Economic costs of family caregiving for persons with advanced stage cancer: a longitudinal cohort study.

PURPOSE: To form a multifaceted picture of family caregiver economic costs in advanced cancer. METHODS: A multi-site cohort study collected prospective longitudinal data from caregivers of patients with advanced solid tumor cancers. Caregiver survey and out-of-pocket (OOP) receipt data were collected biweekly in-person for up to 24 weeks. Economic cost measures attributed to caregiving were as follows: amount of OOP costs, debt accrual, perceived economic situation, and working for pay. Descriptive analysis illustrates economic outcomes over time. Generalized linear mixed effects models asses the association of objective burden and economic outcomes, controlling for subjective burden and other factors. Objective burden is number of activities and instrumental activities of daily living (ADL/IADL) tasks, all caregiving tasks, and amount of time spent caregiving over 24 h. RESULTS: One hundred ninety-eight caregivers, 41% identifying as Black, were followed for a mean period of 16 weeks. Median 2-week out-of-pocket costs were $111. One-third of caregivers incurred debt to care for the patient and 24% reported being in an adverse economic situation. Whereas 49.5% reported working at study visit 1, 28.6% of caregivers at the last study visit reported working. In adjusted analysis, a higher number of caregiving tasks overall and ADL/IADL tasks specifically were associated with lower out-of-pocket expenses, a lower likelihood of working, and a higher likelihood of incurring debt and reporting an adverse economic situation. CONCLUSIONS: Most caregivers of cancer patients with advanced stage disease experienced direct and indirect economic costs. IMPLICATIONS FOR CANCER SURVIVORS: Results support the need to find solutions to lessen economic costs for caregivers of persons with advanced cancer.

Cancer patient and caregiver communication about economic concerns and the effect on patient and caregiver partners' perceptions of family functioning.

PURPOSE: Financial strain and stressful life events can constrain open communication within families. A cancer diagnosis can bring heightened emotional stress and financial strain for most cancer patients and their families. We evaluated how level of comfort and willingness to discuss important but sensitive economic topics affected longitudinal assessments of family relationships, exploring both within-person and between partner effects over 2 years after a cancer diagnosis. METHODS: A case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Multi-level models were developed to examine the associations between comfort discussing economic aspects of cancer care and family functioning. RESULTS: Broadly, caregivers and patients who were comfortable discussing economic topics reported higher family cohesion and lower family conflict. Dyads' assessments of family functioning were influenced both by their own and their partners level of communication comfort. Overtime, caregiver but not patients perceived a significant decrease in family cohesion. CONCLUSIONS: Efforts to address financial toxicity in cancer care should include examination of how patients and families communicate as unaddressed difficulties can have detrimental effects on family functioning in the long term. Future studies should also examine whether the prominence of specific economic topics, such as employment status, varies depending on where the patient is in their cancer journey. IMPLICATIONS FOR CANCER SURVIVORS: In this sample, cancer patients did not perceive the decline in family cohesion that was reported by their family caregiver. This is an important finding for future work that aims to identify the timing and nature to best intervene with caregiver supports to mitigate caregiver burden that may negatively impact long-term patient care and QoL.

A Comparison of the Content and Quality of Organ Donation Discussions with African American Families Who Authorize and Refuse Donation.

BACKGROUND: This study compares the experiences of African American (AA) families who authorized organ donation with those who refused. METHODS: Large administrative datasets were obtained from 9 partnering Organ Procurement Organizations (OPO). Initial analyses used these data to assess authorization among African American families (n = 1651). Subsequent analyses were performed using a subsample of interview data of AA family decision makers (n = 276). Initial bivariate analyses tested differences in study variables by authorization status (donor/nondonor). Two separate multilevel logistic regressions examined associations between independent variables and family authorization. RESULTS: Analyses of the administrative datasets found that refusal was more likely when the patient was older, female, a DCD case, and not referred in a timely manner; refusal was less likely when families initiated donation conversations. Interview data revealed that families who refused donation were less likely to respond favorably to initial donation requests and reported less satisfaction with the overall approach, amount of time with OPO staff, and how questions were handled. Refusing families were also more likely to feel pressured, had less comprehensive donation discussions, and rated the OPO requesters' communication skills lower. No significant differences in organ donation attitudes were found between families who authorized donation and those refusing to donate. CONCLUSIONS: The study suggests that AA families making decisions about organ donation would benefit from culturally appropriate discussions. TRIAL REGISTRATION: Clinical Trial Notation: NCT02138227.

Authorization of tissues from deceased patients for genetic research.

