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Journal Description

JMIR Cancer (JC) is a Pubmed- and ESCI-indexed, peer-reviewed journal with a focus on education, innovation and technology in cancer care, cancer survivorship and cancer research, as well as in participatory and patient-centred approaches. A sister journal of the Journal of Medical Internet Research (JMIR), a leading eHealth journal (Impact Factor 2017: 4.671), the scope of JC is broader and includes non-Internet approaches to improve cancer care and cancer research.

We invite submission of original research, viewpoints, reviews, tutorials, case studies, and non-conventional articles (e.g. open patient education material and software resources that are not yet evaluated but free for others to use/implement). 

In our "Patients' Corner", we invite patients and survivors to submit short essays and viewpoints on all aspects of cancer, but in particular suggestions on how to improve the health care system, and suggestions for new technologies, applications and approaches (no article processing fees).

JC is open access and all articles are published under a Creative Commons Attribution license. JC has been accepted for indexing in PubMed Central and Pubmed and Emerging Sources Citation Index (Clarivate).

 

Recent Articles:

  • Source: Sarah Pflug / Burst; Copyright: Sarah Pflug; URL: https://burst.shopify.com/photos/female-taking-notes-and-browsing-laptop?q=doctor+laptop; License: Licensed by JMIR.

    Oncofertility Decision Support Resources for Women of Reproductive Age: Systematic Review

    Abstract:

    Background: Cancer treatments have the potential to cause infertility among women of reproductive age. Many cancer patients do not receive sufficient oncofertility information or referrals to reproductive specialists prior to starting cancer treatment. While health care providers cite lack of awareness on the available oncofertility resources, the majority of cancer patients use the internet as a resource to find additional information to supplement discussions with their providers. Objective: Our aim was to identify and characterize Web-based oncofertility decision aids and health education materials accessible for women of reproductive age with a diagnosis of any cancer. Methods: We searched five databases and the gray literature for the years 1994-2018. The developer and content information for identified resources was extracted. Each resource underwent a quality assessment. Results: We identified 31 open access resources including 4 decision aids and 27 health educational materials. The most common fertility preservation options listed in the resources included embryo (31/31, 100%), egg (31, 100%), and ovarian tissue freezing (30, 97%). Notably, approximately one-third (11, 35%) contained references and 5 (16%) had a reading level of grade 8 or below. Resources were of varying quality; two decision aids from Australia and the Netherlands, two booklets from Australia and the United Kingdom, and three websites from Canada and the United States rated as the highest quality. Conclusions: This comprehensive review characterizes numerous resources available to support patients and providers with oncofertility information, counseling, and decision making. More focus is required to improve the awareness and the access of existing resources among patients and providers. Providers can address patient information needs by leveraging or adapting existing resources to support clinical discussions and their specific patient population.

  • Source: Tracy le Blanc / Pexels; Copyright: Tracy le Blanc; URL: https://www.pexels.com/photo/apple-applications-apps-cell-phone-607812/; License: Licensed by the authors.

    Potential of Using Twitter to Recruit Cancer Survivors and Their Willingness to Participate in Nutrition Research and Web-Based Interventions: A...

    Abstract:

    Background: Social media is rapidly changing how cancer survivors search for and share health information and can potentially serve as a cost-effective channel to reach cancer survivors and invite them to participate in nutrition intervention programs. Objective: This study aimed to assess the feasibility of using Twitter to recruit cancer survivors for a web-based survey and assess their willingness to complete web-based nutrition surveys, donate biospecimens, and to be contacted about web-based nutrition programs. Methods: We contacted 301 Twitter accounts of cancer organizations, advocates, and survivors to request assistance promoting a web-based survey among cancer survivors. The survey asked respondents whether they would be willing to complete web-based nutrition or lifestyle surveys, donate biospecimens, and be contacted about web-based nutrition programs. Survey promotion rate was assessed by the percentage of Twitter accounts that tweeted the survey link at least once. Survey response was assessed by the number of survey respondents who answered at least 85% (26/30). We compared the characteristics of cancer survivors who responded to this survey with those who participated in the National Health and Nutrition Examination Survey (NHANES) 1999-2010 and evaluated factors associated with willingness to complete web-based surveys, donate biospecimens, and be contacted to participate in web-based nutrition programs among those who responded to the social media survey. Results: Over 10 weeks, 113 Twitter account owners and 165 of their followers promoted the survey, and 444 cancer survivors provided complete responses. Two-thirds of respondents indicated that they would be willing to complete web-based nutrition or lifestyle surveys (297/444, 67.0%) and to be contacted to participate in web-based nutrition interventions (294/444, 66.2%). The percentage of respondents willing to donate biospecimens were 59.3% (263/444) for oral swab, 52.1% (231/444) for urine sample, 37.9% (168/444) for blood sample, and 35.6% (158/444) for stool sample. Compared with a nationally representative sample of 1550 cancer survivors in NHANES, those who responded to the social media survey were younger (53.1 years vs 60.8 years; P<.001), more likely to be female (93.9% [417/444] vs 58.7% [909/1550]; P<.001), non-Hispanic whites (85.4% [379/444] vs 64.0% [992/1550]; P<.001), to have completed college or graduate school (30.1 [133/444] vs 19.9% [308/444]; P<.001), and to be within 5 years of their initial diagnosis (55.2% [244/444] vs 34.1% [528/1550]; P<.001). Survivors younger than 45 years, female, and non-Hispanic whites were more willing to complete web-based nutrition surveys than older (65+ years), male, and racial or ethnic minority survivors. Non-Hispanic whites and breast cancer survivors were more willing to donate biospecimens than those with other race, ethnicity or cancer types. Conclusions: Twitter could be a feasible approach to recruit cancer survivors into nutrition research and web-based interventions with potentially high yields. Specific efforts are needed to recruit survivors who are older, male, racial and ethnic minorities, and from socioeconomically disadvantaged groups when Twitter is used as a recruitment method.

  • Dschang Hospital. Source: Image created by the Authors; Copyright: Roxane Camail; URL: https://cancer.jmir.org/2019/1/e9798; License: Creative Commons Attribution (CC-BY).

    Benefit of Watching a Live Visual Inspection of the Cervix With Acetic Acid and Lugol Iodine on Women’s Anxiety: Randomized Controlled Trial of an...

    Abstract:

    Background: Women undergoing pelvic examination for cervical cancer screening can experience periprocedural anxiety. Objective: The aim of this study was to assess the anxiety level experienced by women undergoing a visual inspection with acetic acid and Lugol iodine (VIA and VILI) examination, with or without watching the procedure on a digital screen. Methods: This prospective randomized study took place in the district of Dschang, Cameroon. A previous cervical cancer screening campaign tested women aged between 30 and 49 years for human papillomavirus (HPV). HPV-positive women were invited for the 12-month follow-up control visit, including a VIA/VILI examination. During that visit, we recruited women to participate in this study. Before the examination, participants were randomized in a 1:1 ratio to a control group (CG) and an intervention group (IG). Women in both groups underwent a pelvic examination and were verbally informed about the steps undertaken during the gynecological examination. The IG could also watch it live on a tablet screen. Women’s anxiety was assessed before and immediately after the examination, using the Spielberger State-Trait Anxiety Inventory (STAI). A paired t test was used to compare the mean STAI score for each question before and after VIA/VILI while a nonpaired, 2-sided t test was used to compare the mean differences of the STAI score between the 2 study groups. Results: A total of 122 women were randomized in the study; 4 of them were excluded as they did not undergo the pelvic examination, did not answer to the second STAI questionnaire because of personal reasons, or the cervix could not be properly visualized. Thus, the final sample size consisted of 118 patients of whom 58 women were assigned to the CG and 60 to the IG. The mean age was 39.1 (SD 5.2) years. Before the examination, the mean (SD) STAI score was 33.6 (SD 10.9) in the CG and 36.4 (SD 11.8) in the IG (P=.17). The STAI score after pelvic examination was significantly reduced for both groups (CG: 29.3 [SD 11.2]; IG: 28.5 [SD 12.0]). Overall, the difference of the STAI scores before and after the pelvic examination was lower in the CG (4.2 [SD 9.0]) than in the IG (7.9 [SD 14.3]), although the difference was not significant (P=.10). However, the women’s emotional state, such as I feel secure and I feel strained, was improved in the IG as compared with the CG (CG: P=.01; IG: P=.007). Conclusions: Watching the VIA/VILI procedure in real time improved the women’s emotional state but did not reduce the periprocedural anxiety measured by the STAI score. Furthermore, larger studies should assess women’s satisfaction with watching their pelvic examination in real time to determine whether this tool could be included in VIA/VILI routine practice. Trial Registration: ClinicalTrials.gov NCT02945111; http://clinicaltrials.gov/ct2/show/NCT02945111

