Correction: Access to Electronic Personal Health Records Among Patients With Multiple Chronic Conditions: A Secondary Data Analysis.

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The role of medical social workers in cancer clinical trial teams: A group case study of multidisciplinary perspectives.

INTRODUCTION: Social workers collaborate with a wide range of healthcare providers in clinical trial teams, yet their roles may not always be understood or supported by team members. It is currently unknown how social workers and multidisciplinary team members perceive social workers' roles in the clinical trial context. METHODS: Using a group case-study approach, social workers, core medical team members, and allied healthcare workers (n = 19) completed in-depth interviews to discuss the roles of social workers in a cancer clinical trial setting. FINDINGS: Social workers discussed their role as primarily patient-centered, perceiving themselves to be a counselor, patient advocate, and conduit. They also described areas of perceived limited role contribution. Other members of the multidisciplinary teams viewed the roles of social workers to be focused on being a conduit and coordinator. DISCUSSION: We found discordance in the way that social workers and their team members view the roles of social workers in clinical trials. Our data suggest that structural and interpersonal barriers may prevent social workers from working to the full extent of their license in a clinical trial context. Implications, future research, and suggestions for interventions to more fully integrate social workers into clinical trial settings are discussed.

Access to Electronic Personal Health Records Among Patients With Multiple Chronic Conditions: A Secondary Data Analysis.

BACKGROUND: In the United States, national incentives for offering access to electronic personal health records (ePHRs) through electronic means are geared toward creating a culture of patient engagement. One group of patients who stand to benefit from online access to ePHRs is the growing population with multiple chronic conditions (MCC). However, little is known about the current availability and use of ePHRs and patient portals among those managing MCC. OBJECTIVE: The aim was to determine the associations between number of chronic conditions and sociodemographic characteristics and usage of ePHRs, and to assess how the public's use of ePHRs varies across subpopulations, including those with MCC. METHODS: This study used data collected from the 2014 Health Information National Trends Survey (HINTS), and assessed differences in use of ePHRs between those with and without MCC (N=3497) using multiple logistic regression techniques. Variables associated with health care systems (insurance status, having a regular provider) and patient-reported self-efficacy were included in the statistical models. RESULTS: Those with MCC (n=1555) had significantly higher odds of accessing their records three or more times in the past year compared to those reporting no chronic conditions (n=1050; OR 2.46, 95% CI 1.37-4.45), but the overall percentage of those with MCC using ePHRs remained low (371 of 1529 item respondents, 25.63% weighted). No difference in odds of accessing their records was found between those reporting one chronic condition (n=892) and those reporting none (n=1050; OR 1.02, 95% CI 0.66-1.58). Significant differences in odds of accessing ePHRs were seen between income and age groups (P<.001 and P=.05, respectively), and by whether respondents had a regular provider (P=.03). CONCLUSIONS: We conclude that ePHRs provide a unique opportunity to enhance MCC patient self-management, but additional effort is needed to ensure that these patients are able to access their ePHRs. An increase in availability of patient access to their ePHRs may provide an opportunity to increase patient engagement and support self-management for all patients and especially those with MCC.

The Relationship of Health Literacy With Use of Digital Technology for Health Information: Implications for Public Health Practice.

OBJECTIVE: An understanding of the association of health literacy with patterns related to access and usage of digital technologies and preferences for sources of health information is necessary for public health agencies and organizations to appropriately target channels for health information dissemination. DESIGN: A cross-sectional telephone survey was conducted in New York State. Health literacy was assessed using the Morris Single-Item Screener, a self-report question. A weighted analysis was conducted utilizing Stata/SE. PARTICIPANTS: The final sample size of New York State residents used for analysis was 1350. RESULTS: In general, self-report health literacy did not predict digital technology use (ie, Internet and smartphone use, text messaging) but was associated with certain digital activities. People with low self-report health literacy were less likely to use search engines (P = .026) but more likely to get health information from social networking sites (P = .002) and use health-related phone apps (P = .046). With respect to health information seeking, those with lower self-report health literacy reported greater difficulty with their most recent search for health information. Furthermore, they were more likely to prefer text messages (P = .013) and radio (P = .022), 2 text-limited communication channels, to receive health information than those with higher self-report health literacy. CONCLUSIONS: While self-report health literacy does not appear to influence access to and use of digital technologies, there is a strong association with experiences searching for health information and preferences for health information sources. Public health agencies and organizations should consider the needs and preferences of people with low health literacy when determining channels for health information dissemination. They should also consider implementing interventions to develop health information-seeking skills in populations they serve and prepare information and materials that are easily accessible and understandable.

Cancer clinical trial providers' perspectives on communicating goals of care: A key informant study.