Tissues from deceased donors provide important data for genomic research and Organ Procurement Organizations (OPOs) play a significant role. To understand the decisions of families who donated for transplantation and made decisions about donation to the Genotype-Tissue Expression Project (GTEx), we examined donation decisions of family decision makers (FDMs). 413 families were interviewed by telephone. The OPO staff who made the transplant and research requests completed self-administered surveys; a total of 309 matching surveys from 99 OPO staff were obtained. 76.8% of families donated to the GTEx project. Logistic regression analysis found that FDM consent to GTEx donation was associated with endorsement of policies to promote biobanking (OR = 1.35), positive attitudes about medical research (OR = 1.1), lack of concern regarding a breach of confidentiality (OR = 1.54), comfort with tissue donation (OR = 1.24), and prior authorization to solid organ donation (OR = 3.17). OPO staff characteristics associated with GTEx donation included being female (OR = 3.57), White (OR = 4.97), comfort with hospital staff role in donation (OR = 1.61), and number of topics discussed with families (OR = 57.9). Donor type, FDM attitudes, OPO staff sociodemographics, OPO comfort with the GTEx authorization process, and intensity of discussing research-specific issues were significantly associated with GTEx donation decisions.

The Great Recession, Life Events, and Mental Health of Older Adults.

Historical events and personal experiences have the potential to alter the way people age. Using a life-course model, we examined how the Economic Recession of 2008 and experienced life events affected the mental health of 3,393 older adults in New Jersey. Data collected between 2006 and 2012 revealed a significant increase in mean depressive symptoms. Multinomial logistic regression analyses indicated that people with incident depression were more likely to have lost a job, become a caregiver, experienced a major illness, or have a family member with a major illness than people with no depression. Compared with the incident depression group, those with remitted depression were less likely to report having lost a job or experienced a major illness. Modeling the effects of individual life events and the economic recession on depression enriches understanding about the association between macro socioeconomic events, life events, and the mental health of older adults.

Cancer patients' information needs the first nine months after diagnosis.

OBJECTIVE: Cancer patients' information needs about disease, diagnostic tests, treatments, physical care, and psychosocial resources during treatment are examined. METHODS: Information needs of newly diagnosed, Stages II-IV cancer patients receiving treatment (N=138) were studied over nine months. Information needs were assessed using The Toronto Informational Needs Questionnaire (TINQ). There are five subscales for the TINQ: disease, diagnostic tests, treatment, physical and psychosocial. Health literacy and amount of information wanted were also measured. A repeated measures, univariate two-level model for longitudinal data was analyzed. Separate models for each subscale were constructed and covariates were examined simultaneously for associations with information needs. Models were estimated using FIML. RESULTS: Although significant reduction of needs was observed over time, total information needs remained high throughout. Gender (women), age (younger), race (African American), education (lesser), and marital status (married) were significantly associated with higher information needs over time. Cancer type and stage were not significantly associated. CONCLUSION: Cancer patients' information needs decrease yet remain high over time. Patients' information needs are highest near diagnosis and change throughout the course of their treatment. PRACTICE IMPLICATIONS: As patients obtain and understand information, they will continue to need information in new areas relevant to their care.

Barriers to therapeutic clinical trials enrollment: differences between African-American and white cancer patients identified at the time of eligibility assessment.

BACKGROUND: Clinical trials (CTs) are the mechanism by which research is translated into standards of care. Low recruitment among underserved and minority populations may result in inequity in access to the latest technology and treatments, compromise the generalizability, and lead to failure in identification of important positive or negative treatment effects among under-represented populations. METHODS: Data were collected over a 39-month period on patient eligibility for available therapeutic cancer CTs. Reasons for ineligibility and refusal were collected. The data were captured using an automated software tool for tracking eligibility pre-enrollment. We examined characteristics associated with being evaluated for a trial, and reasons for ineligibility and refusal, overall and by patient race. RESULTS: African-Americans (AAs) were more likely than Whites to be ineligible (odds ratio, (OR) = 1.26, 95% confidence interval (CI) = 1.0-1.58) and if eligible, to refuse participation (OR = 1.79, 95% CI = 1.27-2.52), even after adjusting for insurance, age, gender, study phase, and cancer type. White patients were more likely to be ineligible due to study-specific or cancer characteristics. AAs were more likely to be ineligible due to mental status or perceived noncompliance. Whites were more likely to refuse due to extra burden, due to concerns with randomization and toxicity, or because they express a positive treatment preference. AAs were more likely to refuse because they were not interested in CTs, because of family pressures, or they felt overwhelmed (NS)). DISCUSSION: This study is the first to directly compare ineligibility and refusal rates and reasons captured prospectively in AA and White cancer patients. The data are consistent with earlier studies that indicated that AA patients more often are deemed ineligible and, when eligible, more often refuse participation. However, differences in reasons for ineligibility and refusal by race have implications for a cancer center to participate in CTs appropriate for the population of patients served. On a broader scale, consideration should be given to modifying eligibility criteria and other design aspects to permit broader participation of minority and other underserved groups.

Health disparities among children with cleft.

