@Article{info:doi/10.2196/24893, author="Heneghan, B. Mallorie and Hussain, Tasmeen and Barrera, Leonardo and Cai, W. Stephanie and Haugen, Maureen and Morgan, Elaine and Rossoff, Jenna and Weinstein, Joanna and Hijiya, Nobuko and Cella, David and Badawy, M. Sherif", title="Access to Technology and Preferences for an mHealth Intervention to Promote Medication Adherence in Pediatric Acute Lymphoblastic Leukemia: Approach Leveraging Behavior Change Techniques", journal="J Med Internet Res", year="2021", month="Feb", day="18", volume="23", number="2", pages="e24893", keywords="acute lymphoblastic leukemia", keywords="medication adherence", keywords="behavior change technique", keywords="oral chemotherapy", keywords="mHealth", keywords="patient-centered", abstract="Background: Suboptimal adherence to 6-mercaptopurine (6-MP) is prevalent in pediatric acute lymphoblastic leukemia (ALL) and associated with increased risk of relapse. Rapid uptake of personal technology makes mobile health (mHealth) an attractive platform to promote adherence. Objective: Study objectives were to examine access to mobile technology and preferences for an mHealth intervention to improve medication adherence in pediatric ALL. Methods: A cross-sectional survey was administered in oncology clinic to parents of children with ALL as well as adolescents and young adults (AYAs) with ALL receiving maintenance chemotherapy. Results: A total of 49 parents (median age [IQR] 39 [33-42] years; female 76\% [37/49]) and 15 patients (median age [IQR] 17 [16-19]; male 80\% [12/15]) participated. All parents and AYAs owned electronic tablets, smartphones, or both. Parents' most endorsed mHealth app features included a list of medications (71\%, 35/49), information about 6-MP (71\%, 35/49), refill reminders (71\%, 35/49), and reminders to take 6-MP (71\%, 35/49). AYAs' most endorsed features included refill reminders (73\%, 11/15), reminders to take 6-MP (73\%, 11/15), and tracking 6-MP (73\%, 11/15). Conclusions: Parents and AYAs reported ubiquitous access to mobile technology and strong interest in multiple adherence-specific mHealth app features. Parents and AYAs provided valuable insight into preferred features for a multifunctional behavioral intervention (mHealth app) to promote medication adherence in pediatric ALL. ", doi="10.2196/24893", url="http://www.jmir.org/2021/2/e24893/", url="http://www.ncbi.nlm.nih.gov/pubmed/33599621" } @Article{info:doi/10.2196/19727, author="Vogel, E. Marco M. and Eitz, A. Kerstin and Combs, E. Stephanie", title="Web-Based Patient Self-Reported Outcome After Radiotherapy in Adolescents and Young Adults With Cancer: Survey on Acceptance of Digital Tools", journal="JMIR Mhealth Uhealth", year="2021", month="Jan", day="11", volume="9", number="1", pages="e19727", keywords="mHealth", keywords="eHealth", keywords="young adults", abstract="Background: eHealth and mobile health (mHealth) are an evolving trend in the medical field. The acceptance of digital tools is high, and the need is growing. Objective: Young adults (18-40 years) confronted with a cancer diagnosis present unique needs and require special care. They often have a strong affinity and are familiar with modern technology. On that account, we implemented a web-based symptom and quality of life (QoL) assessment to address patients' attitudes and willingness to use mHealth tools. The study also aims to evaluate sociodemographic parameters that could influence patients' opinions. Methods: A total of 380 young patients aged 18-40 treated with radiotherapy between 2002 and 2017 were included in the trial. We assessed QoL via the European Organization for Research and Treatment of Cancer-Core 30 (EORTC C30) questionnaire and added general questions about mHealth technology. The added questions inquired patients' opinions regarding general aspects, including technical advances in medicine, mobile and app assistance during cancer treatment, data transfer, and app-specific features. The survey was conducted for 12 months. Participation was voluntary and pseudonymized; prior written consent was obtained. Results: We achieved a participation rate of 57.6\% (219/380) and a completion rate of 50.2\% (110/219). The median age was 33 years (range 18-40). Of all participants, 89.1\% (98/110) considered new technologies in medicine as positive; 10.9\% (12/110) answered with neutral. Nearly all patients (96.4\%, 106/110) stated that they would send further data via a web-based platform. Of all, 96.4\% (106/110) considered the provided pseudonymization of their data as safe. We further asked the patients if they would use a mobile app for symptom and QoL assessment similar to the present web-based system: 74.5\% (82/110) answered with yes and 25.5\% (28/110) said they would not use a mobile app in the future. We tested the willingness to use an app on several sociodemographic parameters, such as age, gender, education, health insurance status, and cancer-related parameters: tumor stage, time since radiation treatment, and treatment intention. None of these parameters correlated with app use in this group of young adults. Patients who were generally positive regarding using an app rated several possible functions of a future app. The 3 most requested features were appointment reminders (89.0\%, 73/82), contact overview of all involved clinics and physicians (87\%, 71/82), and making an appointment via app (78\%, 64/82). Conclusions: eHealth and mHealth tools should be available as an integrated part of a comprehensive cancer care approach. It provides automated, thorough documentation of health parameters during therapy and follow-up for doctors, medical staff, and tumor patients to optimize treatment. With this study, we could show that young adults are the ideal patient population to use eHealth/mHealth tools. Such tools offer further digital support and improve the patients' need for constant QoL during cancer care. ", doi="10.2196/19727", url="http://mhealth.jmir.org/2021/1/e19727/", url="http://www.ncbi.nlm.nih.gov/pubmed/33427669" } @Article{info:doi/10.2196/20636, author="Kongshaug, Nina and Skolbekken, John-Arne and Faxvaag, Arild and Hofsli, Eva", title="Cancer Patients' Perceived Value of a Smartphone App to Enhance the Safety of Home-Based Chemotherapy: Feasibility Study", journal="JMIR Form Res", year="2021", month="Jan", day="6", volume="5", number="1", pages="e20636", keywords="mhealth", keywords="mobile app", keywords="smartphone app", keywords="oral chemotherapy", keywords="patient safety", keywords="home-based cancer treatment", abstract="Background: Oral anticancer therapies can be self-administered by patients outside the hospital setting, which poses challenges of adherence to a drug plan and monitoring of side effects. Modern information technology may be developed and implemented to address these pertinent issues. Objective: The aim of this study was to explore how a smartphone app developed through a stepwise, iterative process can help patients using oral chemotherapy to take their drug, and to report adherence and side effects in a reliable and verifiable manner. Methods: Fourteen patients starting capecitabine treatment were included in this study and used the smartphone app in addition to regular follow up of capecitabine treatment. Nine of these patients fulfilled the treatment plan and were interviewed based on a semistructured interview guide and the System Usability Scale (SUS). In addition, two focus groups were completed with 7 oncologists and 7 oncology nurses, respectively. Interview data were analyzed in accordance with the principles of systematic text condensation. Features of the app were also assessed. Results: The smartphone app provided the patients with a feeling of reassurance regarding correct adherence of their oral chemotherapy treatment. They used the app as a memory tool about their treatment and possible serious side effects, as well as for treatment education. Patients expressed