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We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision-making. 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. χ and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. 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). 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. 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.

Introduction Cancer impinges on nearly every aspect of the lives of patients, survivors, and loved ones. This study presents progress in developing the “What Matters to Me” Worksheet (WMTM‐Worksheet), designed to elicit personal priorities across multiple life domains. WMTM‐Worksheet items were finalized based on clinician recommendations and patient feedback. Individuals at any point in cancer treatment were interviewed post‐appointment about using the WMTM‐Worksheet prior to their appointment. Methods To finalize the WMTM Worksheet, initial samples of clinicians and patients were interviewed on its content and usability. Oncology clinicians were recruited by email; 25 accepted and were surveyed about current practices of incorporating patient priorities and preferences into treatment planning, and the usability, practicality, and feasibility of the 17‐item WMTM Worksheet. Patients were English‐ or Spanish‐speaking adults diagnosed with gynecological, head and neck, or urological cancers. Patients at any point in active treatment or follow‐up were eligible. An initial sample of 15 patients was administered a cognitive interview about the WMTM Worksheet by telephone to assess its clarity, relevance, and feasibility. Next, 61 patients taking part in the user experience portion of this study were identified through the electronic medical record (EMR), contacted by telephone, and offered participation in a onetime interview regarding the WMTM Worksheet. They received the WMTM Worksheet prior to a clinic appointment. Questions regarding user experience were administered by telephone 1–3 days later. Results Of the 61 patient respondents, 57% were over age 65, 59% female, 41% Hispanic, 45% Black; 49% had an annual income below $35,000. Patient responses yielded seven principal components, reflecting domains such as symptoms, family caregiving, work, and hobbies. Most patients (62%) said the WMTM‐Worksheet helped them think about disease and treatment; 30% said it helped communication with clinicians. Eighty‐five percent were glad to share their concerns, and only 10% found it difficult to complete. Conclusion The WMTM‐Worksheet can bring patients' broader priorities into care planning. Patients may be better able to anticipate and avoid problems. Discussion of priorities validates patients' concerns and promotes trust. Implementation will require the clinical infrastructure to support shared decision‐making and incorporate the WMTM‐Worksheet into workflow. Oncologists may benefit from communications training to determine patients' concerns and present options that best address their priorities. This study evaluated the “What Matters to Me” Worksheet, a tool designed to elicit personal priorities across multiple life domains. Patients undergoing cancer treatment reported the WMTM Worksheet helped them communicate with their clinician and think about their disease and treatment.

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. Using data from a nationally representative online panel survey of family caregivers of patients with cancer, we found that nearly half of caregivers involved in their care recipients’ cancer‐related decisions reported bias in the healthcare team decision support they and the patient received. Furthermore, experiencing this bias was associated with high caregiver psychological distress.

PurposeThe 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.MethodsSurvey 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.ResultsPatient 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.ConclusionsPatient 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 SurvivorsFindings 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.

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. 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). 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). 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.

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.