JMIR Cancer最新文献

{"title":"Correction: The Patient Experience of Acute Lymphoblastic Leukemia and Its Treatment: Social Media Review.","authors":"Rebecca Crawford, Slaven Sikirica, Ross Morrison, Joseph C Cappelleri, Alexander Russell-Smith, Richa Shah, Helen Chadwick, Lynda Doward","doi":"10.2196/54665","DOIUrl":"10.2196/54665","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.2196/39852.].</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":2.8,"publicationDate":"2023-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10768719/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138832159","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Feasibility of a Health Coach Intervention to Reduce Sitting Time and Improve Physical Functioning Among Breast Cancer Survivors: Pilot Intervention Study.","authors":"Rowena M Tam, Rong W Zablocki, Chenyu Liu, Hari K Narayan, Loki Natarajan, Andrea Z LaCroix, Lindsay Dillon, Eleanna Sakoulas, Sheri J Hartman","doi":"10.2196/49934","DOIUrl":"10.2196/49934","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Sedentary behavior among breast cancer survivors is associated with increased risk of poor physical function and worse quality of life. While moderate to vigorous physical activity can improve outcomes for cancer survivors, many are unable to engage in that intensity of physical activity. Decreasing sitting time may be a more feasible behavioral target to potentially mitigate the impact of cancer and its treatments.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;The purpose of this study was to investigate the feasibility and preliminary impact of an intervention to reduce sitting time on changes to physical function and quality of life in breast cancer survivors, from baseline to a 3-month follow-up.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Female breast cancer survivors with self-reported difficulties with physical function received one-on-one, in-person personalized health coaching sessions aimed at reducing sitting time. At baseline and follow-up, participants wore the activPAL (thigh-worn accelerometer; PAL Technologies) for 3 months and completed physical function tests (4-Meter Walk Test, Timed Up and Go, and 30-Second Chair Stand) and Patient-Reported Outcomes Measurement Information System (PROMIS) self-reported outcomes. Changes in physical function and sedentary behavior outcomes were assessed by linear mixed models.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;On average, participants (n=20) were aged 64.5 (SD 9.4) years; had a BMI of 30.4 (SD 4.5) kg/m&lt;sup&gt;2&lt;/sup&gt;; and identified as Black or African American (n=3, 15%), Hispanic or Latina (n=4, 20%), and non-Hispanic White (n=14, 55%). Average time since diagnosis was 5.8 (SD 2.2) years with participants receiving chemotherapy (n=8, 40%), radiotherapy (n=18, 90%), or endocrine therapy (n=17, 85%). The intervention led to significant reductions in sitting time: activPAL average daily sitting time decreased from 645.7 (SD 72.4) to 532.7 (SD 142.1; β=-112.9; P=.001) minutes and average daily long sitting bouts (bout length ≥20 min) decreased from 468.3 (SD 94.9) to 366.9 (SD 150.4; β=-101.4; P=.002) minutes. All physical function tests had significant improvements: on average, 4-Meter Walk Test performance decreased from 4.23 (SD 0.95) to 3.61 (SD 2.53; β=-.63; P=.002) seconds, Timed Up and Go performance decreased from 10.30 (SD 3.32) to 8.84 (SD 1.58; β=-1.46; P=.003) seconds, and 30-Second Chair Stand performance increased from 9.75 (SD 2.81) to 13.20 completions (SD 2.53; β=3.45; P&lt;.001). PROMIS self-reported physical function score improved from 44.59 (SD 4.40) to 47.12 (SD 5.68; β=2.53; P=.05) and average fatigue decreased from 52.51 (SD 10.38) to 47.73 (SD 8.43; β=-4.78; P=.02).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;This 3-month pilot study suggests that decreasing time spent sitting may be helpful for breast cancer survivors experiencing difficulties with physical function and fatigue. Reducing sitting time is a novel and potentially more feasible approach to improving health and qua","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2023-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10762618/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138811833","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and Promotion of an mHealth App for Adolescents Based on the European Code Against Cancer: Retrospective Cohort Study.","authors":"Meritxell Mallafré-Larrosa, Ginevra Papi, Antoni Trilla, David Ritchie","doi":"10.2196/48040","DOIUrl":"10.2196/48040","url":null,"abstract":"<p><strong>Background: </strong>Mobile health technologies, underpinned by scientific evidence and ethical standards, exhibit considerable promise and potential in actively engaging consumers and patients while also assisting health care providers in delivering cancer prevention and care services. The WASABY mobile app was conceived as an innovative, evidence-based mobile health tool aimed at disseminating age-appropriate messages from the European Code Against Cancer (ECAC) to adolescents across Europe.</p><p><strong>Objective: </strong>This study aims to assess the outcomes of the design, development, and promotion of the WASABY app through a 3-pronged evaluation framework that encompasses data on social media promotion, app store traffic, and user engagement.