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      Electronic Systems for Patients to Report and Manage Side Effects of Cancer Treatment: Systematic Review

      review-article
      , BSc, MSc, PhD 1 , , , BSc, PhD 1 , , BSc, PhD 2 , , BA, D Phil 2 , , RGN, RSCN, BHSc 1 , , MBBS, MSc 3 , , BMBS, PhD 1
      (Reviewer), (Reviewer), (Reviewer), (Reviewer)
      Journal of Medical Internet Research
      JMIR Publications
      oncology, chemotherapy, patient reported outcomes, patient centered, medical informatics

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          Abstract

          Background

          There has been a dramatic increase in the development of electronic systems to support cancer patients to report and manage side effects of treatment from home. Systems vary in the features they offer to patients, which may affect how patients engage with them and how they improve patient-centered outcomes.

          Objective

          This review aimed to (1) describe the features and functions of existing electronic symptom reporting systems (eg, symptom monitoring, tailored self-management advice), and (2) explore which features may be associated with patient engagement and patient-centered outcomes.

          Methods

          The review was registered with the International Prospective Register of Systematic Reviews (PROSPERO) and followed guidelines from the Centre for Reviews and Dissemination (University of York, United Kingdom). Primary searches were undertaken of MEDLINE, Embase, PsycInfo, Web of Science, Cochrane Central Register of Controlled Trials, and the Health Technology Assessment databases. Secondary searches were undertaken by screening reference lists and citations. Two researchers applied broad inclusion criteria to identify and select relevant records. Data were extracted and summarized using Microsoft Excel. In order to meet the aims, the study selection, data extraction, and data synthesis comprised two stages: (1) identifying and characterizing available systems and (2) summarizing data on patient engagement and patient-centered outcomes.

          Results

          We identified 77 publications relating to 41 distinct systems. In Stage 1, all publications were included (N=77). The features identified that supported clinicians and care were facility for health professionals to remotely access and monitor patient-reported data (24/41, 58%) and function to send alerts to health professionals for severe symptoms (17/41, 41%). Features that supported patients were facility for patients to monitor/review their symptom reports over time (eg, graphs) (19/41, 46%), general patient information about cancer treatment and side effects (17/41, 41%), tailored automated patient advice on symptom management (12/41, 29%), feature for patients to communicate with the health care team (6/41, 15%), and a forum for patients to communicate with one another (4/41, 10%). In Stage 2, only publications that included some data on patient engagement or patient-centered outcomes were included (N=29). A lack of consistency between studies in how engagement was defined, measured, or reported, and a wide range of methods chosen to evaluate systems meant that it was not possible to compare across studies or make conclusions on relationships with system features.

          Conclusions

          Electronic systems have the potential to help patients manage side effects of cancer treatment, with some evidence to suggest a positive effect on patient-centered outcomes. However, comparison across studies is difficult due to the wide range of assessment tools used. There is a need to develop guidelines for assessing and reporting engagement with systems, and a set of core outcomes for evaluation. We hope that this review will contribute to the field by introducing a taxonomy for characterizing system features.

          Trial Registration

          PROSPERO CRD42016035915; www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42016035915

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          Most cited references98

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          Persuasive System Design Does Matter: A Systematic Review of Adherence to Web-Based Interventions

          Background Although web-based interventions for promoting health and health-related behavior can be effective, poor adherence is a common issue that needs to be addressed. Technology as a means to communicate the content in web-based interventions has been neglected in research. Indeed, technology is often seen as a black-box, a mere tool that has no effect or value and serves only as a vehicle to deliver intervention content. In this paper we examine technology from a holistic perspective. We see it as a vital and inseparable aspect of web-based interventions to help explain and understand adherence. Objective This study aims to review the literature on web-based health interventions to investigate whether intervention characteristics and persuasive design affect adherence to a web-based intervention. Methods We conducted a systematic review of studies into web-based health interventions. Per intervention, intervention characteristics, persuasive technology elements and adherence were coded. We performed a multiple regression analysis to investigate whether these variables could predict adherence. Results We included 101 articles on 83 interventions. The typical web-based intervention is meant to be used once a week, is modular in set-up, is updated once a week, lasts for 10 weeks, includes interaction with the system and a counselor and peers on the web, includes some persuasive technology elements, and about 50% of the participants adhere to the intervention. Regarding persuasive technology, we see that primary task support elements are most commonly employed (mean 2.9 out of a possible 7.0). Dialogue support and social support are less commonly employed (mean 1.5 and 1.2 out of a possible 7.0, respectively). When comparing the interventions of the different health care areas, we find significant differences in intended usage (p = .004), setup (p < .001), updates (p < .001), frequency of interaction with a counselor (p < .001), the system (p = .003) and peers (p = .017), duration (F = 6.068, p = .004), adherence (F = 4.833, p = .010) and the number of primary task support elements (F = 5.631, p = .005). Our final regression model explained 55% of the variance in adherence. In this model, a RCT study as opposed to an observational study, increased interaction with a counselor, more frequent intended usage, more frequent updates and more extensive employment of dialogue support significantly predicted better adherence. Conclusions Using intervention characteristics and persuasive technology elements, a substantial amount of variance in adherence can be explained. Although there are differences between health care areas on intervention characteristics, health care area per se does not predict adherence. Rather, the differences in technology and interaction predict adherence. The results of this study can be used to make an informed decision about how to design a web-based intervention to which patients are more likely to adhere.
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            The nuts and bolts of PROSPERO: an international prospective register of systematic reviews

