The development, usability, and reliability of the Electronic Patient Visit Assessment (ePVA) for head and neck cancer

Background: Annually, over 65,000 persons are diagnosed with head and neck cancer in the United States. During treatment, up to 50% of patients become severely symptomatic with pain, fatigue, mouth sores, and inability to eat. Long term complications are lymphedema, fibrosis, dysphagia, and musculoskeletal impairment. Patients’ ability to perform daily activities and to interact socially may be impaired, resulting in poor quality of life. A pragmatic, clinically useful assessment is needed to ensure early detection and intervention for patients to report symptoms and functional limitations over time. We developed the Electronic Patient Visit Assessment (ePVA) that enables patients to report 42 symptoms related to head and neck cancer and 17 limitations of functional status. This manuscript reports (I) the development of the ePVA, (II) the content validity of the ePVA, and (III) the usability and reliability of the ePVA. Methods: Usability was evaluated using the “Think Aloud” technique to guide the iterative process to refine the ePVA based on participants’ evaluations. After signing the informed consent, 30 participants with head and neck cancer completed the ePVA using digital tablet devices while thinking aloud about ease of use. All patient conversations were recorded and professionally transcribed. Reliability of the ePVA symptom and functional limitation measures was estimated using the Kuder-Richardson test. Convergent validity of the ePVA was evaluated using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 global QoL/health scale. Transcribed qualitative data were analyzed using directed content analysis approach. Quantitative analyses consisted of descriptive statistics and correlation analyses. Results: Among participants, 90% strongly agreed or agreed that the ePVA system was easy to use and 80% were very satisfied. Only minor usability problems were reported due to formatting and software “bugs”. Reporting of usability problems decreased in frequency over the study period and no usability problems were reported by the last 3 participants who completed the ePVA. Based on participants’ suggestions during the iterative process, refinement of the ePVA included increased touch sensitivity of the touch screen technology and customized error messages to improve ease of use. The ePVA also recorded patient reported symptoms (mouth symptoms: 93%, fibrosis: 60%, fatigue: 60%). The ePVA demonstrated acceptable reliability (alpha =0.82–0.85) and convergent validity (ePVA total number of reported symptoms and function limitations was negatively correlated with EORTC QLQ-C30 global QOL/health scale: r=−0.55038, P<0.01). Conclusions: The ePVA was rigorously developed, accepted by patients with satisfaction, and demonstrated acceptable reliability and convergent validity. Future research will use data generated by the ePVA to determine the impact of symptom trajectories on functional status, treatment interruptions and terminations, and health resource use in head and neck cancer

User-Dependent Usability and Feasibility of a Swallowing Training mHealth App for Older Adults: Mixed Methods Pilot Study

Background: Swallowing difficulties (ie, dysphagia) are common among older adults, with a 13% to 54% prevalence. Adequate interventions to improve the swallowing function of older adults would reduce morbidity and enhance health-related quality of life outcomes. Mobile health (mHealth) apps may help alleviate dysphagia symptoms by providing programs that maximize the intensity and frequency of training without requiring high costs or regular clinic visits. Objective: The aim of this pilot study was to assess the usability of swallowing training apps by quantitatively and qualitatively evaluating older adults' self-reported data, taking into consideration their educational levels and exposure to mobile technology. We conducted surveys and brief interviews while the participants used a swallowing intervention app we developed. We subsequently identified and resolved individual-specific usability issues to improve future implementation of the app protocol for older persons with swallowing difficulties. Methods: A total of 11 participants (10 women, 91%; mean age 75.7 years, SD 3.93) from two district-run senior welfare centers took part in this study. The participants were divided into a high-potential group and a low-potential group based on their total number of years of education and smart device usage. To investigate the usability of the app twice (ie, in the second week of the intervention and the postintervention stage), we used mixed methods consisting of both quantitative approaches, namely the System Usability Scale (SUS) and modified Computer Self-Efficacy Scale (mCSES) surveys, and qualitative approaches (ie, interviews). Results: The quantitative results of the SUS and mCSES surveys revealed that the high-potential group was more inclined to adopt and learn new technology than the low-potential group. Specifically, within the high-potential group, a Wilcoxon signed-rank test indicated that the postintervention mCSES scores (median 65.50) were significantly higher than those in the second week of intervention (median 54.00; z=-2.023, P=.04). Additionally, the usability scores in the low-potential group were within the "marginal acceptability" range even after completion of an 8-week intervention program. Qualitative analyses via semi-structured interviews yielded promising outcomes regarding app acceptability, training program utilization, emotional responses, and learning experience. Conclusions: To the best of the authors' knowledge, this usability and feasibility study is the first report of a swallowing training app designed to improve the swallowing function of older adults. Future research should consider several issues, such as user characteristics, pretraining education, and the intensity and innate characteristics of the intervention program.ope

