JMIR CancerPub Date : 2024-11-22DOI: 10.2196/53440
Carol Ann Blank, Sarah Biedka, Abigail Montalmant, Katelyn Saft, Miranda Lape, Kate Mao, Joke Bradt, Kevin T Liou
{"title":"Scope, Findability, and Quality of Information About Music-Based Interventions in Oncology: Quantitative Content Analysis of Public-Facing Websites at National Cancer Institute-Designated Cancer Centers.","authors":"Carol Ann Blank, Sarah Biedka, Abigail Montalmant, Katelyn Saft, Miranda Lape, Kate Mao, Joke Bradt, Kevin T Liou","doi":"10.2196/53440","DOIUrl":"https://doi.org/10.2196/53440","url":null,"abstract":"<p><strong>Background: </strong>Music-based interventions (MBIs) are evidence-based, nonpharmacological treatments that include music therapy (MT) delivered by board-certified music therapists, as well as music services (MS) delivered by other health professionals and volunteers. Despite MBI's growing evidence base in cancer symptom management, it remains unclear how MBI-related information is presented to the public. Over 80% of people with cancer use the internet to find health-related information. In the United States, the National Cancer Institute (NCI) identifies certain Cancer Centers (CCs) as NCI-designated CCs or Comprehensive Cancer Centers (CCCs) based on their excellence in research. As NCI-designated CCs and CCCs are considered the gold standard in cancer care, their websites are viewed by the public as important sources of information.</p><p><strong>Objective: </strong>We aimed to determine scope, findability, and quality of MBI-related information on public-facing websites of NCI-designated CCs/CCCs.</p><p><strong>Methods: </strong>We reviewed 64 NCI-designated CC/CCC websites (excluding basic laboratories) between November 2022 and January 2023. We extracted data on the scope of information: (1) type of MBI offered (MT or MS), (2) format (individual, group), (3) method of delivery (in person or remotely delivered), (4) setting (inpatient or outpatient), (5) target population (pediatric or adult), (6) MBI practitioner qualifications, (7) clinical indications or benefits, (8) presence of testimonials, (9) cost, and (10) scheduling or referral information. We also extracted data on findability (ie, presence of direct link or drop-down menu and the number of clicks to locate MBI-related information). Based on the scope and findability data, we rated the information quality as high, moderate, or low using an adapted scale informed by prior research.</p><p><strong>Results: </strong>Thirty-one (48%) of the 64 CC/CCCs described MBIs on their websites. Of these, 6 (19%) mentioned both MT and MS, 16 (52%) mentioned MT only, and 9 (29%) mentioned MS only. The most common format was hybrid, involving individuals and groups (n=20, 65%). The most common delivery method was in person (n=16, 52%). The most common target population was adults (n=12, 39%). The most common MBI practitioners were board-certified music therapists (n=21, 68%). The most described indications or benefits were psychological. Twenty-eight (90%) websites lacked testimonials, and 26 (84%) lacked cost information. Twenty-six (84%) websites provided scheduling or referral information. MBI-related information was found with an average of 4 (SD 1) clicks. Nine (29%) websites were of high quality, 18 (58%) were moderate, and 4 (13%) were low.</p><p><strong>Conclusions: </strong>Based on public websites, MBIs were most commonly delivered in person by board-certified music therapists to outpatient and inpatient adults, using individual and group formats to provide psychological bene","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"10 ","pages":"e53440"},"PeriodicalIF":3.3,"publicationDate":"2024-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142711464","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
JMIR CancerPub Date : 2024-11-06DOI: 10.2196/51936
Brendan Noggle, Hui Cheng, Mohamadi Sarkar
{"title":"Oral Cancer Incidence Among Adult Males With Current or Former Use of Cigarettes or Smokeless Tobacco: Population-Based Study.","authors":"Brendan Noggle, Hui Cheng, Mohamadi Sarkar","doi":"10.2196/51936","DOIUrl":"10.2196/51936","url":null,"abstract":"<p><strong>Background: </strong>Tobacco use has been identified as a risk factor for oral cancer worldwide. However, relative oral cancer incidence among adults who smoke cigarettes, use smokeless tobacco products (ST), have transitioned from cigarettes to ST, quit cigarettes and/or ST (\"quitters\"), or never used tobacco has not been well studied.</p><p><strong>Objective: </strong>We aim to present population-based oral cancer incidence rates for adults who smoke cigarettes, use ST, are former smokers who now use ST, or quit.