Family caregiver roles and challenges in assisting patients with cancer treatment decision-making: Analysis of data from a national survey.

BACKGROUND: We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision-making. METHODS: Family caregiver-reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021-7/2021). Four select-all-that-apply caregiver roles were explored: (1) observer (patient as primary decision-maker); (2) primary decision-maker; (3) shared decision-maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ2 and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. RESULTS: Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision-making role, 53.9% a shared decision-making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = -0.581, Wald = 10.69, p < .01). CONCLUSIONS: Most caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. PATIENT OR PUBLIC CONTRIBUTION: The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision-making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.

Importance of quality-of-life priorities and preferences surrounding treatment decision making in patients with cancer and oncology clinicians.

BACKGROUND: Shared decision-making (SDM) occurs when a patient partners with their oncologist to integrate personal preferences and values into treatment decisions. A key component of SDM is the elicitation of patient preferences and values, yet little is known about how and when these are elicited, communicated, prioritized, and documented within clinical encounters. METHODS: This cross-sectional study evaluated nationwide data collected by CancerCare to better understand current patterns of SDM between patients and their oncology clinicians. Patient surveys included questions about the importance of quality-of-life preferences and discussions regarding quality-of-life priorities with their clinicians. Clinician surveys included questions about the discussion of quality-of-life priorities and preferences with patients, the effect of quality-of-life priorities on treatment recommendations, and quality-of-life priority documentation in practice. RESULTS: Patient survey completers (n = 320; 33% response rate) were predominantly women (95%), had a diagnosis of breast cancer (59%), or were receiving active cancer treatment (59%). Clinician survey completers (n = 112; 5% response rate) predominately identified as hematologists or oncologists (66%). Although 67% of clinicians reported knowing their patients' personal quality-of-life priorities and preferences before finalizing treatment plans, only 37% of patients reported that these discussions occurred before treatment initiation. Most patients (95%) considered out-of-pocket expenses important during treatment planning, yet only 59% reported discussing out-of-pocket expenses with their clinician before finalizing treatment plans. A majority of clinicians (52%) considered clinic questionnaires as feasible to document quality-of-life priorities and preferences. CONCLUSIONS: Patients and clinicians reported that preferences related to quality-of-life should be considered in treatment decision making, yet barriers to SDM, preference elicitation, and documentation remain.

Exploring the role of psychosocial care in value-based oncology: Results from a survey of 3000 cancer patients and survivors.

PURPOSE: To explore the psychosocial needs of cancer patients and survivors across the United States and their implications for value-based oncology. DESIGN: A secondary analysis of findings from a cross-sectional national online survey. SAMPLE: Respondents were sampled and stratified by cancer type and geographic region to approximate the cancer-affected population of the United States. Breast, prostate, and colorectal were the most common cancers reported. Across surveys, the majority of respondents were female (57%), over 55 (60%), and white (70%) and had at least some college (36%). METHODS: Six online surveys were administered to cohorts of approximately 500 unique cancer patients and survivors. Survey topics included: (1) diagnosis, (2) treatment planning, (3) communication with providers, (4) insurance and financial concerns, (5) quality of life, side effects, and symptoms, and (6) survivorship and end-of-life. Descriptive analyses were used to explore psychosocial needs and experiences across three domains of patient-centered value in oncology. FINDINGS: Each survey received 500-527 responses. Respondents most commonly reported needing more information regarding their insurance coverage and out-of-pocket costs (65%), access to clinical trials (89%), and support organizations (45%). Forty-one percent were very or extremely distressed about cancer's impact on their ability to work and over 25% reported high-levels of cancer-related financial hardship. CONCLUSIONS: Patients and survivors reported significant unmet informational needs, financial hardship, distress, and symptoms or treatment side effects that interfered with daily life. Implications for Psychosocial Providers or Policy: Providers and payment reform advocates can improve value in oncology by ensuring access to comprehensive psychosocial care and informational support.

A comparison of adult-child and spousal cancer caregivers' participation in medical decisions.