</p><p><strong>Methods: </strong>The WASABY app's content, cocreated with cancer-focused civil society organizations across 6 European countries, drew upon scientific evidence from the ECAC. The app's 10 modules were designed using the health belief model and a gamification conceptual framework characterized by spaced repetition learning techniques, refined through 2 rounds of testing. To evaluate the effectiveness of the app, we conducted a retrospective cohort study using the WASABY app's user database registered from February 4 to June 30, 2021, using a 3-pronged assessment framework: social media promotion, app store traffic, and user engagement. Descriptive statistics and association analyses explored the relationship between sociodemographic variables and user performance analytics.</p><p><strong>Results: </strong>After extensive promotion on various social media platforms and subsequent traffic to the Apple App and Google Play stores, a sample of 748 users aged between 14 and 19 years was included in the study cohort. The selected sample exhibited a mean age of 16.08 (SD 1.28) years and was characterized by a predominant representation of female users (499/748, 66.7%). Most app users identified themselves as nonsmokers (689/748, 92.1%), reported either no or infrequent alcohol consumption (432/748, 57.8% and 250/748, 33.4%, respectively), and indicated being physically active for 1 to 5 hours per week (505/748, 67.5%). In aggregate, the app's content garnered substantial interest, as evidenced by 40.8% (305/748) of users visiting each of the 10 individual modules. Notably, sex and smoking habits emerged as predictors of app completion rates; specifically, male and smoking users demonstrated a decreased likelihood of successfully completing the app's content (odds ratio 0.878, 95% CI 0.809-0.954 and odds ratio 0.835, 95% CI 0.735-0.949, respectively).</p><p><strong>Conclusions: </strong>The development and promotion of the WASABY app presents a valuable case study, illustrating the effective dissemination of evidence-based recommendations on cancer prevention within the ECAC through an innovative mobile app aimed at European adolescents. The data derived from this study provide insig","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":2.8,"publicationDate":"2023-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10716759/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138446566","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Recruitment of Patients With Cancer for a Clinical Trial Evaluating a Web-Based Psycho-Oncological Intervention: Secondary Analysis of a Diversified Recruitment Strategy in a Randomized Controlled Trial.","authors":"Angeliki Tsiouris, Anna Mayer, Jörg Wiltink, Christian Ruckes, Manfred E Beutel, Rüdiger Zwerenz","doi":"10.2196/42123","DOIUrl":"10.2196/42123","url":null,"abstract":"<p><strong>Background: </strong>Participant recruitment poses challenges in psycho-oncological intervention research, such as psycho-oncological web-based intervention studies. Strict consecutive recruitment in clinical settings provides important methodological benefits but is often associated with low response rates and reduced practicability and ecological validity. In addition to preexisting recruitment barriers, the protective measures owing to the COVID-19 pandemic restricted recruitment activities in the clinical setting since March 2020.</p><p><strong>Objective: </strong>This study aims to outline the recruitment strategy for a randomized controlled trial evaluating the unguided emotion-based psycho-oncological online self-help (epos), which combined traditional and web-based recruitment.</p><p><strong>Methods: </strong>We developed a combined recruitment strategy including traditional (eg, recruitment in clinics, medical practices, cancer counseling centers, and newspapers) and web-based recruitment (Instagram, Facebook, and web pages). Recruitment was conducted between May 2020 and September 2021. Eligible participants for this study were adult patients with any type of cancer who were currently receiving treatment or in posttreatment care. They were also required to have a good command of the German language and access to a device suitable for web-based interventions, such as a laptop or computer.</p><p><strong>Results: </strong>We analyzed data from 304 participants who were enrolled in a 17-month recruitment period using various recruitment strategies. Web-based and traditional recruitment strategies led to comparable numbers of participants (151/304, 49.7% vs 153/304, 50.3%). However, web-based recruitment required much less effort. Regardless of the recruitment strategy, the total sample did not accurately represent patients with cancer currently undergoing treatment for major types of cancer in terms of various sociodemographic characteristics, including but not limited to sex and age. However, among the web-recruited study participants, the proportion of female participants was even higher (P<.001), the mean age was lower (P=.005), private internet use was higher (on weekdays: P=.007; on weekends: P=.02), and the number of those who were currently under treatment was higher (P=.048). Other demographic and medical characteristics revealed no significant differences between the groups. The majority of participants registered as self-referred (236/296, 79.7%) instead of having followed the recommendation of or study invitation from a health care professional.