Psychobehavioral risk factors for financial hardship and poor functional outcomes in survivors of multiple primary cancers.

OBJECTIVE: Survivors of multiple primary cancers (MPC) are at increased risk for poor health outcomes compared with survivors of single cancers. Using an adapted psychobehavioral stress-response model, the study purpose was to identify pathways and individual risk factors associated with poor health outcomes in adults with MPC. METHODS: Adult MPC survivors (N = 211) with first cancers (stages I-III) diagnosed within 1 to 10 years were recruited via tumor registry. Employing a cross-sectional design, established questionnaires were used to operationalize patient characteristics and theoretical constructs including perceived stress, psychological and behavioral responses, financial hardship, social role function, and physical health. Disease and treatment data were obtained via registry and medical records. Structural equation modeling (SEM) was performed to fit, test, and modify the hypothesized psychobehavioral model. RESULTS: Following measurement model refinement, an SEM linking self-management behaviors, distress, financial hardship, and functional health demonstrated a good fit: χ2 (200, N = 206) = 332.06, P < .01; Tucker-Lewis index (TLI) = .95, comparative fit index (CFI) = .96, standardized root mean residual (SRMR) = .06, root-mean-square error of approximation (RMSEA) = .06. Less use of self-management behaviors predicted higher distress which, in turn, predicted higher financial hardship; higher distress and financial hardship predicted poorer functional health. Several sociodemographic and personal factors predicted self-management behaviors and distress. CONCLUSIONS: The hypothesized stress-response model was partially supported. Data supported pathways among self-management behaviors, distress, financial hardship, and functional health. Self-management and distress may represent modifiable intervention targets for MPC survivors. High body mass index (BMI), less education, greater neuroticism, and lower social support were associated with less use of self-management behaviors and higher distress and should be further evaluated as potential markers of vulnerability.

Psychometric Evaluation of the Caregiver Needs Screen in Neuro-Oncology Family Caregivers.

BACKGROUND AND PURPOSE: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties. METHODS: The 32-item instrument was developed based on PMBT caregiver interviews (N = 109) and expert review. The CNS was tested along measures of depression, anxiety, burden, and mastery in 122 PMBT caregivers. Principal components analysis was used to examine item properties and internal structure. Internal consistency reliability and construct validity were assessed. RESULTS: Six subscales were identified with internal consistency ranging between alpha = .653 and .857. Convergent validity was verified by moderate/high correlations between measures of caregiver well-being and CNS scale scores. CONCLUSIONS: Findings provide preliminary evidence of reliability and validity for the CNS. This instrument can be useful when assessing caregivers' needs for supportive care.

Caring for Survivors of Gynecologic Cancer: Assessment and Management of Long-term and Late Effects.

OBJECTIVE: To define important aspects of survivorship care for the more than 1.2million survivors of gynecologic cancer currently living in the US. DATA SOURCES: Research articles, reviews, position statements and white papers, and evidence-based guidelines. CONCLUSION: Survivorship care includes a coordinated plan of care, ongoing surveillance, health promotion support, and management of long-term and late effects of treatment. IMPLICATIONS FOR NURSING PRACTICE: Nurses need to be aware of the current guidelines for post-treatment surveillance and health promotion recommendations for survivors of gynecologic cancers. Early identification of long-term and late effects of treatment followed by coordinated medical intervention and self-management education are essential to improve quality of life.

Caregiving Is a Marathon, Not a Road Race: Reenvisioning Caregiver Support Services in Gynecologic Oncology.

OBJECTIVES: As gynecologic cancer care shifts to the outpatient setting, caregivers are instrumental in helping patients navigate the demands of the disease and treatment. Through social media, we aimed to understand the needs of caregivers of patients with gynecologic cancers and support services necessary to meet these needs. METHODS: On January 10, 2018, a monthly Twitter discussion session was hosted by the GYNecologic Cancer Social Media community (handle @GYNCSM) using the hashtag #GYNCSM. Five topics regarding caregiver needs and support were discussed. Basic descriptive statistics, including means and frequencies of tweets, and a content analysis of the tweets were performed. RESULTS: Forty-six participants posted a total of 471 tweets, with 1.725 million impressions. Four main themes of caregiver needs emerged, including accepting help from others, a need to care for themselves as caregivers, increased access to information and resources, and a need for the health care team to communicate with caregivers. Themes relating to barriers to obtaining support services included practical barriers, a lack of awareness, negative emotions, and a need to do it all themselves. Participants suggested that caregiver support programs include convenient resources, caregiver peer support programs, support for the "work" of caregiving, and support to improve the emotional and physical health of the caregiver. CONCLUSIONS: Experts, patients, and caregivers effectively engaged in social media to identify a wide range of needs of caregivers of women with gynecologic cancers. Further research is needed to identify specific support services that could meet the priority needs of a broader network of caregivers.

Mind the Mode: Differences in Paper vs. Web-Based Survey Modes Among Women With Cancer.

