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Many prostate cancer (PC) survivors experience disease and treatment-related symptomatology in both the physical and psychosocial domains. Although the benefits and barriers to using web-based resources for cancer patients are well-documented, less research has focused on the personal characteristics important for efficient tailoring and targeting of information that are associated with usage.
We used the Cognitive-Social Health Information Processing (C-SHIP) framework to guide our exploration of personal characteristics associated with use of PROGRESS, an informational PC survivorship website that addresses physical, emotional, interpersonal, and practical concerns relevant for PC survivors.
PC survivors (N=217) were randomized to the intervention arm (PROGRESS) of a randomized controlled trial. Of those randomized to the intervention arm, 84 used PROGRESS, and 133 did not use PROGRESS. Multivariable analyses evaluated demographic and psychosocial characteristics (eg, style of coping, health literacy, self-efficacy, affective states of depression, anxiety, and fatigue) associated with website use.
A larger proportion of non-Hispanic White (68/160, 42.5%), compared with non-Hispanic Black (9/40, 23%), participants used PROGRESS (
A combination of monitoring and low levels of negative affect were associated with website use. Additionally, users were older, non-Hispanic White survivors. To ensure that important survivorship-relevant information reaches users, future efforts need to focus on enhancing patient engagement.
ClinicalTrials.gov NCT02224482; https://clinicaltrials.gov/ct2/show/NCT02224482
Prostate cancer (PC) is the second most common cancer diagnosed in men in the United States, with about 1 in 9 men diagnosed during their lifetime. The American Cancer Society estimates that, in 2021, there will be 248,530 new cases of PC in the United States [
The rapid development of modern technology has facilitated the use of web-based resources for individuals dealing with illness and treatment-related side effects, as is the case for PC survivors. Web-based resources have been developed and evaluated for many groups including breast cancer survivors [
Benefits to using web-based resources include ease of access at the patient’s own schedule in a private place; ability to access the intervention through multiple channels (ie, personal computer, tablet, smartphone); augmented content through interactive videos, graphics, and testimonials; tailored content for treatment approaches or specific time points in the recovery trajectory; access transcending geographical barriers; and tracking patient recovery in real time [
To increase engagement and persistent use of health-related software programs, it is therefore important to identify psychosocial characteristics that go beyond the commonly known access and demographic variables (eg, younger age, higher education) [
Our study is guided by the Cognitive-Social Health Information Processing (C-SHIP) model, a theoretical framework that identifies 5 cognitive-affective constructs that are associated with engagement in health protective behaviors [
For the parent randomized controlled trial (RCT), PC patients were recruited during routine posttreatment follow-up appointments at 4 mid-Atlantic cancer centers. Recruitment occurred over the course of 3 years (2013-2016). Patients were eligible if they were diagnosed with localized PC (T1-T3c N0M0), were within 1 year of treatment completion, had regular access to a computer or a tablet with internet either at home or at another public place, were aged 18 years or older, were able to give consent, and were able to communicate in English. Exclusion criteria were presence of another primary cancer or a cancer recurrence.
Eligible patients who agreed to participate in the study were enrolled after signing the consent form and completing the baseline survey. Using block randomization by site, participants were randomized to either the control group (print materials: NCI’s
PROGRESS is a self-paced, web-based educational program to address PC survivors’ information needs in 6 specific domains suggested by prior work of the investigators [
PROGRESS features include a topics tab (addressing financial or legal issues; interpersonal communication, emotional and practical concerns; negative feelings; and side effects); videos from physicians, patients, and content experts; fields for personal tracking (of PSA level, health status, weight, sleep, urinary or erectile dysfunction, medication, living habits, and questions for upcoming physician appointments); information on the latest PC findings (in prevention, screening, treatment, and survivorship); a virtual health center and navigator; theoretically guided normalizing messages; testimonials from a group of diverse PC survivors; and technology support (a tutorial program and a help desk). The software program underwent extensive usability testing before it was released for study purposes [
The 5 key theoretical constructs were operationalized within PROGRESS through the program’s components of (1) providing accurate information, (2) creating realistic expectations and promoting self-efficacy, (3) exploring the patient’s goals and values and encouraging behavior consistent with them, (4) validating feelings and facilitating emotional support, and (5) providing information and training to maximize self-regulatory competencies and skills.