concerns about using the app to report side effects that were not considered to be obviously serious, fearing overreporting. The health personnel expressed an overall positive attitude to integrate this new tool in their everyday work. Conclusions: Patients on oral chemotherapy treatment at home felt safe and found the app to be helpful. The app promoted learning about their treatment and made the patients more independent of the cancer clinic, reducing the need for the clinic's limited resources for follow up of patients on oral anticancer medications. ", doi="10.2196/20636", url="https://formative.jmir.org/2021/1/e20636", url="http://www.ncbi.nlm.nih.gov/pubmed/33404505" } @Article{info:doi/10.2196/21693, author="Sprave, Tanja and Z{\"o}ller, Daniela and Stoian, Raluca and R{\"u}hle, Alexander and Kalckreuth, Tobias and Haehl, Erik and Fahrner, Harald and Binder, Harald and Grosu, Anca-Ligia and Heinemann, Felix and Nicolay, Henrik Nils", title="App-Controlled Treatment Monitoring and Support for Head and Neck Cancer Patients (APCOT): Protocol for a Prospective Randomized Controlled Trial", journal="JMIR Res Protoc", year="2020", month="Dec", day="9", volume="9", number="12", pages="e21693", keywords="mHealth", keywords="head and neck cancer", keywords="HNSCC", keywords="radiotherapy", keywords="mobile app", keywords="quality of life", keywords="patient-reported outcome measures", abstract="Background: Head and neck cancers (HNCs) are among the most common malignancies, which often require multimodal treatment that includes radiation therapy and chemotherapy. Patients with HNC have a high burden of symptoms due to both the damaging effects of the tumor and the aggressive multimodal treatment. Close symptom monitoring over the course of the disease may help to identify patients in need of medical interventions. Objective: This APCOT (App-Controlled Treatment Monitoring and Support for Head and Neck Cancer Patients) trial is designed to assess the feasibility of monitoring HNC patients during the course of (chemo)radiation therapy daily using a mobile app. Additionally, symptom patterns, patient satisfaction, and quality of life will be measured in app-monitored patients in comparison to a patient cohort receiving standard-of-care physician appointments, and health economy aspects of app monitoring will be analyzed. Methods: This prospective randomized single-center trial will evaluate the feasibility of integrating electronic patient-reported outcome measures (ePROMs) into the treatment workflow of HNC patients. Patients undergoing definitive or adjuvant (chemo)radiation therapy as part of their HNC treatment at the Department of Radiation Oncology, University Medical Center Freiburg (Freiburg, Germany) will receive weekly physician appointments and additional appointments as requested to monitor and potentially treat symptoms during the course of treatment. Patients in the experimental arm will additionally be monitored daily using a dedicated app regarding their disease- and treatment-related symptoms, quality of life, and need for personal physician appointments. The feasibility of ePROM monitoring will be tested as the primary endpoint and will be defined if ?80\% of enrolled patients have answered ?80\% of their daily app-based questions. Quality of life will be assessed using the validated European Organisation for Research and Treatment of Cancer questionnaires, and patient satisfaction will be measured by the validated Patient Satisfaction Questionnaire Short Form at the initiation, in the middle, and at completion of radiation therapy, as well as at follow-up examinations. Additionally, the number and duration of physician appointments during the course of radiation therapy will be quantified for both ePROM-monitored and standard-of-care patients. Results: This trial will enroll 100 patients who will be randomized (1:1) between the experimental arm with ePROM monitoring and the control arm with standard patient care. Recruitment will take 18 months, and trial completion is planned at 24 months after enrollment of the last patient. Conclusions: This trial will establish the feasibility of close ePROM monitoring of HNC patients undergoing (chemo)radiation therapy. The results can form the basis for further trials investigating potential clinical benefits of detailed symptom monitoring and patient-centered care in HNC patients regarding oncologic outcomes and quality of life. Trial Registration: German Clinical Trials Register DRKS00020491; https://www.drks.de/drks\_web/navigate.do?navigationId=trial.HTML\&TRIAL\_ID=DRKS00020491 International Registered Report Identifier (IRRID): PRR1-10.2196/21693 ", doi="10.2196/21693", url="https://www.researchprotocols.org/2020/12/e21693", url="http://www.ncbi.nlm.nih.gov/pubmed/33295291" } @Article{info:doi/10.2196/22825, author="Whitehead, Lisa and Emery, Laura and Kirk, Deborah and Twigg, Diane and Brown, Deborah and Dewar, Joanna", title="Evaluation of a Remote Symptom Assessment and Management (SAM) System for People Receiving Adjuvant Chemotherapy for Breast or Colorectal Cancer: Mixed Methods Study", journal="JMIR Cancer", year="2020", month="Dec", day="7", volume="6", number="2", pages="e22825", keywords="self-management", keywords="intervention", keywords="symptom management", keywords="breast cancer", keywords="colorectal cancer", keywords="cancer", keywords="symptom", keywords="monitoring", keywords="online intervention", keywords="development", keywords="implementation", keywords="evaluation", abstract="Background: The Symptom Assessment and Management (SAM) program is a structured, online, nurse-supported intervention to support symptom self-management in people receiving adjuvant chemotherapy post surgery for breast or colorectal cancer. Objective: The objective of this study was to describe the development, implementation strategy, and evaluation of the SAM system. Methods: The development of the SAM program involved 3 phases. In phase 1, the web app was developed through consultation with consumers and clinicians and of the literature to ensure that the system was evidence-based and reflected the realities of receiving treatment and supporting patients through treatment. In phase 2, 7 participants recorded the severity of 6 symptoms daily over the course of 1 cycle of chemotherapy. In phase 3, 17 participants recorded their symptoms daily over the course of 3 cycles of chemotherapy. Once symptoms were recorded, participants received immediate feedback on the severity of their symptoms and self-management recommendations, which could include seeking immediate medical attention. Data on quality of life, symptom burden, anxiety and depression, distress, and self-efficacy were collected during treatment; participants' perceptions of the SAM program were evaluated following participation via interview. Results: The outcomes of the SAM project include the development of a system that is reliable and easy to use and navigate. Participants reported benefits related to using the SAM program that included feeling more in control of managing their symptoms and feeling reassured. Engagement with the system on a daily basis was variable, with some participants completing the symptom tracker daily and others engaging some of the time. The feedback from all participants was that the system was easy to navigate and the information was relevant and supportive. Conclusions: The SAM program has the potential to enhance the management of symptoms for people receiving chemotherapy treatment. The system creates an accurate repository of symptoms that can be accessed easily and highlight patterns in symptom experience. These can be shared with clinicians, with patient permission, to inform and support treatment plans. The potential to predict the risk of developing severe symptoms can be developed to anticipate the need for care and support. Further considerations on how to increase engagement with the system, the