  • Head With Key. Source: Image courtesy of ddpavumba at FreeDigitalPhotos.net; Copyright: ddpavumba; License: Public Domain (CC0).

    Designing and Testing Apps to Support Patients With Cancer: Looking to Behavioral Science to Lead the Way

    Abstract:

    Background: Behavioral science has a long and strong tradition of rigorous experimental and applied methodologies, which have produced several influential and far-reaching theoretical frameworks and have guided countless inquiries of human behavior in various contexts. In cancer care, behavioral scientists have established a firm foundation of research focused on understanding the experience of cancer and using that understanding to design and implement theory- and evidenced-based interventions to help patients cope with the cancer experience. Given the rich behavioral research base in oncology, behavioral scientists are ideally positioned to lead the integration of evidence-based science on behavior and behavior change into the development of smartphone apps supporting patients with cancer. Smartphone apps are being disseminated to patients with cancer with claims of being able to help them negotiate areas of vulnerability in their cancer experience. However, the vast majority of these apps are developed without the rigor and expertise of behavioral scientists. Objective: In this article, we have illustrated the importance of behavioral science leading the development and evaluation of apps to support patients with cancer by providing an illustrative scientific process that our team of behavioral scientists, patient stakeholders, medical oncologists, and software developers used to empirically design and evaluate 2 patient-focused apps: the Discussion of Cost App (DISCO App) and MyPatientPal. Methods: Using a focused literature review and a descriptive roadmap of our team’s process for designing and evaluating patient-focused behavioral apps for patients with cancer, we have demonstrated how behavioral scientists are integral to the development of empirically sound apps to help support patients with cancer. Specifically, we have illustrated the process by which our multidisciplinary team combined the established user-centered design principles and behavioral science theory and scientific rigor to design and evaluate 2 patient-focused apps. Results: On the basis of initial acceptability and feasibility testing among patients and providers, our team has demonstrated how critical behavioral science is for designing and evaluating app-based interventions for patients with cancer. Conclusions: Behavioral science can and should be coupled with user-centered design principles to provide theoretical guidance and the rigor of the scientific method, thereby adding the much-needed and critical evidence for these types of app-based interventions for patients with cancer.

  • Source: The Authors / Placeit; Copyright: JMIR Publications; URL: http://cancer.jmir.org/2019/1/e11406/; License: Creative Commons Attribution (CC-BY).

    Impact of a Mobilized Stress Management Program (Pep-Pal) for Caregivers of Oncology Patients: Mixed-Methods Study

    Abstract:

