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Purpose: Previous research describing how informal cancer caregiving impacts employment has been conducted in small samples or a single disease site. This paper provides population-based estimates of the effect of informal cancer caregiving on employment and characterizes employment changes made by caregivers., Methods: The samples included cancer survivors with a friend or family caregiver, participating in either the Medical Expenditure Panel Survey Experiences with Cancer Survivorship Survey (ECSS) (n = 458) or the LIVESTRONG 2012 Survey for People Affected by Cancer (SPAC) (n = 4706). Descriptive statistics characterized the sample of survivors and their caregivers' employment changes. Multivariable logistic regression identified predictors of caregivers' extended employment changes, comprising time off and changes to hours, duties, or employment status., Results: Among survivors with an informal caregiver, 25 % from the ECSS and 29 % from the SPAC reported that their caregivers made extended employment changes. Approximately 8 % of survivors had caregivers who took time off from work lasting ≥2 months. Caregivers who made extended employment changes were more likely to care for survivors: treated with chemotherapy or transplant; closer to diagnosis or end of treatment; who experienced functional limitations; and made work changes due to cancer themselves compared to caregivers who did not make extended employment changes., Conclusions: Many informal cancer caregivers make employment changes to provide care during survivors' treatment and recovery., Implications for Cancer Survivors: This study describes cancer caregiving in a prevalent sample of cancer survivors, thereby reflecting the experiences of individuals with many different cancer types and places in the cancer treatment trajectory.

Purpose: Poor health of one spouse can adversely influence the partner's health outcomes ("spillover"). This study aimed to estimate quality of life spillover among spouses and to determine how presence of cancer influenced these effects., Methods: We examined data on husband-wife dyads with cancer-related health problems, medical events, or disabilities (n = 910) and matched comparison dyads from the 2004-2012 Medical Expenditures Panel Survey, a population-based survey of the USA. Mental and physical health-related quality of life and depressed mood were reported at two time points (T1 and T2, 11 months apart on average). Dyadic multilevel models evaluated the cross-lagged impact of HRQoL and depressed mood at T1 on spouses' HRQoL at T2, controlling for sociodemographics and health conditions., Results: Small but statistically significant spillover was observed for mental and physical HRQoL among couples with cancer. Spillover occurred from both the spouse to the survivor and from survivor to spouse. Depressed mood, in particular, showed stronger spillover effects from the spouse to the survivor than the inverse. Similar effects were not observed in dyads without cancer., Conclusions: Screening for and treating poor HRQoL and depressed mood concurrently in both cancer survivors, and their spouses may positively influence HRQoL outcomes. Future research is needed to further elucidate these findings and determine whether a concurrent approach to psychosocial care in survivors and their spouses may improve long-term outcomes.

Background: To the authors' knowledge, little work has been done to estimate the time costs associated with informal caregiving for cancer survivors., Methods: Data from a national survey of caregivers of cancer patients in 2003 to 2006 were used to estimate the time associated with informal caregiving in the 2 years after patient diagnosis with bladder, breast, colorectal, kidney, lung, melanoma of the skin, ovarian, prostate, or uterine cancer, or non-Hodgkins lymphoma (NHL). Caregivers reported the duration and daily intensity of caregiving as well as the types and frequency of support provided. The median wage rate in 2006 ($16.28) was used to value caregiver time, and other methods to value time were evaluated with sensitivity analyses., Results: On average, caregivers provided care for 8.3 hours per day for 13.7 months. The number of months and daily hours spent caregiving were the highest for cancer survivors diagnosed with distant disease compared with survivors with regional or localized disease (P<.05). Approximately half of caregivers provided emotional, instrumental, tangible, or medical support, although the frequency varied dramatically. Informal caregiver time costs over the 2-year period after diagnosis were the highest for caregivers of patients diagnosed with lung ($72,702; 95% confidence interval [95% CI], $56,814-$88,590) and ovarian ($66,210; 95% CI, $40,750-$91,670) cancers and NHL ($59,613; 95% CI, $43,423-$75,803) and the lowest for caregivers of patients with breast cancer ($38,334; 95% CI, $31,442-$45,226)., Conclusions: Time spent by informal caregivers was substantial and was an important component of the burden of cancer care. Incorporation of the value of informal caregiver time will be important when evaluating the costs and benefits of cancer control interventions., (Copyright (c) 2009 American Cancer Society.)