value of the system for people diagnosed with other tumor types and treatment regimes, and the incorporation of the system into everyday clinical practice are needed. ", doi="10.2196/22825", url="http://cancer.jmir.org/2020/2/e22825/", url="http://www.ncbi.nlm.nih.gov/pubmed/33284122" } @Article{info:doi/10.2196/19225, author="Jones, V. Helen and Smith, Harry and Cooksley, Tim and Jones, Philippa and Woolley, Toby and Gwyn Murdoch, Derick and Thomas, Dafydd and Foster, Betty and Wakefield, Valerie and Innominato, Pasquale and Mullard, Anna and Ghosal, Niladri and Subbe, Christian", title="Checklists for Complications During Systemic Cancer Treatment Shared by Patients, Friends, and Health Care Professionals: Prospective Interventional Cohort Study", journal="JMIR Mhealth Uhealth", year="2020", month="Sep", day="25", volume="8", number="9", pages="e19225", keywords="cancer", keywords="patient safety", keywords="checklist", keywords="quality of life", keywords="anxiety", keywords="depression", keywords="health economics", keywords="mHealth", keywords="smartphone", keywords="redundancy", abstract="Background: Advances in cancer management have been associated with an increased incidence of emergency presentations with disease- or treatment-related complications. Objective: This study aimed to measure the ability of patients and members of their social network to complete checklists for complications of systemic treatment for cancer and examine the impact on patient-centered and health-economic outcomes. Methods: A prospective interventional cohort study was performed to assess the impact of a smartphone app used by patients undergoing systemic cancer therapy and members of their network to monitor for common complications. The app was used by patients, a nominated ``safety buddy,'' and acute oncology services. The control group was made up of patients from the same institution. Measures were based on process (completion of checklists over 60 days), patient experience outcomes (Hospital Anxiety and Depression Scale and the General version of the Functional Assessment of Cancer Therapy at baseline, 1 month, and 2 months) and health-economic outcomes (usage of appointments in primary care and elective and unscheduled hospital admissions). Results: At the conclusion of the study, 50 patients had completed 2882 checklists, and their 50 ``safety buddies'' had completed 318 checklists. Near daily usage was maintained over the 60-day study period. When compared to a cohort of 50 patients with matching disease profiles from the same institution, patients in the intervention group had comparable changes in Hospital Anxiety and Depression Scale and General version of the Functional Assessment of Cancer Therapy. Patients in the Intervention Group required a third (32 vs 97 nights) of the hospital days with overnight stay compared to patients in the Control Group, though the difference was not significant. The question, ``I feel safer with the checklist,'' received a mean score of 4.27 (SD 0.87) on a Likert scale (1-5) for patients and 4.55 (SD 0.65) for family and friends. Conclusions: Patients undergoing treatment for cancer and their close contacts can complete checklists for common complications of systemic treatments and take an active role in systems supporting their own safety. A larger sample size will be needed to assess the impact on clinical outcomes and health economics. ", doi="10.2196/19225", url="http://mhealth.jmir.org/2020/9/e19225/", url="http://www.ncbi.nlm.nih.gov/pubmed/32975526" } @Article{info:doi/10.2196/18896, author="Zhu, Haihua and Chen, Xiuwan and Yang, Jinqiu and Wu, Qiaoling and Zhu, Jiemin and Chan, Wai-Chi Sally", title="Mobile Breast Cancer e-Support Program for Chinese Women With Breast Cancer Undergoing Chemotherapy (Part 3): Secondary Data Analysis", journal="JMIR Mhealth Uhealth", year="2020", month="Sep", day="16", volume="8", number="9", pages="e18896", keywords="breast cancer", keywords="chemotherapy", keywords="mobile app", keywords="mHealth", abstract="Background: Many app-based interventions targeting women with breast cancer have been developed and tested for effectiveness. However, information regarding the evaluation of the usage of these interventions is scarce. A better understanding of usage data is important to determine how women use apps and how these interventions affect health outcomes. Objective: This study aimed to examine the usage duration and login frequency of an app-based intervention, the Breast Cancer e-Support (BCS) program, and to investigate the association between usage data and participants' demographic and medical characteristics. Methods: This study is a secondary data analysis of a randomized controlled trial assessing the effectiveness of the BCS program. The BCS program contains four modules: Learning Forum, Discussion Forum, Ask-the-Expert Forum, and Your Story Forum. A total of 57 women in the intervention group accessed the BCS program during their 12-week chemotherapy. The app's background system tracked the usage duration and login frequency for each forum and the entire BCS program. Results: The total usage duration per participant ranged from 0 to 9371 minutes, and the login frequency per participant ranged from 0 to 774 times. The Discussion Forum and the Learning Forum were the most frequently used modules. The general linear model showed that age, education, family monthly income, and employment were associated with BCS usage duration and/or login frequency. Age (F1,45=10.09, P=.003, B=115.34, 95\% CI 42.22-188.47) and education level (F1,45=7.22, P=.01, B=1949.63, 95\% CI 487.76-3411.50) were positively associated with the usage duration of the entire BCS program. Family monthly income was positively associated with the usage duration of the Learning Forum (F1,45=11.85, P=.001, B=1488.55, 95\% CI 617.58-2359.51) and the login frequency of the entire BCS program (F1,45=4.47, P=.04, B=113.68, 95\% CI 5.33-222.03). Employment was negatively associated with the usage duration of the Ask-the-expert Forum (F1,45=4.50, P=.04, B=--971.87, 95\% CI --1894.66 to --49.07) and the Your Story Forum (F1,45=5.36, P=.03, B=--640.71, 95\% CI --1198.30 to --83.11) and positively associated with the login frequency of the entire BCS program (F1,45=10.86, P=.002, B=192.88, 95\% CI 75.01-310.74). No statistical differences were found between BCS usage data and cancer stage, BMI, comorbidity, types of surgery, or cycles of chemotherapy. Conclusions: Overall, this study found considerable variability in the usage of app-based interventions. When health care professionals incorporate app-based interventions into their routine care for women with breast cancer, the learning and discussion functions of apps should be strengthened to promote engagement. Additionally, characteristics of women with breast cancer, such as age, level of education, income, and employment status, should be taken in consideration to develop tailored apps that address their particular needs and therefore improve their engagement with the app. