Usability and acceptability of the electronic self-assessment and care (eSAC) program in advanced ovarian cancer: A mixed methods study.

OBJECTIVE: To determine usability and acceptability of the electronic self-assessment and care (eSAC) web-based, patient reported outcome (PRO) program for people with advanced ovarian cancer. METHODS: Patient participants recruited from a single ambulatory site were prompted by email to answer symptom/quality of life items prior to each clinic visit. Patient participant acceptability was measured with the Acceptability E-Scale Score (AES). Usability was measured among a subset of patient participants using semi-structured interviews. Clinician participant acceptability and usability were measured via survey and semi-structured interviews. Quantitative data were analyzed with descriptive statistics. Qualitative data were analyzed using thematic content analysis. A mixed methods analysis was performed. RESULTS: Of 163 eligible patients approached, 143 (87.7%) provided written consent. Patient participants (n = 71) who created an eSAC report prior to at least 3 clinic visits, rated eSAC as acceptable with a mean AES score of 26.19 ± 3.36 (out of 30). Interview data from patient participants (n = 33) revealed that eSAC was easy to use and important to the clinic visit conversation. Data from clinician surveys (n = 8) and focus groups (n = 3) revealed that the eSAC program was acceptable and useful for clinicians. Qualitative analysis suggested process improvements from patients and clinicians for effectiveness in the advanced ovarian cancer setting. Mixed methods analysis demonstrated no major discrepancies between quantitative and qualitative findings, with the qualitative data broadening understanding of quantitative ratings. CONCLUSION: eSAC was useful and acceptable in this setting. This PRO is a promising strategy for enhancing patient-centered care for people with advanced ovarian cancer.

Assigning value to preparation for prostate cancer decision making: a willingness to pay analysis.

BACKGROUND: The Personal Patient Profile-Prostate (P3P) is a web-based decision support system for men newly diagnosed with localized prostate cancer that has demonstrated efficacy in reducing decisional conflict. Our objective was to estimate willingness-to-pay (WTP) for men's decisional preparation activities. METHODS: In a multicenter, randomized trial of P3P, usual care group participants received typical preparation for decision making plus referral to publicly-available, educational websites. Intervention group participants received the same, plus online P3P educational media specific to the user's personal preferences and values, and a communication coaching component tailored to race\ethnicity, age and language. WTP data were collected one week after physician consultation. An iterative bidding direct contingent valuation survey format was used, randomly assigning participants to high or low starting values (SV). Tobit models were used to explore associations between SV-adjusted WTP and age, education, marital and work-status, insurance, decision-control preference and decision-making stage. RESULTS: Of 392 participants enrolled, 141 P3P and 107 usual care (UC) provided a WTP value. Men were willing to pay a median $25 (IQR $10-100) for P3P in addition to usual care preparation materials. In the final multivariable tobit regression model, SV, marital status, stage of decision making and income were significantly associated with WTP for P3P. Decision control preference was considered marginally significant (p = 0.11). Men were WTP a median $30 (IQR $10-$200) for usual care material alone. In the final multivariable model, SV, education, and stage of decision making were significantly associated with WTP in usual care. CONCLUSION: WTP was similar for UC and for the addition of P3P to UC decision preparation. The WTP values were associated with demographic and preference variables. Findings can help focus decision support on future patients who would benefit most: those without strong support systems, at earlier stages of decision making, and open to a shared-decision style. TRIAL REGISTRATION: NCT NCT01844999 . Registered May 3, 2013.

The electronic self report assessment and intervention for cancer: promoting patient verbal reporting of symptom and quality of life issues in a randomized controlled trial.