Significant demands are being placed on the informal caregivers of chronically ill patients, including those suffering from cancer. Health care professionals need to be aware of these demands, and they need effective tools to assess the impact these demands place on the caregivers. Over the past 25 years, researchers have developed self-report instruments to assess informal caregivers. These instruments assess various aspects of the caregiving experience, including caregiver burden, needs, and quality of life. The purpose of this review was to identify and critically evaluate these instruments. MEDLINE and PUBMED were searched from 1966 to 2002. After an extensive literature search and review, and utilizing specific inclusion criteria, 28 instruments were identified and evaluated in terms of their development, content, and psychometric properties. In addition, a history of the construct and measurement development in the areas of caregiver burden, needs, and quality of life are discussed. Although some further development and refinement of instruments could benefit the field, depending on the questions researchers or clinicians seek to pursue, there are many proven tools available for their use. Future research needs to use these instruments to assess the effectiveness of interventions aimed at improving the care of the caregivers.

Objective: A key aspect of the role of clinicians caring for patients in the setting of advanced illness focuses on attending to the needs of informal caregivers during the end-of-life period. The purpose of this study was twofold: (1) to complement and enrich existing quantitative findings regarding caregiver burden near the end of life, and (2) to identify potential solutions to caregivers' unmet needs in an effort to assist clinicians in the development of clinical interventions., Methods: This qualitative study, using focus groups and content analysis of transcripts, was conducted in a comprehensive cancer center in Washington, DC. Seven focus groups were held: three with recently bereaved caregivers and four with active caregivers of patients with metastatic cancer and an expected survival of 6 to 12 months., Results: Data were stratified into two broad categories: (1) general problems and (2) behaviors/activities that were helpful/would have been helpful in alleviating these problems. Within each of these two categories, five subcategories emerged: medical care (including provision of information, coordination of care, bedside manner, satisfaction with care), quality of life (including well-being, role adjustments), help from others (including practical assistance, social support), positives of caregiving, and unsolicited themes (including job flexibility, impact of the disease on the family, informational needs, relationship with patient)., Significance of Results: Results suggest caregivers may benefit from more information about patient prognosis and hospice, attention to quality-of-life issues, and enhanced, direct communication with clinicians. Although information of this nature is likely to be known to palliative care clinicians, the specific details and verbal insights provided by caregivers give an important voice to existing quantitative data and may provide more detailed information to assist palliative care clinicians seeking to develop interventions to meet caregiver needs during the period near the end of life.

Background: Cancer patients and survivors have high care needs, often provided by a spouse or partner. The purpose of this study was to elucidate how employment and work loss patterns differed across cancer history/treatment status and gender. Methods: Using nationally representative data from the Medical Expenditure Panel Survey (2011, 2016, and 2017), the authors linked data across married participants and categorized them by spouses' cancer treatment status (no cancer history, on treatment for cancer, off treatment for cancer). Multivariable logistic and zero‐inflated negative binomial regressions were used to assess the associations among cancer history/treatment status, gender, and employment outcomes (employment status and workdays lost to care for self or others). Results: For men, employment did not differ significantly by cancer history/treatment status (on treatment: odds ratio [OR], 0.58; 95% confidence interval [CI], 0.33–1.02, off treatment: OR, 0.84; 95% CI, 0.62–1.14 vs. no cancer history). For women, employment was not significantly different when the spouse was on treatment for cancer compared to no cancer history (OR, 0.78; 95% CI, 0.33–1.86]) but was significantly increased for women whose spouse was off treatment (OR, 1.39; 95% CI, 1.05–1.84). Among employed participants, women whose spouse was on cancer treatment were nine times more likely to take days off work to provide care (OR, 9.52; 95% CI, 3.94–23.03) and took more than three times as many days off to care for others (OR, 3.21; 95% CI, 2.07–4.97) as men whose spouse had no cancer history. Conclusions: Wives of cancer survivors are at increased risk of work loss, with implications for their financial and psychological well‐being. Employers, policymakers, and clinicians have opportunities to support working caregivers. Employment and productivity loss patterns differed by cancer treatment status for men and women. Wives of cancer survivors are at increased risk of work loss with implications for employers, policymakers, and health care professionals. [ABSTRACT FROM AUTHOR]

