Medicare Decision-making, Understanding, and Satisfaction Among Cancer Survivors.

With increased age as a leading risk factor for cancer, many patients depend on Medicare benefits to manage their disease. As such, this study explores (1) Medicare decision-making, (2) Medicare satisfaction, and (3) understanding of Medicare coverage among cancer patients. This cross-sectional study used focus group and survey methodology to explore patient decision-making regarding Medicare benefit selection and patient understanding and satisfaction of Medicare. Focus group findings informed a subsequent survey which was completed by 172 Medicare beneficiaries between December 2018 and January 2019. Quantitative and qualitative analyses were conducted. Findings suggest that although Medicare beneficiaries believe they understand their coverage and are largely satisfied with benefits, many cannot accurately identify the appropriate components of the program particularly regarding how drug benefits are structured. In-depth qualitative analyses from the focus group indicated not only a lack of understanding but a fear of unexpected out-of-pocket costs or coverage challenges. This study illustrates the ongoing challenges with educating Medicare beneficiaries regarding benefits, coverage, and financial obligations of the program. For cancer patients, in-depth and meaningful educational opportunities are critical as is access to multiple components of the Medicare program that can prove vital to the treatment and management of their disease.

Can You Hear Me Now? Effects of Patient-Centered Communication With Young Adults Aged 26 to 39.

Patient-centered communication (PCC) is critical to the delivery of quality health care services. Although numerous health outcomes have been connected to patient-provider communication, there is limited research that has explored the processes and pathways between communication and health. Research among young adults (ages 26-39 years) is even more scarce, despite findings that health communication does vary with age. This cross-sectional study used data from the 2014 Health Interview National Trends Survey to explore the relationship between PCC, patient trust, patient satisfaction, social support, self-care skills, and emotional well-being among young adults aged 26 to 39 years. Our results showed that income, history of depression diagnosis, PCC, patient trust, social support, and patient self-efficacy (self-care skills) were all significantly related to emotional well-being. These findings suggest the need to explore the means through which communication can impact emotional well-being, specifically among young adults who are in poor health or have a history of depression. Future research should also include longitudinal studies, in order to determine causality and directionality among constructs.

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-provider treatment conversations vary. We examined relationships between patient-provider discussions of new CLL treatment options and sociodemographic, clinical, and patient-provider communication variables among 187 CLL patients enrolled in Cancer Support Community's Cancer Experience Registry. Factors significantly associated with self-reports of whether patients' providers discussed new CLL treatment options with them were examined using χ2 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 < .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 < .05). Findings offer insights into the correlates of patient-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.

Exploring the Experiences of Patients in the Oncology Care Model.

PURPOSE: The Oncology Care Model (OCM) was developed to improve care while also supporting patient-centered practices. This model could significantly affect experiences of patients with cancer; however, previous studies have not explored patient perspectives. PATIENTS AND METHODS: This cross-sectional study used focus group and survey methodology to explore patient experiences in the OCM. The sample included 213 patients (OCM patients, n = 130 recruited within OCM practices; non-OCM patients, n = 83 recruited via e-mail from the Cancer Support Community Cancer Experience Registry). RESULTS: Findings suggest that patients in OCM practices were more likely to report that their cancer care team asked about social/emotional distress or concerns and more likely to have social/emotional resources offered. OCM patients were also more likely to have discussed advance directives with providers. They were also more likely to be satisfied with provider explanations of treatment benefits as well as treatment risks and adverse effects. Lastly, OCM patients were significantly more satisfied with discussion of treatment costs and provided higher ratings of preparation by their cancer care team for management of adverse effects. CONCLUSION: Patients in this study reported experiences consistent with many of the key goals of the OCM. This is promising and may indicate the need to expand the model. However, because of the potential selection bias of our sampling method, more research is needed.

Racial Disparities in a Sample of Inpatient Youth with ASD.