BACKGROUND: The electronic self report assessment - cancer (ESRA-C), has been shown to reduce symptom distress during cancer therapy The purpose of this analysis was to evaluate aspects of how the ESRA-C intervention may have resulted in lower symptom distress (SD). METHODS: Patients at two cancer centers were randomized to ESRA-C assessment only (control) or the Web-based ESRA-C intervention delivered to patients' homes or to a tablet in clinic. The intervention allowed patients to self-monitor symptom and quality of life (SxQOL) between visits, receive self-care education and coaching to report SxQOL to clinicians. Summaries of assessments were delivered to clinicians in both groups. Audio-recordings of clinic visits made 6 weeks after treatment initiation were coded for discussions of 26 SxQOL issues, focusing on patients'/caregivers' coached verbal reports of SxQOL severity, pattern, alleviating/aggravating factors and requests for help. Among issues identified as problematic, two measures were defined for each patient: the percent SxQOL reported that included a coached statement, and an index of verbalized coached statements per SxQOL. The Wilcoxon rank test was used to compare measures between groups. Clinician responses to problematic SxQOL were compared. A mediation analysis was conducted, exploring the effect of verbal reports on SD outcomes. RESULTS: 517 (256 intervention) clinic visits were audio-recorded. General discussion of problematic SxQOL was similar in both groups. Control group patients reported a median 75% of problematic SxQOL using any specific coached statement compared to a median 85% in the intervention group (p = .0009). The median report index of coached statements was 0.25 for the control group and 0.31 for the intervention group (p = 0.008). Fatigue, pain and physical function issues were reported significantly more often in the intervention group (all p < .05). Clinicians' verbalized responses did not differ between groups. Patients' verbal reports did not mediate final SD outcomes (p = .41). CONCLUSIONS: Adding electronically-delivered, self-care instructions and communication coaching to ESRA-C promoted specific patient descriptions of problematic SxQOL issues compared with ESRA-C assessment alone. However, clinician verbal responses were no different and subsequent symptom distress group differences were not mediated by the patients' reports. TRIAL REGISTRATION: NCT00852852; 26 Feb 2009.

Electronic self-report assessment for cancer and self-care support: results of a multicenter randomized trial.

PURPOSE: The purpose of this trial was to evaluate the effect of a Web-based, self-report assessment and educational intervention on symptom distress during cancer therapy. PATIENTS AND METHODS: A total of 752 ambulatory adult participants were randomly assigned to symptom/quality-of-life (SxQOL) screening at four time points (control) versus screening, targeted education, communication coaching, and the opportunity to track/graph SxQOL over time (intervention). A summary of the participant-reported data was delivered to clinicians at each time point in both groups. All participants used the assessment before a new therapeutic regimen, at 3 to 6 weeks and 6 to 8 weeks later, completing the final assessment at the end of therapy. Change in Symptom Distress Scale-15 (SDS-15) score from pretreatment to end of study was compared using analysis of covariance and regression analysis adjusting for selected variables. RESULTS: We detected a significant difference between study groups in mean SDS-15 score change from baseline to end of study: 1.27 (standard deviation [SD], 6.7) in the control group (higher distress) versus -0.04 (SD, 5.8) in the intervention group (lower distress). SDS-15 score was reduced by an estimated 1.21 (95% CI, 0.23 to 2.20; P = .02) in the intervention group. Baseline SDS-15 score (P < .001) and clinical service (P = .01) were predictive. Multivariable analyses suggested an interaction between age and study group (P = .06); in subset analysis, the benefit of intervention was strongest in those age > 50 years (P = .002). CONCLUSION: Web-based self-care support and communication coaching added to SxQOL screening reduced symptom distress in a multicenter sample of participants with various diagnoses during and after active cancer treatment. Participants age > 50 years, in particular, may have benefited from the intervention.

Enhancing patient-provider communication with the electronic self-report assessment for cancer: a randomized trial.

