JMIR Publications

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  Chemotherapy and Side Effects Management

  Mar 14, 2019

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

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  Authors List:

  • Stephanie E Pearson  
  • John Taylor  
  • Derek J Hoare  
  • Poulam Patel  
  • David M Baguley  

  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.

  • JMIR Cancer 2019;5(1):e10883

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  Innovations and Technology in Cancer...

  Mar 14, 2019

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

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  Authors List:

  • Eileen Furlong  
  • Andrew Darley  
  • Patricia Fox  
  • Alison Buick  
  • Grigorios Kotronoulas  
  • Morven Miller  
  • Adrian Flowerday  
  • Christine Miaskowski  
  • Elisabeth Patiraki  
  • Stylianos Katsaragakis  
  • Emma Ream  
  • Jo Armes  
  • Alexander Gaiger  
  • Geir Berg  
  • Paul McCrone  
  • Peter Donnan  
  • Lisa McCann  
  • Roma Maguire  

  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.

  • JMIR Cancer 2019;5(1):e10813

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  Mobile Apps for Cancer Care and...

  Jan 31, 2019

  A Smartphone App to Support Carers of People Living With Cancer: A Feasibility and Usability Study

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  Authors List:

  • Natalie Heynsbergh  
  • Leila Heckel  
  • Mari Botti  
  • Patricia M Livingston  

  Abstract:

  Background: Carers experience unique needs while caring for someone with cancer. Interventions that address carers’ needs and well-being have been developed and tested; however, the use of smartphone apps to support adult carers looking after another adult with cancer has not been assessed. Objective: The objective of this study was to test the feasibility, usability, and acceptability of a smartphone app, called the Carer Guide App, for carers of people with colorectal cancer. Methods: We recruited carers of people with colorectal cancer from outpatient day oncology units and provided them with access to the smartphone app for 30 days. Carers had access to video instructions and email contact details for technical support. Carers received 2 email messages per week that directed them to resources available within the app. Carers completed demographic questions at baseline and questions related to feasibility and usability at 30 days post app download. We used recruitment and attrition rates to determine feasibility and relevance of content to carers’ needs as self-reported by carers. We assessed usability through the ease of navigation and design and use of technical support or instructional videos. Acceptability was measured through self-reported usage, usage statistics provided by Google Analytics, and comments for improvement. Results: We recruited 31% (26/85) eligible carers into the trial. Of the 26 carers, the majority were female (19, 73%), on average 57 years of age, were caring for a spouse with cancer (19, 73%), and held a university degree (19, 73%). Regarding feasibility, carers perceived the content of the Carer Guide App as relevant to the information they were seeking. Regarding usability, carers perceived the navigation and design of the app as easy to use. Of the 26 carers, 4 (15%) viewed the downloading and navigation video and 7 (27%) used the contact email address for queries and comments. Acceptability: On average, carers used the smartphone app for 22 minutes (SD 21 minutes) over the 30-day trial. Of 26 participants, 19 completed a follow-up questionnaire. Of 19 carers, 7 (37%) logged on 3 to 4 times during the 30 days and 5 (26%) logged on more than 5 times. The majority (16/19, 84%) of carers stated that they would recommend the app be available for all carers. Comments for improvement included individualized requests for specific content. Conclusions: The Carer Guide App was feasible and usable among carers of people with colorectal cancer. Acceptability can be improved through the inclusion of a variety of information and resources. A randomized controlled trial is required to assess the impact of the Carer Guide App on carers’ health and well-being.

  • JMIR Cancer 2019;5(1):e11779

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  Doctor-Patient Communication on...

