JMIR Cancer最新文献

Background: Telehealth was an important strategy for maintaining continuity of cancer care during the coronavirus pandemic and has continued to play a role in outpatient care; however, it is unknown whether services are equally available across cancer hospitals.

Objective: This study aimed to assess telehealth availability at cancer hospitals for new and established patients with common cancers to contextualize the impact of access barriers to technology on overall access to health care.

Methods: We conducted a national cross-sectional secret shopper study from June to November 2020 to assess telehealth availability at cancer hospitals for new and established patients with colorectal, breast, and skin (melanoma) cancer. We examined facility-level factors to determine predictors of telehealth availability.

Results: Of the 312 investigated facilities, 97.1% (n=303) provided telehealth services for at least 1 cancer site. Telehealth was less available to new compared to established patients (n=226, 72% vs n=301, 97.1%). The surveyed cancer hospitals more commonly offered telehealth visits for breast cancer care (n=266, 85%) and provided lower access to telehealth for skin (melanoma) cancer care (n=231, 74%). Most hospitals (n=163, 52%) offered telehealth for all 3 cancer types. Telehealth availability was weakly correlated across cancer types within a given facility for new (r=0.16, 95% CI 0.09-0.23) and established (r=0.14, 95% CI 0.08-0.21) patients. Telehealth was more commonly available for new patients at National Cancer Institute-designated facilities, medical school-affiliated facilities, and major teaching sites, with high total admissions and below-average timeliness of care. Telehealth availability for established patients was highest at Academic Comprehensive Cancer Programs, nongovernment and nonprofit facilities, medical school-affiliated facilities, Accountable Care Organizations, and facilities with a high number of total admissions.

Conclusions: Despite an increase in telehealth services for patients with cancer during the COVID-19 pandemic, we identified differences in access across cancer hospitals, which may relate to measures of clinical volume, affiliation, and infrastructure.

Background: Cancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not adequately engage populations facing inequities.

Objective: We describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding.

Methods: To center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related.

Results: Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8% misclassification while the SAB identified 20.7% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95% pairwise agreement, while the cancer term dictionary resulted in an 89.2% pairwise agreement.

Conclusions: The classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research.

Background: To inform the development of an intervention, it is essential to have a well-developed theoretical understanding of how an intervention causes change, as stated in the UK Medical Research Council guidelines for developing complex interventions. Theoretical foundations are often ignored in the development of mobile health apps intended to support pain self-management for patients with cancer.

Objective: This study aims to systematically set a theory- and evidence-driven design for a pain self-management app and specify the app's active features.

Methods: The Behavior Change Wheel (BCW) framework, a step-by-step theoretical approach to the development of interventions, was adopted to achieve the aim of this study. This started by understanding and identifying sources of behavior that could be targeted to support better pain management. Ultimately, the application of the BCW framework guided the identification of the active contents of the app, which were characterized using the Behavior Change Technique Taxonomy version 1.

Results: The theoretical analysis revealed that patients may have deficits in their capability, opportunity, and motivation that prevent them from performing pain self-management. The app needs to use education, persuasion, training, and enablement intervention functions because, based on the analysis, they were found the most likely to address the specified factors. Eighteen behavior change techniques were selected to describe precisely how the intervention functions can be presented to induce the desired change regarding the intervention context. In other words, they were selected to form the active contents of the app, potentially reducing barriers and serving to support patients in the self-management of pain while using the app.

Conclusions: This study fully reports the design and development of a pain self-management app underpinned by theory and evidence and intended for patients with cancer. It provides a model example of the BCW framework application for health app development. The work presented in this study is the first systematic theory- and evidence-driven design for a pain app for patients with cancer. This systematic approach can support clarity in evaluating the intervention's underlying mechanisms and support future replication.

Background: Comprehensive models of survivorship care are necessary to improve access to and coordination of care. New models of care provide the opportunity to address the complexity of physical and psychosocial problems and long-term health needs experienced by patients following cancer treatment.

