Elisa S. Weiss

Purpose Spousal caregivers can be critical to cancer care. They need support in building communication skills central to their role. We previously developed a Caregiver Clinical Communication Process Model (C³PM) outlining communication strategies spousal cancer caregivers use before, during, after, and in between medical visits to attain caregiving goals. We sought evidence to support the C³PM and better understand spousal caregivers’ potential communication skill development needs. Methods We developed a 12-item scale capturing C³PM communication strategies and surveyed spousal caregivers of a person living with a blood cancer. Caregivers reported which strategies they use and perceived importance of and difficulty enacting each strategy. Responses were compared to validated measures. Mean differences between caregivers who enacted strategies versus those who did not were analyzed using independent-samples t-tests. Results Participants (n = 143) confirmed using each strategy identified in the model, and rated strategies as having moderate-to-high importance. They identified discussing questions with their spouse before appointments as one of the most difficult strategies. Communicating with insurance carriers or healthcare billing personnel to address financial coverage of care was reported as most challenging. Conclusion This evidence supports the utility of the model and importance of these caregiver strategies in navigating clinical communication. The model highlights the importance of understanding caregivers’ clinical communication as a multi-phase process and can be used to teach caregivers key communication skills they can enact before, during, after, and in between medical encounters to increase their cancer caregiving ability.

Background: Recruitment to cancer clinical trials (CCTs) is low, particularly for underrepresented groups such as uninsured patients, those with low-income status, and racial and ethnic minoritized individuals. A significant barrier is that treating oncologists often fail to inform patients about the possibility of CCT participation as an option for quality cancer care. Therefore, patient inquiries about trials before starting treatment should be normalized and encouraged, particularly for underrepresented groups. Primary care providers (PCPs) are uniquely suited to do this because they interact with patients at the time of cancer diagnosis, provide ongoing care, and are trusted sources of information. Objective: This study was designed to pilot an innovative web-based CCT training intervention for PCPs, including practicing clinicians and trainees, to increase their ability to prepare patients for cancer treatment decisions and conversations with oncologists about clinical trials. Methods: We conducted an evaluation of a pilot study using a self-guided, 1-hour web-based training intervention for PCPs with survey assessments before the intervention, immediately after the intervention, and at the 3-month follow-up. We used a mixed methods approach, incorporating quantitative and qualitative data collection and analysis. The evaluation was guided by the Kirkpatrick evaluation model, focusing on levels 1 (reaction), 2 (learning), and 3 (behavior). Results: A total of 29 PCPs completed the intervention and pre- and postintervention measures, with 28 (97%) PCPs completing the 3-month follow-up assessment. Of these 28 PCPs, 8 (29%) participated in a qualitative interview after the 3-month follow-up assessment. Participants reported high levels of satisfaction with the course. CCT knowledge, as well as attitudes and beliefs, improved after the course and were sustained at the 3-month follow-up. PCPs reported willingness to communicate with patients about cancer treatment options, including CCTs, and willingness to talk with their colleagues about potential changes in referral practices. However, fewer PCPs had actually engaged in these conversations by the 3-month follow-up. In the interviews, PCPs cited limited interprofessional knowledge sharing and organizational constraints as barriers. Notably, PCPs reported changes in their communication behavior with patients: a higher proportion reported communicating with patients at the time of referral about cancer treatment options and clinical trials at the 3-month follow-up than at baseline. In the interviews, PCPs reported that they felt more comfortable and empowered to have these conversations. Conclusions: This pilot study found that a self-guided, 1-hour web-based training intervention for PCPs resulted in improved knowledge, attitudes, and beliefs, as well as improved communication with patients, to prepare them for discussions with oncologists about cancer treatment and CCTs. Future dissemination of this course has the potential to make an impact on CCT accrual.

Objectives: To estimate the proportion and correlates of self-reported financial difficulty among patients with multiple myeloma (MM) or chronic lymphocytic leukaemia (CLL). Setting: Sixty-six US community and minority oncology practices affiliated with the National Cancer Institute Community Oncology Research Programme (NCORP). Participants: A total of 521 patients (=18 years) with MM or CLL consented and 416 responded to a survey (completion rate=79.8%). Respondents had a MM diagnosis (74.0%), an associate degree or higher (53.4%), were White (89.2%), insured (100%) and treated with clinician-administered drugs (68.0%). Study design: Observational, theoretical model and protocol-based patient survey administered between May 2019 and June 2020. Primary and secondary outcome measures: Financial difficulty was assessed using a single-item measure, the EORTC QLQC30: Has your physical condition or medical treatment caused you financial difficulties in the past year? and using an any-or-none composite measure of 22 items assessing financial difficulty, worries and the use of cost-coping strategies. Multivariable logistic regression models assessed the association of financial difficulty with diagnosis, socioeconomic and treatment characteristics. Results: About 16.8% reported experiencing financial difficulty using the single-item measure and 60.3% using the composite measure. Most frequently endorsed items in the composite measure were financial worry about having to pay large medical bills related to cancer and difficulty paying medical bills. Financial difficulty using the single-item measure was associated with having MM vs CLL (adjusted OR (aOR), 0.34; 95% CI, 0.13 to 0.84; p=0.02), having insurance other than Medicare (aOR, 2.53; 95% CI, 1.37 to 4.66; p=0.003), being non-White (aOR, 2.21; 95% CI, 1.04 to 4.72; p=0.04) and having a high school education or below (aOR, 0.36; 95% CI, 0.21 to 0.64; p=0.001). Financial difficulty using the composite measure was associated with having a high school education or below (aOR, 0.62; 95% CI, 0.41 to 0.94; p=0.03). Conclusions: US patients with MM and CLL report financial difficulty, especially those with low socio-economic status. Interventions are needed to mitigate patients financial difficulty. Trial registration number: NCT03870633 .

