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.

The many "costs" of transportation: Examining what cancer caregivers experience as transportation obstacles.

BACKGROUND: Transportation has been identified as a specific source of burden for cancer caregivers. This study examined cancer caregivers' subjective experiences and objectives costs associated with transportation over a 6-month period of providing end-of-life care to a family member or friend. METHODS: This was a multi-site longitudinal, prospective cohort study that followed 223 caregiver-patient dyads. Data were collected using biweekly, semi-structured interviews for up to 6 months and collection of all caregiving related receipts. Interviews were coded and analyzed using a comparative, iterative analysis and actual out of pockets costs were described using descriptive statistics. RESULTS: Over the 6-month study period most caregivers (n = 143; 74%) discussed transportation at one or more timepoints. Average biweekly transportations costs to caregivers were $43.6. Caregivers described (n = 56; 39%) multiple direct and indirect costs of transportation, and 58% (n = 84) discussed the need for transportations services or assistance at the institutional level. CONCLUSIONS: Caregivers described the multifaceted costs of transportation they experienced which are in line with previous work. Alongside descriptions of direct costs, caregivers described key opportunity costs, such as personal and work time forgone to transporting patients. Caregivers also made suggestions for institutional and/or civic based solutions to facilitate reliable modes of transportation, rather than individual-level intervention.

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.

Colorectal cancer lifetime risk accuracy and behavior change intentions before and after risk assessment.

PURPOSE: This study examined accuracy of perceived lifetime risk of colorectal cancer prior to and following receipt of cancer risk assessment (CRA) feedback among average risk adults. The specific aims were to identify predictors of improved risk perceptions and assess whether improvement in perceived lifetime risk accuracy was associated with changes in behavioral intentions for physical activity, diet, and colorectal cancer screening. METHODS: Adults with no known history of colorectal cancer (n = 419) were enrolled in a study examining the impact of colorectal cancer risk assessment feedback. Risk perceptions and behavioral intentions were ascertained before and after risk assessment administration. RESULTS: Accuracy of perceived lifetime risk significantly improved after CRA feedback, often as a result of lowered perceived risk. Those who were White, married, attended some college, and had higher numeracy were more likely to report accurate lifetime risk post-CRA. No differences in behavioral intentions were reported between those with and without improved accuracy. CONCLUSION: Minorities and those with low numeracy were less likely to report accurate perceptions post-CRA. Although improved accuracy was not associated with increased behavioral intentions as expected, it is reassuring that intentions for health behaviors were not inhibited as perceived risk decreased.

Identifying How Patient Portals Impact Communication in Oncology.

Patient portals are becoming widespread throughout health-care systems. Initial research has demonstrated that they positively impact patient-provider communication and patients' health knowledge, but little is known about the impact of patient portals in the cancer setting, where highly complex and uncertain medical data are available for patients to view. To better understand communicative behaviors and perceptions of the patient portal and how it is utilized in oncology, in-depth, semi-structured interviews were conducted with 48 participants: 35 patients and 13 oncologists. Thematic analysis identified that portals help to enhance participation during in-person consultations, increase patients' self-advocacy, and build rapport with providers. However, patients' comfort level with reviewing information via the portal depended upon the severity of the test. Oncologists worried about patient anxiety and widening health disparities, but acknowledged that the portal can motivate them to expedite communication about laboratory and scan results. As patient portals become more widely used in all medical settings, oncologists should become more engaged with how patients are viewing their medical information and consider the portal within the framework of patient-centered care by valuing patients' communication preferences.

Managing work and cancer treatment: Experiences among survivors of hematological cancer.