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12616000639426; http://www.ANZCTR.org.au/ACTRN12616000639426.aspx ", doi="10.2196/18896", url="http://mhealth.jmir.org/2020/9/e18896/", url="http://www.ncbi.nlm.nih.gov/pubmed/32936087" } @Article{info:doi/10.2196/17058, author="Crafoord, Marie-Ther{\'e}se and Fjell, Maria and Sundberg, Kay and Nilsson, Marie and Langius-Ekl{\"o}f, Ann", title="Engagement in an Interactive App for Symptom Self-Management during Treatment in Patients With Breast or Prostate Cancer: Mixed Methods Study", journal="J Med Internet Res", year="2020", month="Aug", day="10", volume="22", number="8", pages="e17058", keywords="engagement", keywords="adherence", keywords="mHealth", keywords="mobile app", keywords="cancer supportive care", keywords="symptom management", keywords="usage metrics", keywords="breast cancer", keywords="prostate cancer", abstract="Background: Using mobile technology for symptom management and self-care can improve patient-clinician communication and clinical outcomes in patients with cancer. The interactive app Interaktor has been shown to reduce symptom burden during cancer treatment. It includes symptom assessment, an alert system for contact with health care professionals, access to self-care advice, and visualization of symptom history. It is essential to understand how digital interventions operate; one approach is to examine engagement by assessing usage and exploring user experiences. Actual usage in relation to the intended use---adherence---is an essential factor of engagement. Objective: This study aimed to describe engagement with the Interaktor app among patients with breast or prostate cancer during treatment. Methods: Patients from the intervention groups of two separate randomized controlled trials were included: patients with breast cancer receiving neoadjuvant chemotherapy (n=74) and patients with locally advanced prostate cancer receiving treatment with radiotherapy (n=75). The patients reported their symptoms daily. Sociodemographic and clinical data were obtained from baseline questionnaires and medical records. Logged data usage was retrieved from the server and analyzed descriptively and with multiple regression analysis. Telephone interviews were conducted with patients about their perceptions of using the app and analyzed using content analysis. Results: The median adherence percentage to daily symptom reporting was 83\%. Most patients used the self-care advice and free text message component. Among the patients treated for breast cancer, higher age predicted a higher total number of free text messages sent (P=.04). Among the patients treated for prostate cancer, higher age (P=.01) and higher education level (P=.04), predicted an increase in total views on self-care advice, while higher comorbidity (P=.004) predicted a decrease in total views on self-care advice. Being married or living with a partner predicted a higher adherence to daily symptom reporting (P=.02). Daily symptom reporting created feelings of having continuous contact with health care professionals, being acknowledged, and safe. Being contacted by a nurse after a symptom alert was considered convenient and highly valued. Treatment and time-related aspects influenced engagement. Daily symptom reporting was perceived as particularly meaningful at the beginning of treatment. Requests were made for advice on diet and psychological symptoms, as well as for more comprehensive and detailed information as the patient progressed through treatment. Conclusions: Patient engagement in the interactive app Interaktor was high. The app promoted patient participation in their care through continuous and convenient contact with health care professionals. The predictive ability of demographic variables differed between patient groups, but higher age and a higher educational level predicted higher usage of specific app functions for both patient groups. Patients' experience of relevance and interactivity influenced their engagement positively. ", doi="10.2196/17058", url="https://www.jmir.org/2020/8/e17058", url="http://www.ncbi.nlm.nih.gov/pubmed/32663140" } @Article{info:doi/10.2196/13979, author="Alghamdi, Abdulrahman and Abumelha, Khalid and Allarakia, Jawad and Al-Shehri, Ahmed", title="Conversations and Misconceptions About Chemotherapy in Arabic Tweets: Content Analysis", journal="J Med Internet Res", year="2020", month="Jul", day="29", volume="22", number="7", pages="e13979", keywords="internet", keywords="chemotherapy", keywords="cancer", keywords="Twitter", keywords="social media", keywords="Arab world", keywords="misconceptions", keywords="infodemiology", keywords="infoveillance", abstract="Background: Although chemotherapy was first introduced for the treatment of cancer more than 60 years ago, the public understanding and acceptance of chemotherapy is still debatable. To the best of our knowledge, no study has assessed the conversations and misconceptions about chemotherapy as a treatment for cancer on social media platforms among the Arabic-speaking populations. Objective: The aim of this study was to assess the types of conversations and misconceptions that were shared on Twitter regarding chemotherapy as a treatment for cancer among the Arabic-speaking populations. Methods: All Arabic tweets containing any of the representative set of keywords related to chemotherapy and written between May 1, 2017 and October 31, 2017 were retrieved. A manual content analysis was performed to identify the categories of the users, general themes of the tweets, and the common misconceptions about chemotherapy. A chi-square test for independence with adjusted residuals was used to assess the significant associations between the categories of the users and the themes of the tweets. Results: A total of 402,157 tweets were retrieved, of which, we excluded 309,602 retweets and 62,651 irrelevant tweets. Therefore, 29,904 tweets were included in the final analysis. The majority of the tweets were posted by general users (25,774/29,904, 86.2\%), followed by the relatives and friends of patients with cancer (1913/29,904, 6.4\%). The tweets were classified into 9 themes; prayers and wishes for the well-being of patients undergoing chemotherapy was the most common theme (20,288/29,904, 67.8\%), followed by misconceptions about chemotherapy (2084/29,904, 7.0\%). There was a highly significant association between the category of the users and the themes of the tweets ($\chi$240= 16904.4, P<.001). Conclusions: Our findings support those of the previous infodemiology studies that Twitter is a valuable social media platform for assessing public conversations, discussions, and misconceptions about various health-related topics. The most prevalent theme of the tweets in our sample population was supportive messages for the patients undergoing chemotherapy, thereby suggesting that Twitter could play a role as a support mechanism for such patients. The second most prevalent theme of the tweets in our study was the various misconceptions about chemotherapy. The findings of our exploratory analysis can help physicians and health care organizations tailor educational efforts in the future to address different misconceptions about chemotherapy, thereby leading to increased public acceptance of chemotherapy as a suitable mode of treatment for cancer. ", doi="10.2196/13979", url="http://www.jmir.org/2020/7/e13979/", url="http://www.ncbi.nlm.nih.gov/pubmed/32723724" } @Article{info:doi/10.2196/18564, author="Eliasen, Astrid and Abildtoft, Kramme Mikkel and Krogh, Steen Niels and Rechnitzer, Catherine and Brok, Sune Jesper and Mathiasen, Ren{\'e} and Schmiegelow, Kjeld and Dalhoff, Peder Kim", title="Smartphone App to Self-Monitor Nausea During Pediatric Chemotherapy Treatment: User-Centered Design Process", journal="JMIR Mhealth Uhealth", year="2020", month="Jul", day="20", volume="8", number="7", pages="e18564", keywords="mobile applications", keywords="patient-reported outcome measures", keywords="patient compliance", keywords="neoplasms", keywords="antiemetics", keywords="nausea", keywords="vomiting", keywords="cancer", keywords="children", keywords="app", abstract="Background: Nausea and vomiting are common and distressing side effects for children receiving chemotherapy. Limited evidence is available to guide antiemetic recommendations; therefore, prospective and reliable evaluation of antiemetic efficacy is needed. Smartphone apps can be used to effortlessly and precisely collect patient-reported outcomes in real time. Objective: Our objective was to develop a smartphone app to monitor nausea and vomiting episodes in pediatric cancer patients aged 0 to 18 years and to test its usability and adherence to its use. Methods: We used a user-centered design process and the evolutionary prototype model to develop and evaluate the app. Multidisciplinary group