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author:("wolin, Seth")
1.  Electronic Self-Report Assessment for Cancer and Self-Care Support: Results of a Multicenter Randomized Trial 
Journal of Clinical Oncology  2013;32(3):199-205.
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.
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).
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.
PMCID: PMC3887477  PMID: 24344222
2.  The Personal Patient Profile-Prostate, Decision Support for Men With Localized Prostate Cancer: A Multi-center Randomized Trial 
Urologic oncology  2011;31(7):1012-1021.
The purpose of this trial was to compare usual patient education plus the Internet-based, Personal Patient Profile-Prostate, versus usual education alone, on conflict associated with decision making, plus explore time-to-treatment and treatment choice.
A randomized, multi-center clinical trial was conducted with measures at baseline, one and six months. Men with newly diagnosed localized prostate cancer who sought consultation at urology, radiation oncology or multi-disciplinary clinics in four geographically-distinct American cities were recruited. Intervention group participants used the Personal Patient Profile-Prostate, a decision support system comprised of customized text and video coaching regarding potential outcomes, influential factors, and communication with care providers. The primary outcome, patient-reported decisional conflict, was evaluated over time using Generalized Estimating Equations to fit generalized linear models. Additional outcomes, time-to-treatment, treatment choice and program acceptability/usefulness, were explored.
A total of 494 eligible men were randomized (266 intervention; 228 control). The intervention reduced adjusted decisional conflict over time as compared with the control group, for the uncertainty score (estimate −3.61; (confidence interval, −7.01,−0.22) and values clarity (estimate −3.57; confidence interval (−5.85,−1.30) Borderline effect was seen for the total decisional conflict score (estimate −1.75; confidence interval (−3.61,0.11). Time-to-treatment was comparable between groups, while undecided men in the intervention group chose brachytherapy more often than in the control group. Acceptability and usefulness were highly rated.
The Personal Patient Profile-Prostate is the first intervention to significantly reduce decisional conflict in a multi-center trial of American men with newly diagnosed localized prostate cancer. Our findings support efficacy of P3P for addressing decision uncertainty and facilitating patient selection of a prostate cancer treatment that is consistent with the patient values and preferences.
PMCID: PMC3349002  PMID: 22153756
prostate cancer; randomized trial; Internet; decision making; decisional conflict
3.  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 
BMC Cancer  2014;14:513.
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).
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.
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).
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
PMCID: PMC4226951  PMID: 25014995
Patient-provider communication; Cancer; Symptoms; Coaching; Internet
4.  Internet-Based Dyspnea Self-Management Support for Patients With Chronic Obstructive Pulmonary Disease 
People with chronic obstructive pulmonary disease (COPD) experience dyspnea with activities despite optimal medical management.
The purpose of this study was to test the efficacy of two 12-month dyspnea self-management programs, Internet-based (eDSMP) and face-to-face (fDSMP), compared with a general health education (GHE) control on the primary outcome of dyspnea with activities.
Participants with COPD were randomized to eDSMP (n=43), fDSMP (n=41) or GHE (n=41). The content of the DSMPs were similar and focused on education, skills training, and coaching on dyspnea self-management strategies, including exercise, and only differed in the delivery mode. Dyspnea with activities was measured with the Chronic Respiratory Questionnaire at three, six, and 12 months. Secondary outcomes included exercise behavior and performance, health-related quality of life (HRQL), self-efficacy for dyspnea management, and perception of support for exercise. The study was registered at (NCT00461162).
There were no differences in dyspnea with activities across groups over 12 months (P=0.48). With the exception of arm endurance (P=0.04), exercise behavior, performance, and HRQL did not differ across groups (P>0.05). Self-efficacy for managing dyspnea improved for the DSMPs compared with GHE (P=0.06). DSMP participants perceived high levels of support for initiating and maintaining an exercise program.
The DSMPs did not significantly reduce dyspnea with activities compared to attention control. However, the high participant satisfaction with the DSMPs combined with positive changes in other outcomes, including self-efficacy for managing dyspnea and exercise behavior, highlight the need for additional testing of individually tailored, technology-enabled interventions to optimize patient engagement and improve clinically relevant outcomes.
PMCID: PMC3548968  PMID: 23073395
Self-management; self-care; dyspnea; pulmonary disease; COPD; chronic disease; health behavior; health education; internet; smartphone; cell phone
5.  A Deliberate and Rigorous Approach to Development of Patient-centered Technologies 
Seminars in oncology nursing  2011;27(3):183-191.
Many technologies intended for patient use are never developed or evaluated with principles of user-centered design. In this review, we explore different approaches to assessing usability and acceptability, drawn from selected exemplar studies in the health sciences literature.
Data sources
Peer-reviewed research manuscripts were selected from Medline and other data sources accessible through We also present a framework for developing patient-centered technologies that we recently employed.
While there are studies utilizing principles of user-centered design, many more do not report formative usability testing results and may only report post-hoc satisfaction surveys. Consequently, adoption by user groups may be limited.
Implications for Nursing Practice
We encourage nurses in practice to look for and examine usability testing results prior to considering implementation of any patient-centered technology.