Although more than one in 10 youth with Autism Spectrum Disorder (ASD) is admitted to a psychiatric facility before they reach adulthood, the inpatient population is underrepresented in research. Furthermore, Black youth are more likely to be psychiatrically hospitalized, compared to their White counterparts. Yet, prior research has been inconsistent in potential racial differences in ASD symptoms and severity. This study examined differences in the symptom presentation of psychiatrically hospitalized Black and White youth with ASD. Researchers collected data as part of a larger study of youth admitted to one of six US specialized inpatient psychiatric units between 2013 and 2017. We used bivariate and multivariate models to analyze the data. The study included 654 youth diagnosed with ASD, with an average age of 13 years. While bivariate analyses found that Black youth had lower written language and daily living skills and more impaired social affect and inappropriate speech, multivariate regression models suggested that overall ability level and age may be driving these differences. Specifically, the only variables that significantly predicted adaptive functioning (written language, daily living) and behavioral profiles (social affect, inappropriate speech) were verbal ability, IQ, and age. Race was not a significant predictor in any of the models. Cultural diversity and competency are vital to the identification and treatment of ASD clinical care. Thus, understanding the role race may play in early detection and accurate diagnosis is important to improving ASD identification, diagnosis, and treatment. Autism Res 2020, 13: 532-538. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examined differences in autism symptoms between Black and White youth in psychiatric hospitals. We found that while it initially appeared that Black and White youth differed in written language and daily living skills, these racial differences were not significant once we accounted for differences in IQ, age, and verbal ability. Our findings suggest that providers should pay greater attention to other potential reasons for racial disparities in autism services.

Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes.

Sharing data is critical to advancing science, improving health, and creating advances in the delivery of health care services. The value of sharing data for cancer research purposes is well established, and there are multiple initiatives under way that address this need. However, there has been less focus on cancer patient perspectives regarding the sharing of their health information for research purposes. This study examined cancer patient perspectives on the sharing of de-identified health data for research purposes including both data from medical records and mobile applications. This cross-sectional study used survey methodology to collect data from cancer patients/survivors (N = 677). Overall, we found that participants were largely willing (71%) to share de-identified medical data and were most motivated (88%) by a desire to help other cancer patients. Patients were less likely to be comfortable sharing mobile application data (34%). It is vital that we understand patient perspectives on data sharing and work with them as partners, valuing their unique contributions, and attending to their preferences.

Brief Report: Participation of Black and African-American Families in Autism Research.

Black and African-American families are underrepresented in research on autism spectrum disorder (ASD) and few studies have explored how to increase their involvement. To address this gap in the literature, this study explored the perspectives of 22 Black families raising children with ASD in order to identify facilitators and barriers to research participation; as well as suggestions to increase their involvement in ASD studies. Facilitators to research involvement included a desire to contribute to ASD research inclusive of Black families; to seek information and support for child and/or caregiver; and, to engage with culturally responsive research team members. Barriers to research involvement included stigma; denial, shame, and/or embarrassment; distrust of the research process; lack of time/interest; and research material inaccessibility or literacy issues.

Perspectives of Patients With Cancer on the Quality-Adjusted Life Year as a Measure of Value in Healthcare.

OBJECTIVES: Healthcare expenditures in the United States continue to grow; to control costs, there has been a shift away from volume-focused care to value-based care. The incorporation of patient perspectives in the development of value-based healthcare is critical, yet research addressing this issue is limited. This study explores awareness and understanding of patients with cancer about the quality-adjusted life year (QALY), as well as their perspectives regarding the use of the QALY to measure value in healthcare. METHODS: This cross-sectional study used survey methodology to explore patient awareness, understanding, and perspectives on the QALY. A total of 774 patients with cancer and survivors completed this survey in June and July of 2017. Quantitative and qualitative analyses were conducted. RESULTS: Results showed that there is limited awareness of the QALY among patients with cancer and survivors and minimal understanding of how the QALY is used. Only one quarter of respondents believed that the QALY was a good way to measure value in healthcare. Some participants (5%) stated that the QALY could be personally helpful to them in their own decision making, indicating the possible usefulness of the QALY as a decision aid in cancer care. Nevertheless, participants expressed concern about other decision makers using the QALY to allocate cancer care and resources and maintained a strong desire for autonomy over personal healthcare choices. CONCLUSIONS: Although participants believed that the QALY could help them make more informed decisions, there was concern about how it would be used by payers, policymakers, and other decision makers in determining access to care. Implications for policy and research are discussed.

Patient-Provider Communication: Experiences of Low-Wage-Earning Breast Cancer Survivors in Managing Cancer and Work.