discussions and several rounds of patient feedback and modification were conducted. We translated the validated Pediatric Nausea Assessment Tool to assess nausea severity in children aged 4 to 18 years. The child's own term for nausea was interactively incorporated in the nausea severity question, with response options expressed as 4 illustrative faces. Parent-reported outcomes were used for children aged 0 to 3 years. Reminders were sent using push notifications in order to ensure high response rates. Children aged 0 to 18 years who were undergoing chemotherapy were recruited from the Department of Pediatric Oncology at Copenhagen University Hospital Rigshospitalet to evaluate the app. Results: The app's most important function was to record nausea severity in children. After assistance from a researcher, children aged 4 to 18 years were able to report their symptoms in the app, and parents were able to report symptoms for their children aged 0 to 3 years. Children (n=20, aged 2.0-17.5 years) and their parents evaluated the app prospectively during a collective total of 60 chemotherapy cycles. They expressed that the app was user-friendly, intuitive, and that the time spent on data entry was fair. The response rates were on average 92\%, 93\%, and 80\% for the day before, the first day of, and the next 3 days after chemotherapy, respectively. Researchers and clinicians were able to obtain an overview of the patient's chemotherapy dates and responses through a secure and encrypted web-based administrative portal. Data could be downloaded for further analysis. Conclusions: The user-friendly app could be used to facilitate future pediatric antiemetic trials and to refine antiemetic treatment during chemotherapy. ", doi="10.2196/18564", url="https://mhealth.jmir.org/2020/7/e18564", url="http://www.ncbi.nlm.nih.gov/pubmed/32706744" } @Article{info:doi/10.2196/17232, author="Murat-Ringot, Audrey and Souquet, Jean Pierre and Chauvenet, Marion and Rentler, Charlotte and Subtil, Fabien and Schott, Anne-Marie and Preau, Marie and Piriou, Vincent", title="The Effects of Foot Reflexology on Chemotherapy-Induced Nausea and Vomiting in Patients with Digestive System or Lung Cancer: Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2020", month="Jul", day="14", volume="9", number="7", pages="e17232", keywords="cancer", keywords="randomized controlled trial", keywords="foot reflexology", keywords="nausea", keywords="vomiting", keywords="chemotherapy", abstract="Background: The side effects of chemotherapy, specifically chemotherapy-induced nausea and vomiting, are a concern for patients. To relieve these side effects, antiemetic drugs are recommended. However, some patients report that these drugs are not sufficiently effective. Moreover, patients with chronic disease, including cancer, are increasingly interested in complementary and alternative medicines, and express the desire for nonpharmacological treatments to be used in hospitals. Foot reflexology is a holistic approach that is reported to significantly reduce the severity of chemotherapy-induced nausea and vomiting in patients with breast cancer. Some of the chemotherapy treatments for patients with lung and digestive system cancer are moderately or highly emetic. Objective: The primary objective of this study is to assess the benefits of foot reflexology, together with conventional treatments, on the severity and frequency of chemotherapy-induced nausea and vomiting in patients with lung or digestive system cancer. The secondary objectives to be assessed are quality of life, anxiety, and self-esteem. Methods: This study is an open-label randomized controlled trial conducted over 22 months (18 months intervention and 4 months follow-up). Eligible participants are patients with a lung or digestive system cancer with an indication for platinum-based chemotherapy. Participants are randomized into two groups: conventional care with foot reflexology and conventional care without foot reflexology. Foot reflexology sessions (30 minutes) are performed on an outpatient or inpatient basis. It was estimated that 40 participants per group will be required. The benefits of foot reflexology will be assessed by comparing the relative change in the severity of nausea and vomiting, as assessed by a visual analogue scale, and the frequency of these side effects between the two groups. The secondary objectives will be assessed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire; Hospital and Anxiety Depression Scale; and Body Image Questionnaire. Results: This study was approved by the regional ethics committee ({\^I}le de France X CPP) on April 3, 2018 (No. ID RCB 2018-A00571-54). Enrollment started in June 2018. Data analysis will be performed during the second quarter of 2020 and results will be published in the last quarter of 2020. Conclusions: The lack of knowledge regarding the efficacy and safety of foot reflexology limits oncologists to recommend it for this use. This study will provide evidence of the benefits of foot reflexology. If efficacy is confirmed, foot reflexology may be a promising complement to conventional antiemetic drugs. Trial Registration: Clinicaltrials.gov NCT03508180; https://www.clinicaltrials.gov/ct2/show/NCT03508180. International Registered Report Identifier (IRRID): DERR1-10.2196/17232 ", doi="10.2196/17232", url="https://www.researchprotocols.org/2020/7/e17232", url="http://www.ncbi.nlm.nih.gov/pubmed/32449505" } @Article{info:doi/10.2196/17724, author="Schindera, Christina and Kuehni, Elisabeth Claudia and Pavlovic, Mladen and Haegler-Laube, Simona Eva and Rhyner, Daniel and Waespe, Nicolas and Roessler, Jochen and Suter, Thomas and von der Weid, Xavier Nicolas", title="Diagnosing Preclinical Cardiac Dysfunction in Swiss Childhood Cancer Survivors: Protocol for a Single-Center Cohort Study", journal="JMIR Res Protoc", year="2020", month="Jun", day="10", volume="9", number="6", pages="e17724", keywords="cardiotoxicity", keywords="Switzerland", keywords="echocardiography", keywords="speckle tracking", keywords="strain", keywords="anthracyclines", keywords="alkylating agents", keywords="steroids", keywords="cardiac radiation", abstract="Background: Cardiovascular disease is the leading nonmalignant cause of late deaths in childhood cancer survivors. Cardiovascular disease and cardiac dysfunction can remain asymptomatic for many years, but eventually lead to progressive disease with high morbidity and mortality. Early detection and intervention are therefore crucial to improve outcomes. Objective: In our study, we aim to assess the prevalence of preclinical cardiac dysfunction in adult childhood cancer survivors using conventional and speckle tracking echocardiography; determine the association between cardiac dysfunction and treatment-related risk factors (anthracyclines, alkylating agents, steroids, cardiac radiation) and modifiable cardiovascular risk factors (abdominal obesity, hypertension); investigate the development of cardiac dysfunction longitudinally in a defined cohort; study the association between cardiac dysfunction and other health outcomes like pulmonary disease, endocrine disease, renal disease, quality of life, fatigue, strength and endurance, and physical activity; and gain experience conducting a clinical study of childhood cancer survivors that will be extended to a national, multicenter study of cardiac complications. Methods: For this retrospective cohort study, we will invite ?5-year childhood cancer survivors who were treated at the University Children's Hospital Bern, Switzerland with any chemotherapy or cardiac radiation since 1976 and who are ?18 years of age at the time of the study for a cardiac assessment at the University Hospital Bern. This includes 544 childhood cancer survivors, of whom about half were treated with anthracyclines and/or cardiac radiation and half with any other chemotherapy. The standardized cardiac assessment includes a medical history focusing