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      Availability of researcher-led eHealth tools for pain assessment and management: barriers, facilitators, costs, and design

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          Introduction: Numerous eHealth tools for pain assessment and management have been developed and evaluated with promising results regarding psychometric properties, efficacy, and effectiveness. Although considerable resources are spent on developing and evaluating these tools with the aim of increasing access to care, current evidence suggests they are not made available to end users, reducing their impact and creating potential research waste. Methods: This study consisted of 2 components: (1) a systematic review of eHealth tools for pediatric pain assessment and/or management published in the past 10 years, and (2) an online survey, completed by the authors of identified tools, of tool availability, perceived barriers or facilitators to availability, grant funding used, and a validated measure of user-centeredness of the design process (UCD-11). Results: Ninety articles (0.86% of citations screened) describing 53 tools met inclusion criteria. Twenty-six survey responses were completed (49.06%), 13 of which (50.00%) described available tools. Commonly endorsed facilitators of tool availability included researchers' beliefs in tool benefits to the target population and research community; barriers included lack of infrastructure and time. The average cost of each unavailable tool was $314,425.31 USD ($3,144,253.06 USD total, n = 10). Authors of available tools were more likely to have followed user-centered design principles and reported higher total funding. Conclusion: Systemic changes to academic and funding structures could better support eHealth tool availability and may reduce potential for research waste. User-centered design and implementation science methods could improve the availability of eHealth tools and should be further explored in future studies.

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          Internet-Delivered Health Interventions That Work: Systematic Review of Meta-Analyses and Evaluation of Website Availability

          Background Due to easy access and low cost, Internet-delivered therapies offer an attractive alternative to improving health. Although numerous websites contain health-related information, finding evidence-based programs (as demonstrated through randomized controlled trials, RCTs) can be challenging. We sought to bridge the divide between the knowledge gained from RCTs and communication of the results by conducting a global systematic review and analyzing the availability of evidence-based Internet health programs. Objectives The study aimed to (1) discover the range of health-related topics that are addressed through Internet-delivered interventions, (2) generate a list of current websites used in the trials which demonstrate a health benefit, and (3) identify gaps in the research that may have hindered dissemination. Our focus was on Internet-delivered self-guided health interventions that did not require real-time clinical support. Methods A systematic review of meta-analyses was conducted using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (PROSPERO Registration Number CRD42016041258). MEDLINE via Ovid, PsycINFO, Embase, Cochrane Database of Systematic Reviews, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) were searched. Inclusion criteria included (1) meta-analyses of RCTs, (2) at least one Internet-delivered intervention that measured a health-related outcome, and (3) use of at least one self-guided intervention. We excluded group-based therapies. There were no language restrictions. Results Of the 363 records identified through the search, 71 meta-analyses met inclusion criteria. Within the 71 meta-analyses, there were 1733 studies that contained 268 unique RCTs which tested self-help interventions. On review of the 268 studies, 21.3% (57/268) had functional websites. These included evidence-based Web programs on substance abuse (alcohol, tobacco, cannabis), mental health (depression, anxiety, post-traumatic stress disorder [PTSD], phobias, panic disorders, obsessive compulsive disorder [OCD]), and on diet and physical activity. There were also evidence-based programs on insomnia, chronic pain, cardiovascular risk, and childhood health problems. These programs tended to be intensive, requiring weeks to months of engagement by the user, often including interaction, personalized and normative feedback, and self-monitoring. English was the most common language, although some were available in Spanish, French, Portuguese, Dutch, German, Norwegian, Finnish, Swedish, and Mandarin. There were several interventions with numbers needed to treat of <5; these included painACTION, Mental Health Online for panic disorders, Deprexis, Triple P Online (TPOL), and U Can POOP Too. Hyperlinks of the sites have been listed. Conclusions A wide range of evidence-based Internet programs are currently available for health-related behaviors, as well as disease prevention and treatment. However, the majority of Internet-delivered health interventions found to be efficacious in RCTs do not have websites for general use. Increased efforts to provide mechanisms to host “interventions that work” on the Web and to assist the public in locating these sites are necessary.
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            PROMIS Pediatric Pain Interference Scale: an item response theory analysis of the pediatric pain item bank.