Background: Parents supporting AYAs with blood cancer juggle dual, competing roles as cancer caregiver and parent, which may heighten distress as they feel pulled simultaneously in two opposing directions. Likewise, AYAs encounter paradoxical needs as they revert to being more dependent on their parents to prioritize their survival while their developmental trajectory toward independence is disrupted. Parents need help understanding the underlying tensions they face in caregiving to reduce their distress and promote their connectedness with their AYA. Using a dialectical lens, we identified tensions parents encountered while caregiving in three contexts (clinical, family, and online communication) to inform a targeted psychosocial intervention. Methods: In partnership with The Leukemia & Lymphoma Society, we recruited 20 parents for in-depth interviews. Parents cared for adolescents aged 15–18 (n = 10) or emerging adults aged 19–29 (n = 10) diagnosed >3 months prior and in active treatment or within 2 years since treatment ended. Transcripts were thematically analyzed. Results: Parents described four ongoing tensions they needed to negotiate as they cared for their AYA: (1) being the driver versus passenger in their child’s care; (2) coping with cancer together as a family versus separately; (3) deciding to reveal versus conceal information; and (4) expecting normative developmental and disease trajectories versus disrupted trajectories. These tensions characterize the complex caregiving “dance” parents navigate in all three care contexts. Conclusions: Psychosocial education can normalize these tensions for parents to promote healthier coping and reduce distress while enhancing connectedness with their AYA. As caregiver–patient outcomes are interrelated, it may improve AYAs’ well-being.

BACKGROUND Recruitment to cancer clinical trials (CCTs) is low, particularly for underrepresented groups such as uninsured patients, those with low-income status, and racial and ethnic minoritized individuals. A significant barrier is that treating oncologists often fail to inform patients about the possibility of CCT participation as an option for quality cancer care. Therefore, patient inquiries about trials before starting treatment should be normalized and encouraged, particularly for underrepresented groups. Primary care providers (PCPs) are uniquely suited to do this because they interact with patients at the time of cancer diagnosis, provide ongoing care, and are trusted sources of information. OBJECTIVE This study was designed to pilot an innovative web-based CCT training intervention for PCPs, including practicing clinicians and trainees, to increase their ability to prepare patients for cancer treatment decisions and conversations with oncologists about clinical trials. METHODS We conducted an evaluation of a pilot study using a self-guided, 1-hour web-based training intervention for PCPs with survey assessments before the intervention, immediately after the intervention, and at the 3-month follow-up. We used a mixed methods approach, incorporating quantitative and qualitative data collection and analysis. The evaluation was guided by the Kirkpatrick evaluation model, focusing on levels 1 (reaction), 2 (learning), and 3 (behavior). RESULTS A total of 29 PCPs completed the intervention and pre- and postintervention measures, with 28 (97%) PCPs completing the 3-month follow-up assessment. Of these 28 PCPs, 8 (29%) participated in a qualitative interview after the 3-month follow-up assessment. Participants reported high levels of satisfaction with the course. CCT knowledge, as well as attitudes and beliefs, improved after the course and were sustained at the 3-month follow-up. PCPs reported willingness to communicate with patients about cancer treatment options, including CCTs, and willingness to talk with their colleagues about potential changes in referral practices. However, fewer PCPs had actually engaged in these conversations by the 3-month follow-up. In the interviews, PCPs cited limited interprofessional knowledge sharing and organizational constraints as barriers. Notably, PCPs reported changes in their communication behavior with patients: a higher proportion reported communicating with patients at the time of referral about cancer treatment options and clinical trials at the 3-month follow-up than at baseline. In the interviews, PCPs reported that they felt more comfortable and empowered to have these conversations. CONCLUSIONS This pilot study found that a self-guided, 1-hour web-based training intervention for PCPs resulted in improved knowledge, attitudes, and beliefs, as well as improved communication with patients, to prepare them for discussions with oncologists about cancer treatment and CCTs. Future dissemination of this course has the potential to make an impact on CCT accrual.