In 2017, there will be more than 250,000 new diagnoses of invasive breast cancer; most cases will occur in working-age women. The goal of this qualitative study was to explore low-wage-earning breast cancer survivors' experiences communicating with their oncology team about cancer and employment issues. Twenty-four low-wage-earning breast cancer survivors in the USA were interviewed in 2012 using a structured interview protocol. Sociodemographic data, cancer history, and patient-provider communication experiences regarding the management of cancer and work were collected. Interviews were analyzed using grounded theory strategy of constant comparative analysis. Low-wage-earning breast cancer survivors' experiences communicating with their oncology team about employment and cancer focused on three dimensions of patient-provider communication: extent, quality, and content. Over 70% of respondents reported no communication or only routine communication with their providers regarding work; three quarters of women reported poor or standard communication quality, and content of work-related communication covered scheduling issues, work absences, continuing to work during treatment, and financial concerns. Communication between oncology care teams and low-wage-earning cancer patients is critical to the successful management of treatment and work responsibilities given the vulnerable employment situation of these women. There is a need for education of oncology team members about how cancer and its treatment can impact employment for all workers, but especially for low-wage workers, thereby allowing the care team to address these issues proactively and help patients successfully manage both cancer treatment and work responsibilities.

The Relationship Between Children's Exposure to Intimate Partner Violence and Intellectual and Developmental Disabilities: A Systematic Review of the Literature.

Children exposed to intimate partner violence (IPV) can experience negative social, emotional, behavioral, and academic outcomes. A growing body of research has examined the relationship between intellectual and developmental disabilities (IDD) and IPV exposure. We systematically reviewed the literature for research exploring this relationship and found a limited number of studies meeting inclusion criteria ( N = 11). Over half (64%) identified a significant relationship between IPV and IDD, although the cross-sectional methodologies of the majority of studies (82%) prevented the ability to ascertain directionality. Further, the studies defined and measured IPV and IDD in various ways. Some studies were limited by poor external validity and small sample sizes. More research is needed to understand the intersection between IPV exposure and IDD.

"We Had to Keep Pushing": Caregivers' Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care.

Black children with autism spectrum disorder (ASD) are diagnosed later than their White peers, are more likely to be misdiagnosed, and are less likely to receive early intervention services or a developmental evaluation by three years old. Using a grounded theory approach, we solicited the perspectives of parents and other primary caregivers of Black children with ASD on barriers and facilitators to ASD screening and referrals in primary care. A socioeconomically diverse sample of 22 female caregivers participated. Four themes emerged. First, while some caregivers noted their child's primary healthcare providers facilitated a timely ASD diagnosis, other participants reported these providers ignored early concerns about child developmental delays. Second, many participants felt racial bias negatively impacted caregiver-primary healthcare provider interactions. Third, legal/custodial issues slowed caregivers' abilities to follow up on referrals from their primary healthcare providers. Finally, caregivers described denial, shame, and stigma relating to ASD in the Black community as possible factors for delayed follow up to referrals. Differences based on socioeconomic status are discussed. Efforts to improve family-centered, culturally relevant care for all Black caregivers raising children with or at-risk for ASD are needed, particularly for those families experiencing the multiple effects of poverty.

Correction to: A Systematic Review of Community Health Workers' Role in Occupational Safety and Health Research.

The original version of this article unfortunately contained a mistake in the affiliation of co-author Ashley M. Bush.

A Systematic Review of Community Health Workers' Role in Occupational Safety and Health Research.

We systematically reviewed the literature to describe how community health workers (CHWs) are involved in occupational health and safety research and to identify areas for future research and research practice strategies. We searched five electronic databases from July 2015 through July 2016. Inclusion criteria were as follows: (1) study took place in the United States, (2) published as a full peer-review manuscript in English, (3) conducted occupational health and safety research, and (4) CHWs were involved in the research. The majority of 17 included studies took place in the agriculture industry (76%). CHWs were often involved in study implementation/design and research participant contact. Rationale for CHW involvement in research was due to local connections/acceptance, existing knowledge/skills, communication ability, and access to participants. Barriers to CHW involvement in research included competing demands on CHWs, recruitment and training difficulties, problems about research rigor and issues with proper data collection. Involving CHWs in occupational health and safety research has potential for improving inclusion of diverse, vulnerable and geographically isolated populations. Further research is needed to assess the challenges and opportunities of involving CHWs in this research and to develop evidence-based training strategies to teach CHWs to be lay-health researchers.

Working poor and working nonpoor cancer survivors: Work-related and employment disparities.