  Jan 30, 2019

  Evaluation and Implementation of ListeningTime: A Web-Based Preparatory Communication Tool for Elderly Patients With Cancer and Their Health Care Providers

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  Authors List:

  • Janneke Noordman  
  • Jeanine A Driesenaar  
  • Inge R. van Bruinessen  
  • Johanneke E.A. Portielje  
  • Sandra van Dulmen  

  Abstract:

  Background: Effective patient-provider communication is an important condition to deliver optimal care and it supports patients in coping with their disease. The complex and emotionally loaded setting of oncology care challenges both health care providers (HCPs) and patients in reaching effective communication. ListeningTime is developed for elderly patients with cancer and their oncological HCPs to help them (better) prepare the clinical encounter and overcome communication barriers. ListeningTime is a Web-based preparatory communication tool including modeling videos and has an audio-facility to listen back to recorded encounters. Objective: This study aims to evaluate the usability, perceived usefulness, and actual use of ListeningTime, through the eyes of elderly patients with cancer and their oncological HCPs. If highly rated, the ultimate goal is to make ListeningTime publicly available. Methods: First, members of a panel of elderly cancer survivors and patients (age ≥65 years) were approached to evaluate ListeningTime through a Web-based questionnaire. The usability and perceived usefulness were assessed. Second, ListeningTime was evaluated in real-life practice through a pilot study in 3 Dutch hospitals. In these hospitals, elderly patients with cancer and their oncological HCPs were approached to evaluate ListeningTime through a similar Web-based questionnaire, measuring the perceived usefulness. In addition, we examined log files and user statistics to get insight into how the program was used. Results: A total of 30 cancer survivors or patients from the patient panel, and 17 patients and 8 HCPs from the hospitals, evaluated ListeningTime. Overall, both panel members and hospital patients were positive about the ListeningTime website, audio-facility, and video fragments. Some patients suggested improvements with respect to the actors’ performances in the video fragments and believed that ListeningTime is mainly suitable for non experienced patients. HCPs were also positive about ListeningTime; they valued the video fragments for patients and the audio-facility for patients and themselves. However, providers did not relisten their own recorded encounters. Patients did use the audio-facility to relisten their encounters. Conclusions: ListeningTime was highly rated, both by patients and their oncological HCPs. As a result, the video fragments of ListeningTime are now made publicly available for elderly patients with cancer through the Dutch website “kanker.nl.”

  • JMIR Cancer 2019;5(1):e11556

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  Cancer Epidemiology, Cancer...

  Jan 17, 2019

  Self-Care Behaviors of Ovarian Cancer Patients Before Their Diagnosis: Proof-of-Concept Study

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  Authors List:

  • James M Flanagan  
  • Hanna Skrobanski  
  • Xin Shi  
  • Yasemin Hirst  

  Abstract:

  Background: Longer patient intervals can lead to more late-stage cancer diagnoses and higher mortality rates. Individuals may delay presenting to primary care with red flag symptoms and instead turn to the internet to seek information, purchase over-the-counter medication, and change their diet or exercise habits. With advancements in machine learning, there is the potential to explore this complex relationship between a patient’s symptom appraisal and their first consultation at primary care through linkage of existing datasets (eg, health, commercial, and online). Objective: Here, we aimed to explore feasibility and acceptability of symptom appraisal using commercial- and health-data linkages for cancer symptom surveillance. Methods: A proof-of-concept study was developed to assess the general public’s acceptability of commercial- and health-data linkages for cancer symptom surveillance using a qualitative focus group study. We also investigated self-care behaviors of ovarian cancer patients using high-street retailer data, pre- and postdiagnosis. Results: Using a high-street retailer’s data, 1118 purchases—from April 2013 to July 2017—by 11 ovarian cancer patients and one healthy individual were analyzed. There was a unique presence of purchases for pain and indigestion medication prior to cancer diagnosis, which could signal disease in a larger sample. Qualitative findings suggest that the public are willing to consent to commercial- and health-data linkages as long as their data are safeguarded and users of this data are transparent about their purposes. Conclusions: Cancer symptom surveillance using commercial data is feasible and was found to be acceptable. To test efficacy of cancer surveillance using commercial data, larger studies are needed with links to individual electronic health records.

  • JMIR Cancer 2019;5(1):e10447

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  Cancer Self-Management

  Jan 8, 2019

  Impact of Electronic Self-Assessment and Self-Care Technology on Adherence to Clinician Recommendations and Self-Management Activity for Cancer...