PURPOSE: Although patient-reported cancer symptoms and quality-of-life issues (SQLIs) have been promoted as essential to a comprehensive assessment, efficient and efficacious methods have not been widely tested in clinical settings. The purpose of this trial was to determine the effect of the Electronic Self-Report Assessment-Cancer (ESRA-C) on the likelihood of SQLIs discussed between clinicians and patients with cancer in ambulatory clinic visits. Secondary objectives included comparison of visit duration between groups and usefulness of the ESRA-C as reported by clinicians. PATIENTS AND METHODS: This randomized controlled trial was conducted in 660 patients with various cancer diagnoses and stages at two institutions of a comprehensive cancer center. Patient-reported SQLIs were automatically displayed on a graphical summary and provided to the clinical team before an on-treatment visit (n = 327); in the control group, no summary was provided (n = 333). SQLIs were scored for level of severity or distress. One on-treatment clinic visit was audio recorded for each participant and then scored for discussion of each SQLI. We hypothesized that problematic SQLIs would be discussed more often when the intervention was delivered to the clinicians. RESULTS: The likelihood of SQLIs being discussed differed by randomized group and depended on whether an SQLI was first reported as problematic (P = .032). Clinic visits were similar with regard to duration between groups, and clinicians reported the summary as useful. CONCLUSION: The ESRA-C is the first electronic self-report application to increase discussion of SQLIs in a US randomized clinical trial.

Evaluation of online training on the prevention of venous thromboembolism.

INTRODUCTION: The integration of new evidence into clinical practice can be a prolonged process, with delays of years or even decades. One approach to speed this integration is through the use of online provider education. PROBLEM: Venous thromboembolism (VTE) is a serious patient safety issue. Prevention requires coordinated care and adherence to evidence-based guidelines, supported by provider education. PURPOSE: This study reports how an interdisciplinary team developed and piloted an online provider training program for the prevention of VTE. HYPOTHESIS: If providers use the online educational training, they will demonstrate increased mastery of key content areas related to VTE prophylaxis. METHODS: We used a prospective test-retest study design in which medical residents and fellows served as their own controls. All participants were given a pretest followed by educational content and then a posttest. We also assessed 2 different types of learning content (ie, with and without case studies/questions) and randomized participants to each type prior to assessment. RESULTS: Using the McNemar test we found a trend for knowledge gains related to VTE guidelines on the posttest for clinicians (n = 67) with a 14.5% improvement in content mastery (P = .05, 2-tailed). We did not find any significant differences between training modalities. Clinicians overall reported high levels of satisfaction with the application. CONCLUSION: Our online education efforts indicate the potential for increasing mastery of VTE prophylaxis concepts. If resources are limited, we suggest a static approach to content delivery and an exploration of standardized methods for portability of online curriculums across learning management systems.

Usability evaluation of the interactive Personal Patient Profile-Prostate decision support system with African American men.

BACKGROUND: The Personal Patient Profile-Prostate (P4) program is an interactive Web-based decision support system that provides men with localized prostate cancer customized education and coaching with which to make the best personal treatment decision. This study assessed functionality and usability of the P4 program and identified problems in user-computer interaction in a sample of African American men. METHODS: Usability testing was conducted with 12 community-dwelling African American adult men. The health status of participants was not known or collected by the research team. Each participant worked with the P4 program and provided simultaneous feedback using the "think aloud" technique. Handwritten field notes were collated and assigned to 3 standard coded categories. Aspects of P4 program usability was made based on common issues in the assigned categories. Summary statistics were derived for types and frequency of usability issues noted in the coded data. RESULTS: Twelve participants reported a total of 122 usability comments, with a mean of 9 usability comments. The most common usability issue by participant was completeness of information content, which comprised 53 (43%) of the total issues. Comprehensibility of text and graphics was second, comprising 51 (42%) of the total issues. CONCLUSION: This study provided initial inventory of usability issues for community African American men that may potentially interfere with application of the P4 system in the community setting and overall system usability, confirming the need for usability testing of a culturally appropriate Internet-based decision support system before community application.

Pilot study of a cell phone-based exercise persistence intervention post-rehabilitation for COPD.