Health-care–related transportation insecurity is common in the United States. Patients with cancer are especially vulnerable because cancer care is episodic in nature, occurs over a prolonged period, is marked by frequent clinical encounters, requires intense treatments, and results in substantial financial hardship. As a result of transportation insecurity, patients with cancer may forego, miss, delay, alter, and/or prematurely terminate necessary care. Limited data suggest that these alterations in care have the potential to increase the rates of cancer recurrence and mortality and exacerbate disparities in cancer incidence, severity, and outcomes. Transportation insecurity also negatively impacts at the informal caregiver, provider, health system, and societal levels. Recognizing that transportation is a critical determinant of outcomes for patients with cancer, there are ongoing efforts to develop evidence-based protocols to identify at-risk patients and address transportation insecurity at federal policy, health system, not-for-profit, and industry levels. In 2021, the National Cancer Policy Forum of the National Academies of Science, Engineering, and Medicine sponsored a series of webinars addressing key social determinants of health including food, housing, and transportation among patients with cancer. This commentary summarizes the formal presentations and discussions related to transportation insecurity and will 1) discuss the heterogeneous nature of transportation insecurity among patients with cancer; 2) characterize its prevalence along the cancer continuum; 3) examine its multilevel consequences; 4) discuss measurement and screening tools; 5) highlight ongoing efforts to address transportation insecurity; 6) suggest policy levers; and 7) outline a research agenda to address critical knowledge gaps. [ABSTRACT FROM AUTHOR]

Because the mental and physical health of caregivers can be interdependent with that of the patient, patients may experience worse health outcomes when a caregiver is distressed ([17]). The mean caregiver age was 53 years, and their patients were, on average, aged 63.8 years; both caregivers and patients were aged younger than 65 years, when they would become age eligible for Medicare benefits. Additional supports include integration of caregivers in treatment plans via a separate electronic health record to screen, document, and address caregiver physical and mental health needs. If only 63% of cancer survivors discuss their employment situation with the oncology care team ([26]), it is likely that even fewer caregivers discuss their employment situations with the oncology care team, leaving the caregiver and care team unaware of available supports. [Extracted from the article]

Purpose: Financial toxicity related to cancer diagnosis and treatment is a common issue in developed countries. We seek to systematically summarize the extent of the issue in very high development index countries with publicly funded healthcare. Methods: We identified articles published Jan 1, 2005, to March 7, 2019, describing financial burden/toxicity experienced by cancer patients and/or informal caregivers using OVID Medline Embase and PsychInfo, CINAHL, Business Source Complete, and EconLit databases. Only English language peer-reviewed full papers describing studies conducted in very high development index countries with predominantly publicly funded healthcare were eligible (excluded the USA). All stages of the review were evaluated in teams of two researchers excepting the final data extraction (CJL only). Results: The searches identified 7117 unique articles, 32 of which were eligible. Studies were undertaken in Canada, Australia, Ireland, UK, Germany, Denmark, Malaysia, Finland, France, South Korea, and the Netherlands. Eighteen studies reported patient/caregiver out-of-pocket costs (range US$17–US$506/month), 18 studies reported patient/caregiver lost income (range 17.6–67.3%), 14 studies reported patient/caregiver travel and accommodation costs (range US$8–US$393/month), and 6 studies reported financial stress (range 41–48%), strain (range 7–39%), or financial burden/distress/toxicity among patients/caregivers (range 22–27%). The majority of studies focused on patients, with some including caregivers. Financial toxicity was greater in those with early disease and/or more severe cancers. Conclusions: Despite government-funded universal public healthcare, financial toxicity is an issue for cancer patients and their families. Although levels of toxicity vary between countries, the findings suggest financial protection appears to be inadequate in many countries. [ABSTRACT FROM AUTHOR]