Assessments were conducted at baseline and at 1-month, 3-month, and 6-month follow-ups. Data for these analyses were drawn from the baseline assessment and indication of website use during the study. Patients completed the assessments via paper-and-pencil survey, online via REDCap, or telephone interview. Follow-up telephone calls or emails (based on participant’s preferred survey completion method) were used for noncompleted surveys. Participants received a US $20 gift card for each completed assessment.
Demographics assessed at baseline included race/ethnicity, age, and education. Comorbidities were captured using the Charlson Comorbidity Index, a 16-item weighted measure evaluating the presence or absence, or severity, of illnesses [
The outcome variable, PROGRESS use, was a binary variable coded as “use” or “nonuse” and was obtained via Google Analytics after completion of the participants’ last follow-up assessments. Participants randomized to PROGRESS were considered to have used PROGRESS if they clicked beyond the home page at least once during the study period. Participants were categorized as nonusers if they did not log in or logged in but did not click through to any other page beyond the home page. We were unable to track amount of website use with the available tracking metrics.
Data were analyzed with SPSS version 19.0 and R version 3.6. Descriptive statistics were used to characterize the sample [
A total of 927 participants were assessed for eligibility; 278 did not meet inclusion criteria, leaving 649 eligible. A total of 431 participants (66.4% of those eligible) consented and were enrolled and randomized (217 PC survivors were randomized to PROGRESS, and 214 were randomized to the control condition), and 218 declined to participate. Of those randomized to PROGRESS, 73.3% (159/217) completed the 1-month time point, 54.8% (119/217) completed the 3-month time point, and 47.5% (103/217) completed the 6-month time point. See
CONSORT (Consolidated Standards of Reporting Trials) diagram for the PROGRESS intervention arm.
Overall, the sample was mostly non-Hispanic White (160/217, 73.7%), married (175/217, 80.6%), and with no comorbidities (167/214, 78.0%). About half (103/215, 47.9%) had a college degree or higher, and about half (115/217, 53.0%) endorsed that they were in the highest income bracket (US $75,001 and greater). In terms of treatment, about half (112/217, 51.6%) had surgery. The average age of the sample was 63.79 (SD 6.67) years. See
Participants’ mean scores were 2.46 (SD 2.20) and 1.44 (SD 1.41) on the monitoring and blunting subscales, respectively; 13.12 (SD 2.24) on the measure of health literacy; 8.75 (SD 1.11) on the self-efficacy for re-entry scale; 4.76 (SD 4.32) on the anxiety measure; and 6.27 (SD 5.05) on the measure of fatigue. Further, the average scores on the POMS-SF depression measure and CES-D measure were 3.30 (SD 3.94) and 5.99 (SD 5.27), respectively. See
Demographic characteristics of website users and nonusers (controlling for study site).
Variable | Website users (n=84) | Nonusers (n=133) | Total sample (N=217) | ||||||
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Non-Hispanic White | 68 (81.0) | 92 (69.2) | 160 (73.7) | refa | ||||
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Non-Hispanic Black | 9 (10.7) | 31 (23.3) | 40 (18.4) | <.001 | ||||
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All other races | 7 (8.3) | 10 (7.5) | 17 (7.8) | .86 | ||||
Age (years), mean (SD) | 65.37 (7.03) | 62.79 (6.27) | 63.79 (6.67) | <.001 | |||||
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High school or less | 16 (19.0) | 33 (25.2) | 49 (22.8) | ref | ||||
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Some college | 26 (31.0) | 37 (28.2) | 63 (29.3) | .40 | ||||