            An aim of the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS) initiative is to develop item banks and computerized adaptive tests (CAT) that are applicable across a wide variety of chronic disorders. The PROMIS Pediatric Cooperative Group has concentrated on the development of pediatric self-report item banks for ages 8 through 17 years. The objective of the present study is to describe the Item Response Theory (IRT) analysis of the NIH PROMIS pediatric pain item bank and the measurement properties of the new unidimensional PROMIS Pediatric Pain Interference Scale. Test forms containing pediatric pain items were completed by a total of 3048 respondents. IRT analyses regarding scale dimensionality, item local dependence, and differential item functioning were conducted. A pain item pool was developed to yield scores on a T-score scale with a mean of 50 and standard deviation of 10. The recommended 8-item unidimensional short form for the PROMIS Pediatric Pain Interference Scale contains the item set which provides the maximum test information at the mean (50) on the T-score metric. A simulated CAT was computed that provides the most information at 5 possible score locations (30, 40, 50, 60, and 70 on the T-score metric). The present study provides initial calibrations of the NIH PROMIS pediatric pain item bank and the creation of the PROMIS Pediatric Pain Interference Scale. It is anticipated that this new scale will have application in pediatric chronic and recurrent pain. Copyright © 2010 American Pain Society. Published by Elsevier Inc. All rights reserved.
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              Development and Testing of a Multidimensional iPhone Pain Assessment Application for Adolescents with Cancer

              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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                Author and article information

                Journal
                Pain Rep
                Pain Rep
                PAIREP
                Painreports
                Pain Reports
                Wolters Kluwer (Philadelphia, PA )
                2471-2531
                September 2018
                11 September 2018
                : 3
                : Suppl 1 , Innovations in Pediatric Pain Research and Care: Special Issue
                : e686
                Affiliations
                [a ]Department of Psychology and Neuroscience, Dalhousie University, Halifax, Canada
                [b ]Centre for Pediatric Pain Research, IWK Health Centre, Halifax, Canada
                [c ]Department of Pediatrics, Dalhousie University, Halifax, Canada
                [d ]Department of Family and Emergency Medicine and Office of Education and Professional Development, Faculty of Medicine, Laval University, Québec City, Canada
                [e ]Centre de recherche sur les soins et les services de première ligne de l'Université Laval, Québec City, Canada
                [f ]CHU de Québec, Québec City, Canada
                [g ]Ottawa Hospital Research Institute, Ottawa, Canada
                [h ]Child Health Evaluative Sciences Research Institute, The Hospital for Sick Children, Toronto, Canada
                [i ]Department of Psychiatry and Dalla Lana School of Public Health, University of Toronto, Toronto, Canada
                [j ]Department of Psychiatry, Dalhousie University, Halifax, Canada
                [k ]Colchester East Hands ADHD Clinic, Colchester East Hants Health Authority, Truro, Canada
                [l ]Industry Liaison and Innovation, Dalhousie University, Halifax, Canada
                [m ]Chronic Pain Program, The Hospital for Sick Children, Toronto, Canada
                [n ]Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada
                [o ]Patient Advocate and Partner, Bird Communications, Vancouver, Canada
                [p ]Faculty of Computer Science, Dalhousie University, Halifax, Canada
                [q ]Patient Partner, Squamish, Canada
                Author notes
                [* ]Corresponding author. Address: Centre for Pediatric Pain Research, IWK Health Centre, K8536, 8th Floor, Children's Site, 5850/5980 University Ave, Halifax, NS B3K 6R8, Canada. Tel.: (902) 470-6906; fax: (902) 470-7118. E-mail address: christine.chambers@ 123456dal.ca (C.T. Chambers).
                Article
                PAINREPORTS-D-18-0026 00010
                10.1097/PR9.0000000000000686
                6172815
                30324177
                9616ec62-53d3-4d17-9af2-6e0d2b0d23c2
                Copyright © 2018 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of The International Association for the Study of Pain.

                This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.

                History
                : 26 March 2018
                : 07 August 2018
                Categories
                09
                INNOVATIONS IN Pediatric Pain Research and Care
                Research Paper
                Custom metadata
                TRUE
                T

                ehealth,pediatric pain,research waste,availability,user-centered design

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