BACKGROUND: The current study was performed to characterize the employment status of survivors of hematological cancer who have an informal caregiver from the time of diagnosis through the first 6 months of treatment. METHODS: Using a mixed methods approach, semistructured interviews with survivors of hematological cancer were conducted within 6 months of the initiation of cancer treatment. Interviews assessed cancer treatment status, barriers and facilitators to employment, financial and insurance status, and relationship with the primary caregiver. These results are part of a longitudinal study of cancer survivors and informal caregivers. RESULTS: A total of 171 patients were enrolled. Within 6 months of beginning cancer treatments, approximately 35% were no longer employed. Reasons to remain employed included financial need, employee benefits, and a sense of purpose and normalcy. Employer accommodations and supportive colleagues facilitated continued employment. Logistic regression analysis demonstrated that having a higher household income, a desire to work, nonphysical job tasks, and congruent survivor-caregiver communication were associated with greater odds of remaining employed. CONCLUSIONS: Within 6 months of initiating cancer treatment, the majority of survivors of hematological cancer had maintained employment. Because of the limitations imposed by the physical stress of cancer treatments, as well as the need to maintain employment to continue receiving employee benefits to cover such treatments, survivors of hematological cancer likely would benefit from employment accommodations that are sensitive to their unique needs. Cancer 2018;124:2824-2831. © 2018 American Cancer Society.

Finding medical care for colorectal cancer symptoms: experiences among those facing financial barriers.

Financial barriers can substantially delay medical care seeking. Using patient narratives provided by 252 colorectal cancer patients, we explored the experience of financial barriers to care seeking. Of the 252 patients interviewed, 84 identified financial barriers as a significant hurdle to obtaining health care for their colorectal cancer symptoms. Using verbatim transcripts of the narratives collected from patients between 2008 and 2010, three themes were identified: insurance status as a barrier (discussed by n = 84; 100% of subsample), finding medical care (discussed by n = 30; 36% of subsample) and, insurance companies as barriers (discussed by n = 7; 8% of subsample). Our analysis revealed that insurance status is more nuanced than the categories insured/uninsured and differentially affects how patients attempt to secure health care. While barriers to medical care for the uninsured have been well documented, the experiences of those who are underinsured are less well understood. To improve outcomes in these patients it is critical to understand how financial barriers to medical care are manifested. Even with anticipated changes of the Affordable Care Act, it remains important to understand how perceived financial barriers may be influencing patient behaviors, particularly those who have limited health care options due to insufficient health insurance coverage.

Internet use for prediagnosis symptom appraisal by colorectal cancer patients.

BACKGROUND: This study explored the characteristics of colorectal cancer (CRC) patients who accessed Internet-based health information as part of their symptom appraisal process prior to consulting a health care provider. METHOD: Newly diagnosed CRC patients who experienced symptoms prior to diagnosis were interviewed. Brief COPE was used to measure patient coping. Logistic and linear regressions were used to assess Internet use and appraisal delay. RESULTS: Twenty-five percent of the sample (61/242) consulted the Internet prior to visiting a health care provider. Internet use was associated with having private health insurance (odds ratio [OR] = 2.55; 95% confidence interval [CI] = 1.20-5.43) and experiencing elimination symptoms (OR = 1.43; 95% CI = 1.14-1.80) and was marginally associated with age (OR = 0.96; 95% CI = 0.93-0.99). Internet use was not related to delayed medical care seeking. CONCLUSION: Internet use did not influence decisions to seek medical care. The Internet provided a preliminary information resource for individuals who experienced embarrassing CRC symptoms, had private health insurance, and were younger.

Defining and measuring acculturation: a systematic review of public health studies with Hispanic populations in the United States.

In this systematic review we sought to identify how the public health literature focusing on Hispanic populations in the United States defined and measured the concept of acculturation. A review of 134 studies found considerable variation in the definition and measurement of this construct. The ten acculturation scales used provided little theoretical orientation. It was unclear the extent to which acculturative changes in attitudes, beliefs and behaviors were captured by current measurement tools, as these primarily measure linguistic elements. We suggest future research should refine existing tools, determine their validity and usefulness across ethnic and subethnic groups, and identify which aspects of acculturation these scales and indices reliably measure. Recommendations for use of acculturation instruments in public health practice with Hispanic populations are included.