: In total, we enrolled 20 participants, 10 in active treatment and 10 posttreatment (median time after treatment was 4 months) group. Median age of the participants was 25 years. No differences in QoL were seen at baseline (P=.65). The posttreatment group experienced a significant increase in overall QoL after the 6-week period (global QoL: baseline 62.5, SD 22.3; after 6 weeks 80.8, SD 9.7; P=.04). For the group in active treatment, the QoL remained stable throughout the 6 weeks. CONCLUSIONS: This study shows the feasibility and possible effect on QoL associated with the use of an mHealth tool in AYA patients. mHealth support tools are warranted for this population.

Individual Experiences and Utilization of Supportive Resources in Adolescents and Young Adults with Cancer.

Background: Adolescents and young adults (AYAs) with cancer are often impacted by distress due to disease and treatment. Despite these concerns, prior research has found that AYAs do not utilize support resources, do not find these resources adequate, and or do not have adequate access to services. Objective: The objective of this project was to understand and identify AYA patient concerns and experiences throughout cancer treatment, what resources were utilized, how they were identified, and how supportive care resources for AYA cancer patients can be improved. Methods: Twenty-eight AYA cancer patients and survivors were interviewed on their experiences and utilization of supportive resources throughout cancer treatment. Qualitative data were analyzed using thematic analysis and organized through a priori framework examining specific domains of experience and resources utilized. Results: The most frequently discussed topic in qualitative interviews was the benefit of the health care team. Other frequently identified resources were generalized internet searches and webpages. Suggested unmet resource needs included supportive resources for family members and caregivers throughout the time of treatment. Conclusions: AYAs experience stress throughout treatment for cancer attributed to physical, practical, and psychosocial causes. Health care workers play a vital role in serving as an informative and supportive resource for their AYA patients. As such, health care workers and other supportive resources may alleviate these concerns, but these resources are still underexplored.

Developing Age-Appropriate Supportive Facilities, Resources, and Activities for Adolescents and Young Adults with Cancer Across Departments and Diagnoses: A Single-Center Experience.

In 2015, a support initiative for adolescents and young adults with cancer, Kræftværket, was created at Rigshospitalet, Copenhagen University Hospital in Denmark. The primary objective of Kræftværket is to provide youth-friendly support, care, and treatment practices. As Kræftværket provides services to both pediatric and adult departments, a network between patients who would otherwise not interact has been created. The initiative is managed by a Youth Coordinator, and specifically trained health professional Youth Ambassadors. Dedicated staff, including Youth Coordinator and the Youth Ambassadors, are essential in maintaining focus on current initiatives for this patient group.

"On Your Own": Adolescent and Young Adult Cancer Survivors' Experience of Managing Return to Secondary or Higher Education in Denmark.

PURPOSE: As a consequence of cancer treatment, many adolescents and young adults (AYA) patients are required to take leave or face setbacks from their education. While most AYA cancer survivors and survivors of childhood cancer are capable of successfully returning to the educational system, unsuccessful returns place AYA at an increased risk of social isolation, stigmatization, and financial burden. The perspective of AYA cancer survivors who have returned to education is valuable to understand the challenges faced and resources available throughout this transition. The purpose of this study was to explore AYA cancer survivors' management of returning to secondary or higher education. METHODS: Semistructured interviews were conducted with AYA cancer survivors between the ages of 15 and 25 at diagnosis pursuing secondary or higher education (n = 9). Interviews were transcribed verbatim and analyzed using Malterud's Systemic Text Condensation. RESULTS: Five themes were found: (Theme 1) Symptoms and Late Effects, (Theme 2) Navigating the System, (Theme 3) Lack of Understanding from Peers, (Theme 4) Unofficial Support, and (Theme 5) Changed Perspectives. AYA cancer survivors described facing challenges from the physical late effects of cancer treatment, as well as misunderstanding from municipal systems and peer groups. However, they stated that assistance was provided from unofficial sources of support, such as teachers and parents. CONCLUSIONS: AYA cancer survivors face social and systemic challenges throughout the return to education. The findings of this study support previous research suggesting that late effects and misunderstanding from peers and academic and municipal institutions may play a role in impacting social outcomes and academic performance.

Danish translation and pilot testing of the European Organization for Research and Treatment of Cancer QLQ-TC 26 (EORTC QLQ-TC26) questionnaire to assess health-related quality of life in patients with testicular cancer.