</p><p><strong>Methods: </strong>We estimated cross-sectional incidence rates and incidence rate ratios (IRRs) using data from statewide cancer registries (Colorado, Florida, North Carolina, and Texas) and population counts derived from national surveys using combined data from 2014-2017. A random-effect meta-analysis approach was used to summarize estimates among these groups, based on multiple imputation-based IRR estimates by state and age group while considering potential heterogeneity.</p><p><strong>Results: </strong>A total of 19,536 oral cancer cases were identified among adult males 35 years and older in the study geographies and period. The oral cancer incidence rate among adults who smoke was significantly higher than the ST group (2.6 times higher, 95% CI 2.0-3.3, P<.001), 3.6 (95% CI 3.2-4.1, P<.001) times higher than the never users, and 2.4 (95% CI 1.8-3.1, P<.001) times higher compared to former smokers who now use ST. The IRR among the ST group relative to never users was 1.4 (95% CI 1.1-1.9, P=.02). The IRR between former smokers who now use ST and those who quit was 1.4 (95% CI 1.0-2.1, P=.08).</p><p><strong>Conclusions: </strong>Findings from this population-based study with a large number of oral cancer cases support significantly high oral cancer incidence among adults who smoke and a lower risk of oral cancer incidence among never users, quitters, users of ST, and former smokers who now use ST compared to cigarettes. Future studies with detailed control of tobacco history and other relevant confounders are needed to confirm these findings.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"10 ","pages":"e51936"},"PeriodicalIF":3.3,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11560140/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142591885","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}
JMIR CancerPub Date : 2024-11-05DOI: 10.2196/57510
Joran Geeraerts, Lara Pivodic, Lise Rosquin, Eline Naert, Geert Crombez, Mark De Ridder, Lieve Van den Block
{"title":"Uncovering the Daily Experiences of People Living With Advanced Cancer Using an Experience Sampling Method Questionnaire: Development, Content Validation, and Optimization Study.","authors":"Joran Geeraerts, Lara Pivodic, Lise Rosquin, Eline Naert, Geert Crombez, Mark De Ridder, Lieve Van den Block","doi":"10.2196/57510","DOIUrl":"10.2196/57510","url":null,"abstract":"<p><strong>Background: </strong>The experience sampling method (ESM), a self-report method that typically uses multiple assessments per day, can provide detailed knowledge of the daily experiences of people with cancer, potentially informing oncological care. The use of the ESM among people with advanced cancer is limited, and no validated ESM questionnaires have been developed specifically for oncology.</p><p><strong>Objective: </strong>This study aims to develop, content validate, and optimize the digital Experience Sampling Method for People Living With Advanced Cancer (ESM-AC) questionnaire, covering multidimensional domains and contextual factors.</p><p><strong>Methods: </strong>A 3-round mixed methods study was designed in accordance with the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) and the European Organization for Research and Treatment of Cancer guidelines. The study included semistructured interviews with 43 people with stage IV breast cancer or stage III to IV lung cancer and 8 health care professionals. Round 1 assessed the appropriateness, relative importance, relevance, and comprehensiveness of an initial set of ESM items that were developed based on the existing questionnaires. Round 2 tested the comprehensibility of ESM items. Round 3 tested the usability of the digital ESM-AC questionnaire using the m-Path app. Analyses included descriptive statistics and qualitative content analysis.</p><p><strong>Results: </strong>Following the first round, we developed an initial core set of 68 items (to be used with all patients) and a supplementary set (optional; patients select items), both covering physical, psychological, social, spiritual-existential, and global well-being domains and concurrent contexts in which experiences occur. We categorized items to be assessed multiple times per day as momentary items (eg, \"At this moment, I feel tired\"), once a day in the morning as morning items (eg, \"Last night, I slept well\"), or once a day in the evening as evening items (eg, \"Today, I felt hopeful\"). We used participants' evaluations to optimize the questionnaire items, the digital app, and its onboarding manual. This resulted in the ESM-AC questionnaire, which comprised a digital core questionnaire containing 31 momentary items, 2 morning items, and 7 evening items and a supplementary set containing 39 items. Participants largely rated the digital questionnaire as \"easy to use,\" with an average score of 4.5 (SD 0.5) on a scale from 1 (\"completely disagree\") to 5 (\"completely agree\").