Objectives: There has been limited research to date exploring provider communication in the context of cancer clinical trials. To elucidate multidisciplinary care providers' experiences, this qualitative study sought to understand their perspectives and communication patterns around goals of care discussions with patients enrolled in cancer clinical trials. Methods: Semi-structured key informant interviews were conducted with a purposive sample of physicians, nurse practitioners, social workers, chaplains, nurses, and administrative staff in a cancer research hospital (N=19). Data were analyzed and interpreted using thematic analysis. Results: Providers hold varied perspectives on goals of care in cancer clinical trials, highlighting the tension and potential for misalignment between scientific and clinical (patient-centered) goals. Inherent institutional hierarchies may impede some team members from initiating goal discussions. Care transitions (e.g., stopping treatment or initiating hospice) offer critical opportunities for goals of care discussions. Conclusion: Conflicting perspectives among team members, perceptions of provider roles, and communication patterns could help explain some of the communication challenges previously documented in advanced cancer and clinical trial care. Innovation: This qualitative study contributes to the literature on healthcare team communication in the clinical trial context and highlights tangible opportunities to better leverage providers' diverse experience and improve patient-centered care.

Video-Based Interventions for Cancer Control: A Systematic Review.

Background. The use of videos for patient and public health education has been widely adopted and well documented in the literature. Aims. To conduct a systematic review of empirical studies that used video-based interventions for cancer prevention and control to document study designs, settings, approaches, targeted cancer sites and behaviors, and outcomes and to identify gaps in research and practice. Method. PubMed, PsychINFO, CINAHL, SCOPUS, and Web of Science were searched for studies published in the 30-year period from 1984 to 2014. Of 1,521 articles identified, duplicates were removed, and titles and abstracts of 779 were examined for eligibility. In all, 315 articles met the inclusion criteria and were coded by three independent coders. Interrater reliability was assessed. Descriptive frequencies and proportions were calculated. Results. Studies evaluating video interventions for cancer prevention and control have increased over time. The majority used randomized controlled trial designs (54%), followed by single-group pre-posttest designs (18%). Most were delivered in health care settings (39%). Detection (30%) and treatment (16%) were the cancer control continuum stages most frequently addressed, with breast cancer (29%) being the most frequently targeted cancer site. The behavior most commonly targeted was screening/early detection (39%). Topics such as caregiving, coping, palliative care, and end of life were rarely addressed. The majority (69%) reported being successful at achieving their stated objectives, though outcomes varied across studies. Conclusions. Video interventions have been widely utilized for cancer prevention and control, with demonstrated successes. Future research should test innovative designs and new delivery platforms and should include underrepresented topics and cancer sites.

Survivorship objectives in comprehensive cancer control plans: a systematic review.

PURPOSE: Over a decade ago, the National Academy of Medicine (NAM) recommended that states develop, implement, and evaluate plans that include consideration of survivorship care. The purpose of this study was to review comprehensive cancer control plans in the USA, specifically to identify the inclusion of cancer survivorship-focused goals and objectives and examine alignment of survivorship-focused objectives with the NAM recommendations. METHODS: Plans from 50 states, 7 territories, 5 tribal organizations, and the District of Columbia were reviewed to assess inclusion of survivorship goals and objectives. One territory plan was excluded because it did not include a survivorship-focused goal or objective (final n = 62). Objectives were assigned to domains based on NAM survivorship recommendations. RESULTS: Plans included between 1 and 19 survivorship-related objectives. Of the 345 survivorship objectives extracted and analyzed, the most prevalent domains addressed were raising awareness, survivorship care plans, healthcare professional capacity, and models of coordinated care. Employment-related concerns, developing and implementing quality measures, and investments in research were not frequently included in objectives. CONCLUSIONS: Comprehensive cancer control plans represent an important strategy that may reduce the impact of cancer and its treatment. State, territorial, and tribal coalitions can use these results to systematically focus future survivorship efforts on areas relevant to their region and population. IMPLICATIONS FOR CANCER SURVIVORS: The growing number of survivors requires broad-ranging policy strategies. Future efforts are needed to assess the implementation and impact of plan strategies to improve the overall wellness of cancer survivors.

Survivorship Science at the NIH: Lessons Learned From Grants Funded in Fiscal Year 2016.

Federal investment in survivorship science has grown markedly since the National Cancer Institute's creation of the Office of Cancer Survivorship in 1996. To describe the nature of this research, provide a benchmark, and map new directions for the future, a portfolio analysis of National Institutes of Health-wide survivorship grants was undertaken for fiscal year 2016. Applying survivorship-relevant terms, a search was conducted using the National Institutes of Health Information for Management, Planning, Analysis and Coordination grants database. Grants identified were reviewed for inclusion and categorized by grant mechanism used, funding agency, and principal investigator characteristics. Trained pairs of coders classified each grant by focus and design (observational vs interventional), population studied, and outcomes examined. A total of 215 survivorship grants were identified; 7 were excluded for lack of fit and 2 for nonresearch focus. Forty-one (19.7%) representing training grants (n = 38) or conference grants (n = 3) were not coded. Of the remaining 165 grants, most (88.5%) were funded by the National Cancer Institute; used the large, investigator-initiated (R01) mechanism (66.7%); focused on adult survivors alone (84.2%), often breast cancer survivors (47.3%); were observational in nature (57.3%); and addressed a broad array of topics, including psychosocial and physiologic outcomes, health behaviors, patterns of care, and economic/employment outcomes. Grants were led by investigators from diverse backgrounds, 28.4% of whom were early in their career. Present funding patterns, many stable since 2006, point to the need to expand research to include different cancer sites, greater ethnoculturally diverse samples, and older (>65 years) as well as longer-term (>5 years) survivors and address effects of newer therapies.