on signs of cardiovascular disease and its risk factors, a physical examination, anthropometry, vital parameters, the 1-minute sit-to-stand test, and echocardiography including 2-dimensional speckle tracking. Results: We will invite 544 eligible childhood cancer survivors (median age at the time of the study, 32.5 years; median length of time since diagnosis, 25.0 years) for a cardiac assessment. Of these survivors, 300 (55\%) are at high risk, and 244 (45\%) are at standard risk of cardiac dysfunction. Conclusions: This study will determine the prevalence of preclinical cardiac dysfunction in Swiss childhood cancer survivors, inform whether speckle tracking echocardiography is more sensitive to cardiac dysfunction than conventional echocardiography, and give a detailed picture of risk factors for cardiac dysfunction. The results will help improve primary treatment and follow-up care of children with cancer. Trial Registration: ClinicalTrials.gov NCT03790943; https://clinicaltrials.gov/ct2/show/NCT03790943 International Registered Report Identifier (IRRID): DERR1-10.2196/17724 ", doi="10.2196/17724", url="http://www.researchprotocols.org/2020/6/e17724/", url="http://www.ncbi.nlm.nih.gov/pubmed/32269016" } @Article{info:doi/10.2196/14896, author="Tolstrup, K. L{\ae}rke and Pappot, Helle and Bastholt, Lars and Zwisler, Ann-Dorthe and Dieperink, B. Karin", title="Patient-Reported Outcomes During Immunotherapy for Metastatic Melanoma: Mixed Methods Study of Patients' and Clinicians' Experiences", journal="J Med Internet Res", year="2020", month="Apr", day="9", volume="22", number="4", pages="e14896", keywords="side effects, adverse events, patient-reported outcomes, PRO-CTCAE, melanoma, eHealth, immunotherapy, patient satisfaction", keywords="CPIs, interviews", abstract="Background: The benefits of electronic patient reported outcomes (PRO) questionnaires have been demonstrated in many settings, including in hospitals and patient homes. However, it remains to be investigated how melanoma patients and their treating clinicians experience the electronic self-reporting of side effects and the derived communication. Objective: The primary objective of this study was to examine patients' and clinicians' experiences with an eHealth intervention for weekly monitoring of side effects during treatment with immunotherapy. Methods: An eHealth intervention based on questions from the PRO-Common Terminology Criteria for Adverse Events (CTCAE) library was used and tested in a randomized clinical trial with patients receiving immunotherapy for malignant melanoma and clinicians at a university hospital in Denmark. On a weekly basis, patients reported their symptoms from home during the treatment via a provided tablet. The electronic patient reports were available to clinicians in the outpatient clinic. A mixed methods approach was applied to investigate the patients' and clinicians' experiences with the intervention. Data from patient experiences were collected in a short survey, the Patient Feedback Form. Moreover, a subset of the patients participating in the survey was interviewed about their experience. Furthermore, one focus group interview with clinicians was carried out to elucidate their views. Results: A total of 57 patients completed the Patient Feedback Form, and 14 patients were interviewed. The focus group interview included 5 clinicians. Overall, patients and clinicians were satisfied with the tool. They believed it enhanced patients' awareness of side effects and increased their feeling of involvement. The patients reported that it was easy to fill out the questionnaire and that it made sense to do so. However, a minority of the patients expressed in the interviews that they did not believe that the health care professionals had seen their reports when they came to the clinic, and that the reporting did not lead to increased contact with the department. Conclusions: Overall, satisfaction with the eHealth intervention was high among patients and their treating clinicians. The tool was easy to use and contributed to greater symptom awareness and patient involvement. Thus, in terms of patient and clinician satisfaction with the tool, it makes sense to continue using the tool beyond the project period. Trial Registration: ClinicalTrials.gov NCT03073031; https://tinyurl.com/tjx3gtu ", doi="10.2196/14896", url="https://www.jmir.org/2020/4/e14896", url="http://www.ncbi.nlm.nih.gov/pubmed/32271150" } @Article{info:doi/10.2196/16013, author="Alonso Puig, Mario and Alonso-Prieto, Mercedes and Mir{\'o}, Jordi and Torres-Luna, Raquel and Plaza L{\'o}pez de Sabando, Diego and Reinoso-Barbero, Francisco", title="The Association Between Pain Relief Using Video Games and an Increase in Vagal Tone in Children With Cancer: Analytic Observational Study With a Quasi-Experimental Pre/Posttest Methodology", journal="J Med Internet Res", year="2020", month="Mar", day="30", volume="22", number="3", pages="e16013", keywords="hematology oncology", keywords="pediatric patient", keywords="acute pain", keywords="patient-controlled analgesia", keywords="video pupilometer", keywords="analgesia nociception index", abstract="Background: Patients with secondary pain due to mucositis after chemotherapy require treatment with morphine. Use of electronic video games (EVGs) has been shown to be an effective method of analgesia in other clinical settings. Objective: The main objective of this study was to assess the association between the use of EVGs and the intensity of pain caused by chemotherapy-induced mucositis in pediatric patients with cancer. The secondary objective was to assess the association between changes in pain intensity and sympathetic-parasympathetic balance in this sample of pediatric patients. Methods: Clinical records were compared between the day prior to the use of EVGs and the day after the use of EVGs. The variables were variations in pupil size measured using the AlgiScan video pupilometer (IDMed, Marseille, France), heart rate variability measured using the Analgesia Nociception Index (ANI) monitor (Mdoloris Medical Systems, Loos, France), intensity of pain measured using the Numerical Rating Scale (score 0-10), and self-administered morphine pump parameters. Results: Twenty patients (11 girls and nine boys; mean age 11.5 years, SD 4.5 years; mean weight 41.5 kg, SD 20.7 kg) who met all the inclusion criteria were recruited. EVGs were played for a mean of 2.3 (SD 1.3) hours per day, resulting in statistically significant changes. After playing EVGs, there was significantly lower daily morphine use (before vs after playing EVGs: 35.9 vs 28.6 {\textmu}g/kg/day, P=.003), lower demand for additional pain relief medication (17 vs 9.6 boluses in 24 hours, P=.001), lower scores of incidental pain intensity (7.7 vs 5.4, P=.001), lower scores of resting pain (4.8 vs 3.2, P=.01), and higher basal parasympathetic tone as measured using the ANI monitor (61.8 vs 71.9, P=.009). No variation in pupil size was observed with the use of EVGs. Conclusions: The use of EVGs in pediatric patients with chemotherapy-induced mucositis has a considerable analgesic effect, which is associated physiologically with an increase in parasympathetic vagal tone despite lower consumption of morphine. ", doi="10.2196/16013", url="http://www.jmir.org/2020/3/e16013/", url="http://www.ncbi.nlm.nih.gov/pubmed/32224482" } @Article{info:doi/10.2196/15969, author="Spahrk{\"a}s, S. Simon and Looijmans, Anne and Sanderman, Robbert and Hagedoorn, Mari{\"e}t", title="Beating Cancer-Related Fatigue With the Untire Mobile App: Protocol for a Waiting List Randomized Controlled Trial", journal="JMIR Res Protoc", year="2020", month="Feb", day="14", volume="9", number="2", pages="e15969", keywords="RCT", keywords="mHealth", keywords="app", keywords="intervention", keywords="fatigue", keywords="quality of life", keywords="cancer patients", keywords="cancer survivors", keywords="psycho-oncology", abstract="Background: Many