BACKGROUND: The European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 is a core questionnaire designed to evaluate health-related quality of life (HRQoL) of cancer patients participating in international clinical trials. It is available in several languages including Danish. The EORTC QLQ-TC26 is a supplemental module developed for patients with testicular cancer, which can be useful in clinical trials. Despite Denmark holding a high prevalence and incidence of testicular cancer, no Danish translation was previously available. This paper describes the translation process and pilot testing of the Danish translation of QLQ-TC26. METHODS: The English language EORTC QLQ-TC26 was translated into Danish using forward and backward procedures with reconciliation. The translated instrument was assessed in semi structured cognitive interviews in a sample of 10 patients ages 20-56 receiving treatment for testicular cancer. RESULTS: In one round of pilot testing, no changes were required for the Danish translation based upon patient comments. The Danish translation was agreed by participants to be both culturally acceptable and semantically comprehensible. CONCLUSIONS: The pilot testing of the Danish translation of the EORTC QLQ-TC26 was performed in one round of patient interviews; these results support the Danish translation as a comparable instrument to the English language version. However, further validation is required to ensure complete equivalency. These results support the use of the EORTC QLQ-TC26 in future clinical trials conducted with Danish-speaking patients.

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

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, "Kræftværket." OBJECTIVE: The 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. METHODS: The 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. 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 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 IDENTIFIER: RR1-10.2196/10098.

Facing the Maze: Young Cancer Survivors' Return to Education and Work-A Professional Expert Key Informant Study.

PURPOSE: An insufficient transition to normal life after cancer treatment in adolescent and young adults (AYAs) may lead to decreased occupational and educational opportunities throughout a survivor's lifespan. Key informant interviews were used to access unique knowledge of the healthcare, educational, and social systems. METHODS: We used key informant interviews with professionals representing disciplines from healthcare, educational, and social systems (n = 15). Informants were recruited through purposive sampling and snowball sampling. Interviews were analyzed thematically using Malterud's Systematic Text Condensation and verified by member checking. RESULTS: We found four major themes: the impact of late effects, navigating the system, social reintegration, and the drive of youth. Although legal frameworks are often in place to assist AYA cancer survivors, navigating the public, educational, and social systems is a complex task and many AYAs do not have the required skill set or energy. Furthermore, AYA survivors often feel different from their peers and misunderstood by their surroundings, which may hinder reintegration into normal social life. CONCLUSIONS: In Scandinavia, healthcare and education are free of charge with equal access for all, primarily funded by government taxes. Therefore, insurance status and tuition fees should not constitute barriers for returning to education and work. However, this study finds that the public and educational systems are complex to navigate, and that AYAs face trouble mobilizing the energy to receive needed support.

Using Cocreation in the Process of Designing a Smartphone App for Adolescents and Young Adults With Cancer: Prototype Development Study.

BACKGROUND: Adolescent and young adult (AYA) oncology and hematology is a developing field of medicine, focusing on a population that faces many challenges throughout medical treatment and beyond. Mobile health (mHealth) interventions provide exciting new opportunities for improvement of health-related quality of life (HRQoL) in AYAs with cancer. Many smartphone apps are currently available for AYAs with cancer; however, for AYAs with cancer, very few apps have been designed with direct input from AYAs themselves or have demonstrated their effectiveness and benefit. OBJECTIVE: The objective of this project was to develop the prototype of a smartphone app for AYAs with cancer through the process of cocreation, with the active input of AYAs who have received treatment for cancer directly impacting content and design. METHODS: Patients were recruited from a population of Danish AYAs who had received treatment for cancer between the ages of 15 and 29 years. The cocreation process was completed over the course of 3 workshops and intermittent ad hoc meetings, where the recruited AYAs worked in coordination with 1 nurse, 1 doctor, and 2 representatives from a digital agency and app developer. During each workshop, participants prioritized their goals for the app. After new app content was developed, feedback was requested from the participants, and changes were made accordingly. This iterative process continued until consensus on final product features and design were achieved. Health care professionals provided minimal input and primarily performed observational roles in the workshops, with direct interaction limited to introducing the project and explaining measurement features of the app in development. RESULTS: Three key features to be included in the prototype app were identified from the cocreation workshops: (1) a community forum; (2) an information library; and (3) a symptom and side-effect tracking tool. Bright, warm colors were selected for the app by the participating AYAs. The final prototype will be launched for pilot testing and implementation testing in February of 2018. CONCLUSIONS: The process of cocreation is a user-involved process that can create an end product that is useful and customized for the target population. This process, as such, is a beneficial process to utilize when addressing the specific needs of AYAs with cancer. The results of the here described app prototype will be evaluated in more detail in the near future. However, this description of the cocreation process in app development can be utilized for the creation of other mHealth interventions.