</p><p><strong>Conclusions: </strong>We developed the ESM-AC questionnaire, a content-validated digital questionnaire for people with advanced breast or lung cancer. It showed good usability when administered on smartphone devices. Future research should evaluate the potential of this ESM tool to uncover daily experiences of people with advanced breast or lung cancer, explore its clinical utility, and extend its vali","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"10 ","pages":"e57510"},"PeriodicalIF":3.3,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11576598/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142584645","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}
JMIR CancerPub Date : 2024-10-30DOI: 10.2196/57199
Mahtab Jafari, Alex Shahverdian, Gelareh Sadigh, Richard A Van Etten
{"title":"Impact of Patient Personality on Adherence to Oral Anticancer Medications: An Opportunity?","authors":"Mahtab Jafari, Alex Shahverdian, Gelareh Sadigh, Richard A Van Etten","doi":"10.2196/57199","DOIUrl":"10.2196/57199","url":null,"abstract":"<p><p>Adherence to prescribed oral anticancer therapy is an important determinant of patient outcomes, including progression-free and overall survival. While many factors (eg, medication side effects and out-of-pocket costs, problems with insurance authorization, and timely medication refills) can affect adherence, one that is relatively unexplored is the impact of a patient's attitude and personality. Patient personality influences medication adherence and persistence in nonmalignant chronic conditions such as cardiovascular disease and diabetes. In breast cancer and chronic myeloid leukemia, studies suggest that personality also affects adherence to oral chemotherapy which can be targeted to improve adherence. In this viewpoint, we highlight the opportunity of incorporating patient personality as interventions to oral cancer therapy adherence and discuss current barriers to implementation.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"10 ","pages":"e57199"},"PeriodicalIF":3.3,"publicationDate":"2024-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11561440/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142548196","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}
JMIR CancerPub Date : 2024-10-25DOI: 10.2196/53443
Maria A Lopez-Olivo, Maria E Suarez-Almazor, Gabrielle F Duhon, McKenna Cherry, Huifang Lu, Cassandra Calabrese, Mehmet Altan, Hussain Tawbi, Alexa Meara, Clifton O Bingham, Adi Diab, Viola B Leal, Robert J Volk
{"title":"Development of an Educational Website for Patients With Cancer and Preexisting Autoimmune Diseases Considering Immune Checkpoint Blockers: Usability and Acceptability Study.","authors":"Maria A Lopez-Olivo, Maria E Suarez-Almazor, Gabrielle F Duhon, McKenna Cherry, Huifang Lu, Cassandra Calabrese, Mehmet Altan, Hussain Tawbi, Alexa Meara, Clifton O Bingham, Adi Diab, Viola B Leal, Robert J Volk","doi":"10.2196/53443","DOIUrl":"10.2196/53443","url":null,"abstract":"<p><strong>Background: </strong>Patients with cancer and an underlying autoimmune disease who are considering immune checkpoint blockers (ICBs) need to know about the benefits and risks of severe immune-related adverse events and flares of the autoimmune condition.</p><p><strong>Objective: </strong>This study aims to develop and alpha test an educational website for patients with cancer.</p><p><strong>Methods: </strong>Learning topics, images, and website architecture (including flow and requirements) were developed and iteratively reviewed by members of a community scientist program, a patient advisory group, and content experts. Alpha testing was performed, measuring the site's usability using the Suitability Assessment of Materials and its acceptability using the Ottawa Acceptability Measure.