PMCID: PMC3189856  PMID: 21783009
Usability; Acceptability; Patient-centered; Informatics
6.  Enhancing Patient-Provider Communication With the Electronic Self-Report Assessment for Cancer: A Randomized Trial 
Journal of Clinical Oncology  2011;29(8):1029-1035.
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.
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.
The ESRA-C is the first electronic self-report application to increase discussion of SQLIs in a US randomized clinical trial.
PMCID: PMC3068053  PMID: 21282548
7.  Validation and testing of the Acceptability E-scale for Web-based patient-reported outcomes in cancer care 
Applied nursing research : ANR  2009;24(1):53-58.
The performance of the Acceptability E-scale was tested in a sample of 627 adult and older adult patients from various oncology clinics who completed an electronic symptoms survey. The revised Acceptability E-scale has strong psychometric properties and can be useful in assessing the acceptability and usability of computerized health-related programs in oncology and other health population.
PMCID: PMC3030937  PMID: 20974066
8.  Feasibility of a Webinar for Coaching Patients With Chronic Obstructive Pulmonary Disease on End-of-Life Communication 
Previous research has shown that patients with chronic obstructive pulmonary disease (COPD) desire conversations about end-of-life wishes. However, most clinicians do not initiate these discussions. We explored whether educating patients via Web conferencing (webinar) would equip them with knowledge and skills to engage in conversations about end-of-life care.
Prewebinar, 6 of the 7 patients had completed advanced care planning forms but only half had shared these with their clinicians. Most patients felt confident about discussing end-of-life preferences. At 3 months, all participants had taken further action on end-of-life planning. Five felt the webinar was an acceptable option if unable to participate in person. All patients voiced that adding a video stream would have promoted interaction in the context of these sensitive conversations.
This pilot project demonstrated that a webinar to educate patients on end-of-life communication was acceptable for the majority of patients. Improvements in audio and video bandwidth may facilitate more interaction among virtual participants. This may be particularly useful for patient education on sensitive topics.
PMCID: PMC3084900  PMID: 20834035
webinar; end-of-life communication; chronic obstructive pulmonary disease; patient education; advanced care planning; technology
9.  Development and Evaluation of the Personal Patient Profile-Prostate (P3P), a Web-Based Decision Support System for Men Newly Diagnosed With Localized Prostate Cancer 
Given that no other disease with the high incidence of localized prostate cancer (LPC) has so many treatments with so few certainties related to outcomes, many men are faced with assuming some responsibility for the treatment decision along with guidance from clinicians. Men strongly consider their own personal characteristics and other personal factors as important and influential to the decision. Clinical researchers have not developed or comprehensively investigated interventions to facilitate the insight and prioritizing of personal factors along with medical factors that are required of a man in preparation for the treatment decision.
The purpose of this pilot study was to develop and evaluate the feasibility and usability of a Web-based decision support technology, the Personal Patient Profile-Prostate (P3P), in men newly diagnosed with LPC.
Use cases were developed followed by infrastructure and content application. The program was provided on a personal desktop computer with a touch screen monitor. Participant responses to the query component of P3P determined the content of the multimedia educational and coaching intervention. The intervention was tailored to race, age, and personal factors reported as influencing the decision. Prepilot usability testing was conducted using a “think aloud” interview to identify navigation and content challenges. These issues were addressed prior to deployment in the clinic. A clinical pilot was conducted in an academic medical center where men sought consultation and treatment for LPC. Completion time, missing data, and acceptability were measured.
Prepilot testing included 4 men with a past diagnosis of LPC who had completed therapy. Technical navigation issues were documented along with confusing content language. A total of 30 additional men with a recent diagnosis of LPC completed the P3P program in clinic prior to consulting with a urologist regarding treatment options. In a mean time of 46 minutes (SD 13 minutes), participants completed the P3P query and intervention components. Of a possible 4560 items for 30 participants, 22 (0.5%) were missing. Acceptability was reported as high overall. The sections of the intervention reported as most useful were the statistics graphs, priority information topics, and annotated external website links.
The P3P intervention is a feasible and usable program to facilitate treatment decision making by men with newly diagnosed LPC. Testing in a multisite randomized trial with a diverse sample is warranted.
PMCID: PMC3056527  PMID: 21169159
Prostate cancer; decision making; computer-assisted; pilot study
10.  The Korean American Family: Adolescents versus Parents Acculturation to American Culture 
Journal of cultural diversity  2008;15(3):108-116.
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.
PMCID: PMC2702242  PMID: 19025199
Korean American Family; Adolescents versus Parents; Parental Acculturation
11.  Pilot study of a cell phone-based exercise persistence intervention post-rehabilitation for COPD 
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.
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.
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 (FEV1) 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).
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 (NCT00373932).
PMCID: PMC2740952  PMID: 19750190
chronic obstructive pulmonary disease; physical activity; exercise persistence; pulmonary rehabilitation; cell phones
12.  Depression Screening Using the Patient Health Questionnaire-9 Administered on a Touch Screen Computer 
Psycho-oncology  2009;18(1):14-22.