OBJECTIVE: To determine the feasibility and efficacy of a six-month, cell phone-based exercise persistence intervention for patients with chronic obstructive pulmonary disease (COPD) following pulmonary rehabilitation. METHODS: Participants who completed a two-week run-in were randomly assigned to either MOBILE-Coached (n = 9) or MOBILE-Self-Monitored (n = 8). All participants met with a nurse to develop an individualized exercise plan, were issued a pedometer and exercise booklet, and instructed to continue to log their daily exercise and symptoms. MOBILE-Coached also received weekly reinforcement text messages on their cell phones; reports of worsening symptoms were automatically flagged for follow-up. Usability and satisfaction were assessed. Participants completed incremental cycle and six minute walk (6MW) tests, wore an activity monitor for 14 days, and reported their health-related quality of life (HRQL) at baseline, three, and six months. RESULTS: The sample had a mean age of 68 +/-11 and forced expiratory volume in one second 18% predicted. Participants reported that logging their exercise and symptoms (FEV(1)) of 40 +/- was easy and that keeping track of their exercise helped them remain active. There were no differences between groups over time in maximal workload, 6MW distance, or HRQL (p > 0.05); however, MOBILE-Self-Monitored increased total steps/day whereas MOBILE-Coached logged fewer steps over six months (p =0.04). CONCLUSIONS: We showed that it is feasible to deliver a cell phone-based exercise persistence intervention to patients with COPD post-rehabilitation and that the addition of coaching appeared to be no better than self-monitoring. The latter finding needs to be interpreted with caution since this was a purely exploratory study. TRIAL REGISTRATION: ClinicalTrials.gov (NCT00373932).

Development of a user-centered health information service system for depressive symptom management.

A user-centered, Web-based depressive symptoms management system might be particularly useful in Korea, where those who seek mental health care face stigmatizing and where personal computers and the Internet have reached saturation levels. The purpose of this article is to describe the development process of a Web-based system for depressive symptom management through user-centered design principles. Our design process included four distinct phases: a needs assessment, analysis, design/development/testing, and the application release. The final revised website was released with the URL address, "http://www.baejy.com/smiles/". In the 3 years since the site was made available publicly, it is notable that 161,604 Koreans have accessed this website, either for educational purposes or for managing their depressive symptoms. A Web-based depressive symptom management system with a high degree of usability was developed. This website can be used to assess depressive symptoms and to serve as an intervention strategy to improve mental health.

Designing and testing a web-based interface for self-monitoring of exercise and symptoms for older adults with chronic obstructive pulmonary disease.

The use of information and communication technologies to support collaborative management of chronic obstructive pulmonary disease and associated symptoms is particularly appealing since most people with chronic obstructive pulmonary disease continue to experience dyspnea despite optimal medical therapy and therefore must engage in the long-term tasks of self-management. Exercise is an effective therapy to reduce dyspnea in patients with chronic obstructive pulmonary disease. The purpose of this article was to describe our process of developing a set of integrated tools to support collaborative symptom and exercise monitoring for patients with chronic obstructive pulmonary disease. This process could be followed by other researchers and clinicians interested in developing collaborative management tools for other chronic conditions. User-centered design principles guided the 4-phase development process of a set of integrated tools for self-symptom management. The usability challenges uncovered during the field testing were mostly minor and were easily corrected. Patients had a strong preference for a calendar-like display of completed exercise coupled with simultaneous goal viewing. Field usability testing showed that the integrated set of tools was relatively easy to learn, efficient to use, and with minimal errors and has a high level of user satisfaction. An iterative, multimodal process is essential to successful development of acceptable Web-based tools for self-management in chronic obstructive pulmonary disease.

Acceptability of an Electronic Self-Report Assessment Program for patients with cancer.