    Background: Caregivers of patients with advanced diseases are known to have high levels of distress, including depression and anxiety. Recent research has focused on recognizing caregivers in need of psychosocial support to help them manage their distress. Evidenced-based technological interventions have the potential to aid caregivers in managing distress. Objective: The objective of our study was to describe caregiver perceptions of the usability and acceptability, and their suggestions for future adaptations, of a mobilized psychoeducation and skills-based intervention. Methods: This study was a part of a larger trial of a mobilized psychoeducation and skills-based intervention (Psychoeducation and Skills-Based Mobilized Intervention [Pep-Pal]) for caregivers of patients with advanced illness. This substudy used a mixed-methods analysis of quantitative data from all 26 intervention participants and qualitative data from 14 intervention caregivers who completed the Pep-Pal intervention. The qualitative semistructured individual interviews, which we conducted within the first 4 weeks after participants completed the intervention, assessed the acceptability and usability of Pep-Pal. Additionally, the qualitative interviews provided contextual evidence of how the intervention was helpful to interviewees in unanticipated ways. We conducted applied thematic analysis via independent review of transcripts to extract salient themes. Results: Overall, caregivers of patients with advanced cancer deemed Pep-Pal to be acceptable in all Web-based sessions except for Improving Intimacy. Caregivers perceived the program to be of use across the areas they needed and in others that they had not anticipated. Caregiver recommendations of key changes for the program were to include more variety in caregiver actors in sessions, change the title of Improving Intimacy to Improving Relationships, provide an audio-only option in addition to video, and change the format of the mobilized website program to a stand-alone mobile app. Conclusions: The valuable feedback in key areas from individual interviews will be integrated into the final version of Pep-Pal that will be tested in a fully powered randomized clinical trial. Trial Registration: ClinicalTrials.gov NCT03002896; https://clinicaltrials.gov/ct2/show/NCT03002896 (Archived by WebCite at http://www.webcitation.org/76eThwaei)

  • Vik empowers patients with breast cancer. Source: Image created by the Authors; Copyright: Wefight; URL: https://youtu.be/qDUXvCcOEZs; License: Creative Commons Attribution + Noncommercial + NoDerivatives (CC-BY-NC-ND).

    When Chatbots Meet Patients: One-Year Prospective Study of Conversations Between Patients With Breast Cancer and a Chatbot

    Abstract:

    Background: A chatbot is a software that interacts with users by simulating a human conversation through text or voice via smartphones or computers. It could be a solution to follow up with patients during their disease while saving time for health care providers. Objective: The aim of this study was to evaluate one year of conversations between patients with breast cancer and a chatbot. Methods: Wefight Inc designed a chatbot (Vik) to empower patients with breast cancer and their relatives. Vik responds to the fears and concerns of patients with breast cancer using personalized insights through text messages. We conducted a prospective study by analyzing the users’ and patients’ data, their usage duration, their interest in the various educational contents proposed, and their level of interactivity. Patients were women with breast cancer or under remission. Results: A total of 4737 patients were included. Results showed that an average of 132,970 messages exchanged per month was observed between patients and the chatbot, Vik. Thus, we calculated the average medication adherence rate over 4 weeks by using a prescription reminder function, and we showed that the more the patients used the chatbot, the more adherent they were. Patients regularly left positive comments and recommended Vik to their friends. The overall satisfaction was 93.95% (900/958). When asked what Vik meant to them and what Vik brought them, 88.00% (943/958) said that Vik provided them with support and helped them track their treatment effectively. Conclusions: We demonstrated that it is possible to obtain support through a chatbot since Vik improved the medication adherence rate of patients with breast cancer.

  • Source: Freepik; Copyright: Freepik; URL: https://www.freepik.com/free-photo/senior-businessman-looking-woman-working-laptop_3346285.htm; License: Licensed by JMIR.

    Analyzing Empowerment Processes Among Cancer Patients in an Online Community: A Text Mining Approach

    Abstract:

    Background: Peer-to-peer online support groups and the discussion forums in these groups can help patients by providing opportunities for increasing their empowerment. Most previous research on online empowerment and online social support uses qualitative methods or questionnaires to gain insight into the dynamics of online empowerment processes. Objective: The overall goal of this study was to analyze the presence of the empowerment processes in the online peer-to-peer communication of people affected by cancer, using text mining techniques. Use of these relatively new methods enables us to study social processes such as empowerment on a large scale and with unsolicited data. Methods: The sample consisted of 5534 messages in 1708 threads, written by 2071 users of a forum for cancer patients and their relatives. We labeled the posts in our sample with 2 types of labels: labels referring to empowerment processes and labels denoting psychological processes. The latter were identified using the Linguistic Inquiry and Word Count (LIWC) method. Both groups of labels were automatically assigned to posts. Automatic labeling of the empowerment processes was done by text classifiers trained on a manually labeled subsample. For the automatic labeling of the LIWC categories, we used the Dutch version of the LIWC consisting of a total of 66 word categories that are assigned to text based on occurrences of words in the text. After the automatic labeling with both types of labels, we investigated (1) the relationship between empowerment processes and the intensity of online participation, (2) the relationship between empowerment processes and the LIWC categories, and (3) the differences between patients with different types of cancer. Results: The precision of the automatic labeling was 85.6%, which we considered to be sufficient for automatically labeling the complete corpus and doing further analyses on the labeled data. Overall, 62.94% (3482/5532) of the messages contained a narrative, 23.83% (1318/5532) a question, and 27.49% (1521/5532) informational support. Emotional support and references to external sources were less frequent. Users with more posts more often referred to an external source and more often provided informational support and emotional support (Kendall τ>0.2; P<.001) and less often shared narratives (Kendall τ=−0.297; P<.001). A number of LIWC categories are significant predictors for the empowerment processes: words expressing assent (ok and yes) and emotional processes (expressions of feelings) are significant positive predictors for emotional support (P=.002). The differences between patients with different types of cancer are small. Conclusions: Empowerment processes are associated with the intensity of online use. The relationship between linguistic analyses and empowerment processes indicates that empowerment processes can be identified from the occurrences of specific linguistic cues denoting psychological processes.

  • Woman typing on laptop. Source: Pexels; Copyright: rawpixel.com; URL: https://www.pexels.com/photo/photo-of-woman-typing-on-laptop-1451451/; License: Creative Commons Attribution + NoDerivatives (CC-BY-ND).

    A Thematic Analysis of Attitudes Toward Changes to Cervical Screening in Australia

    Abstract:

    Background: In December 2017, the Australian National Cervical Screening Program (NCSP) was changed to encompass a 5-yearly human papillomavirus (HPV) primary test for women aged 25 to 74 years. Public concerns about changes to screening programs has been demonstrated in other countries previously. Objective: The aim of the study was to explore in depth women’s understanding of and concerns about the specific changes to the Australian NCSP implemented in December 2017. Methods: A Web-based petition (Change.org) opposing the changes received over 70,000 signatures and nearly 20,000 comments from February to March 2017. Of 19,633 comments, a random sample of 10% (2000/19,633) were analyzed using content analysis (reported elsewhere). Comments relating directly to the specific changes to the program were further analyzed using qualitative thematic analysis. Results: Around one-third (34.55%; 691/2000) of the total comments were related to concerns about specific changes to the program. The greatest concern was that screening intervals would be too long and that cancer may not be detected in time for successful treatment. Missing cancer in younger women (aged <25 years) was also an important concern, perceiving younger women to remain at significant risk. Notably, concern was rarely expressed about the new test (the HPV test). Conclusions: Gaps in knowledge and understanding about changes to the program and the rationale behind these have caused health concerns among women. Worry about the extended screening interval indicates little understanding of the slow progression of the HPV infection to cervical cancer or the high rates of regression. Identification of these knowledge gaps can inform both deintensification of other cancer screening programs and practitioners, so that they are able to address these concerns with their patients.

  • Source: Max Pixel; Copyright: Max Pixel; URL: https://www.maxpixel.net/Computer-Writing-Typing-Keyboard-2349465; License: Public Domain (CC0).