cancer patients and survivors worldwide experience disabling fatigue as the main side effect of their illness and the treatments involved. Face-to-face therapy is effective in treating cancer-related fatigue (CRF), but it is also resource-intensive. Offering a self-management program via a mobile phone app (ie, the Untire app), based on elements of effective face-to-face treatments, might increase the number of patients receiving adequate support for fatigue and decrease care costs. Objective: The aim of this protocol is to describe a randomized controlled trial (RCT) to assess the effectiveness of the Untire app in reducing fatigue in cancer patients and survivors after 12 weeks of app use as compared with a waiting list control group. Substudies nested within this trial include questions concerning the reach and costs of online recruitment and uptake and usage of the Untire app. Methods: The Untire app study is a waiting list RCT targeting cancer patients and survivors who experience moderate to severe fatigue via social media (Facebook and Instagram) across 4 English-speaking countries (Australia, Canada, the United Kingdom, and the United States). The Untire app includes psychoeducation and exercises concerning energy conservation, activity management, optimizing restful sleep, mindfulness-based stress reduction, psychosocial support, cognitive behavioral therapy, and physical activity. After randomization, participants in the intervention group could access the Untire app immediately, whereas control participants had no access to the Untire app until the primary follow-up assessment at 12 weeks. Participants completed questionnaires at baseline before randomization and after 4, 8, 12, and 24 weeks. The study outcomes are fatigue (primary) and quality of life (QoL; secondary). Potential moderators and mediators of the hypothesized treatment effect on levels of fatigue and QoL were also assessed. Link clicks and app activation are used to assess reach and uptake, respectively. Log data are used to explore the characteristics of app use. Sample size calculations for the primary outcome showed that we needed to include 164 participants with complete 12-week measures both in the intervention and the control groups. The intention-to-treat approach is used in the primary analyses, which refers to analyzing all participants regardless of their app use. Results: Participants were recruited from March to October 2018. The last participant completed the 24-week assessment in March 2019. Conclusions: This mobile health (mHealth) RCT recruited participants online in multiple countries to examine the uptake and effectiveness of the Untire self-management app to reduce CRF. Many advantages of mHealth apps are assumed, such as the immediate access to the app, the low thresholds to seek support, and the absence of contact with care professionals that will reduce costs. If found effective, this app can easily be offered worldwide to patients experiencing CRF. Trial Registration: Netherlands Trial Register NL6642; https://www.trialregister.nl/trial/6642. International Registered Report Identifier (IRRID): DERR1-10.2196/15969 ", doi="10.2196/15969", url="http://www.researchprotocols.org/2020/2/e15969/", url="http://www.ncbi.nlm.nih.gov/pubmed/32130185" } @Article{info:doi/10.2196/13217, author="Bao, Ting and Deng, Gary and DeMarzo, A. Lauren and Zhi, Iris W. and DeRito, L. Janice and Blinder, Victoria and Chen, Connie and Li, S. Qing and Green, Jamie and Pendleton, Eva and Mao, J. Jun", title="A Technology-Assisted, Brief Mind-Body Intervention to Improve the Waiting Room Experience for Chemotherapy Patients: Randomized Quality Improvement Study", journal="JMIR Cancer", year="2019", month="Nov", day="7", volume="5", number="2", pages="e13217", keywords="mobile app", keywords="acupressure", keywords="meditation", keywords="symptom relief", keywords="chemotherapy", abstract="Background: Patients waiting for chemotherapy can experience stress, anxiety, nausea, and pain. Acupressure and meditation have been shown to control such symptoms. Objective: This study aimed to evaluate the feasibility and effectiveness of an integrative medicine app to educate patients about these self-care tools in chemotherapy waiting rooms. Methods: We screened and enrolled cancer patients in chemotherapy waiting rooms at two Memorial Sloan Kettering Cancer Center locations. Patients were randomly assigned into an intervention arm in which subjects watched acupressure and meditation instructional videos or a control arm in which they watched a time- and attention-matched integrative oncology lecture video. Before and after watching the videos, we asked the patients to rate four key symptoms: stress, anxiety, nausea, and pain. We performed the analysis of covariance to detect differences between the two arms postintervention while controlling for baseline symptoms. Results: A total of 223 patients were enrolled in the study: 113 patients were enrolled in the intervention arm and 110 patients were enrolled in the control arm. In both groups, patients showed significant reductions in stress and anxiety from baseline (all P<.05), with the treatment arm reporting greater stress and anxiety reduction than the control arm (1.64 vs 1.15 in stress reduction; P=.01 and 1.39 vs 0.78 in anxiety reduction; P=.002). The majority of patients reported that the videos helped them pass time and that they would watch the videos again. Conclusions: An integrative medicine self-care app in the waiting room improved patients' experiences and reduced anxiety and stress. Future research could focus on expanding this platform to other settings to improve patients' overall treatment experiences. ", doi="10.2196/13217", url="http://cancer.jmir.org/2019/2/e13217/", url="http://www.ncbi.nlm.nih.gov/pubmed/31697238" } @Article{info:doi/10.2196/14418, author="Ariza-Garcia, Angelica and Lozano-Lozano, Mario and Galiano-Castillo, Noelia and Postigo-Martin, Paula and Arroyo-Morales, Manuel and Cantarero-Villanueva, Irene", title="A Web-Based Exercise System (e-CuidateChemo) to Counter the Side Effects of Chemotherapy in Patients With Breast Cancer: Randomized Controlled Trial", journal="J Med Internet Res", year="2019", month="Jul", day="24", volume="21", number="7", pages="e14418", keywords="breast cancer", keywords="chemotherapy", keywords="physical fitness", keywords="randomized control trial", keywords="telehealth", keywords="e-health", keywords="therapeutic exercise", abstract="Background: Breast cancer patients have to face a high-risk state during chemotherapy, which involves deterioration of their health including extensive physical deterioration. Face-to-face physical exercise programs have presented low adherence rates during medical treatment, and telehealth systems could improve these adherence rates. Objective: This study aimed to evaluate the effectiveness of a Web-based exercise program (e-CuidateChemo) to mitigate the side effects of chemotherapy on the physical being, anthropometric aspects, and body composition. Methods: A total of 68 patients diagnosed with breast cancer, who were undergoing chemotherapy, were enrolled. The patients were categorized into two groups: e-CuidateChemo (n=34) and controls (n=34). The e-CuidateChemo group participated in an adapted 8-week tailored exercise program through a Web-based system. A blinded, trained researcher assessed functional capacity, strength, anthropometric parameters, and body composition. The intervention effects were tested using analysis of covariance and Cohen d tests. Results: Functional capacity improved significantly in the e-CuidateChemo group compared to the control group (6-minute walk test: 62.07 [SD 130.09] m versus --26.34 [SD 82.21] m; 6-minute walk test \% distance predicted: 10.81\% [SD 22.69\%] m versus --4.60\% [SD 14.58\%]; between-group effect: P=.015 for both). The intervention group also showed significantly improved secondary outcomes such