</p><p><strong>Conclusions: </strong>The combined recruitment strategy helped overcome general and COVID-19-specific recruitment barriers and provided the targeted participant number. Social media recruitment was the most efficient individual recruitment strategy for participant enrollment. Differences in some demographic and medical characteristics emerged, which should be cons","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":2.8,"publicationDate":"2023-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10714264/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44966154","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Impact of Digital Technology on Self-Management in Cancer: Systematic Review.","authors":"Dwight Su Chun Lim, Benedict Kwok, Patricia Williams, Bogda Koczwara","doi":"10.2196/45145","DOIUrl":"10.2196/45145","url":null,"abstract":"<p><strong>Background: </strong>Self-management (SM) plays an important role in supporting patients' adaptation to and management of the symptoms of chronic diseases. Cancer is a chronic disease that requires patients to have responsibility in management. Digital technology has the potential to enhance SM support, but there is little data on what SM skills are most commonly supported by digital technology.</p><p><strong>Objective: </strong>This review aimed to examine the SM core skills that were enabled and supported by digital interventions in people with cancer and identify any predictors of the effect of digital health intervention on SM core skills.</p><p><strong>Methods: </strong>Three electronic databases (MEDLINE, Scopus, and CINAHL) were searched for papers, published from January 2010 to February 2022, that reported randomized controlled trials (RCTs) involving patients with cancer or survivors of cancer where a digital technology intervention was evaluated and change in 1 or more SM core skills was a measured outcome.</p><p><strong>Results: </strong>This systematic review resulted in 12 studies that were eligible to identify which SM core skills were enabled and supported by digital intervention. The total number of participants in the 12 studies was 2627. The most common SM core skills targeted by interventions were decision-making, goal setting, and partnering with health professionals. A total of 8 (67%) out of 12 RCTs demonstrated statistically significant improvement in outcomes including self-efficacy, survivorship care knowledge and attitude, quality of life, increased knowledge of treatment, and emotional and social functioning. A total of 5 (62%) out of 8 positive RCTs used theoretical considerations in their study design; whereas in 1 (25%) out of 4 negative RCTs, theoretical considerations were used. In 3 studies, some factors were identified that were associated with the development of SM core skills, which included younger age (regression coefficient [RC]=-0.06, 95% CI -0.10 to -0.02; P=.002), computer literacy (RC=-0.20, 95% CI -0.37 to -0.03; P=.02), completing cancer treatment (Cohen d=0.31), male sex (SD 0.34 in social functioning; P=.009), higher education (SD 0.19 in social functioning; P=.04), and being a recipient of chemotherapy (SD 0.36 in depression; P=.008). In all 3 studies, there were no shared identical factors that supported the development of SM core skills, whereby each study had a unique set of factors that supported the development of SM core skills.</p><p><strong>Conclusions: </strong>Digital technology for patients with cancer appears to improve SM core skills including decision-making, goal setting, and partnering with health care partners. This effect is greater in people who are younger, male, educated, highly computer literate, completing cancer treatment, or a recipient of chemotherapy. Future research should focus on targeting multiple SM core skills and identifying predictors of the effect of d","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":2.8,"publicationDate":"2023-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10701654/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138292037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Noninvasive Staging of Lymph Node Status in Breast Cancer Using Machine Learning: External Validation and Further Model Development.","authors":"Malin Hjärtström, Looket Dihge, Pär-Ola Bendahl, Ida Skarping, Julia Ellbrant, Mattias Ohlsson, Lisa Rydén","doi":"10.2196/46474","DOIUrl":"10.2196/46474","url":null,"abstract":"<p><strong>Background: </strong>Most patients diagnosed with breast cancer present with a node-negative disease. Sentinel lymph node biopsy (SLNB) is routinely used for axillary staging, leaving patients with healthy axillary lymph nodes without therapeutic effects but at risk of morbidities from the intervention. Numerous studies have developed nodal status prediction models for noninvasive axillary staging using postoperative data or imaging features that are not part of the diagnostic workup. Lymphovascular invasion (LVI) is a top-ranked predictor of nodal metastasis; however, its preoperative assessment is challenging.