Objective: This paper presents our expert-informed, rules-based survivorship algorithm to build a nurse-led model of survivorship care to support men living with prostate cancer (PCa). The algorithm is called No Evidence of Disease (Ned) and supports timelier decision-making, enhanced safety, and continuity of care.

Methods: An initial rule set was developed and refined through working groups with clinical experts across Canada (eg, nurse experts, physician experts, and scientists; n=20), and patient partners (n=3). Algorithm priorities were defined through a multidisciplinary consensus meeting with clinical nurse specialists, nurse scientists, nurse practitioners, urologic oncologists, urologists, and radiation oncologists (n=17). The system was refined and validated using the nominal group technique.

Results: Four levels of alert classification were established, initiated by responses on the Expanded Prostate Cancer Index Composite for Clinical Practice survey, and mediated by changes in minimal clinically important different alert thresholds, alert history, and clinical urgency with patient autonomy influencing clinical acuity. Patient autonomy was supported through tailored education as a first line of response, and alert escalation depending on a patient-initiated request for a nurse consultation.

Conclusions: The Ned algorithm is positioned to facilitate PCa nurse-led care models with a high nurse-to-patient ratio. This novel expert-informed PCa survivorship care algorithm contains a defined escalation pathway for clinically urgent symptoms while honoring patient preference. Though further validation is required through a pragmatic trial, we anticipate the Ned algorithm will support timelier decision-making and enhance continuity of care through the automation of more frequent automated checkpoints, while empowering patients to self-manage their symptoms more effectively than standard care.

International registered report identifier (irrid): RR2-10.1136/bmjopen-2020-045806.

Background: The treatment for cancer can have a negative impact not only on physical well-being but also on mental health and the quality of life (QoL). Health apps enable the monitoring of different parameters, but to date, there are only few that support patients with cancer and none that focuses on the assessment of QoL. Furthermore, patients as stakeholders are often only integrated at the late stage of the development process, if at all.

Objective: The aim of this research was to develop and evaluate a smartphone app (Lion-App) to enable patients with cancer to autonomously measure the QoL with an iterative, user-centered approach.

Methods: Patients with cancer were involved in a 3-stage process from conceptualization to the point when the app was available on the tester's private device. First, focus groups with members (N=21) of cancer support groups were conducted to understand their expectations and needs. Thereafter, individual tests were performed. After developing a prototype that incorporated findings from the focus groups, a second test cycle was conducted, followed by a beta test lasting 2 months. In our app, the QoL can be assessed via a patient diary and an integrated questionnaire. Through all stages, usability was evaluated using the modular extended version of the User Experience Questionnaire (UEQ+), including the calculation of a key performance indicator (KPI). If possible, the impact of sex on the results was evaluated. As part of the beta test, usage rates as well as age-dependent differences were also assessed.

Results: A total of 21 participants took part in the initial 3 focus groups. In the subsequent usability testing (N=18), 17 (94%) participants rated their impression through the UEQ+, with a mean KPI of 2.12 (SD 0.64, range: -3 to 3). In the second usability test (N=14), the mean KPI increased to 2.28 (SD=0.49). In the beta test, the usage rate of 19 participants was evaluated, of whom 14 (74%) also answered the UEQ+ (mean KPI 1.78, SD 0.84). An influence of age on the number of questionnaire responses in Lion-App was observed, with a decrease in responses with increasing age (P=.02). Sex-dependent analyses were only possible for the first usability test and the beta test. The main adjustments based on user feedback were a restructuring of the diary as well as integration of a shorter questionnaire to assess the QoL.

Conclusions: The iterative, user-centered approach for development and usability testing resulted in positive evaluations of Lion-App. Our app was rated as suitable for everyday use to monitor the QoL of patients with cancer. Initial results indicated that the sex and age of participants seem to play only a minor role.

Background: Breast cancer is the most common cause of cancer mortality among women globally. The use of mobile health tools such as apps and games is increasing rapidly, even in low- and middle-income countries, to promote early diagnosis and to manage care and support of survivors and patients.

Objective: The primary objective of this review was to categorize selected mobile health apps related to breast health and prevention of breast cancer, based on features such as breast self-examination (BSE) training and reminders, and to analyze their current dissemination. An ancillary objective was to highlight the limitations of existing tools and suggest ways to improve them.