Telehealth and oropharyngeal dysphagia: An integrative review

ABSTRACT Purpose: to analyze the telehealth speech therapy approach in patients with oropharyngeal dysphagia and determine the applications and effects of this practice. Methods: the following descriptors were used for selection: Telerehabilitation, Telemedicine, "Remote Consultation", "Healthcare Delivery", "Distance Counseling", "Therapy, Computer-Assisted", "Speech-Language Pathology", "Speech Therapy", "Swallowing Disorders", Dysphagia, “Bottle Feeding" and "Enteral Nutrition” in PubMed, MedLine, Scopus and Web of Science databases and in the gray literature, by Google Scholar and ProQuest. Studies were selected without time limits, in Portuguese, English and Spanish, that described the applicability and/or effects of telehealth in speech therapy practice in patients with swallowing disorders/dysphagia, regardless of gender and age. For analysis, the following were considered: level of scientific evidence and recommendation, telehealth modality, objectives, methods and results/conclusion. Literature Review: 490 articles were found and, after exclusion of duplicates, analysis of titles, abstracts and reading of full articles, 22 studies were selected. The articles were classified into telehealth modalities: tele-education, telediagnosis, teleconsulting, teleregulation and telemonitoring. Conclusion: the telehealth modalities described had a great potential to promote significant improvements in patients presented with swallowing disorders/dysphagia, suggesting them as viable for speech therapy services. Among them, teleconsultation was the least addressed

Usability Testing on Android-based KMS for Pregnant Women using the USE Questionnaire

An Android-based medicines knowledge management system (KMS) application has been built as a result of a research about the usage of medicines on pregnant women. Usability testing is needed to be used to measure the success rate of the implementation of this mobile application. In this study, the Usefulness, Satisfaction and Ease of Use (USE) Questionnaire method is used, with quantitative and qualitative analysis. Based on the test results, it shows that the KMS application for pregnant women has a high usability result, with each component score, namely Usefulness reaches 86%, Ease of Use of 86%, and Satisfaction of 84%. On average, 85% indicates that the Android-based medicines KMS application for pregnant women has high quality attributes in ease of use. In addition, this application already has criteria to meet the needs of users, especially pregnant women, to easily find information and knowledge about medicines that are safe to consume during pregnancy to relieve pain or pregnancy complaints

A Multilevel Mixed Methods Examination of Treatment Nonadherence Among Rural Cancer Survivors

While mortality rates have been decreasing over the last 40 years, cancer remains a leading cause of death in the United States. Over 1.7 million people were diagnosed with cancer in 2019, and there were more than 600,000 cancer deaths. Of the 15 million cancer survivors in the US, nearly 3 million reside in rural areas and experience 3% higher cancer incidence and 10% higher cancer mortality compared to their nonrural counterparts. During 2006-2015, the annual age-adjusted mortality rates for all cancer sites combined decreased at a slower pace in rural areas versus nonrural areas (-1.0% vs -1.6% per year, respectively), widening the disparity in mortality rates. Although the reasons for these disparities are not fully known, rural cancer survivors tend to be older, have additional comorbidities and poorer general health, and have a higher prevalence of lifestyle risk factors, such as smoking and lack of physical activity, that complicate survival and may contribute to the higher mortality rate. Nonadherence to cancer treatment is associated with poorer cancer outcomes, including higher rates of cancer recurrence or treatment failure and decreased survival. Reports of mortality have been up to four times as likely in nonadherent compared with adherent survivors. A growing set of studies have begun to document that cancer treatment adherence is poorer among rural populations, which may also partially explain the higher mortality rate observed in rural areas. This dissertation is comprised of three studies: 1) a systematic review of the role of digital health in rural oncology; 2) a data analysis of hospital and billing claims data examining geographic differences in sociodemographic and clinical factors associated with radiation treatment nonadherence; and 3) a multilevel, theory-driven examination of rural cancer treatment nonadherence utilizing survey and individual interview data