To 1) evaluate the feasibility of touch screen depression screening in cancer patients using the Patient Health Questionnaire-9 (PHQ-9), 2) evaluate the construct validity of the PHQ-9 using the touch screen modality, and 3) examine the prevalence and severity of depression using this screening modality.
The PHQ-9 was placed in a web-based survey within a study of the clinical impact of computerized symptom and quality of life screening. Patients in medical oncology, radiation oncology, and hematopoietic stem cell transplantation (HSCT) clinics used the program on a touch screen computer in waiting rooms prior to therapy (T1) and during therapy (T2). Responses of depressed mood or anhedonia (PHQ-2 cardinal depression symptoms) triggered additional items. PHQ-9 scores were provided to the oncology team in real-time.
Among 342 patients enrolled, 33 (9.6%) at T1 and 69 (20.2%) at T2 triggered the full PHQ-9 by endorsing at least one cardinal symptom. Feasibility was high, with at least 97% completing the PHQ-2 and at least 96% completing the PHQ-9 when triggered and a mean completion time of about 2 minutes. The PHQ-9 had good construct validity. Medical oncology patients had the highest percent of positive screens (12.9%) at T1, while HSCT patients had the highest percent (30.5%) at T2. Using this method, 21 (6.1%) at T1 and 54 (15.8%) at T2 of the total sample had moderate to severe depression.
The PHQ-9 administered on a touch screen computer is feasible and provides valid depression data in a diverse cancer population.
PMCID: PMC2610244  PMID: 18457335
cancer; oncology; depression; screening; transplant; computer
13.  Randomized Controlled Trial of an Internet-Based Versus Face-to-Face Dyspnea Self-Management Program for Patients With Chronic Obstructive Pulmonary Disease: Pilot Study 
People with chronic obstructive pulmonary disease (COPD) continue to experience dyspnea with activities of daily living (ADL) despite optimal medical management. Information and communication technologies may facilitate collaborative symptom management and could potentially increase the reach of such interventions to those who are unable to attend face-to-face pulmonary rehabilitation or self-management programs.
The purpose of this randomized study was to test the efficacy of two 6-month dyspnea self-management programs, Internet-based (eDSMP) and face-to-face (fDSMP), on dyspnea with ADL in people living with COPD.
We randomly assigned 50 participants with moderate to severe COPD who were current Internet users to either the eDSMP (n = 26) or fDSMP (n = 24) group. The content of the two programs was similar, focusing on education, skills training, and ongoing support for dyspnea self-management, including independent exercise. The only difference was the mode (Internet/personal digital assistant [PDA] or face-to-face) in which the education sessions, reinforcement contacts, and peer interactions took place. Participants returned to one of two academic clinical sites for evaluation at 3 and 6 months. The primary outcome of dyspnea with ADL was measured with the Chronic Respiratory Questionnaire. Secondary outcomes of exercise behavior, exercise performance, COPD exacerbations, and mediators, such as self-efficacy and social support, were also measured. A satisfaction survey was administered and a semistructured exit interview was conducted at the final visit.
The study was stopped early due to multiple technical challenges with the eDSMP, but follow-up was completed on all enrolled participants. Data were available for 39 participants who completed the study (female: 44%; age: 69.5 ± 8.5 years; percent predicted forced expiratory volume in 1 s: 49.6 ± 17.0%). The fDSMP and eDSMP showed similar clinically meaningful changes in dyspnea with ADL from baseline to 3 months (fDSMP: + 3.3 points; eDSMP: + 3.5 points) and sustained these improvements at 6 months (fDSMP: + 4.0 points; eDSMP: + 2.5 points; time effects P < .001; group by time P = .51). Self-reported endurance exercise time (P = .001), physical functioning (P = .04), and self-efficacy for managing dyspnea (P = .02) also showed positive improvements over time in both groups with no significant differences with respect to program modality. Participants who completed the study reported favorable satisfaction with the programs.
Although there were numerous technical challenges with the eDSMP, both dyspnea self-management programs were effective in reducing dyspnea with ADL in the short term. Our findings will need to be confirmed in a larger randomized trial with more mature Web and personal digital assistant tools, use of a control group, and longer follow-up.
Trial registration NCT00102401,
PMCID: PMC2483918  PMID: 18417444
Dyspnea; pulmonary disease; chronic disease; self-care; self-efficacy; health behavior; health education; exercise; monitoring; Internet; cellular phone; telemedicine; randomized controlled trial; Personal Digital Assistant (PDA)
14.  Exercise and Symptom Monitoring with a Mobile Device 
Mobile PDA/phone devices allow remote monitoring of clinical and behavioral parameters. However, passively expecting patients to use these devices may lead to low response rates. Our study, aimed at collecting exercise and symptom data from an older clinical population of patients with COPD, employed push technology principles by delivering automated prompts to patients in an effort to increase response rates. We found acceptable response rates with subjects preferring to have prompts delivered to coincide with their exercise activity though usability issues had adverse effects on response rates and time.
PMCID: PMC1839516  PMID: 17238666

Results 1-14 (14)