</p><p><strong>Objective: </strong>This paper aimed to externally validate a multilayer perceptron (MLP) model for noninvasive lymph node staging (NILS) in a large population-based cohort (n=18,633) and develop a new MLP in the same cohort. Data were extracted from the Swedish National Quality Register for Breast Cancer (NKBC, 2014-2017), comprising only routinely and preoperatively available documented clinicopathological variables. A secondary aim was to develop and validate an LVI MLP for imputation of missing LVI status to increase the preoperative feasibility of the original NILS model.</p><p><strong>Methods: </strong>Three nonoverlapping cohorts were used for model development and validation. A total of 4 MLPs for nodal status and 1 LVI MLP were developed using 11 to 12 routinely available predictors. Three nodal status models were used to account for the different availabilities of LVI status in the cohorts and external validation in NKBC. The fourth nodal status model was developed for 80% (14,906/18,663) of NKBC cases and validated in the remaining 20% (3727/18,663). Three alternatives for imputation of LVI status were compared. The discriminatory capacity was evaluated using the validation area under the receiver operating characteristics curve (AUC) in 3 of the nodal status models. The clinical feasibility of the models was evaluated using calibration and decision curve analyses.</p><p><strong>Results: </strong>External validation of the original NILS model was performed in NKBC (AUC 0.699, 95% CI 0.690-0.708) with good calibration and the potential of sparing 16% of patients with node-negative disease from SLNB. The LVI model was externally validated (AUC 0.747, 95% CI 0.694-0.799) with good calibration but did not improve the discriminatory performance of the nodal status models. A new nodal status model was developed in NKBC without information on LVI (AUC 0.709, 95% CI: 0.688-0.729), with excellent calibration in the holdout internal validation cohort, resulting in the potential omission of 24% of patients from unnecessary SLNBs.</p><p><strong>Conclusions: </strong>The NILS model was externally validated in NKBC, where the imputation of LVI status did not improve the model's discriminatory performance. A new nodal status model demonstrated the feasibility of using register data comprising only the variables availa","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":2.8,"publicationDate":"2023-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138048166","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Open-Source, Step-Counting Algorithm for Smartphone Data Collected in Clinical and Nonclinical Settings: Algorithm Development and Validation Study.","authors":"Marcin Straczkiewicz, Nancy L Keating, Embree Thompson, Ursula A Matulonis, Susana M Campos, Alexi A Wright, Jukka-Pekka Onnela","doi":"10.2196/47646","DOIUrl":"10.2196/47646","url":null,"abstract":"<p><strong>Background: </strong>Step counts are increasingly used in public health and clinical research to assess well-being, lifestyle, and health status. However, estimating step counts using commercial activity trackers has several limitations, including a lack of reproducibility, generalizability, and scalability. Smartphones are a potentially promising alternative, but their step-counting algorithms require robust validation that accounts for temporal sensor body location, individual gait characteristics, and heterogeneous health states.</p><p><strong>Objective: </strong>Our goal was to evaluate an open-source, step-counting method for smartphones under various measurement conditions against step counts estimated from data collected simultaneously from different body locations (\"cross-body\" validation), manually ascertained ground truth (\"visually assessed\" validation), and step counts from a commercial activity tracker (Fitbit Charge 2) in patients with advanced cancer (\"commercial wearable\" validation).</p><p><strong>Methods: </strong>We used 8 independent data sets collected in controlled, semicontrolled, and free-living environments with different devices (primarily Android smartphones and wearable accelerometers) carried at typical body locations. A total of 5 data sets (n=103) were used for cross-body validation, 2 data sets (n=107) for visually assessed validation, and 1 data set (n=45) was used for commercial wearable validation. In each scenario, step counts were estimated using a previously published step-counting method for smartphones that uses raw subsecond-level accelerometer data. We calculated the mean bias and limits of agreement (LoA) between step count estimates and validation criteria using Bland-Altman analysis.</p><p><strong>Results: </strong>In the cross-body validation data sets, participants performed 751.7 (SD 581.2) steps, and the mean bias was -7.2 (LoA -47.6, 33.3) steps, or -0.5%. In the visually assessed validation data sets, the ground truth step count was 367.4 (SD 359.4) steps, while the mean bias was -0.4 (LoA -75.2, 74.3) steps, or 0.1%. In the commercial wearable validation data set, Fitbit devices indicated mean step counts of 1931.2 (SD 2338.4), while the calculated bias was equal to -67.1 (LoA -603.8, 469.7) steps, or a difference of 3.4%.