“Is there anything else you would like to tell us?” – A thematic analysis of free-text comments from a self-management questionnaire with people affected by cancer

Background: Researchers are frequently using open-ended questions at the end of questionnaires that invite respondents to add, in their own words, further information about issues covered in the questionnaire. The aim of this study was to present the qualitative findings from the further information section at the end of a questionnaire that was designed to collect data on aspects of self-management in people affected by cancer. Methods: Respondents were asked: ‘Thinking about how you manage your health and health care, if there is anything else you would like to tell us about your experience, please write in the box below.’ Free-text responses were analysed thematically. Results: 128 participants completed the free-text response at the end of the questionnaire. The main overarching theme was the concept of the participants “moving on” from cancer and developing a meaningful life for themselves following diagnosis and treatment. For most, this incorporated making adjustments to their physical, social, psychological, spiritual and emotional wellbeing. “Luck” was another overwhelming theme where many participants stated they were “glad to still be alive” and “consider myself very lucky.” Participants reported adjustments made to health behaviours such as leading an active lifestyle and making changes to their diet and nutrition. The final theme incorporates the participants identifying their main sources of support, both clinical and non-clinical, some of which they stated “could not have done it without them.” Conclusions: The findings highlight the valuable insight that free-text comments can add as a data source at the end of self-completion questionnaires with people affected by cancer

An Online Self-Assessment Platform for Community-Dwelling Stroke Survivors: Development and Acceptability

Background: Activity limitation and participation restriction are common in stroke survivors. Digital health technologies are widely utilised to enable self-management. An online platform, specifically developed for stroke survivors can improve the use of electronic Patient-Reported Outcome Measures (ePROM) to enable self-assessment and empower patients to get involved in their care. The overall aim of this PhD was to develop and test the acceptability of an online self-assessment platform, the Stroke Survivors Hub (SSHUB) to support the long-term self-management of stroke survivors. Methods: A systematic review was conducted to explore existing disease-specific PROM to assess daily activity limitations in stroke survivors. This informed the development of the Evaluation of Daily Activity Questionnaire for stroke survivors (EDAQ-SS) with the involvement of 10 stroke survivors and 11 experts. Content validity of the EDAQ-SS was evaluated using the International Classification of Functioning (ICF) Core Set for Stroke. Following this, the EDAQ-SS was digitised as an ePROM and the SSHUB was developed. The SSHUB acceptability was tested with stroke survivors (n=57). Additionally, data collected via the eEDAQ-SS were used to explore patterns of activity limitation and participation restriction in British stroke survivors.Findings: The EDAQ-SS is an appropriate, comprehensive, understandable and relevant PROM to assess the extent of activity limitation and participation restriction in British stroke survivors, and the first stroke specific PROM to differentiate between capacity and performance. The SSHUB is a user-friendly and acceptable online platform to aid self-assessment of stroke survivors’ ability to carry our daily activities and aggregated data provide opportunities to examine the frequency and pattern of these difficulties in community-dwelling stroke-survivors. Conclusion: The EDAQ-SS is an acceptable measure of daily activities for stroke survivors, and freely available on the SSHUB to inform self-management. Future recommendations include the psychometric testing of the EDAQ-SS with a larger sample to establish the measurement validity and reliability, and the strategies to expand the remit of the SSHUB as an online self-management platform