</p><p><strong>Results: </strong>The website included a home page; general information about ICBs; comprehensive modules on the benefits and risks of ICBs for patients with cancer and preexisting autoimmune diseases; general wellness information; and features such as a quiz, additional resources, and a glossary. For the alpha testing, 9 users assessed the newly developed website. Patient reviewers (n=5) had rheumatoid arthritis, Crohn disease, Sjogren syndrome, or vasculitis. Health care provider reviewers (n=4) were medical oncologists or rheumatologists. The median Suitability Assessment of Materials rating was 75 (IQR 70-79; range 0-100) for patients versus 66 (IQR 57-72; range 0-100) for providers (scores ≥70 indicate no substantial changes needed). Recommendations for improvement, mostly involving navigation and accessibility, were addressed. All participants expressed that the website was acceptable and balanced in terms of discussion of benefits and harms. Because half (2/4, 50%) of the providers suggested we increase the amount of information, we extended the content on the impact of having an autoimmune disease when considering ICB treatment, the probability of flares, and the management of flares in this context.</p><p><strong>Conclusions: </strong>The feedback led to minor revisions to enhance readability, navigation, and accessibility, ensuring the website's suitability as a decision-making aid. The newly developed website could become a supporting tool to facilitate patient-physician discussion regarding ICBs.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"10 ","pages":"e53443"},"PeriodicalIF":3.3,"publicationDate":"2024-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11549586/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142510127","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}
JMIR CancerPub Date : 2024-10-17DOI: 10.2196/52128
Emily L Mueller, Anneli R Cochrane, Madison E Campbell, Sarah Nikkhah, Richard J Holden, Andrew D Miller
{"title":"An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Beta Stage Usability Study.","authors":"Emily L Mueller, Anneli R Cochrane, Madison E Campbell, Sarah Nikkhah, Richard J Holden, Andrew D Miller","doi":"10.2196/52128","DOIUrl":"10.2196/52128","url":null,"abstract":"<p><strong>Background: </strong>Previous research demonstrated that caregivers of children with cancer desired a mobile health (mHealth) tool to aid them in the medical management of their child. Prototyping and alpha testing of the Cope 360 app (Commissioning Agents, Inc) resulted in improvements in the ability to track symptoms, manage medications, and prepare for urgent medical needs.</p><p><strong>Objective: </strong>This study aims to engage caregivers of children with cancer in beta testing of a smartphone app for the medical management of children with cancer, assess acceptance, identify caregivers' perceptions and areas for improvement, and validate the app's design concepts and use cases.</p><p><strong>Methods: </strong>In this pilot, study caregivers of children with cancer used the Cope 360 mHealth app for 1 week, with the goal of daily logging. Demographics and a technology acceptance survey were obtained from each participant. Recorded semistructured interviews were transcribed and analyzed iteratively using NVivo (version 12, QSR International) and analyzed for information on usage, perceptions, and suggestions for improvement.</p><p><strong>Results: </strong>A total of 10 caregivers participated in beta testing, primarily women (n=8, 80%), married, with some college education, and non-Hispanic White (n=10, 100%). The majority of participants (n=7, 70%) had children with acute lymphocytic leukemia who were being treated with chemotherapy only (n=8, 80%). Overall, participants had a favorable opinion of Cope 360. Almost all participants (n=9, 90%) believed that using the app would improve their ability to manage their child's medical needs at home. All participants reported that Cope 360 was easy to use, and most would use the app if given the opportunity (n=8, 80%). These values indicate that the app had a high perceived ease of use with well-perceived usefulness and behavioral intention to use. Key topics for improvement were identified including items that were within the scope of change and others that were added to a future wish list. Changes that were made based on caregiver feedback included tracking or editing all oral and subcutaneous medications and the ability to change the time of a symptom tracked or medication administered if unable to do so immediately. Wish list items included adding a notes section, monitoring skin changes, weight and nutrition tracking, and mental health tracking.</p><p><strong>Conclusions: </strong>The Cope 360 app was well received by caregivers of children with cancer. Our validation testing suggests that the Cope 360 app is ready for testing in a randomized controlled trial to assess outcome improvements.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"10 ","pages":"e52128"},"PeriodicalIF":3.3,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11528164/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142477256","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}