BACKGROUND: Family caregivers often play a key role in medical decision-making for patients with cancer. Adult-children account for nearly half of caregivers, but often have less experience with serious illness care and decision-making and face unique relational challenges as the patient's child. Yet little research explores the potentially distinctive decision-making, involvement in decisions, and support needs of adult-child caregivers. METHODS: Analysis of survey data of U.S. cancer caregivers conducted by CancerCare® in 2021. Chi-square tests and multivariable regression models assessed whether adult-child and spousal caregivers differed on the type of medical decisions they participated in (e.g., treatment planning, medication management), who made the decision (e.g., caregiver or joint decision), and the resources that informed decisions (e.g., friends and family, education materials). RESULTS: Adult-children (N = 892) were less likely than spouses (N = 314) to participate in treatment planning (beta = -0.41; 95%CI = -0.81,-0.01), but more likely to be involved in decisions about whether to challenge medical authority (e.g., seeking alternative treatment, second opinion) (beta = 0.50; 95%CI = 0.22,0.78). Compared to spouses, adult-children made joint decisions with patients less often (-13.2-percentage points; 95%CI = -19.64,-6.67) and acted as primary decision-maker more frequently (5.60-percentage points; 95%CI = 0.01,10.43). More adult-children than spouses sought help and information regarding decisions from the oncology team (8.42-percentage points; 95%CI = 1.98,14.87) and friends and family (7.91-percentage points; 95%CI = 1.34,14.48). CONCLUSIONS: How cancer caregivers and patients are related to each other shapes caregivers' medical decision-making. Adult-children's and spouses' probabilities of participating in and influencing decisions differed for certain types of decisions while adult-children were more likely to seek information and social support regarding decisions. These findings highlight the importance of the patient's and caregiver's relationship type in medical decision-making, suggesting that decision support programs may be more effective if they tailor programs by relationship type.

Social Wellbeing in Cancer Survivorship: A Cross-Sectional Analysis of Self-Reported Relationship Closeness and Ambivalence from a Community Sample.

Improvements in early screening and treatment have contributed to the growth of the number of cancer survivors. Understanding and mitigating the adverse psychosocial, functional, and economic outcomes they experience is critical. Social wellbeing refers to the quality of the relationship with partners/spouses, children, or significant others. Close relationships contribute to quality of life and self-management; however, limited literature exists about social wellbeing during survivorship. This study examined positive and negative self-reported changes in a community sample of 505 cancer survivors. Fourteen items assessed changes in communication, closeness with partner/children, stability of the relationship, and caregiving burden. An exploratory factor analysis was conducted using a robust weighted least square procedure. Differences by sociodemographic and clinical characteristics were investigated. Respondents were mostly male, non-Hispanic white, and ≥4 years since diagnosis. Two factors, labeled Relationship Closeness and Ambivalence, emerged from the analysis. Women, younger survivors, individuals from minority groups, and those with lower income experienced greater negative changes in social wellbeing. Variations by treatment status, time since diagnosis, and institution were also reported. This contribution identifies groups of cancer survivors experiencing affected social wellbeing. Results emphasize the need to develop interventions sustaining the quality of interpersonal relationships to promote long-term outcomes.

Bias reported by family caregivers in support received when assisting patients with cancer-related decision-making.

BACKGROUND: Family caregivers play an increasing role in cancer treatment decision-making. We examined bias reported by family caregivers in the support they and their patient received from their healthcare team when making these decisions, including associations with distress. METHODS: Analysis of 2021 national survey data of family caregivers of patients with cancer (N = 2703). Bias experienced in decision support was assessed with the item: "Have you felt that the support you and the person with cancer have received for making cancer-related decisions by your doctor or healthcare team has been negatively affected by any of the following?" Check-all-that-apply response options included: age, race, language, education, political affiliation, body weight, insurance type or lack of insurance, income, religion, sexual orientation, and gender/sex. Chi-square and regression analyses assessed associations between bias and caregiver distress (GAD-2, PHQ-2). RESULTS: Of 2703 caregiver respondents, 47.4% (n = 1281) reported experiencing ≥1 bias(es) when receiving decision support for making cancer-related decisions. Bias was more prevalent among younger caregivers, males, transwomen/men or gender non-conforming caregivers, racial/ethnic minorities, and those providing care over a longer time period. The odds of having high anxiety (GAD-2 scores ≥ 3) were 2.1 times higher for caregivers experiencing one type of bias (adjusted OR, 2.1; 95% CI, 1.6-2.8) and 4.2 times higher for caregivers experiencing ≥2 biases (adjusted OR, 4.2; 95% CI, 3.4-5.3) compared to none. Similar results were found for high depression scores (PHQ-2 scores ≥ 3). CONCLUSIONS: Nearly half of caregivers involved in their care recipients' cancer-related decisions report bias in decision support received from the healthcare team. Experiencing bias was strongly associated with high psychological distress.

What Is Most Important to Family Caregivers When Helping Patients Make Treatment-Related Decisions: Findings from a National Survey.

