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

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          Abstract

          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

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          Most cited references38

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          Mapping mHealth Research: A Decade of Evolution

          Background For the last decade, mHealth has constantly expanded as a part of eHealth. Mobile applications for health have the potential to target heterogeneous audiences and address specific needs in different situations, with diverse outcomes, and to complement highly developed health care technologies. The market is rapidly evolving, making countless new mobile technologies potentially available to the health care system; however, systematic research on the impact of these technologies on health outcomes remains scarce. Objective To provide a comprehensive view of the field of mHealth research to date and to understand whether and how the new generation of smartphones has triggered research, since their introduction 5 years ago. Specifically, we focused on studies aiming to evaluate the impact of mobile phones on health, and we sought to identify the main areas of health care delivery where mobile technologies can have an impact. Methods A systematic literature review was conducted on the impact of mobile phones and smartphones in health care. Abstracts and articles were categorized using typologies that were partly adapted from existing literature and partly created inductively from publications included in the review. Results The final sample consisted of 117 articles published between 2002 and 2012. The majority of them were published in the second half of our observation period, with a clear upsurge between 2007 and 2008, when the number of articles almost doubled. The articles were published in 77 different journals, mostly from the field of medicine or technology and medicine. Although the range of health conditions addressed was very wide, a clear focus on chronic conditions was noted. The research methodology of these studies was mostly clinical trials and pilot studies, but new designs were introduced in the second half of our observation period. The size of the samples drawn to test mobile health applications also increased over time. The majority of the studies tested basic mobile phone features (eg, text messaging), while only a few assessed the impact of smartphone apps. Regarding the investigated outcomes, we observed a shift from assessment of the technology itself to assessment of its impact. The outcome measures used in the studies were mostly clinical, including both self-reported and objective measures. Conclusions Research interest in mHealth is growing, together with an increasing complexity in research designs and aim specifications, as well as a diversification of the impact areas. However, new opportunities offered by new mobile technologies do not seem to have been explored thus far. Mapping the evolution of the field allows a better understanding of its strengths and weaknesses and can inform future developments.
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            A model for assessment of telemedicine applications: mast.

            Telemedicine applications could potentially solve many of the challenges faced by the healthcare sectors in Europe. However, a framework for assessment of these technologies is need by decision makers to assist them in choosing the most efficient and cost-effective technologies. Therefore in 2009 the European Commission initiated the development of a framework for assessing telemedicine applications, based on the users' need for information for decision making. This article presents the Model for ASsessment of Telemedicine applications (MAST) developed in this study. MAST was developed through workshops with users and stakeholders of telemedicine. Based on the workshops and using the EUnetHTA Core HTA Model as a starting point a three-element model was developed, including: (i) preceding considerations, (ii) multidisciplinary assessment, and (iii) transferability assessment. In the multidisciplinary assessment, the outcomes of telemedicine applications comprise seven domains, based on the domains in the EUnetHTA model. MAST provides a structure for future assessment of telemedicine applications. MAST will be tested during 2010-13 in twenty studies of telemedicine applications in nine European countries in the EC project Renewing Health.
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              Psychological, social, and behavioral issues for young adults with cancer.

              Theories of human development suggest that, although all cancer patients experience a common set of life disruptions, they experience them differently, focus on different issues, and attach different levels of importance to different aspects of the experience depending on the time in life at which they were diagnosed. During the critical developmental transition from childhood to adulthood, older adolescents and young adults in particular have typical concerns with establishing identity, developing a positive body image and sexual identity, separating from parents, increasing involvement with peers and dating, and beginning to make decisions about careers or employment, higher education, and/or family. Accordingly, cancer-related issues such as premature confrontation with mortality, changes in physical appearance, increased dependence on parents, disruptions in social life and school/employment because of treatment, loss of reproductive capacity, and health-related concerns about the future may be particularly distressing for adolescents and young adults. Psychosocial and behavioral interventions for young adult cancer patients and survivors often involve assisting these individuals in retaining or returning to function in significant social roles, such as spouse, parent, student, worker, or friend. Successful interventions will enable these young people to overcome the detrimental impact of a health crisis and strengthen the internal and external coping resources available to them.
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                Author and article information

                Contributors
                Journal
                JMIR Res Protoc
                JMIR Res Protoc
                ResProt
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                1929-0748
                May 2018
                10 May 2018
                : 7
                : 5
                : e10098
                Affiliations
                [1] 1 School of Medicine University of Kansas Kansas City, KS United States
                [2] 2 Department of Oncology Rigshospitalet, Copenhagen University Hospital Copenhagen Denmark
                [3] 3 Department of Hematology Rigshospitalet, Copenhagen University Hospital Copenhagen Denmark
                [4] 4 Department of Pediatric Hematology and Oncology The Child and Youth Clinic Rigshospitalet, Copenhagen University Hospital Copenhagen Denmark
                [5] 5 Center for Adolescent Medicine Rigshospitalet, Copenhagen University Hospital Copenhagen Denmark
                Author notes
                Corresponding Author: Helle Pappot Helle.Pappot@ 123456regionh.dk
                Author information
                http://orcid.org/0000-0002-2482-3015
                http://orcid.org/0000-0001-9210-8753
                http://orcid.org/0000-0001-5672-1323
                http://orcid.org/0000-0001-5186-3365
                http://orcid.org/0000-0001-9880-5242
                http://orcid.org/0000-0002-3374-6621
                http://orcid.org/0000-0002-3570-5372
                Article
                v7i5e10098
                10.2196/10098
                5980487
                29748162
                12f473cc-52d3-4707-b710-f7d2dee173f7
                ©Abbey Elsbernd, Maiken Hjerming, Camilla Visler, Lisa Lyngsie Hjalgrim, Carsten Utoft Niemann, Kirsten Boisen, Helle Pappot. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 10.05.2018.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.

                History
                : 12 February 2018
                : 31 March 2018
                : 9 April 2018
                : 24 April 2018
                Categories
                Protocol
                Protocol

                aya,adolescent and young adult,cancer, mhealth,oncology,cocreation,hrqol,quality of life,smartphone

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