Oral health-related quality of life (OHRQoL) is a multidimensional construct that measures well-being associated with the teeth, mouth, and face. This cross-sectional study examined OHRQoL, demographic data, and clinical indicators in 839 treatment-seeking youths with cleft from 6 geographically diverse cleft treatment centers. Individuals without health insurance and representing ethnic minorities had lower OHRQoL scores on the Child Oral Health Impact Profile and a higher rate of surgical recommendations. These findings imply a risk factor for reduced OHRQoL and unmet needs among vulnerable youths with clefts.

The texture of neighborhoods and disability among older adults.

OBJECTIVES: To present and test an ecological multidimensional model of neighborhood characteristics and examine its relationship to older disability among older adults. METHOD: Indicators of social vulnerability, wealth, violence, storefronts, residential stability, and the presence of physicians, supermarkets, and fast-food establishments for 1,644 of New Jersey's census tracts were derived from sources that include the U.S. Census 2000, Uniform Crime Report for New Jersey, New Jersey Department of Agriculture, Division of Marketing and Development, New Jersey Department of Law and Public Safety Division of Alcohol Beverage Control, and Health Resources and Services Administration Geospatial Data Warehouse. Confirmatory factor analyses were used to develop and test a measurement model of neighborhood texture. Structural equation modeling examined the relationships between neighborhood characteristics and disability of persons aged 65-69 years. RESULTS: Analyses revealed that distinct dimensions of neighborhoods could be modeled with administrative data and that neighborhood contextual (supermarkets, physicians, storefronts, violence) and compositional (social vulnerability, wealth, residential stability) characteristics were related to the prevalence of disability. DISCUSSION: The use of multiple indicators of neighborhood with good psychometric qualities is critical for advancing knowledge about the mechanisms by which neighborhood characteristics are associated with the health of older people.

Education level, not health literacy, associated with information needs for patients with cancer.

OBJECTIVE: Cancer patients receiving adjuvant therapy encounter increasingly complex situations and decisions with each new procedure and therapy. To make informed decisions about care, they need to be able to access, process, and understand information. Individuals with limited health literacy may not be able to obtain or understand important information about their cancer and treatment. The rate of low health literacy has been shown to be higher among African Americans than among non-Hispanic Whites. This study examined the associations between race, health literacy, and self-reported needs for information about disease, diagnostic tests, treatments, physical care, and psychosocial resources. METHODS: Measures assessing information needs were administered to 138 newly diagnosed cancer patients. Demographics were assessed by survey and health literacy was assessed with two commonly used measures: the Rapid Estimate Adult Literacy in Medicine (REALM) and the Short Test of Health Literacy in Adults (STOFHLA). RESULTS: Study findings indicate that educational attainment, rather than health literacy, is a significant predictor of information needs. CONCLUSION: Overcoming barriers to information needs may be less dependent on literacy considerations and more dependent on issues that divide across levels of educational attainment. PRACTICE IMPLICATIONS: Oncologists and hospital staff should be attentive to the fact that many patients require additional assistance to meet their information needs.

Effects of a television drama about environmental exposure to toxic substances.

OBJECTIVE: This study assessed short-term outcomes of viewing an episode of a prime-time television drama in which a child developed cancer after environmental exposure to an illegal pesticide. The study explored the effects among viewers of feeling transported into a narrative world. METHODS: Respondents (n = 2,139) to a post-episode Internet panel survey were asked if they had seen the show and asked questions about their demographic information, their frequency of viewing the television show, the degree to which they had felt transported into a narrative world created by the drama, and their knowledge and beliefs about the health effects of environmental exposure. Conversations with key informants from federal agencies and advocacy groups were also held. RESULTS: Episode viewing and narrative transportation were positively associated with knowledge of toxic exposure effects, and transported viewers reported being more likely to report an unusually high number of cancer cases to authorities. The show also appeared to have prompted a clarification of federal pesticide-testing policy. CONCLUSIONS: Entertainment Education is a promising strategy for disseminating key points of information about environmental health.

Effects of caregiver burden and satisfaction on affect of older end-stage renal disease patients and their spouses.

We examined the extent to which a 2-factor model of affect explains how the burdens and satisfactions experienced by caregivers influence their own well-being and that of the spouses for whom they provide care. Using data from 315 older patients with end-stage renal disease and their spouses, we extended tests of Lawton et al.'s (1991) 2-factor model both longitudinally and dyadically. Multilevel modeling analyses partially support the 2-factor model. Consistent with the model, mean caregiver burden has a stronger effect on both caregiver and patient negative affect than does mean caregiver satisfaction. Contrary to the model, mean caregiver satisfaction has an effect on caregiver positive affect that is similar to that of mean caregiver burden, and it has no effect on patient positive affect. Time-varying effects of caregiver burden are consistent with the 2-factor model for caregiver but not patient negative affect. Time-varying effects of caregiver satisfaction are not consistent with the 2-factor model for either patients or caregivers. Results highlight the powerful role of caregiver burden for both caregivers and patients and suggest important new directions for conducting health-related research with late-life marital dyads.