BACKGROUND: Many cancer survivors face challenges remaining at work during treatment or returning to work posttreatment. Workplace supports can ease the strain associated with managing the cancer-work interface. Limited research has examined the employment experiences of low-wage earning survivors, who are less likely to have access to workplace supports, overlooking a factor that may influence survivors' employment outcomes. AIMS: This study assessed differences in employment experiences between working poor (WP) and working nonpoor (WNP) cancer survivors in the United States. METHODS AND RESULTS: Data from the 2011 Medical Expenditure Panel Survey (MEPS) and the 2011 MEPS Experiences with Cancer Survivorship Supplement were analyzed to evaluate differences in workplace supports, cancer-related psychological job distress, productivity, and employment outcomes between WP and WNP cancer survivors. The sample included adults diagnosed with cancer within 5 years prior to survey completion and engaged in paid employment since diagnosis. Working poor respondents had income below 200% of the poverty level. Chi-square tests assessed differences between WP (n = 57) and WNP (n = 164) cancer survivors' demographic, cancer, and employment characteristics; cancer-related psychological job distress; employee productivity; and employment outcome measures. Multiple logistic regression analyses determined the independent association between WP status and these same variables controlling for sociodemographic confounders. Working poor survivors were more likely to take unpaid time off, change from full-time to part-time, to report cancer-related psychological job distress, negative influences on job productivity and employment outcomes, and less likely to have health insurance. In logistic regression analyses, those who took unpaid time off were more likely to be WP; being WP was also associated with poorer employment outcomes, after controlling for sociodemographics differences between WP and WNP. CONCLUSION: Working poor survivors had fewer workplace supports and poorer employment outcomes than WNP survivors, highlighting important occupational disparities for cancer survivors. Areas for future research are discussed.

Advance Care Planning Communication: Oncology Patients and Providers Voice their Perspectives.

Advance care planning helps to ensure that patients' end-of-life preferences are understood and discussed with providers. It is an important component of patient-centered care, particularly when patients are facing life-limiting illness. It also has ethical implications for providers, yet evidence suggests that these conversations are not always occurring, particularly in underserved populations. The aim of this study was to understand the challenges and personal beliefs regarding ACP through interviews with patients undergoing active cancer treatment and their oncology providers. This study took place at an urban, multispecialty cancer center in the mid-Atlantic region where approximately 1400 patients are treated each year. Findings revealed differences among both patients and providers in terms of their ACP knowledge, preferences, and practices. Overall, 70% of patients were familiar with advance directives (100% of White patients and 45.5% of Black patients), yet only 35% of them reported having completed one (55.6% of White patients and 18.2% of Black patients, although not statistically significant). Most providers (70%) held ACP conversations with patients with advanced illness only. They tended to make assumptions about the amount of information that patients desired and noted the significant challenges that were inherent with these types of conversations. Overall, ethical implications are inherent in ACP as patients are making medical decisions without always having necessary information. There are various reasons why providers may not supply information regarding potential outcomes and end-of-life planning and why patients may not request (or know to request) more medical information.

Managing cancer and employment: Decisions and strategies used by breast cancer survivors employed in low-wage jobs.

Advances in breast cancer screening and treatment have led to an overall 5-year survival rate of 90%. Many of these cancer cases are diagnosed in working women. Few studies have explicitly examined the cancer-work interface, as experienced by low-wage earning women with breast cancer. This study uses in-depth, semistructured interviews with 24 low-wage breast cancer survivors to identify employment decisions and factors that influenced or enabled these decisions, and examine the individual strategies and workplace supports used to manage the cancer-work interface among a subset of women (n = 13) who continued to work. Future research areas and clinical implications are discussed.

How Does Supervisor Support Influence Turnover Intent Among Frontline Hospital Workers? The Mediating Role of Affective Commitment.

Turnover among frontline hospital service workers can disrupt organizational effectiveness, reduce profitability, and limit the ability to provide high-quality, patient-centered care. This concern is compounded by the increasing reliance on frontline supervisors to manage this workforce, often without necessary training and support. However, research addressing the relationship between frontline supervisor support and intent to turnover among service workers and the process by which these variables are related is limited. By surveying 270 housekeeping and dietary service workers employed at 2 US hospitals, this study examined the relationship between supervisor support and turnover intent and assessed the mediating role of affective commitment between supervisor support and intent to turnover. Turnover intentions were lower for workers who reported greater levels of supervisor support and affective commitment; both supervisor support and affective commitment were significant predictors of turnover intent when tested individually. However, when controlling for affective commitment, supervisor support no longer predicted turnover intent, indicating that affective commitment fully mediated the relationship between supervisor support and intent to turnover. Implications for further research and organizational practice are discussed.