Eliciting symptom and quality of life information from patients is an important component of medical and nursing care processes. Traditionally, this information has been collected with paper and pencil. However, this approach presents several barriers, including delays in receiving information, difficulty in integrating responses with electronic records, and the time required to manually score questionnaires for measurement purposes. One solution that addresses many of these barriers is the adoption of computerized screening for symptom and quality-of-life information. This research explored the acceptability of asking symptom and quality-of-life questions using the Electronic Self Report Assessment-Cancer program on wireless laptops equipped with touch-screen format. Acceptability data were explored with respect to whether any differences may be attributed to demographics and symptom and quality-of-life levels, such as depression and cognitive and emotional functioning. This evaluation used descriptive and univariate statistics to examine data from 342 participants from the ongoing ESRA-C randomized clinical trial. Research participants for the ESRA-C study were recruited from the Seattle Cancer Care Alliance, a consortium among the University of Washington Medical Center, Fred Hutchinson Cancer Research Center, and Children's Hospital and Regional Medical Center in Seattle, WA. The sample consisted of 342 adult participants who completed both baseline and follow-up survey sessions. Medical oncology represented the largest recruitment group (45.3%), followed by stem cell transplant (34.5%) and radiation oncology (20.2%). The primary finding was that patients were generally able to use ESRA-C quickly and without difficulty in a real-world clinical setting and that they were overall quite satisfied with the ESRA-C program. Significant differences were found in several acceptability areas with respect to demographics and quality of life measures such as age, sex, and severe distress. This analysis confirms that the ESRA-C application for collecting symptom and quality of life information is easy for patients to use and acceptable across a range of user characteristics. We intend to build on our work by using the survey platform in other modalities while ensuring that the patient's preferences are considered at all times.

The Korean American family: adolescents versus parents acculturation to American culture.

The goal of this cross-sectional study was to describe acculturation and characteristics of Korean American families. Self-reports were gathered from 106 families (105 mothers, 98 fathers, 106 adolescents) in the Midwest. Mothers, fathers, and adolescents maintained Korean cultural and linguistic characteristics while adopting some American cultural and linguistic features. The adoption of American culture and English was more evident among adolescents than their parents. The association between Korean American parents' acculturation attitudes and their characteristics were consistent with the acculturation framework. This information may provide basic understanding for health care providers who care for Korean American families.

An exploratory study of an intranet dashboard in a multi-state healthcare system.

Healthcare executives may be unaware of effective uses of evidence-based guidelines within their healthcare system. The primary objective in this research was to design and implement an automated intranet dashboard reporting performance measures for community acquired pneumonia. A secondary objective was to describe how this might increase cooperation and coordination within a healthcare delivery system. Principals of user centered design and information management were used in the construction of the intranet dashboard. Descriptive research approaches were used with a convenience sample of healthcare executives completing a baseline survey measuring satisfaction with receiving reports and cooperation between geographically distributed facilities. After three months of exposure to the dashboard, a follow-up survey was administered. Usage patterns were examined from server log files; qualitative exit interviews were also conducted with six healthcare executives. A functional dashboard was created with limited resources, data quality issues presented as barriers to automation. Descriptive analysis found substantial increases on a number of survey items, suggesting that the dashboard contributes toward increased satisfaction communication and coordination among healthcare executives. Findings should be balanced by the limited rigor in the research design and the web server log files which found few visitations to the dashboard. Qualitative data analysis suggests that current reporting mechanisms are suboptimal for healthcare executives and that one solution may be dashboards.

Electronic Self-report Assessment--Cancer (ESRA-C): Working towards an integrated survey system.

The Clinical Informatics Research Group and Biobehavioral Nursing and Health Systems at the University of Washington are working with interdisciplinary teams to improve patient care and tracking of patient-reported symptoms and outcomes by creating an extensible web-based survey and intervention platform. The findings and cumulative experience from these processes have led to incremental improvements and variations in each new implementation of the platform. This paper presents progress in the first year of a three-year NIH study entitled Electronic Self Report Assessment--Cancer (ESRA-C). The project's goals are to enhance and evaluate the web-based computerized patient self-reporting and assessment system at the Seattle Cancer Care Alliance. Preliminary work and lessons learned in the modification of the platform and enhancements to the system will be described.