Perspectives on Palliative Care in Cancer Clinical Trials: Diverse Meanings from Multidisciplinary Cancer Care Providers.

BACKGROUND: Palliative care (PC) is often misunderstood as exclusively pertaining to end-of-life care, which may be consequential for its delivery. There is little research on how PC is operationalized and delivered to cancer patients enrolled in clinical trials. OBJECTIVE: We sought to understand the diverse perspectives of multidisciplinary oncology care providers caring for such patients in a teaching hospital. METHODS: We conducted qualitative semistructured interviews with 19 key informants, including clinical trial principal investigators, oncology fellows, research nurses, inpatient and outpatient nurses, spiritual care providers, and PC fellows. Questions elicited information about the meaning providers assigned to the term "palliative care," as well as their experiences with the delivery of PC in the clinical trial context. Using grounded theory, a team-based coding method was employed to identify major themes. RESULTS: Four main themes emerged regarding the meaning of PC: (1) the holistic nature of PC, (2) the importance of symptom care, (3) conflict between PC and curative care, and (4) conflation between PC and end-of-life care. Three key themes emerged with regard to the delivery of PC: (1) dynamics among providers, (2) discussing PC with patients and family, and (3) the timing of PC delivery. CONCLUSION: There was great variability in personal meanings of PC, conflation with hospice/end-of-life care, and appropriateness of PC delivery and timing, particularly within cancer clinical trials. A standard and acceptable model for integrating PC concurrently with treatment in clinical trials is needed.

Social media for breast cancer survivors: a literature review.

PURPOSE: Social media may offer support to individuals who are navigating the complex and challenging experience of cancer. A growing body of literature has been published over the last decade exploring the ways cancer survivors utilize social media. This study aims to provide a systematic synthesis of the current literature in order to inform cancer health communication practice and cancer survivorship research. METHODS: Using PRISMA guidelines, four electronic databases were searched to retrieve publications on breast cancer and social media published between 2005 and 2015. The final sample included 98 publications (13 commentaries and reviews, 47 descriptive studies, and 38 intervention studies). Intervention studies were assessed for key features and outcome measures. Studies utilizing content analysis were further evaluated qualitatively. RESULTS: Online support groups were the most commonly studied platform, followed by interactive message boards and web forums. Limited research focuses on non-Caucasian populations. Psychosocial well-being was the most commonly measured outcome of interest. While social media engagement was assessed, few standardized measures were identified. Content analyses of social media interactions were prevalent, though few articles linked content to health outcomes. CONCLUSIONS: The current literature highlights the impact and potential utility of social media for breast cancer survivors. Future studies should consider connecting social media engagement and content to psychosocial, behavioral, and physical health outcomes. IMPLICATIONS FOR CANCER SURVIVORS: Online groups and communities may improve the well-being of breast cancer survivors by providing opportunities to engage with wider social networks, connect with others navigating similar cancer experiences, and obtain cancer-related information. Researchers should consider the potential role of social media in addressing the unmet needs of breast cancer survivors, and particularly the implications for clinical and public health practice.

Pediatric injury information seeking for mothers with young children: The role of health literacy and ehealth literacy.

BACKGROUND: An understanding of preferred sources of injury information among parents is needed to develop best practices for information dissemination. Yet, almost no research examines injury information seeking for a national sample of mothers. METHODS: A cross-sectional online survey was conducted in 2013 with 1081 mothers in the United States (U.S.) with at least one child <6 years. We measured self-report health literacy with the Morris Single-Item Screener (18% low), and eHealth literacy using the eHEALS (28% low). RESULTS: The internet was the most preferred source for injury information (76%), followed by health providers (44%), and family/friends (35%). Most mothers selected the internet as the first choice for information about bicycle helmets (65%) and car seats (63%). For poison prevention, preferences were mixed; 48% internet compared with 41% health providers. Mothers with low health literacy were more likely to have discussed injury prevention with their doctors (P = 0.022) and searched for injury information (P = 0.001), but less likely to report the internet as a top source (P < .0001). Mothers with low eHealth literacy were less likely to search for injury information (P < 0.0001) and report the internet as a top source (P < 0.0001), and slightly more likely to rely on health providers for information (P = 0.028). CONCLUSIONS: Findings suggest the internet is a common source of injury prevention information, but health providers remain a valuable resource for mothers, especially those with lower literacy skills. Despite widespread internet use, health providers should be sure to communicate injury prevention information to mothers, especially those at risk for low health literacy and eHealth literacy.