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      Development and Testing of a Multidimensional iPhone Pain Assessment Application for Adolescents with Cancer

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          Abstract

          Background

          Pain is one of the most common and distressing symptoms reported by adolescents with cancer. Despite advancements in pain assessment and management research, pain due to cancer and/or its treatments continues to be poorly managed. Our research group has developed a native iPhone application (app) called Pain Squad to tackle the problem of poorly managed pain in the adolescent with cancer group. The app functions as an electronic pain diary and is unique in its ability to collect data on pain intensity, duration, location, and the impact pain has on an adolescent’s life (ie, relationships, school work, sleep, mood). It also evaluates medications and other physical and psychological pain management strategies used. Users are prompted twice daily at configurable times to complete 20 questions characterizing their pain and the app transmits results to a database for aggregate reporting through a Web interface. Each diary entry represents a pain case filed by an adolescent with cancer and a reward system (ie, moving up through law-enforcement team ranks, built-in videotaped acknowledgements from fictitious officers) encourages consistent use of the diary.

          Objective

          Our objective was to design, develop, and test the usability, feasibility, compliance, and satisfaction of a game-based smartphone pain assessment tool for adolescents with cancer.

          Methods

          We used both low- and high-fidelity qualitative usability testing with qualitative semi-structured, audio-taped interviews and iterative cycles to design and refine the iPhone based Pain Squad app. Qualitative thematic analysis of interviews using constant comparative methodology captured emergent themes related to app usability. Content validity was assessed using question importance-rating surveys completed by participants. Compliance and satisfaction data were collected following a 2-week feasibility trial where users were alarmed to record their pain twice daily on the app.

          Results

          Thematic analysis of usability interviews showed the app to be appealing overall to adolescents. Analyses of both low- and high-fidelity testing resulted in minor revisions to the app to refine the theme and improve its usability. Adolescents resoundingly endorsed the game-based nature of the app and its virtual reward system. The importance of app pain diary questions was established by content validity analysis. Compliance with the app, assessed during feasibility testing, was high (mean 81%, SD 22%) and adolescents from this phase of the study found the app likeable, easy to use, and not bothersome to complete.

          Conclusions

          A multifaceted usability approach demonstrated how the Pain Squad app could be made more appealing to children and adolescents with cancer. The game-based nature and built-in reward system of the app was appealing to adolescents and may have resulted in the high compliance rates and satisfaction ratings observed during clinical feasibility testing.

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          Most cited references36

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          Systematic review of the psychometric properties, interpretability and feasibility of self-report pain intensity measures for use in clinical trials in children and adolescents.

          The aim of this study was to systematically review the psychometric properties, interpretability and feasibility of self-report pain intensity measures for children and adolescents for use in clinical trials evaluating pain treatments. Databases were searched for self-report measures of single-item ratings of pain intensity for children aged 3-18 years. A total of 34 single-item self-report measures were found. The measures' psychometric properties, interpretability and feasibility, were evaluated independently by two investigators according to a set of psychometric criteria. Six single-item measures met the a priori criteria and were included in the final analysis. While these six scales were determined as psychometrically sound and show evidence of responsivity, they had varying degrees of interpretability and feasibility. No single scale was found to be optimal for use with all types of pain or across the developmental age span. Specific recommendations regarding the most psychometrically sound and feasible measures based on age/developmental level and type of pain are discussed. Future research is needed to strengthen the measurement of pain in clinical trials with children.
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            Patient compliance with paper and electronic diaries.