Prioritizing patient values-who/what matters most-is central to palliative care and critical to treatment decision making. Yet which factors are most important to family caregivers in these decisions remains understudied. Using data from a U.S. national survey of cancer caregivers (N = 1661), we examined differences in factors considered very important by caregivers when partnering with patients in cancer treatment decision making by cancer stage and caregiver sociodemographics. Fifteen factors were rated on a 4-point Likert-scale from 'very unimportant' to 'very important.' Descriptive statistics were used to characterize caregiver factors and tabulate proportions of importance for each. Generalized linear mixed effect modeling was used to examine the importance of factors by cancer stage, and chi-square analyses were performed to determine associations between caregiver sociodemographics and the five most commonly endorsed factors: quality of life (69%), physical well-being (68%), length of life (66%), emotional well-being (63%), and opinions/feelings of oncology team (59%). Significant associations (all p's < 0.05) of small magnitude were found between the most endorsed factors and caregiver age, race, gender, and ethnicity, most especially 'opinions/feelings of the oncology team'. Future work is needed to determine the best timing and approach for eliciting and effectively incorporating caregiver values and preferences into shared treatment decision making.

Barriers and solutions to improve access for chimeric antigen receptor therapies.

Chimeric antigen receptor T cells are a potentially curative new therapeutic option, but access challenges remain. The limited number of certified treatment centers and the need to travel to these centers, the expenses of travel and lodging and the out-of-pocket costs associated with treatment pose a challenge for patients. Further, the logistics of follow-up coupled with an ad hoc reimbursement environment make chimeric antigen receptor T-cell treatment an unattractive proposition for many providers. The patient-specific nature of these gene therapies has made scaling up production difficult for manufacturers. Providing expanded financial assistance for patients and education for community oncologists, and addressing reimbursement challenges, can alleviate some of these access barriers.

Chimeric antigen receptor T cells are a new type of cancer treatment where the cells from a patient's own blood are changed in the laboratory and injected back into the patient so they attack cancer cells. While these drugs offer a possible cure for some cancers, patients have had problems getting these treatments because there are not many approved treatment centers. Patients have to travel to these centers, and there can be high out-of-pocket costs for travel, a place to stay and the treatment itself. The paper discusses several ways to make it easier to get these treatments, such as helping patients pay for lodging and travel and changing insurance payment policies for chimeric antigen receptor T cell treatment.

Patient activation and treatment decision-making in the context of cancer: examining the contribution of informal caregivers' involvement.

PURPOSE: The present work investigated the relationship between patient activation, treatment decision-making, and adherence to the prescribed treatment regimen. Given the role of informal caregivers in patient-reported outcomes, it was additionally assessed whether caregiver involvement acted as a moderator of this relationship. METHODS: Survey data collected from 504 cancer survivors were utilized. Structural equation modeling (SEM) controlling for covariates was used to examine the relationship between patient activation measure (PAM), caregiver involvement, and the identified outcomes. Moderator analysis was conducted using multiple group SEM. RESULTS: Patient activation was significantly associated with treatment planning being reflective of survivors' goals and values (p < 0.001); adherence to treatment (p = 0.011); and satisfaction (p < 0.001). Caregiver's involvement significantly moderated the association between activation and adherence to treatment. CONCLUSIONS: Patient activation was positively associated with all three selected outcomes. However, for cancer survivors reporting low rates of caregiver's involvement, patient activation was not associated with treatment adherence. Research is needed to test and deliver self-management interventions inclusive of informal caregivers. IMPLICATIONS FOR CANCER SURVIVORS: Findings supported the need not only to monitor and sustain patient activation across the cancer continuum, but also to assume a dyadic perspective when designing self-management interventions in cancer survivorship.

Development of an Actionable Framework to Address Cancer Care Disparities in Medically Underserved Populations in the United States: Expert Roundtable Recommendations.

PURPOSE: Cancer disparities persist among medically underserved populations despite widespread efforts to address them. We describe the development of a framework for addressing cancer care disparities across the cancer care continuum (CCC), guided by the CCC domains established by the Institute of Medicine/National Academies of Sciences, Engineering, and Medicine (IOM/NAS). MATERIALS AND METHODS: An environmental scan was conducted to identify strategies and associated experts who are providing or have successfully provided community- and/or patient-centric IOM/NAS-defined domain standards to our target populations. A multistakeholder expert roundtable working group was convened for framework development. A premeeting survey informed agenda development, documented expert practices for target populations, and identified priority areas for meeting focus. RESULTS: The environmental scan identified 84 unique experts across 8 stakeholder groups and 44 patient organizations; 50 were invited to the roundtable and 33 participated. They broadly represented disease sites, geography, and experience with target populations and all CCC domains. The premeeting survey (16 responses) identified coordination of care or patient navigation (66.7%), community engagement (60.0%), and healthcare system changes (53.3%) as priority focus areas. The experts identified access and treatment barriers or gaps within and between CCC domains, specified key notable practices to address these, and developed an actionable framework and recommendations for each priority focus area. CONCLUSION: The framework and recommendations are intended to guide researchers, healthcare leaders, advocates, community- and patient-focused service organizations, and policy leaders to address and promote health equity in cancer care access and treatment outcomes.

