Identifying and addressing the needs of caregivers of patients with cancer: evidence on interventions and the role of patient advocacy groups.

As the number of people with cancer increases, so does the number of informal caregivers. These caregivers frequently have multiple unmet needs and experience numerous burdens. Here we explore the crucial roles of these caregivers and categorize their unmet needs into four areas: information, relationship and communication, emotional support, and practical or financial needs. We provide evidence on emerging interventions aimed at supporting caregivers, including patient/caregiver assessments, education, collaborative care, financial assistance, wellness, informational programs, and an integrated caregiver clinic. Finally, we delve into the vital role that patient advocacy groups play in addressing the unmet needs of cancer patients and their caregivers by providing comprehensive support, including education, resources, counseling, guidance, and financial aid.

As the number of people living with cancer increases, the number of informal caregivers is also increasing. Most often, these caregivers are family members, friends, or spouses of the person with cancer. Caregivers of patients with cancer help with medical tasks and routine chores, like driving, and even personal care, such as bathing. Caregiving can be challenging, emotionally taxing, and time-consuming, all while being unpaid. In this review, we identify four unmet needs of caregivers of patients with cancer and examine how they are being addressed. First, caregivers need cancer care information that is presented in an understandable way. This will help the caregiver and the patient make better decisions about cancer care and treatment. Second, caregivers need better relationships and communication with the patient's clinicians. In addition, caregivers must also navigate, and sometimes mend, challenging relationships with the patients that they care for. Third, caregivers need more emotional support, including the option for counseling and therapy. Fourth, caregivers may need practical and financial support, particularly since the time demands and stress of caregiving can disrupt their ability to earn a living. Although many attempts have been made to address these caregiver needs, gaps still remain. Increasing awareness of information targeting caregivers and patients could reduce their uncertainty and help with decision-making. Even when resources are available, caregivers may not always be aware of or linked to them. Patient advocacy groups play a critical role in connecting caregivers with available resources. They also provide a variety of support services, including education, navigation, and financial assistance.

Evaluation of a Conference on Cancer-Related Financial and Legal Issues: A Potential Resource to Counter Financial Toxicity.

This study describes the conception, development, and growth of the Triage Cancer Conference hosted by Triage Cancer, a national nonprofit organization providing free legal and financial education to the cancer community. We conducted a retrospective analysis of post-conference participant surveys. Descriptive statistics were calculated for participant demographics, and acceptability, feasibility, and appropriateness were evaluated. From 2016-2021, 1239 participants attended the conference and completed post-conference surveys. Participants included social workers (33%), nurses (30%), and cancer patients/survivors (21%), with representation from over 48 states. Among those who reported race, 16% were Black, and 7% were Hispanic. For acceptability, more than 90% of participants felt that the conference content, instructors, and format were suitable and useful. For feasibility, more than 90% of participants felt that the material was useful, with 93-96% reporting that they were likely to share the information and 98% reporting that they would attend another triage cancer event. Appropriateness was also high, with >80-90% reporting that the sessions met the pre-defined objectives. Triage Cancer fills an important gap in mitigating financial toxicity, and formal evaluation of these programs allows us to build evidence of the role and impact of these existing resources. Future research should focus on adding validated patient-reported outcomes, longer-term follow-up, and ensuring inclusion and evaluation of outcome metrics among vulnerable populations.

Cancer diagnosis and treatment in working-age adults: Implications for employment, health insurance coverage, and financial hardship in the United States.

The rising costs of cancer care and subsequent medical financial hardship for cancer survivors and families are well documented in the United States. Less attention has been paid to employment disruptions and loss of household income after a cancer diagnosis and during treatment, potentially resulting in lasting financial hardship, particularly for working-age adults not yet age-eligible for Medicare coverage and their families. In this article, the authors use a composite patient case to illustrate the adverse consequences of cancer diagnosis and treatment for employment, health insurance coverage, household income, and other aspects of financial hardship. They summarize existing research and provide nationally representative estimates of multiple aspects of financial hardship and health insurance coverage, benefit design, and employee benefits, such as paid sick leave, among working-age adults with a history of cancer and compare them with estimates among working-age adults without a history of cancer from the most recently available years of the National Health Interview Survey (2019-2021). Then, the authors identify opportunities for addressing employment and health insurance coverage challenges at multiple levels, including federal, state, and local policies; employers; cancer care delivery organizations; and nonprofit organizations. These efforts, when informed by research to identify best practices, can potentially help mitigate the financial hardship associated with cancer.