Background: The presence of a family caregiver during medical visits is common and can be important to ensure quality cancer care. Yet, little is known about caregivers' perspectives and experiences navigating triadic medical visits, including communication between caregivers, patients (or individuals with cancer), and clinicians. Using a multiple-goals theoretical framework, we sought to capture communication strategies that spousal caregivers use during triadic medical visits. Methods: We conducted semistructured interviews with 15 spouses providing care for a patient living with blood cancer. Caregivers were recruited using Leukemia & Lymphoma Society's constituent database. Data were thematically analyzed using a constant comparative method approach. Results: Findings demonstrated that caregivers use communication strategies not just during the triadic medical visit but before, during, after, and ongoing throughout visits. We identified eight communication strategies associated with caregivers' goals. Caregivers discuss questions together, keep lists, search for online information, exchange information, ask questions, take notes, debrief together, and advocate for care. Conclusion: Caregivers' lived accounts demonstrate how their communication approaches are motivated by care-related goals. Themes draw attention to key strategies that can inform communication skills interventions for clinicians, patients, and their spouses across identified phases.

Purpose Survivorship care often refers to continued healthcare after cancer treatment. Jacobsen and colleagues advocated to expand this to include patients on extended treatments and maintenance/prophylactic therapies, recognizing the care continuum as more complex. Transitions of care for individuals diagnosed with a blood cancer can be complicated. We sought to better understand blood cancer caregivers’ experiences as their diagnosed family member encountered “survivorship transitions” across the continuum. Methods We conducted semi-structured interviews with adults caring for a parent or a child with a blood cancer. Caregivers were segmented into survivorship groups based on two transitional contexts: (1) when patients transitioned to a new line of therapy (active treatment or maintenance therapy); (2) when patients ended treatment. We conducted a thematic analysis and triangulated findings to compare transitional experiences. Results Caregivers in both groups reported experiencing a “new normal,” which included personal, relational, and environmental adjustments. Caregivers in the treatment transitions group (n = 23) also described uncertainty challenges (e.g., losing their “safety net”) and disrupted expectations (e.g., feeling “caught off guard” by challenges). Whereas caregivers in the end-of-treatment transitions group (n = 15) described relief coupled with worry (e.g., feeling hopeful yet worried). Conclusions Survivorship transitions for caregivers are riddled with challenges that include difficult readjustments, uncertainty/worry, and unmet expectations. While there seems to be a cohesive experience of “survivorship transitions,” each transition group revealed nuanced distinctions. Implications for Cancer Survivors Tailored supportive resources are needed for caregivers throughout survivorship transitions.

Adult-child caregivers of an aging parent living with a blood cancer describe struggling to communicate with one another and within the family system. They may avoid critical care conversations, which may impede care and their ability to receive social support. We examined what approaches adult-child caregivers of a parent diagnosed with a blood cancer use to enhance their family communication, the topics they find most challenging to discuss, and the roles of openness and support. We used qualitative and quantitative approaches to analyze data from a larger online survey study. In partnership with the Leukemia & Lymphoma Society, we recruited 121 adult-child caregivers. Responses to one open-ended item were analyzed to capture strategies used to enhance communication with their parent and family. They reported utilizing digital communication modalities, prioritizing frequent communication, engaging in openness, establishing boundaries, kinkeeping, and enacting support. Within the quantitative data, we further explored two of these themes (openness and support) and their relationships to other variables using t-tests and regression analysis. Adult-child caregivers and diagnosed parents avoid talking about mortality and negative feelings. Openness in the family about cancer was linked to caregivers’ perceptions of receiving social support. Findings demonstrate that cultivating openness between midlife adult children and diagnosed parents may enhance opportunities to receive support.

Chronic lymphocytic leukemia (CLL) caregivers play a central role in disease management—a role that has been heightened during the COVID-19 pandemic given the healthcare system’s reliance on frontline family caregivers and CLL patients’ increased risk of infection and mortality. Using a mixed-method design, we investigated the impact of the pandemic on CLL caregivers (Aim 1) and their perceived resource needs (Aim 2): 575 CLL caregivers responded to an online survey; 12 spousal CLL caregivers were interviewed. Two open-ended survey items were thematically analyzed and compared with interview findings. Aim 1 results showed that two years into the pandemic, CLL caregivers continue to struggle with coping with distress, living in isolation, and losing in-person care opportunities. Caregivers described experiencing increasing caregiving burden, realizing the vaccine may not work or didn’t work for their loved one with CLL, feeling cautiously hopeful about EVUSHELD, and dealing with unsupportive/skeptical individuals. Aim 2 results indicate that CLL caregivers needed reliable, ongoing information about COVID-19 risk, information about and access to vaccination, safety/precautionary measures, and monoclonal infusions. Findings illustrate ongoing challenges facing CLL caregivers and provide an agenda to better support the caregivers of this vulnerable population during the COVID-19 pandemic.