Doctor-patient communication about cancer-related internet information.

This article explores the effect of doctor-patient communication about cancer-related Internet information on self-reported outcomes. Two hundred and thirty cancer patients and caregivers completed an online survey regarding their experiences searching for and discussing with their doctors cancer-related Internet information. Participants who assertively introduced the Internet information in a consultation were more likely to have their doctor agree with the information. When doctors showed interest and involvement and took the information seriously, participants were less likely to report a desire to change the doctor's response. Taking the information seriously was also associated with greater satisfaction. This preliminary evidence that the doctor's response is associated with patient outcomes indicates the potential for improving patient-centered communication. In an effort to maximize patient-centered communication, doctors should be encouraged to take their patients and the information they present seriously, as well as show their patients that they are interested and involved.

Cancer patients' decisions about discussing Internet information with their doctors.

OBJECTIVE: To explore cancer patients' and caregivers' decisions regarding whether to discuss cancer-related information they found on the Internet with their doctors. METHODS: 238 participants (cancer patients and caregivers) from three online cancer communities responded to a survey about their experiences finding information on the Internet about their cancer and their reasons for discussing or not discussing that information with their doctors. The reasons were coded into mutually exclusive categories. RESULTS: Participants most frequently reported discussing information in order to be proactive in improving their health. Other reasons included appealing to the doctor as expert, wanting to become more educated, meeting a psychological or coping need, and checking up on or testing the doctor. Of the participants, caregivers were more likely than patients to cite checking up on or testing the doctor as a reason for discussing Internet information. Sixty-two percent of participants reported sometimes or never talking about Internet information that they thought was important with their doctors. Across all participants, the most frequently reported reasons for not talking about Internet information were attributions about the information and systems-related reasons. Participants who reported information attribution as a reason for not discussing it with their doctors had higher overall comfort levels with these types of discussions. CONCLUSIONS: Many factors influence cancer patients' and caregivers' decisions about discussing Internet information with their doctors. The coherence of the reasons across the communities in this study and in other studies suggests that this typology of reasons is both thorough and valid.

Communicating the Financial Burden of Treatment With Patients.

In recent years, high health care costs and the financial burden of cancer care have received increased attention. In response to the financial burden of cancer care, patients may jeopardize their health outcomes by not properly adhering to prescribed therapies or even forgoing and delaying care in an effort to defray costs. In addition, the financial burden experienced by patients with cancer may negatively impact clinical outcomes, such as quality of life, physical and psychological symptoms, and potentially, even survival. Notably, in the current era of targeted treatment and immunotherapies for patients with cancer, the rising costs of cancer continue to remain at the forefront of patient concerns. Therefore, a critical need exists to determine how best to assist patients with the cost burden of cancer diagnosis and treatment.

Does patient activation level affect the cancer patient journey?

OBJECTIVES: We assess how patient activation is associated with behaviors and experiences of people with cancer, including: understanding risks; making treatment decisions; communicating with providers; coping with symptoms; and adhering to regimens. METHODS: The study utilizes survey data from six surveys each including 500 cancer survivors. Multivariate analyses are presented. RESULTS: Higher activated patients are more than 9 times more likely to feel their treatment plans reflect their values, 4.5 times more likely to cope with side effects, and almost 3.3 times more likely to initiate a healthier diet after their diagnosis, than are less activated patients. Less activated patients are less likely understand their diagnosis, to follow treatment regimens, and to be satisfied with their care. CONCLUSIONS: The findings show that all along the care continuum, patient activation is associated with differences in experiences. PRACTICE IMPLICATIONS: The findings point to the value of assessing patients' activation levels at the beginning of their cancer experience.

Clinical Pathways: Recommendations for Putting Patients at the Center of Value-Based Care.

Two major trends that have been affecting the provision of oncology care in the United States are a shift from volume-based to value-based care and a push toward patient-centered healthcare. However, these two trends are not always completely aligned with each other. Value-based payment models, including clinical pathways, are one strategy being implemented by oncology stakeholders to help encourage the uptake of value-based oncology care. If structured with the patient in mind, they can improve quality of care for patients with cancer, decrease inappropriate care while enabling appropriate personalization of care, and constrain rising prices by demanding a stronger link between cost and value. If not structured appropriately, they can limit patient choice, impede access to innovative treatments, and encourage one-size-fits-all oncology care. Clin Cancer Res; 23(16); 4545-9. ©2017 AACR.