as between-group effects for abdominal (24.93 [SD 26.83] s vs --18.59 [SD 38.69] s), back (12.45 [SD 10.20] kg vs 1.39 [10.72] kg), and lower body (--2.82 [SD 3.75] s vs 1.26 [SD 2.84] s) strength; all P<.001 compared to the control group. Conclusions: This paper showed that a Web-based exercise program was effective in reversing the detriment in functional capacity and strength due to chemotherapy. Trial Registration: ClinicalTrials.gov NCT02350582; https://clinicaltrials.gov/ct2/show/NCT02350582 ", doi="10.2196/14418", url="http://www.jmir.org/2019/7/e14418/", url="http://www.ncbi.nlm.nih.gov/pubmed/31342907" } @Article{info:doi/10.2196/12453, author="Labrie, Nanon and van Dulmen, Sandra and Kersten, Jos{\'e} Marie and de Haes, JCM Hanneke and Pieterse, H. Arwen and van Weert, CM Julia and van Spronsen, Johan Dick and Smets, MA Ellen and ", title="Effective Information Provision About the Side Effects of Treatment for Malignant Lymphoma: Protocol of a Randomized Controlled Trial Using Video Vignettes", journal="JMIR Res Protoc", year="2019", month="May", day="2", volume="8", number="5", pages="e12453", keywords="physician patient relationship", keywords="health communication", keywords="information dissemination", keywords="immediate recall", keywords="trust", keywords="symptoms", keywords="clinical trial protocol", keywords="video vignettes", abstract="Background: Informing patients with cancer about the possible implications of prospective treatment is a crucial yet challenging task. Unfortunately, patients' recall of medical information is generally poor and their information needs are not met. Effective information giving entails that oncologists help patients understand and recall the implications of their treatment, meanwhile fostering a trusting physician-patient relationship. Communication strategies that are often suggested to be effective are structuring and tailoring (cognition-oriented) but also are oncologists' expressions of caring or empathy (affect-oriented). Objective: The aim of this study is to provide evidence concerning the pathways linking physician communication to (improved) consultation outcomes for patients. More specifically, the aim is to determine the effects of information structuring and information tailoring, combined with physician caring, on information recall, satisfaction with information, and trust in the physician (primary objective) and on symptom distress (secondary objective). Methods: A randomized controlled trial, systematically testing the effects of information structuring and information tailoring, each combined with caring, in 2 video-vignette experiments (2{\texttimes}2 and 2{\texttimes}2{\texttimes}2 design). Using an online survey platform, participants will be randomly allocated (blinded) to 1 of 12 conditions in which they are asked to view a video vignette (intervention) in which an oncologist discusses a treatment plan for malignant lymphoma with a patient. The independent variables of interest are systematically varied across conditions. The outcome measures are assessed in a survey, using validated instruments. Study participants are (former) patients with cancer and their relatives recruited via online panels and patient organizations. This protocol discusses the trial design, including the video-vignette design, intervention pretesting, and a pilot study. Results: Data collection has now been completed, and preliminary analyses will be available in Spring 2019. A total of 470 participants completed the first part of the survey and were randomized to receive the intervention. Conclusions: The results of the proposed trial will provide evidence concerning the pathways linking physician information, giving skills to (improved) consultation outcomes for patients. Trial Registration: Netherlands Trial Register NTR6153; https://www.trialregister.nl/trial/6022 (Archived by Webcite at http://www.webcitation.org/76xVV9xC8). International Registered Report Identifier (IRRID): DERR1-10.2196/12453 ", doi="10.2196/12453", url="http://www.researchprotocols.org/2019/5/e12453/" } @Article{info:doi/10.2196/jmir.9958, author="Prince, M. Rebecca and Soung Yee, Anthony and Parente, Laura and Enright, A. Katherine and Grunfeld, Eva and Powis, Melanie and Husain, Amna and Gandhi, Sonal and Krzyzanowska, K. Monika", title="User-Centered Design of a Web-Based Tool to Support Management of Chemotherapy-Related Toxicities in Cancer Patients", journal="J Med Internet Res", year="2019", month="Mar", day="28", volume="21", number="3", pages="e9958", keywords="prototype", keywords="Web-based tool", keywords="toxicity management", keywords="chemotherapy", keywords="self-management", abstract="Background: Cancer patients receiving chemotherapy have high symptom needs that can negatively impact quality of life and result in high rates of unplanned acute care visits. Remote monitoring tools may improve symptom management in this patient population. Objective: This study aimed to design a prototype tool to facilitate remote management of chemotherapy-related toxicities. Methods: User needs were assessed using a participatory, user-centered design methodology that included field observation, interviews, and focus groups, and then analyzed using affinity diagramming. Participants included oncology patients, caregivers, and health care providers (HCPs) including medical oncologists, oncology nurses, primary care physicians, and pharmacists in Ontario, Canada. Overarching themes informed development of a Web-based prototype, which was further refined over 2 rounds of usability testing with end users. Results: Overarching themes were derived from needs assessments, which included 14 patients, 1 caregiver, and 12 HCPs. Themes common to both patients and HCPs included gaps and barriers in current systems, need for decision aids, improved communication and options in care delivery, secure access to credible and timely information, and integration into existing systems. In addition, patients identified missed opportunities, care not meeting their needs, feeling overwhelmed and anxious, and wanting to be more empowered. HCPs identified accountability for patient management as an issue. These themes informed development of a Web-based prototype (bridges), which included toxicity tracking, self-management advice, and HCP communication functionalities. Usability testing with 11 patients and 11 HCPs was generally positive; however, identified challenges included tool integration into existing workflows, need for standardized toxicity self-management advice, issues of privacy and consent, and patient-tailored information. Conclusions: Web-based tools integrating just-in-time self-management advice and HCP support into routine care may address gaps in systems for managing chemotherapy-related toxicities. Attention to the integration of new electronic tools into self-care by patients and practice was a strong theme for both patients and HCP participants and is a key issue that needs to be addressed for wide-scale adoption. ", doi="10.2196/jmir.9958", url="http://www.jmir.org/2019/3/e9958/", url="http://www.ncbi.nlm.nih.gov/pubmed/30920373" } @Article{info:doi/10.2196/10883, author="Pearson, E. Stephanie and Taylor, John and Hoare, J. Derek and Patel, Poulam and Baguley, M. David", title="Exploring the Experiences of Cancer Patients With Chemotherapy-Induced Ototoxicity: Qualitative Study Using Online Health Care Forums", journal="JMIR Cancer", year="2019", month="Mar", day="14", volume="5", number="1", pages="e10883", keywords="quality of life", keywords="neoplasms", keywords="drug-related side effects and adverse reactions", keywords="hearing loss", keywords="tinnitus", keywords="online social networking", keywords="internet", keywords="eHealth", keywords="social support", 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. ", doi="10.2196/10883", url="http://cancer.jmir.org/2019/1/e10883/", url="http://www.ncbi.nlm.nih.gov/pubmed/30869640" }