    Investigation of Radiation Oncologists’ Awareness of Online Reputation Management

    Abstract:

    Background: Online reputation management (ORM) is an emerging practice strategy that emphasizes the systematic and proactive monitoring of online reviews relating to one’s professional reputation. Objective: We developed this survey project to assess whether radiation oncologists are aware of ORM and how it is utilized in their practices. We hypothesized that ORM is largely unknown by most practicing radiation oncologists and that little time is spent actively managing their reputations. Methods: An online survey was submitted to 1222 radiation oncologists using the Qualtrics research platform. Physician emails were gathered from the American Society for Radiation Oncology member directory. A total of 85 physicians initiated the survey, whereas 76 physicians completed more than or equal to 94% (15/16) of the survey questions and were subsequently used in our analyses. The survey consisted of 15 questions querying practice demographics, patient satisfaction determination, ORM understanding, and activities to address ORM and 1 question for physicians to opt-in to a US $50 Amazon gift card raffle. The survey data were summarized using a frequency table, and data were analyzed using the Chi-square test, Fisher exact test, and Spearman correlation coefficients. Results: We calculated a 7% (85/1222) response rate for our survey, with a completion rate of 89% (76/85). A majority of respondents (97%, 74/76) endorsed being somewhat or strongly concerned about patient satisfaction (P<.001). However, 58% (44/76) of respondents reported spending 0 hours per week reviewing or managing their online reputation and 39% (30/76) reported spending less than 1 hour per week (P<.001). A majority of physicians (58%, 44/76) endorsed no familiarity with ORM (P<.001) and 70% (53/76) did not actively manage their online reputation (P<.001). Although 83% (63/76) of respondents strongly or somewhat believed that patients read online reviews (P<.001), 57% (43/76) of respondents did not check their online reviews (P=.25) and 80% (61/76) endorsed never responding to online reviews (P<.001). Moreover, 58% (44/76) of the respondents strongly or somewhat supported the idea of managing their online reputation going forward (P=.001). In addition, 11 out of the 28 pairs of questions asked in our correlation studies reached statistical significance. Degree of concern for patient satisfaction and the notion of managing one’s ORM going forward were the 2 most frequently correlated topics of statistical significance in our analyses. Conclusions: ORM is presently under-recognized in radiation oncology. Although most practitioners are concerned about patient satisfaction, little effort is directed toward the internet on this matter. ORM offers an area of practice improvement for many practicing radiation oncologists.

  • Source: Freepik; Copyright: yanalya; URL: https://www.freepik.com/free-photo/woman-upset-because-bad-news-e-mail-letter_3938041.htm; License: Licensed by JMIR.

    Usability, Acceptability, and Usefulness of an mHealth App for Diagnosing and Monitoring Patients With Breakthrough Cancer Pain

    Abstract:

    Background: Breakthrough pain is a major problem and a source of distress in patients with cancer. We hypothesized that health care professionals may benefit from a real-time mobile app to assist in the diagnosis and monitoring of breakthrough cancer pain (BTcP). Objective: This study aimed to test the usability, acceptability, and usefulness in real-world practice of the mobile App INES·DIO developed for the management of patients with BTcP. Methods: This study consisted of a survey of a multidisciplinary sample of 175 physicians who evaluated the mobile app after testing it with 4 patients with BTcP each (for a total of 700 patients). The digital profile of the physicians, use of the different resources contained in the app, usefulness of the resources, acceptability, usability, potential improvements, intention to use, and additional resources to add were recorded. Results: Of the 175 physicians, 96% (168/175) were working in public hospitals. They had an average of 12 (SD 7) years of experience in BTcP and almost all (174/175, 99.43%) had an active digital profile. The Eastern Cooperative Oncology Group and Karnofsky performance scales, the Visual Analogue Scale, and the Davies algorithm to diagnose BTcP were the most frequently used tools with patients and were assessed as very useful by more than 80% (140/175) of physicians. The majority (157/175, 90%) answered that App INES·DIO was well designed and 94% (165/175) would probably or very probably recommend it to other colleagues. More than two-thirds indicated that the report provided by the app was worth being included in patients’ clinical records. The most valued resource in the app was the recording of the number, duration, and intensity of pain flares each day and baseline pain control to enhance diagnosis of BTcP. Additional patient-oriented cancer pain educational content was suggested for inclusion in future versions of App INES·DIO. Conclusions: Our study showed that App INES·DIO is easy to use and useful for physicians to help diagnose and monitor breakthrough pain in patients with cancer. Participants suggested the implementation of additional educational content about breakthrough pain. They agreed on the importance of adding new clinical guidelines/protocols for the management of BTcP, improving their communication skills with patients, and introducing an evidence-based video platform that gathers new educational material on BTcP.