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College degree | 22 (26.2) | 33 (25.2) | 55 (25.6) | .08 | ||||
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Graduate/professional degree | 20 (23.8) | 28 (21.4) | 48 (22.3) | .60 | ||||
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<45,000 | 11 (13.1) | 25 (18.8) | 36 (16.6) | ref | ||||
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45,001-75,000 | 21 (25.0) | 31 (23.3) | 52 (24.0) | .34 | ||||
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≥75,001 | 49 (58.3) | 66 (49.6) | 115 (53.0) | .25 | ||||
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Missing | 3 (3.6) | 11 (8.3) | 14 (6.5) | .30 | ||||
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Never married, divorced, separated, widowed, single, unknown, refused | 12 (14.3) | 30 (22.6) | 42 (19.4) | ref | ||||
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Married or domestic partnership | 72 (85.7) | 103 (77.4) | 175 (80.6) | .08 | ||||
Health literacy, mean (SD) | 13.51 (1.94) | 12.87 (2.39) | 13.12 (2.24) | .18 | |||||
Blunting, mean (SD) | 1.65 (1.24) | 1.31 (1.50) | 1.44 (1.41) | .29 | |||||
Monitoring, mean (SD) | 3.01 (1.93) | 2.11 (2.29) | 2.46 (2.20) | .01 | |||||
Self-efficacy for re-entry, mean (SD) | 8.83 (0.98) | 8.70 (1.18) | 8.75 (1.11) | .07 | |||||
Depression (POMS-SFc), mean (SD) | 2.89 (3.25) | 3.56 (4.31) | 3.30 (3.94) | .15 | |||||
Depression (CES-Dd), mean (SD) | 5.29 (4.17) | 6.43 (5.84) | 5.99 (5.27) | <.001 | |||||
Tense/anxiety, mean (SD) | 4.36 (3.74) | 5.01 (4.65) | 4.76 (4.32) | .02 | |||||
Fatigue, mean (SD) | 5.72 (4.64) | 6.61 (5.28) | 6.27 (5.05) | <.001 | |||||
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0 | 66 (79.5) | 101 (77.1) | 167 (78.0) | ref | ||||
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1 | 10 (12.1) | 18 (13.7) | 28 (13.1) | .52 | ||||
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≥2 | 7 (8.4) | 12 (9.2) | 19 (8.9) | .30 | ||||
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No | 52 (61.9) | 96 (72.2) | 148 (68.2) | .09 | ||||
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Yes | 32 (38.1) | 37 (27.8) | 69 (31.8) | |||||
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No | 39 (46.4) | 66 (49.6) | 105 (48.4) | .80 | ||||
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Yes | 45 (53.6) | 67 (50.4) | 112 (51.6) |
aref: reference.
bTotal n=215.
cPOMS-SF: Profile of Mood States Short Form.
dCES-D: Center for Epidemiological Studies-Depression subscale.
eTotal n=214.
Of the 217 patients, 84 (38.7%) reported using the website versus the 133 (61.3%) who reported that they did not use the website. When controlling for study site, there were significant differences between those who used PROGRESS and those who did not use PROGRESS in the following variables: race/ethnicity, age, style of coping, depression, anxiety, and fatigue. Specifically, a larger proportion of non-Hispanic White (68/160, 42.5%), compared with non-Hispanic Black (9/40, 23%), participants used PROGRESS (
In the multivariable model, non-Hispanic Black participants were significantly less likely to use the website than non-Hispanic White participants (OR 0.28, 95% CI 0.25-0.32;
Multivariable logistic regression analysis (controlling for study site).
Variable | ORa | SE | LCLb | UCLc |
Non-Hispanic Blackd | 0.28 | .07 | 0.25 | 0.32 |
All other races/ethnicitiesd | 0.77 | .29 | 0.43 | 1.36 |
Age | 1.05 | .01 | 1.04 | 1.07 |
Monitoring | 1.27 | .10 | 1.04 | 1.56 |
Self-efficacy for re-entry | 0.89 | .07 | 0.78 | 1.01 |
Mood total | 0.98 | .004 | 0.97 | 0.98 |
Radiation therapye | 1.42 | .19 | 0.98 | 2.07 |
Surgerye | 1.19 | .39 | 0.56 | 2.57 |
aOR: odds ratio.
bLCL: lower confidence limit.
cUCL: upper confidence limit.
dReference group: non-Hispanic White.
eReference group: did not receive treatment.
