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

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Abstract

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.

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Most cited references 26

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Mapping mHealth Research: A Decade of Evolution

Maddalena Fiordelli, Nicola Diviani, Peter J. Schulz (2013)

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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Psychological, social, and behavioral issues for young adults with cancer.

Brad J Zebrack (2011)

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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Quality of life research within the EORTC-the EORTC QLQ-C30. European Organisation for Research and Treatment of Cancer.

Andrew Bottomley, P Fayers, … (2002)

In forming its Quality of Life Group, the EORTC created one of the earliest and largest of such groups in Europe. The EORTC QLQ-C30 which this group developed has become the most widely used questionnaire in Europe for cancer patients, and is extensively used around the world. The Quality of Life Group continues to build upon this success, both by refining the QLQ-C30, whilst developing a range of additional modules, and by initiating research projects that explore aspects of quality of life assessment, evaluation and interpretation. We review the progress to date and indicate directions of further research and development.

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Author and article information

Contributors

Helle Pappot:

Department of OncologyRigshospitaletCopenhagen University HospitalBlegdamsvej 9Copenhagen, 2100Denmark45 3545 8403helle.pappot@regionh.dk

ORCID: http://orcid.org/0000-0002-3570-5372

Journal

Journal ID (nlm-ta): JMIR Form Res

Journal ID (iso-abbrev): JMIR Form Res

Journal ID (publisher-id): JFR

Title: JMIR Formative Research

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Electronic): 2561-326X

Publication date Collection: Jul-Dec 2018

Publication date (Electronic): 01 November 2018

Volume: 2

Issue: 2

Electronic Location Identifier: e23

Affiliations

[1 ] Department of Oncology Rigshospitalet Copenhagen University Hospital Copenhagen Denmark

[2 ] University of Kansas School of Medicine Kansas City, KS United States

[3 ] Department of Hematology Rigshospitalet Copenhagen University Hospital Copenhagen Denmark

[4 ] Department of Pediatric Hematology and Oncology Department of Pediatric and Adolescent Medicine Rigshospitalet, Copenhagen University Hospital Copenhagen Denmark

[5 ] Center of Adolescent Medicine Department of Pediatric and Adolescent Medicine Rigshospitalet, Copenhagen University Hospital Copenhagen Denmark

[6 ] Daman Copenhagen Denmark

Author notes

Corresponding Author: Helle Pappot helle.pappot@ 123456regionh.dk

Author information

Abbey Elsbernd http://orcid.org/0000-0002-2482-3015

Maiken Hjerming http://orcid.org/0000-0001-9210-8753

Camilla Visler http://orcid.org/0000-0001-5672-1323

Lisa Lyngsie Hjalgrim http://orcid.org/0000-0001-5186-3365

Carsten Utoft Niemann http://orcid.org/0000-0001-9880-5242

Kirsten Arntz Boisen http://orcid.org/0000-0002-3374-6621

Jens Jakobsen http://orcid.org/0000-0003-3597-4027

Helle Pappot http://orcid.org/0000-0002-3570-5372

Article

Publisher ID: v2i2e23

DOI: 10.2196/formative.9842

PMC ID: 6334689

PubMed ID: 30684439

SO-VID: 888b9ce7-55b7-4444-bd02-79b7a2e3664e

Copyright © ©Abbey Elsbernd, Maiken Hjerming, Camilla Visler, Lisa Lyngsie Hjalgrim, Carsten Utoft Niemann, Kirsten Arntz Boisen, Jens Jakobsen, Helle Pappot. Originally published in JMIR Formative Research (http://formative.jmir.org), 01.11.2018.

License:

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 Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on http://formative.jmir.org.as well as this copyright and license information must be included.

History

Date received : 15 January 2018

Date revision requested : 11 July 2018

Date revision received : 18 July 2018

Date accepted : 7 August 2018

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