  • Source: Image created by Authors; Copyright: The Authors; URL: http://cancer.jmir.org/2019/1/e10883/; License: Creative Commons Attribution (CC-BY).

    Exploring the Experiences of Cancer Patients With Chemotherapy-Induced Ototoxicity: Qualitative Study Using Online Health Care Forums

    Abstract:

    Background: Many cancer patients and survivors experience permanent and life-debilitating effects, such as ototoxicity, from treatment. Ototoxicity manifests as high-frequency hearing loss and tinnitus, which can have a detrimental effect on the quality of life (QoL) of those affected. Currently, there is little information and support offered to these patients who experience ototoxicity, potentially leading to many being undiagnosed and untreated. Objective: The aim of this study was to explore the extent of ototoxic side effects, such as hearing loss and tinnitus, and their impact on cancer patients following chemotherapy treatment. Secondary objectives included detecting the time periods of onset and duration of the ototoxicity and identifying what support was available to this population. Methods: Posts from publicly available online forums were thematically analyzed using the guidelines by Braun and Clarke. A coding manual was iteratively developed to create a framework for the analysis of the ototoxicity experience among the cancer population. Results: A total of 9 relevant online forums were identified, consisting of 86 threads and 570 posts from 377 members. Following the bottom-up thematic analysis, 6 major themes were identified: nature of ototoxicity, time of experienced ototoxicity, information on ototoxicity, quality of life, therapies, and online social support. Conclusions: There was a significant number of reports expressing concerns about the lack of information on the risk of ototoxicity. More support for those suffering is needed; for example, improved interdepartmental communication between oncology and audiology services could optimize patient care. Patients should also be encouraged to communicate with their health care professionals about their ototoxicity and relay how their QoL is impacted by ototoxicity when accessing support. Tinnitus was the most common concern and was associated with distress. Hearing loss was less common; however, it was associated with fear and employment issues. Those who reported preexisting conditions were fearful about worsening their condition as their QoL was already impacted.

  • ASyMS. Source: Image created by the Authors; Copyright: The Authors; URL: http://cancer.jmir.org/2019/1/e10813/; License: Creative Commons Attribution (CC-BY).

    Adaptation and Implementation of a Mobile Phone–Based Remote Symptom Monitoring System for People With Cancer in Europe

    Abstract:

    Background: There has been an international shift in health care, which has seen an increasing focus and development of technological and personalized at-home interventions that aim to improve health outcomes and patient-clinician communication. However, there is a notable lack of empirical evidence describing the preparatory steps of adapting and implementing technology of this kind across multiple countries and clinical settings. Objective: This study aimed to describe the steps undertaken in the preparation of a multinational, multicenter randomized controlled trial (RCT) to test a mobile phone–based remote symptom monitoring system, that is, Advanced Symptom Management System (ASyMS), designed to enhance management of chemotherapy toxicities among people with cancer receiving adjuvant chemotherapy versus standard cancer center care. Methods: There were 13 cancer centers across 5 European countries (Austria, Greece, Ireland, Norway, and the United Kingdom). Multiple steps were undertaken, including a scoping review of empirical literature and clinical guidelines, translation and linguistic validation of study materials, development of standardized international care procedures, and the integration and evaluation of the technology within each cancer center. Results: The ASyMS was successfully implemented and deployed in clinical practices across 5 European countries. The rigorous and simultaneous steps undertaken by the research team highlighted the strengths of the system in clinical practice, as well as the clinical and technical changes required to meet the diverse needs of its intended users within each country, before the commencement of the RCT. Conclusions: Adapting and implementing this multinational, multicenter system required close attention to diverse considerations and unique challenges primarily related to communication and clinical and technical issues. Success was dependent on collaborative and transparent communication among academics, the technology industry, translation partners, patients, and clinicians as well as a simultaneous and rigorous methodological approach within the 5 relevant countries.

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