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  Authors List:

  • Robert Knoerl  
  • Fangxin Hong  
  • Traci Blonquist  
  • Donna Berry  

  Abstract:

  Background: Patients undergoing cancer treatment experience symptoms that negatively affect their quality of life and adherence to treatment. The early identification and management of treatment-related symptoms are critical to prevent symptom distress due to unmanaged symptoms. However, the early identification and management of treatment-related symptoms are complex as most cancer treatments are delivered on an outpatient basis where patients are granted less face-to-face time with clinicians. The Electronic Symptom Assessment and Self-Care (ESRA-C) promotes participant self-management of treatment-related symptoms by providing participants with communication coaching and symptom self-report, education, and tracking features. While the ESRA-C intervention has been demonstrated to improve symptom distress significantly, little is known as to how the ESRA-C influenced participants’ self-management practices and adherence to clinician recommendations for symptom/quality of life issues (SQIs). Objective: To compare participant adherence to clinician recommendations and additional self-management strategy use for SQIs between ESRA-C intervention and control (electronic symptom assessment and participant symptom reports alone) group participants. Secondarily, we explored the impact of participant adherence to clinician recommendations and additional self-management strategy use for SQIs on symptom control, symptom management satisfaction, and symptom distress. Lastly, we examined baseline predictors of participant adherence to clinician recommendations and additional self-management strategy use for SQIs. Methods: This study presents an analysis of a randomized controlled trial. Participants beginning a new chemotherapy or radiotherapy regimen were recruited from oncology outpatient centers and were randomized to receive the ESRA-C intervention or control during treatment. Patients were included in this analysis if they remained on study through the duration of treatment and self-reported at least one bothersome SQI three-to-six weeks after beginning treatment. The Symptom Distress Scale-15 and Self-Management of SQIs Questionnaire were completed two weeks later. Based on Self-Management of SQIs Questionnaire ratings, participants were placed into adherence to clinician recommendations (adhered/did not adhere/did not receive recommendations) and additional self-management strategy use (yes/no) categories. Results: Most participants were adherent to clinician recommendations (273/370, 73.8%), while fewer used additional self-management strategies for SQIs (182/370, 49.2%). There were no differences in the frequency of participant adherence to clinician recommendations (chi-square test, P=.99) or self-management strategy use (chi-square test, P=.80) between intervention (n=182) and control treatment groups (n=188). Participants who received clinician recommendations reported the highest treatment satisfaction (n=355, P<.001 by analysis of variance; ANOVA), although lowest distress was reported by participants who did not follow clinician recommendations (n=322, P=.04 by ANOVA) for top 2 SQIs. Women (n=188) reported greater additional self-management strategy use than men (n=182, P=0.03 by chi-square test). Conclusions: ESRA-C intervention use did not improve participants’ adherence to clinician recommendations or additional self-management strategy use for SQIs in comparison to the control. Future research is needed to determine which factors are important in improving patients’ self-management practices and symptom distress following ESRA-C use. Trial Registration: ClinicalTrials.gov NCT00852852; https://clinicaltrials.gov/ct2/show/NCT00852852 (Archived by WebCite at http://www.webcitation.org/73rEhNWkU)

  • JMIR Cancer 2019;5(1):e11395

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  Nutrition, Physical Activity, Healthy...

  Dec 21, 2018

  An Interactive Web Portal for Tracking Oncology Patient Physical Activity and Symptoms: Prospective Cohort Study

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  Authors List:

  • Michael Marthick  
  • Haryana M Dhillon  
  • Jennifer A Alison  
  • Bobby S Cheema  
  • Tim Shaw  

  Abstract:

  Background: Physical activity levels typically decline during cancer treatment and often do not return to prediagnosis or minimum recommended levels. Interventions to promote physical activity are needed. Support through the use of digital health tools may be helpful in this situation. Objective: The goal of the research was to evaluate the feasibility, usability, and acceptability of an interactive Web portal developed to support patients with cancer to increase daily physical activity levels. Methods: A Web portal for supportive cancer care which was developed to act as a patient-clinician information and coaching tool focused on integrating wearable device data and remote symptom reporting. Patients currently receiving or who had completed intensive anticancer therapy were recruited to 3 cohorts. All cohorts were given access to the Web portal and an activity monitor over a 10-week period. Cohort 2 received additional summative messaging, and cohort 3 received personalized coaching messaging. Qualitative semistructured interviews were completed following the intervention. The primary outcome was feasibility of the use of the portal assessed as both the number of log-ins to the portal to record symptoms and the completion of post-program questionnaires. Results: Of the 49 people were recruited, 40 completed the intervention. Engagement increased with more health professional contact and was highest in cohort 3. The intervention was found to be acceptable by participants. Conclusions: The portal was feasible for use by people with a history of cancer. Further research is needed to determine optimal coaching methods.

