Digital literacy linked to engagement and psychological benefits among breast cancer survivors in Internet-based peer support groups

© 2019 John Wiley & Sons Ltd Objective: Internet-based peer support groups (ISGs) represent an innovative, scalable approach to addressing information and support needs of cancer survivors. However, this innovation may not benefit survivors equally due to population variance in digital literacy. This study examined how digital literacy influences level of engagement in and psychological benefits from participating in ISGs for breast cancer (N = 183). Methods: Secondary analysis of data from a randomised trial of ISGs that included behavioural measures of engagement, subjective ratings and psychological distress symptoms. Results: Digital literacy was positively related to education level (p =.005). Relative to women with high digital literacy, those with lower digital literacy were more likely to report difficulties using the ISG and to value the user's guide and facilitator assistance (all p's <.05). Digital literacy was negatively correlated with computer anxiety pre-intervention, distress before and after online chat during the intervention and post-intervention depressive symptoms (all p's <.05). Conclusion: Low digital literacy is associated with computer anxiety and barriers to ISG use, as well as distress during and after ISG use. Digital literacy must be taken into account when designing or delivering innovative digital interventions for cancer survivors

Patient-Reported Communication With Their Health Care Team About New Treatment Options for Chronic Lymphocytic Leukemia

Chronic lymphocytic leukemia (CLL) often requires consideration of multiple treatment options. Shared decision-making (SDM) is important, given the availability of increasingly novel therapies; however, patient&ndash;provider treatment conversations vary. We examined relationships between patient&ndash;provider discussions of new CLL treatment options and sociodemographic, clinical, and patient&ndash;provider communication variables among 187 CLL patients enrolled in Cancer Support Community&rsquo;s Cancer Experience Registry. Factors significantly associated with self-reports of whether patients&rsquo; providers discussed new CLL treatment options with them were examined using &chi;2 tests, t tests, and hierarchical logistic regression. Fifty-eight percent of patients reported discussing new treatment options with their doctor. Patients with higher education were 3 times more likely to discuss new treatment options relative to those with lower education (OR = 3.06, P &lt; .05). Patients who experienced a cancer recurrence were 7 times more likely to discuss new treatment options compared to those who had not (OR = 7.01, P &lt; .05). Findings offer insights into the correlates of patient&ndash;provider discussions of new CLL treatment options. As novel therapies are incorporated into standards of care, opportunities exist for providers to improve patient care through enhanced SDM. </jats:p

HSR19-113: Valued Outcomes in the Cancer Experience (VOICE™): Scale Development and Initial Validation

Background: Despite growing recognition that patient preferences and values should inform cancer care, patients’ views continue to be under-represented. We developed a quantitative tool, Valued Outcomes in the Cancer Experience (VOICE), to measure patient priorities and to understand discrepancies between what matters most to patients and what patients believe they can control. This study presents VOICE development and initial validation. Methods: 459 cancer patients completed an online survey and rated level of importance and perceived control for 54 value items (0=not at all; 4=very much). Items were derived from patient and caregiver focus groups and included themes such as independence, functional abilities, planning for the future, symptom management, health knowledge, and social support. Participants also completed validated measures of hope, optimism, quality of life, financial toxicity, spiritual well-being, illness perceptions, social support, self-efficacy, intolerance of uncertainty, and cancer-related distress. Iterative exploratory factor analysis (EFA) with direct oblique rotation, magnitude of importance and control ratings, and Pearson correlations between items and validation measures were used to inform scale refinement. Results: Participants were 86% non-Hispanic white; mean age=60 years, SD=10; 38% breast cancer, 18% blood, 9% lung, 9% prostate; mean time since diagnosis=6.5 years, SD=6; 22% metastatic. Items that did not load in the EFA, or were not associated with conceptually relevant validation measures, were removed or reworded. The final EFA explained over half of the variance in the data and demonstrated good fit, with absolute and relative fit indices in established acceptable ranges (P&lt;.001). The refined VOICE measure addresses diverse themes including access to care, maintaining independence, longevity, shared decision making, illness understanding, symptom management, emotional support, connection to illness community, spirituality, and end of life preparation. Conclusions: The study results demonstrate a framework for developing a quantitative, multidimensional measure of patient values. By understanding what matters most to patients, VOICE is positioned to bring patient preferences to the foreground of cancer care, contribute to shared decision making, and enhance care. Next steps include further validation of this tool in diverse settings, including oncology practices and community-based organizations.</jats:p

Valued outcomes in the cancer experience: Patient priorities and control.

84 Background: In the era of value-based cancer care, identifying what is important to cancer survivors, and their perceived control over these experiences, can inform shared decision-making and support quality care. We examined cancer patient priorities and control to guide the development of a new measure of patient value, Valued Outcomes in the Cancer Experience (VOICE). Methods: 459 cancer patients completed an online survey and rated level of importance and control over 54 value items (0 = not at all; 4 = very much). Items of most and least importance, items with most and least control, and rating discrepancies (importance-control) were identified. Bivariate associations with socio-demographics were examined. Results: Participants were 86% non-Hispanic White; mean age = 60 years, SD= 10; 38% breast cancer, 18% blood, 9% lung, 9% prostate; mean time since diagnosis = 6.5 years, SD= 6; 22% metastatic. Items of highest importance (quite a bit to very much) included, &ldquo;Having your health care team (HCT) talk to you in a way that makes sense to you&rdquo; (99% of participants); &ldquo;Making decisions for yourself&rdquo; (99%); &ldquo;Talking honestly with your HCT about your illness&rdquo; (99%). Participants reported the most control over, &ldquo;Talking honestly with your HCT about your illness&rdquo; (89%); &ldquo;Making decisions for yourself&rdquo; (88%), &ldquo;Understanding your illness&rdquo; (84%). Greatest discrepancies were, &ldquo;Having your illness not get worse or come back&rdquo; (96% Important; 27% Control); &ldquo;Having energy to do things that are important to you (98% Important; 41% Control); &ldquo;Being able to afford medical expenses&rdquo; (96% Important; 49% Control); &ldquo;Having a death free from suffering&rdquo; (91% Important; 40% Control); &ldquo;Having your medical providers communicate with each other about your care&rdquo; (94% Important; 44% Control). Greater importance/control discrepancies were associated with lower income, unemployment due to disability, and poorer health ( ps &lt; .05). Conclusions: Cancer patients experience notable discrepancies between personal priorities and their ability to control these experiences, suggesting key areas for intervention and support. Next steps include psychometric assessment to refine the VOICE scale to guide clinical and research efforts to improve patient care outcomes. </jats:p