</p><p><strong>Conclusions: </strong>This study demonstrates that our open-source, step-counting method for smartphone data provides reliable step counts across sensor locations, measurement scenarios, and populations, including healthy adults and patients with cancer.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":2.8,"publicationDate":"2023-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10687676/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"107592474","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Content Quality of YouTube Videos About Metastatic Breast Cancer in Young Women: Systematic Assessment.","authors":"Nina Morena, Yitzchok Ahisar, Xena Wang, Diana Nguyen, Carrie A Rentschler, Ari N Meguerditchian","doi":"10.2196/45101","DOIUrl":"10.2196/45101","url":null,"abstract":"<p><strong>Background: </strong>Young women with metastatic breast cancer (MBC) are part of a digitally connected generation yet are underserved in terms of information needs. YouTube is widely used to find and identify health information. The accessibility of health-related content on social media together with the rare and marginalized experiences of young women with MBC and the digital media practices of younger generations imply a considerable likelihood that young women with MBC will seek information and community on the internet.</p><p><strong>Objective: </strong>This study aims to assess the content quality of MBC YouTube videos and to identify themes in the experiences of young women with MBC based on YouTube videos.</p><p><strong>Methods: </strong>A systematic assessment of MBC YouTube videos using the search term \"metastatic breast cancer young\" was conducted in August 2021. The search was performed in an incognito browser and with no associated YouTube or Google account. Search results were placed in order from most to least views. Title, date uploaded, length, poster identity, number of likes, and number of comments were collected. Understandability and actionability were assessed using the Patient Education Materials Assessment Tool (PEMAT); information reliability and quality were assessed with DISCERN. Themes, sponsorships, and health care professionals' and patients' narratives were reported.</p><p><strong>Results: </strong>A total of 101 videos were identified. Of these, 78.2% (n=79) included sponsorships. The mean PEMAT scores were 78.8% (SD 15.3%) and 43.1% (SD 45.2%) for understandability and actionability, respectively. The mean DISCERN score was 2.44 (SD 0.7) out of 5. Identified themes included treatment (n=67, 66.3%), family relationship (n=46, 45.5%), and motherhood (n=38, 37.6%).</p><p><strong>Conclusions: </strong>YouTube videos about young women with MBC are highly understandable but demonstrate moderate rates of actionability, with low reliability and quality scores. Many have a commercial bias. While web-based materials have limitations, their potential to provide patient support is not fully developed. By acknowledging their patients' media habits, health care professionals can further develop a trusting bond with their patients, provide a space for open and honest discussions of web-based materials, and avoid any potential instances of confusion caused by misleading, inaccurate, or false web-based materials.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":2.8,"publicationDate":"2023-11-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10685279/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41157805","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding the Needs and Lived Experiences of Patients With Graft-Versus-Host Disease: Real-World European Public Social Media Listening Study.","authors":"Zinaida Perić, Grzegorz Basak, Christian Koenecke, Ivan Moiseev, Jyoti Chauhan, Sathyaraj Asaithambi, Alexandros Sagkriotis, Sibel Gunes, Olaf Penack","doi":"10.2196/42905","DOIUrl":"10.2196/42905","url":null,"abstract":"<p><strong>Background: </strong>Graft-versus-host disease (GVHD) is the major cause of short- and long-term morbidity and mortality after allogeneic hematopoietic stem cell transplantation. Treatment options beyond corticosteroid therapy remain limited, and prolonged treatment often leads to impaired quality of life (QoL). A better understanding of the needs and experiences of patients with GVHD is required to improve patient care.</p><p><strong>Objective: </strong>The aim of this study is to explore different social media (SM) channels for gathering and analyzing the needs and experiences of patients and other stakeholders across 14 European countries.</p><p><strong>Methods: </strong>We conducted a retrospective analysis of SM data from the public domain. The Talkwalker social analytics tool collected data from open-access forums, blogs, and various social networking sites using predefined search strings. The raw data set derived from the aggregator tool was automatically screened for the relevancy of posts, generating the curated data set that was manually reviewed to identify posts that fell within the predefined inclusion and exclusion criteria. This final data set was then used for the deep-dive analysis.