  • JMIR Cancer 2018;4(2):e11978

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  Mobile Apps for Cancer Care and...

  Dec 21, 2018

  Usability Evaluation of a Mobile Phone–Based System for Remote Monitoring and Management of Chemotherapy-Related Side Effects in Cancer Patients:...

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  Authors List:

  • Saeed Moradian  
  • Monika K. Krzyzanowska  
  • Roma Maguire  
  • Plinio P. Morita  
  • Vishal Kukreti  
  • Jonathan Avery  
  • Geoffrey Liu  
  • Joseph Cafazzo  
  • Doris Howell  

  Abstract:

  Background: As most chemotherapy is administered in the outpatient setting, patients are required to manage related side effects at home without direct support from health professionals. The Advanced Symptom Management System (ASyMS) has been developed to facilitate the remote monitoring and management of chemotherapy-related toxicity in patients with cancer, using patient-reported outcomes questionnaires and a clinician alerting system. Objective: This study aims to evaluate the usability of the ASyMS, a mobile phone–based technology, from the perspective of Canadian patients with cancer receiving chemotherapy to identify existing design, functionality, and usability issues and elicit their views, experiences, and satisfaction with the ASyMS. Methods: We used a mixed-method approach to data collection with user-based testing, a think-aloud technique, semistructured interviews, and short answer questionnaires with a purposive sample of 10 patients with cancer. Participants attended usability testing sessions at the Centre for Global eHealth Innovation, University Health Network, and performed specific tasks on the ASyMS device. The test was videorecorded and each task was timed during the test. After the usability sessions, participants completed a posttest questionnaire and participated in a semistructured qualitative interview. A thematic analysis was used to code and categorize the identified issues into themes that summarized the type and frequency of occurrence. Results: The thematic analysis generated 3 overarching themes as follows: ASyMS user-friendliness; usefulness of ASyMS (content quality and richness); and intention to use. Results from the posttest questionnaire indicated that 80% (8/10) of participants had great motivation to use the ASyMS, 70% (7/10) had positive perceptions of the successful use of the ASyMS, and all (10/10, 100%) had a positive attitude toward using the ASyMS in the future. Most identified design and functionality issues were related to the navigation of the ASyMS device and a desire for a more attractive design with advanced functionality and features. The main general design recommendations were as follows: enhance the readability of the screen; implement advance options (eg, search option); and support better navigation. Conclusions: The ASyMS has shown positive perceptions of patients in usability testing and qualitative interviews. An evaluation of the effects of the ASyMS on symptom outcomes in a clinical trial is needed.

  • JMIR Cancer 2018;4(2):e10932

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  Mobile Apps for Cancer Care and...

  Dec 21, 2018

  The Implementation Effectiveness of a Freely Available Pediatric Cancer Pain Assessment App: A Pilot Implementation Study

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  Authors List:

  • Perri R Tutelman  
  • Christine T Chambers  
  • Jennifer N Stinson  
  • Jennifer A Parker  
  • Melanie Barwick  
  • Holly O Witteman  
  • Lindsay Jibb  
  • Hayley C Stinson  
  • Conrad V Fernandez  
  • Paul C Nathan  
  • Fiona Campbell  
  • Karen Irwin  

  Abstract:

  Background: Pain Squad is an evidence-based, freely available iOS app designed to assess pain in children with cancer. Once research-based technologies such as Pain Squad are validated, it is important to evaluate their performance in natural settings to optimize their real-world clinical use. Objective: The objective of this study was to evaluate the implementation effectiveness of Pain Squad in a natural setting. Methods: Parents of 149 children with cancer (aged 8-18 years) were contacted to invite their child to participate. Participating children downloaded Pain Squad on their own iOS devices from the Apple App Store and reported their pain using the app twice daily for 1 week. Participants then emailed their pain reports from the app to the research team and completed an online survey on their experiences. Key implementation outcomes included acceptability, appropriateness, cost, feasibility, fidelity, penetration, and sustainability. Results: Of the 149 parents contacted, 16 of their children agreed to participate. More than a third (6/16, 37.5%) of participating children returned their pain reports to the research team. Adherence to the pain assessments was 62.1% (mean 8.7/14 assessments). The 6 children who returned reports rated the app as highly feasible to download and use and rated their overall experience as acceptable. They also reported that they would be willing to sustain their Pain Squad use over several weeks and that they would recommend it to other children with cancer, which suggests that it may have potential for penetration. Conclusions: While Pain Squad was well received by the small number of children who completed the study, user uptake, engagement, and adherence were significant barriers to the implementation of Pain Squad in a natural setting. Implementation studies such as this highlight important challenges and opportunities for promoting the use and uptake of evidence-based technologies by the intended end-users.

  • JMIR Cancer 2018;4(2):e10280

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  Innovations and Technology in Cancer...

  Dec 20, 2018

  Web-Based Patient-Reported Outcomes Using the International Consortium for Health Outcome Measurement Dataset in a Major German University Hospital:...

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  Authors List:

  • Maria M Karsten  
  • Dorothee Speiser  
  • Claudia Hartmann  
  • Nele Zeuschner  
  • Kai Lippold  
  • Verena Kiver  
  • Peter Gocke  
  • Valerie Kirchberger  
  • Jens-Uwe Blohmer  

  Abstract:

  Background: Collecting patient-reported outcome (PRO) data systematically enables objective evaluation of treatment and its related outcomes. Using disease-specific questionnaires developed by the International Consortium for Health Outcome Measurement (ICHOM) allows for comparison between physicians, hospitals, and even different countries. Objective: This pilot project aimed to establish a digital system to measure PROs for new patients with breast cancer who attended the Charité Breast Center This approach should serve as a blueprint to further expand the PRO measurement to other disease entities and departments. Methods: In November 2016, we implemented a Web-based system to collect PRO data at Charité Breast Center using the ICHOM dataset. All new patients at the Breast Center were enrolled and answered a predefined set of questions using a tablet computer. Once they started their treatment at Charité, automated emails were sent to the patients at predefined treatment points. Those emails contained a Web-based link through which they could access and answer questionnaires. Results: By now, 541 patients have been enrolled and 2470 questionnaires initiated. Overall, 9.4% (51/541) of the patients were under the age of 40 years, 49.7% (269/541) between 40 and 60 years, 39.6% (214/541) between 60 and 80 years, and 1.3% (7/541) over the age of 80 years. The average return rate of questionnaires was 67.0%. When asked about the preference regarding paper versus Web-based questionnaires, 6.0% (8/134) of the patients between 50 and 60 years, 6.0% (9/150) between 60 and 70 years, and 12.7% (9/71) over the age of 70 years preferred paper versions. Conclusions: Measuring PRO in patients with breast cancer in an automated electronic version is possible across all age ranges while simultaneously achieving a high return rate.

  • JMIR Cancer 2018;4(2):e11373

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  Cancer and Prevention in the Media

  Dec 18, 2018

  How to Optimize Health Messages About Cancer on Facebook: Mixed-Methods Study

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  Authors List:

  • Priscila Biancovilli  
  • Claudia Jurberg  

  Abstract:

  Background: Incidence rate of cancer is increasing worldwide, with longer life expectancy being one of the main causes. Yet, between 30% and 50% of cancer cases are preventable, and early detection contributes to a better prognosis. This makes health communication strategies essential. Facebook, the world’s most used social networking site in 2017 and 2018, can be a useful tool for disseminating powerful messages on health promotion, prevention, and early detection. Objective: We aimed to (1) offer ways of optimizing health messages about cancer on Facebook, focusing on topics, such as risk factors, prevention, treatment, early diagnosis, and cure, and (2) investigate which aspects of these messages generate greater engagement. Methods: To verify what generates greater engagement in topics related to cancer on Facebook, we analyzed 16 Brazilian pages with the main theme of cancer. We performed a manual analysis of texts, content, and engagement rates. Finally, we developed a software program to operationalize the analysis of Facebook posts. The tool we devised aims to automate the analysis of any Facebook page with cancer as the main theme. Results: We analyzed 712 posts over a 1-month period. We divided the posts into the following 8 categories: “Testimonies or real-life stories,” “Solidarity,” “Anniversaries,” “Science and health,” “Events,” “Institutional,” “Risk factors,” and “Beauty.” The pages were also organized into groups according to the type of profile to which they belonged (ie, hospitals or foundations, informative, nongovernmental organizations, and personal pages).The results showed that the categories generating greater engagement in Brazil were not those with the highest percentage of cancer-related content. For instance, in the “Informative” group the “Testimonies or real-life stories” category generated an engagement of 79.5%. However, only 9.5% (25/261) of the content within the relevant time period dealt with such topics. Another example concerns the category “Science and health.” Despite being the one with the highest number of posts (129/261, 49.4%), it scored 5th in terms of engagement. This investigation served as the basis for the development of a tool designed to automate the analysis of Facebook pages. The list of categories and keywords generated by this analysis was employed to feed the system, which was then able to categorize posts appearing on a Facebook page. We tested the system on 163 posts and only 34 were classified incorrectly, which amounts to a 20.8% error rate (79.2% accuracy). Conclusions: The analysis we conducted by categorizing posts and calculating engagement rates shows that the potential of Facebook pages is often underutilized. This occurs because the categories that generate the greatest engagement are often not those most frequently used. The software developed in this research may help administrators of cancer-related pages analyze their posts more easily and increase public interest as a result.

  • JMIR Cancer 2018;4(2):e11073

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  Patient Education for Cancer

  Dec 17, 2018

  Reliability of Cancer Treatment Information on the Internet: Observational Study

  View Authors View Abstract

  Authors List:

  • Ryo Ogasawara  
  • Noriyuki Katsumata  
  • Tatsushi Toyooka  
  • Yuko Akaishi  
  • Takaaki Yokoyama  
  • Gemmu Kadokura  

  Abstract:

  Background: Finding the correct medical information in a flood of information from the internet is a significant issue for patients with cancer. Objective: We investigated the reliability of the information on cancer treatment methods available on the internet based on an evaluation by medical oncologists, medical students, and cancer survivors. Methods: Using Google and Yahoo as the search engines, we carried out the information search using 2 keywords, “cancer treatment” and “cancer cure,” and the top 20 information sites were identified. A similar search was conducted on 5 types of cancer. The reliability of the information presented was rated on a 3-level scale (A, B, or C). Level A referred to reliable sites (providing information complying with the clinical practice guidelines for various types of cancer), Level B included sites not falling under either Level A or Level C, and Level C comprised dangerous or harmful sites (providing information on treatment not approved by the regulatory authority in Japan and bombastic advertisements without any relevant clinical evidence). The evaluation was conducted by medical oncologists, medical students, and cancer survivors. The consistency of the information reliability level rating between the medical students or cancer survivors with that of the medical oncologists was assessed by using the kappa value. Results: A total of 247 sites were evaluated for reliability. The ratings provided by the medical students’ group were as follows: Level A, 12.1% (30/247); Level B, 56.3% (139/247); and Level C, 31.6% (78/247). The ratings provided by the cancer survivors’ group were as follows: Level A, 16.8% (41/244); Level B, 44.7% (109/244); and Level C, 38.5% (94/244). The ratings provided by the oncologists’ group were as follows: Level A, 10.1% (25/247); Level B, 51.4% (127/247); and Level C, 38.5% (95/247). The intergroup rating consistency between the medical students’ group and oncologists’ group was 87.4% (216/247, kappa=0.77) and that between the cancer survivors’ group and oncologists’ group was 76.2% (186/244, kappa=0.61). Conclusions: Of the investigated sites providing information on cancer treatment on the internet, the percentage of sites that seemed to provide harmful information was much higher than that of sites providing reliable information. The reliability level rating was highly consistent between the medical students’ group and the medical oncologists’ group and also between the cancer survivors’ group and the medical oncologists’ group.

  • JMIR Cancer 2018;4(2):e10031

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