JMIR CancerPub Date : 2024-10-10DOI: 10.2196/52639
Iman Hesso, Lithin Zacharias, Reem Kayyali, Andreas Charalambous, Maria Lavdaniti, Evangelia Stalika, Tarek Ajami, Wanda Acampa, Jasmina Boban, Shereen Nabhani-Gebara
{"title":"Artificial Intelligence for Optimizing Cancer Imaging: User Experience Study.","authors":"Iman Hesso, Lithin Zacharias, Reem Kayyali, Andreas Charalambous, Maria Lavdaniti, Evangelia Stalika, Tarek Ajami, Wanda Acampa, Jasmina Boban, Shereen Nabhani-Gebara","doi":"10.2196/52639","DOIUrl":"10.2196/52639","url":null,"abstract":"<p><strong>Background: </strong>The need for increased clinical efficacy and efficiency has been the main force in developing artificial intelligence (AI) tools in medical imaging. The INCISIVE project is a European Union-funded initiative aiming to revolutionize cancer imaging methods using AI technology. It seeks to address limitations in imaging techniques by developing an AI-based toolbox that improves accuracy, specificity, sensitivity, interpretability, and cost-effectiveness.</p><p><strong>Objective: </strong>To ensure the successful implementation of the INCISIVE AI service, a study was conducted to understand the needs, challenges, and expectations of health care professionals (HCPs) regarding the proposed toolbox and any potential implementation barriers.</p><p><strong>Methods: </strong>A mixed methods study consisting of 2 phases was conducted. Phase 1 involved user experience (UX) design workshops with users of the INCISIVE AI toolbox. Phase 2 involved a Delphi study conducted through a series of sequential questionnaires. To recruit, a purposive sampling strategy based on the project's consortium network was used. In total, 16 HCPs from Serbia, Italy, Greece, Cyprus, Spain, and the United Kingdom participated in the UX design workshops and 12 completed the Delphi study. Descriptive statistics were performed using SPSS (IBM Corp), enabling the calculation of mean rank scores of the Delphi study's lists. The qualitative data collected via the UX design workshops was analyzed using NVivo (version 12; Lumivero) software.</p><p><strong>Results: </strong>The workshops facilitated brainstorming and identification of the INCISIVE AI toolbox's desired features and implementation barriers. Subsequently, the Delphi study was instrumental in ranking these features, showing a strong consensus among HCPs (W=0.741, P<.001). Additionally, this study also identified implementation barriers, revealing a strong consensus among HCPs (W=0.705, P<.001). Key findings indicated that the INCISIVE AI toolbox could assist in areas such as misdiagnosis, overdiagnosis, delays in diagnosis, detection of minor lesions, decision-making in disagreement, treatment allocation, disease prognosis, prediction, treatment response prediction, and care integration throughout the patient journey. Limited resources, lack of organizational and managerial support, and data entry variability were some of the identified barriers. HCPs also had an explicit interest in AI explainability, desiring feature relevance explanations or a combination of feature relevance and visual explanations within the toolbox.</p><p><strong>Conclusions: </strong>The results provide a thorough examination of the INCISIVE AI toolbox's design elements as required by the end users and potential barriers to its implementation, thus guiding the design and implementation of the INCISIVE technology. The outcome offers information about the degree of AI explainability required of the INCISIVE AI toolbox across","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"10 ","pages":"e52639"},"PeriodicalIF":3.3,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11502975/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142401585","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":"Association of Family-Centered Care With Psychological Distress Among Caregivers of Children With Cancer at a Tertiary-Level Hospital in Ethiopia: Cross-Sectional Study.","authors":"Leul Deribe, Eshetu Girma, Nataliya Lindström, Abdulkadir Gidey, Solomon Teferra, Adamu Addissie","doi":"10.2196/54715","DOIUrl":"10.2196/54715","url":null,"abstract":"<p><strong>Background: </strong>Psychological distress (PD) is a common mental health problem faced by caregivers of children with cancer. The involvement of families in childcare was found to be associated with lower levels of distress.</p><p><strong>Objective: </strong>The study aims to determine the associations between family-centered care (FCC) and PD among caregivers of children with cancer receiving treatment at Tikur Anbessa Specialized Hospital (TASH), Ethiopia.