            Background Following publication of the PRISMA statement, the UK Centre for Reviews and Dissemination (CRD) at the University of York in England began to develop an international prospective register of systematic reviews with health-related outcomes. The objectives were to reduce unplanned duplication of reviews and provide transparency in the review process, with the aim of minimizing reporting bias. Methods An international advisory group was formed and a consultation undertaken to establish the key items necessary for inclusion in the register and to gather views on various aspects of functionality. This article describes the development of the register, now called PROSPERO, and the process of registration. Results PROSPERO offers free registration and free public access to a unique prospective register of systematic reviews across all areas of health from all around the world. The dedicated web-based interface is electronically searchable and available to all prospective registrants. At the moment, inclusion in PROSPERO is restricted to systematic reviews of the effects of interventions and strategies to prevent, diagnose, treat, and monitor health conditions, for which there is a health-related outcome. Ideally, registration should take place before the researchers have started formal screening against inclusion criteria but reviews are eligible as long as they have not progressed beyond the point of completing data extraction. The required dataset captures the key attributes of review design as well as the administrative details necessary for registration. Submitted registration forms are checked against the scope for inclusion in PROSPERO and for clarity of content before being made publicly available on the register, rejected, or returned to the applicant for clarification. The public records include an audit trail of major changes to planned methods, details of when the review has been completed, and links to resulting publications when provided by the authors. Conclusions There has been international support and an enthusiastic response to the principle of prospective registration of protocols for systematic reviews and to the development of PROSPERO. In October 2011, PROSPERO contained 200 records of systematic reviews being undertaken in 26 countries around the world on a diverse range of interventions.
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              Do increases in patient activation result in improved self-management behaviors?

              The purpose of this study is to determine whether patient activation is a changing or changeable characteristic and to assess whether changes in activation also are accompanied by changes in health behavior. To obtain variability in activation and self-management behavior, a controlled trial with chronic disease patients randomized into either intervention or control conditions was employed. In addition, changes in activation that occurred in the total sample were also examined for the study period. Using Mplus growth models, activation latent growth classes were identified and used in the analysis to predict changes in health behaviors and health outcomes. Survey data from the 479 participants were collected at baseline, 6 weeks, and 6 months. Positive change in activation is related to positive change in a variety of self-management behaviors. This is true even when the behavior in question is not being performed at baseline. When the behavior is already being performed at baseline, an increase in activation is related to maintaining a relatively high level of the behavior over time. The impact of the intervention, however, was less clear, as the increase in activation in the intervention group was matched by nearly equal increases in the control group. Results suggest that if activation is increased, a variety of improved behaviors will follow. The question still remains, however, as to what interventions will improve activation.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                1439-4456
                1438-8871
                January 2019
                24 January 2019
                : 21
                : 1
                Affiliations
                [1 ] Section of Patient Centred Outcomes Research Leeds Institute of Cancer and Pathology University of Leeds Leeds United Kingdom
                [2 ] School of Psychology University of Leeds Leeds United Kingdom
                [3 ] Leeds Teaching Hospitals NHS Trust Leeds United Kingdom
                Author notes
                Corresponding Author: Lorraine Warrington l.warrington@ 123456leeds.ac.uk
                Article
                v21i1e10875
                10.2196/10875
                6365878
                30679145
                04772c56-09c6-4086-8ab3-6846997095f9
                ©Lorraine Warrington, Kate Absolom, Mark Conner, Ian Kellar, Beverly Clayton, Michael Ayres, Galina Velikova. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 24.01.2019.

                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 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.

                Categories
                Review
                Review

                Medicine
                oncology,chemotherapy,patient reported outcomes,patient centered,medical informatics
                Medicine
                oncology, chemotherapy, patient reported outcomes, patient centered, medical informatics

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