            Paper diaries are commonly used in health care and clinical research to assess patient experiences. There is concern that patients do not comply with diary protocols, possibly invalidating the benefit of diary data. Compliance with paper diaries was examined with a paper diary and with an electronic diary that incorporated compliance-enhancing features. Participants were chronic pain patients and they were assigned to use either a paper diary instrumented to track diary use or an electronic diary that time-stamped entries. Participants were instructed to make three pain entries per day at predetermined times for 21 consecutive days. Primary outcome measures were reported vs actual compliance with paper diaries and actual compliance with paper diaries (defined by comparing the written times and the electronically-recorded times of diary use). Actual compliance was recorded by the electronic diary. Participants submitted diary cards corresponding to 90% of assigned times (+/-15 min). However, electronic records indicated that actual compliance was only 11%, indicating a high level of faked compliance. On 32% of all study days the paper diary binder was not opened, yet reported compliance for these days exceeded 90%. For the electronic diary, the actual compliance rate was 94%. In summary, participants with chronic pain enrolled in a study for research were not compliant with paper diaries but were compliant with an electronic diary with enhanced compliance features. The findings call into question the use of paper diaries and suggest that electronic diaries with compliance-enhancing features are a more effective way of collecting diary information.
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              How Adolescents Use Technology for Health Information: Implications for Health Professionals from Focus Group Studies

              Background Adolescents present many challenges in providing them effective preventive services and health care. Yet, they are typically the early adopters of new technology (eg, the Internet). This creates important opportunities for engaging youths via eHealth. Objective To describe how adolescents use technology for their health-information needs, identify the challenges they face, and highlight some emerging roles of health professionals regarding eHealth services for adolescents. Methods Using an inductive qualitative research design, 27 focus groups were conducted in Ontario, Canada. The 210 participants (55% female, 45% male; median age 16 years) were selected to reflect diversity in age, sex, geographic location, cultural identity, and risk. An 8-person team analyzed and coded the data according to major themes. Results Study participants most-frequently sought or distributed information related to school (89%), interacting with friends (85%), social concerns (85%), specific medical conditions (67%), body image and nutrition (63%), violence and personal safety (59%), and sexual health (56%). Finding personally-relevant, high-quality information was a pivotal challenge that has ramifications on the depth and types of information that adolescents can find to answer their health questions. Privacy in accessing information technology was a second key challenge. Participants reported using technologies that clustered into 4 domains along a continuum from highly-interactive to fixed information sources: (1) personal communication: telephone, cell phone, and pager; (2) social communication: e-mail, instant messaging, chat, and bulletin boards; (3) interactive environments: Web sites, search engines, and computers; and (4) unidirectional sources: television, radio, and print. Three emerging roles for health professionals in eHealth include: (1) providing an interface for adolescents with technology and assisting them in finding pertinent information sources; (2) enhancing connection to youths by extending ways and times when practitioners are available; and (3) fostering critical appraisal skills among youths for evaluating the quality of health information. Conclusions This study helps illuminate adolescent health-information needs, their use of information technologies, and emerging roles for health professionals. The findings can inform the design and more-effective use of eHealth applications for adolescent populations.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                Gunther Eysenbach (JMIR Publications Inc., Toronto, Canada )
                1439-4456
                1438-8871
                March 2013
                08 March 2013
                : 15
                : 3
                : e51
                Affiliations
                [1] 1The Hospital for Sick Children Toronto, ONCanada
                [2] 2University of Toronto Toronto, ONCanada
                [3] 3BC Children's Hospital Vancouver, BCCanada
                [4] 4McMaster University Hamilton, ONCanada
                [5] 5Children's Hospital of Eastern Ontario Ottawa, ONCanada
                [6] 6University of Ottawa Ottawa, ONCanada
                [7] 7Cundari Group Limited Toronto, ONCanada
                Author notes
                Corresponding Author: Jennifer N Stinson jennifer.stinson@ 123456sickkids.ca
                Article
                v15i3e51
                10.2196/jmir.2350
                3636147
                23475457
                22f83ec6-617e-4f7b-a122-dba01ea7df2a
                ©Jennifer N Stinson, Lindsay A Jibb, Cynthia Nguyen, Paul C Nathan, Anne Marie Maloney, L Lee Dupuis, J Ted Gerstle, Benjamin Alman, Sevan Hopyan, Caron Strahlendorf, Carol Portwine, Donna L Johnston, Mike Orr. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 08.03.2013.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                History
                : 13 September 2012
                : 09 November 2012
                : 26 November 2012
                : 13 February 2013
                Categories
                Original Paper

                Medicine
                neoplasms,pain,child,adolescent,youth,cellular phone,game
                Medicine
                neoplasms, pain, child, adolescent, youth, cellular phone, game

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