Methods: We defined strict inclusion and exclusion criteria, which required apps to have titles or descriptions that suggest that they were designed for the general public, and not for patients with breast cancer or health workers. Apps that focused on awareness and primary care via self-check were included, while those that focused on topics such as alternative treatments and medical news were excluded. Apps that were not specifically related to breast cancer were also excluded. Apps (in any language) that appeared in the search with keywords were included. The database consisted of apps from AppAgg and Google Play Store. Only 85 apps met the inclusion criteria. Selected apps were categorized on the basis of their alleged interactive features. Descriptive statistics were obtained, and available language options, the number of downloads, and the cost of the apps were the main parameters reviewed.

Results: The selected apps were categorized on the basis of the following features: education, BSE training, reminders, and recording. Of the 85 selected apps, 72 (84.7%) focused on disseminating breast cancer information. BSE training was provided by only 47% (n=40) of the apps, and very few had reminder (n=26, 30.5%) and recording (n=11, 12.9%) features. The median number of downloads was the highest for apps with recording features (>1000 downloads) than those with education, BSE training, reminder, and recording features (>5000 downloads). Most of these apps (n=74, 83.5%) were monolingual, and around 80.3% (n=49) of these apps were in English. Almost all the apps on Google Play Store were free of charge.

Conclusions: Although there exist several apps on Google Play Store to promote awareness about breast health and cancer, the usefulness of most of them appears debatable. To provide a complete breast health package to the users, such apps must have all of the following features: reminders or notifications and symptom recording and tracking. There is still an urgent need to scientifically evaluate existing apps in the target populations in order to make them more functional and user-friendly.

Background: Prostate cancer is a common form of cancer that is often treated with radical prostatectomy, which can leave patients with urinary incontinence and sexual dysfunction. Self-care (pelvic floor muscle exercises and physical activity) is recommended to reduce the side effects. As more and more men are living in the aftermath of treatment, effective rehabilitation support is warranted. Digital self-care support has the potential to improve patient outcomes, but it has rarely been evaluated longitudinally in randomized controlled trials. Therefore, we developed and evaluated the effects of digital self-care support (electronic Patient Activation in Treatment at Home [ePATH]) on prostate-specific symptoms.

Objective: This study aimed to investigate the effects of web-based and mobile self-care support on urinary continence, sexual function, and self-care, compared with standard care, at 1, 3, 6, and 12 months after radical prostatectomy.

Methods: A multicenter randomized controlled trial with 2 study arms was conducted, with the longitudinal effects of additional digital self-care support (ePATH) compared with those of standard care alone. ePATH was designed based on the self-determination theory to strengthen patients' activation in self-care through nurse-assisted individualized modules. Men planned for radical prostatectomy at 3 county hospitals in southern Sweden were included offline and randomly assigned to the intervention or control group. The effects of ePATH were evaluated for 1 year after surgery using self-assessed questionnaires. Linear mixed models and ordinal regression analyses were performed.

Results: This study included 170 men (85 in each group) from January 2018 to December 2019. The participants in the intervention and control groups did not differ in their demographic characteristics. In the intervention group, 64% (53/83) of the participants used ePATH, but the use declined over time. The linear mixed model showed no substantial differences between the groups in urinary continence (β=-5.60; P=.09; 95% CI -12.15 to -0.96) or sexual function (β=-.12; P=.97; 95% CI -7.05 to -6.81). Participants in the intervention and control groups did not differ in physical activity (odds ratio 1.16, 95% CI 0.71-1.89; P=.57) or pelvic floor muscle exercises (odds ratio 1.51, 95% CI 0.86-2.66; P=.15).

Conclusions: ePATH did not affect postoperative side effects or self-care but reflected how this support may work in typical clinical conditions. To complement standard rehabilitation, digital self-care support must be adapted to the context and individual preferences for use and effect.

Trial registration: ISRCTN Registry ISRCTN18055968; https://www.isrctn.com/ISRCTN18055968.

International registered report identifier (irrid): RR2-10.2196/11625.