</p><p><strong>Results: </strong>A total of 9016 posts relating to GVHD were identified between April 2019 and April 2021. Deduplication and relevancy checks resulted in 325 insightful posts, with Twitter contributing 250 (77%) posts; blogs, 49 (15%) posts; forums, 13 (4%) posts; Facebook, 7 (2%) posts; and Instagram and YouTube, 4 (1%) posts. Patients with GVHD were the primary stakeholders, contributing 63% of all SM posts. In 234 posts, treatment was the most discussed stage of the patient journey (68%), followed by symptoms (33%), and diagnosis and tests (21%). Among treatment-related posts (n=159), steroid therapy was most frequently reported (54/159, 34%). Posts relating to treatment features (n=110) identified efficacy (45/110, 41%), side effects (38/110, 35%), and frequency and dosage (32/110, 29%), as the most frequently discussed features. Symptoms associated with GVHD were described in 24% (77/325) of posts, including skin-related conditions (49/77, 64%), dry eyes or vision change (13/77, 17%), pain and cramps (16/77, 21%), and fatigue or muscle weakness (12/77, 16%). The impacts of GVHD on QoL were discussed in 51% (165/325) of all posts, with the emotional, physical and functional, social, and financial impacts mentioned in 69% (114/165), 50% (82/165), 5% (8/165), and 2% (3/165) of these posts, respectively. Unmet needs were reported by patients or caregivers in 24% (77/325) of analyzed conversations, with treatment-related side effects being the most common (35/77, 45%) among these posts.</p><p><strong>Conclusions: </strong>SM listening is a useful tool to identify medical needs. Treatment of GVHD, including treatment-related side effects, as well as its emotional and physical impact on QoL, are the major topics that GVHD stake","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":2.8,"publicationDate":"2023-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674148/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"72015695","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Moving Forward With Telehealth in Cancer Rehabilitation: Patient Perspectives From a Mixed Methods Study.","authors":"Linda O'Neill, Louise Brennan, Grainne Sheill, Deirdre Connolly, Emer Guinan, Juliette Hussey","doi":"10.2196/46077","DOIUrl":"10.2196/46077","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic accelerated the use of telehealth in cancer care and highlighted the potential of telehealth as a means of delivering the much-needed rehabilitation services for patients living with the side effects of cancer and its treatments.</p><p><strong>Objective: </strong>This mixed methods study aims to explore patients' experiences of telehealth and their preferences regarding the use of telehealth for cancer rehabilitation to inform service development.</p><p><strong>Methods: </strong>The study was completed in 2 phases from October 2020 to November 2021. In phase 1, an anonymous survey (web- and paper-based) exploring the need, benefits, barriers, facilitators, and preferences for telehealth cancer rehabilitation was distributed to survivors of cancer in Ireland. In phase 2, survivors of cancer were invited to participate in semistructured interviews exploring their experiences of telehealth and its role in cancer rehabilitation. Interviews were conducted via telephone or video call following an interview guide informed by the results of the survey and transcribed verbatim, and reflexive thematic analysis was performed using a qualitative descriptive approach.</p><p><strong>Results: </strong>A total of 48 valid responses were received. The respondents were at a median of 26 (range 3-256) months after diagnosis, and 23 (48%) of the 48 participants had completed treatment. Of the 48 respondents, 31 (65%) reported using telehealth since the start of the pandemic, 15 (31%) reported having experience with web-based cancer rehabilitation, and 43 (90%) reported a willingness for web-based cancer rehabilitation. A total of 26 (54%) of the 48 respondents reported that their views on telehealth had changed positively since the start of the pandemic. Semistructured interviews were held with 18 survivors of cancer. The mean age of the participants was 58.9 (SD 8.24) years, 56% (10/18) of the participants were female, and 44% (8/18) of the participants were male. Reflexive thematic analysis identified 5 key themes: telehealth improves accessibility to cancer rehabilitation for some but is a barrier for others, lived experiences of the benefits of telehealth in survivorship, the value of in-person health care, telehealth in cancer care and COVID-19 (from novelty to normality), and the future of telehealth in cancer rehabilitation.</p><p><strong>Conclusions: </strong>Telehealth is broadly welcomed as a mode of cancer rehabilitation for patients living with and beyond cancer in Ireland. However, issues regarding accessibility and the importance of in-person care must be acknowledged. Factors of convenience, time savings, and cost savings indicate that telehealth interventions are a desirable patient-centered method of delivering care when performed in suitable clinical contexts and with appropriate populations.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":2.8,"publicationDate":"2023-11-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10667979/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522907","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}