PROGRESS was more likely to be used by PC survivors who were high on monitoring style of coping, a coping style to deal with threat that involves scanning for and magnifying disease-related cues [
Results also showed that PROGRESS was more likely to be used by non-Hispanic, White PC survivors, confirming prior established patterns of internet use. A study conducted by the Pew Research Center indicated that internet usage is more common in White compared with non-Hispanic Black populations [
PROGRESS users’ relatively positive mood (less depressed, less anxious, and less fatigued) allows them to mobilize in support of their health, which includes taking advantage of the information PROGRESS has to offer. Using PROGRESS and other related health resources may be blunted in patients who are highly depressed, as depressed patients often cannot empower themselves to take care of their health. Similarly, high anxiety may hinder the use of PROGRESS, as these patients may have anxiety about the information that PROGRESS will provide. Patients with high levels of fatigue may not feel energized to a degree necessary to use a web-based resource such as PROGRESS. Our results also showed that older patients were more likely to use PROGRESS. Though this finding was statistically significant, it was not clinically significant, with an average age of 65.37 years compared with 62.79 years. It is encouraging that older men are using this web-based resource, as PC survivors more generally are an older demographic given the average age of diagnosis is 66 years old [
The study findings highlight the need for strategies to increase patient engagement with web-based tools, as less than 40% of the intervention group reported that they used PROGRESS. Engagement needs to go beyond the commonly accepted development and access strategies, such as ensuring access to a computer and the internet (eg, providing tablets in clinic during down time), ensuring comfort with using a computer and the internet, using language and terminology appropriate for a low health-literate population, incorporating culturally targeted material into the program, and prompting use through text message or email reminders. The value of the recommended services needs to be clearly communicated, and if possible, gamification elements, such as badges or virtual competition with other users, can be incorporated.
Indeed, our study team did engage in a thoughtful, iterative process to design the PROGRESS website that included stakeholder feedback. Based on the initial design phase and the usability testing, the PROGRESS site was very positively evaluated. We think that this highlights the need for ongoing usability and acceptability testing, rather than collecting these data at one time point prior to intervention launch. This experience has suggested that, for future studies, researchers should build in a regular review of usage, usability, and acceptability and devise a plan for how to handle the responses if certain intervention components are not well-received. Collecting these data longitudinally during the RCT phase may not be able to inform the intervention being tested, but it would be useful to inform future interventions.
Low patient engagement is a threat to efforts to evaluate the efficacy of web-based tools. Before beginning a research study, power calculations are needed to ascertain sample size requirements necessary to detect clinically meaningful differences. Understanding that all of those enrolled in the intervention arm may not actually engage with the intervention may alter researchers’ plans for how many patients to enroll. On a related note, researchers may, a priori, plan to conduct their analyses in 2 ways: first, comparing intervention and control, and second, comparing within the intervention arm, users with nonusers. In addition, rather than “using website” as a simple binary variable, future research should employ more sophisticated website use tracking features that allow investigators to capture detailed website use, such as time spent with each page, pages with most views, and number of downloads.
This study is not without its limitations. First, the sample was highly homogenous and was mostly non-Hispanic White and high income, and thus, the results may not be generalizable to other, more diverse patient groups. Second, our “website use” variable was binary and therefore did not allow us to evaluate the full continuum of website usage from those who never logged in to the super-users who used PROGRESS over and over again. These limitations aside, we believe our study substantially contributes to the literature characterizing the patient profile of a web-based resource user.
Our study showed that, compared with nonusers, users of PROGRESS, a website for PC survivors, were more likely to be non-Hispanic White (compared with non-Hispanic Black participants), be older in age, have a higher monitoring style of coping, and have experienced higher levels of positive mood. Improved engagement features need to be developed and evaluated to increase the perceived value to patients. Additionally, the existence of a user patient profile indicates the potential to tailor web-based resources accordingly.
Center for Epidemiological Studies-Depression subscale
Consolidated Standards of Reporting Trials
Cognitive-Social Health Information Processing
Monitor/Blunter Style Scale
prostate cancer
Profile of Mood States Short Form
Prostate Cancer Survivorship Website
prostate specific antigen
randomized controlled trial
The study was funded by the National Cancer Institute (R01CA224918, P30CA006927, P30CA072720, and T32CA009035), the National Center for Advancing Translational Sciences (UL1TR003017), the Centers for Disease Control and Prevention (U01OH011690), and the American Cancer Society (RSG-15-021-01-CPPB).
None declared.