</p><p><strong>Methods: </strong>An institution-based, cross-sectional study was conducted from June to December 2022. Caregivers of children with cancer aged 0-14 years receiving cancer treatment at the pediatric oncology unit completed a face-to-face, interviewer-administered, structured questionnaire during a routine inpatient or outpatient visit. The questionnaire included questions on the characteristics of the child and caregiver, PD (measured by the Kessler Psychological Distress Scale [K10]), FCC (measured by the Measure of Processes of Care [MPOC-20]), and social support (measured by the Oslo-3 Social Support Scale [OSS-3]). Data were collected using the Kobo toolbox and exported to SPSS (version 26; IBM Corp) for cleaning and analysis. A multivariable logistic regression model was used. An odds ratio with a 95% CI was calculated, and a P value less than .05 was considered statistically significant.</p><p><strong>Results: </strong>A total of 384 caregivers of children with cancer participated in the study. The total PD score ranged from 10 to 50, with a mean score of 17.30 (SD 8.96; 95% CI 16.84-18.60). The proportion of caregivers found to have mild, moderate, and severe levels of PD was 43 (11.2%), 35 (9.1%), and 51 (13.3%), respectively. The overall prevalence of mild to severe PD symptoms was 33.6% (95% CI 28.9%-38.3%). A statistically significant negative association was found between FCC and PD (adjusted odds ratio [AOR] 0.68, 95% CI 0.53-0.86). In addition, having no formal education (AOR 2.87, 95% CI 1.28-6.45), having a history of relapse (AOR 3.24, 95% CI 1.17-9.02), beginning cancer treatment at TASH (AOR 2.82, 95% CI 1.4-4.85), beginning treatment within the last 3 months (AOR 3.99, 95% CI 1.73-9.23), and beginning treatment within the last 4 to 18 months (AOR 2.68, 95% CI 1.25-5.76) were significantly associated with higher level of PD.</p><p><strong>Conclusions: </strong>A total of 1 in 3 caregivers have reported PD. FCC was found to be protective of PD. The finding of this study suggests the need for FCC intervention to improve the mental health condition of caregivers. In addition, the intervention needs to consider the educational status of the caregivers, the time since the cancer diagnosis, and the history of relapse.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"10 ","pages":"e54715"},"PeriodicalIF":3.3,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11502982/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142401586","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}
JMIR CancerPub Date : 2024-10-03DOI: 10.2196/48465
Grace B Campbell, Hansol Kim, Tara C Klinedinst, Julie Klinger, Young Ji Lee, Heidi S Donovan
{"title":"Needs of Patients With Gynecologic Cancer and Their Caregivers for Obtaining mHealth-Supported Self-Management: Focus Group Study.","authors":"Grace B Campbell, Hansol Kim, Tara C Klinedinst, Julie Klinger, Young Ji Lee, Heidi S Donovan","doi":"10.2196/48465","DOIUrl":"10.2196/48465","url":null,"abstract":"<p><strong>Background: </strong>Family caregivers of individuals with gynecologic cancer experience high levels of distress. Web-based caregiver support interventions have demonstrated efficacy in improving caregiver outcomes. However, the lack of portability could be a limitation. Mobile health (mHealth) apps could fill this gap and facilitate communication between patient-caregiver dyads.</p><p><strong>Objective: </strong>We sought to obtain information on desired usage and features to be used to design an mHealth self-management support app targeting both patients with gynecologic cancer and their caregivers.</p><p><strong>Methods: </strong>We conducted Zoom focus groups with women who had been treated for gynecologic cancers (ovarian, fallopian, primary peritoneal, uterine, endometrial, cervical, and vulvar); patients were also asked to invite a self-identified \"closest support person\" (caregiver). A semistructured focus group guide was used to elicit information on patients' and caregivers' perceived gaps in information and support, desired features of an mHealth app, and interest in and preferences for app usage. After transcription, rapid qualitative analysis using a thematic matrix was used to identify common themes across groups.</p><p><strong>Results: </strong>A total of 8 groups were held. The final sample included 41 individuals with gynecologic cancer and 22 support persons or caregivers (total n=63). Patients were aged between 32 and 84 years, and most (38/41, 93%) were White and married. For caregivers (n=22), 15 (68%) identified as male and 7 (32%) as female, with ages ranging between 19 and 81 years. Overall, 59% (n=13) of caregivers were spouses. Questions geared at eliciting 3 a priori topics yielded the following themes: topic 1-gaps in information and support: finding relevant information is time-consuming; patients and caregivers lack confidence in deciding the urgency of problems that arise and from whom to seek information and guidance; topic 2-desired features of the mHealth app: patients and caregivers desire centralized, curated, trustworthy information; they desire timely recommendations tailored to specific personal and cancer-related needs; they desire opportunities to interact with clinical and peer experts through the app; and topic 3-interest and preferences for app usage: need for private space in the app for patients and caregivers to get information and support without the others' knowledge; patients and caregivers desire having control over sharing of information with other family members.</p><p><strong>Conclusions: </strong>Designing a single mHealth app to be used by patients and caregivers presents unique challenges for intervention designers and app developers. Implications of the study suggest that app developers need to prioritize flexibility in app functionality and provide individuals the ability to control information sharing between patients and caregivers.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"10 ","pages":"e48465"},"PeriodicalIF":3.3,"publicationDate":"2024-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11487211/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142366880","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}
JMIR CancerPub Date : 2024-09-30DOI: 10.2196/56048
Ariel Hoadley, Linda Fleisher, Cassidy Kenny, Patrick Ja Kelly, Xinrui Ma, Jingwei Wu, Carmen Guerra, Amy E Leader, Mohammed Alhajji, Paul D'Avanzo, Zoe Landau, Sarah Bauerle Bass
{"title":"Exploring Racial Disparities in Awareness and Perceptions of Oncology Clinical Trials: Cross-Sectional Analysis of Baseline Data From the mychoice Study.","authors":"Ariel Hoadley, Linda Fleisher, Cassidy Kenny, Patrick Ja Kelly, Xinrui Ma, Jingwei Wu, Carmen Guerra, Amy E Leader, Mohammed Alhajji, Paul D'Avanzo, Zoe Landau, Sarah Bauerle Bass","doi":"10.2196/56048","DOIUrl":"10.2196/56048","url":null,"abstract":"<p><strong>Background: </strong>Black/African American adults are underrepresented in oncology clinical trials in the United States, despite efforts at narrowing this disparity.</p><p><strong>Objective: </strong>This study aims to explore differences in how Black/African American oncology patients perceive clinical trials to improve support for the clinical trial participation decision-making process.</p><p><strong>Methods: </strong>As part of a larger randomized controlled trial, a total of 244 adult oncology patients receiving active treatment or follow-up care completed a cross-sectional baseline survey on sociodemographic characteristics, clinical trial knowledge, health literacy, perceptions of cancer clinical trials, patient activation, patient advocacy, health care self-efficacy, decisional conflict, and clinical trial intentions. Self-reported race was dichotomized into Black/African American and non-Black/African American. As appropriate, 2-tailed t tests and chi-square tests of independence were used to examine differences between groups.</p><p><strong>Results: </strong>Black/African American participants had lower clinical trial knowledge (P=.006), lower health literacy (P<.001), and more medical mistrust (all P values <.05) than non-Black/African American participants. While intentions to participate in a clinical trial, if offered, did not vary between Black/African American and non-Black/African American participants, Black/African American participants indicated lower awareness of clinical trials, fewer benefits of clinical trials, and more uncertainty around clinical trial decision-making (all P values <.05). There were no differences for other variables.</p><p><strong>Conclusions: </strong>Despite no significant differences in intent to participate in a clinical trial if offered and high overall trust in individual health care providers among both groups, beliefs persist about barriers to and benefits of clinical trial participation among Black/African American patients. Findings highlight specific ways that education and resources about clinical trials could be tailored to better suit the informational and decision-making needs and preferences of Black/African American oncology patients.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"10 ","pages":"e56048"},"PeriodicalIF":3.3,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11474127/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142356072","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}