CONTEXT: Researchers administering surveys seek to balance data quality, sources of error, and practical concerns when selecting an administration mode. Rarely are decisions about survey administration based on the background of study participants, although socio-demographic characteristics like age, education, and race may contribute to participants' (non)responses. OBJECTIVES: In this study, we describe differences in paper- and web-based surveys administered in a national cancer survivor study of women with a history of cancer to compare the ability of each survey administrative mode to provide quality, generalizable data. METHODS: We compared paper- and web-based survey data by socio-demographic characteristics of respondents, missing data rates, scores on primary outcome measure, and administrative costs and time using descriptive statistics, tests of mean group differences, and linear regression. RESULTS: Our findings indicate that more potentially vulnerable patients preferred paper questionnaires and that data quality, responses, and costs significantly varied by mode and participants' demographic information. We provide targeted suggestions for researchers conducting survey research to reduce survey error and increase generalizability of study results to the patient population of interest. CONCLUSION: Researchers must carefully weigh the pros and cons of survey administration modes to ensure a representative sample and high-quality data.

Family caregivers' level of mastery predicts survival of patients with glioblastoma: A preliminary report.

BACKGROUND: Glioblastoma multiforme (GBM) is associated with a poor prognosis, and patients rely heavily on family caregivers for physical and emotional support. The capability and mental health of family caregivers may influence their ability to provide care and affect patient outcomes. The objective of the current study was to investigate whether caregivers' anxiety, depressive symptoms, burden, and mastery influenced survival in a sample of patients newly diagnosed with GBM. METHODS: Baseline data from caregiver-patient dyads participating in a longitudinal study funded by the National Institutes of Health were used. Cox regression analyses were performed to determine whether caregiver anxiety (Profile of Mood States-Anxiety), depressive symptoms (Center for Epidemiologic Studies-Depression Scale), burden (Caregiver Reaction Assessment), and feelings of mastery (Mastery Scale) predicted the survival time of patients with GBM after controlling for known covariates (patient age, Karnofsky performance status, type of surgery, and postsurgical treatment). RESULTS: A total of 88 caregiver-patient dyads were included. The median overall survival for the sample was 14.5 months (range, 0-88 months). After controlling for covariates, caregiver mastery was found to be predictive of patient survival. With each unit increase in mastery, there was a 16.1% risk reduction in patient death (95% confidence interval, 0.771-0.913; P<.001). CONCLUSIONS: To the authors' knowledge, the results of the current study are among the first to explore the impact of family caregiving on the outcomes of patients with GBM. If these results are supported in other studies, providing neuro-oncology caregivers with more structured support and guidance in clinical practice has the potential to improve caregivers' feelings of mastery, thereby influencing patients' well-being for the better. Cancer 2017;123:832-40. © 2016 American Cancer Society.

Neuro-oncology family caregivers are at risk for systemic inflammation.

Prolonged periods of family caregiving can induce stress levels that may negatively influence caregiver health. However, the physiologic effect of psychological distress in oncology family caregivers has received little attention. Therefore we aimed to determine longitudinal profiles of inflammatory cytokines (IL-6 and IL-1ra) in neuro-oncology caregivers and identify associations between psychological distress and cytokine levels. Depressive symptoms, anxiety, caregiver burden and blood were collected from 108 adult caregivers at adult patients' diagnosis, 4-, 8-, and 12-months. Trajectory analyses of log transformed cytokine levels were performed. Multiple logistic regression analyses evaluated the impact of psychological distress on cytokine levels. For both cytokines, two distinct populations were identified, neither of which changed over time. High IL-1ra was associated with male caregivers with anxiety (OR = 1.7; 95 %CI 1.06-2.83) and obese caregivers (BMI = 40) who felt burdened due to disrupted schedules (OR = 1.3; 95 %CI 1.02-1.77). Conversely, caregivers with a healthy weight (BMI = 25) who felt burdened due to disrupted schedules were less likely to have high IL-1ra (OR = 0.71; 95 %CI 0.54-0.92). Caregivers ≤30 years old with lower self-esteem from caregiving were 1.16 times (95 %CI 1.04-1.30) more likely to have high IL-6. Analysis demonstrated groups of family caregivers with high and low levels of systemic inflammation and these levels did not change longitudinally over the care trajectory. Poor physical health in family caregivers may have a negative impact on the burden placed on the healthcare system in general and on the well-being of neuro-oncology patients in particular.

Treatment disparities following the diagnosis of an astrocytoma.

Post-operative radiation and chemotherapy following diagnosis of astrocytoma are standard care. No research has examined racial or insurance-based disparities in treatment receipt. The purpose of this study was to evaluate whether African Americans and patients with dual eligibility in Medicare and Medicaid (DE), compared to Caucasians and patients with Medicare alone, experienced differences in (1) seeing a radiation oncologist, (2) receiving radiation or chemotherapy, and (3) overall survival. Using a retrospective descriptive design, statewide Medicaid and Medicare data were merged with the Michigan Tumor Registry to extract a sample of patients (n = 604) ≥ 65 years old with a first primary astrocytoma diagnosis in Michigan between 1996 and 2000. There were no racial or insurance-based differences in reporting a claim for a radiation oncologist. Controlling for age, income, surgical intervention, residence population, comorbidities, gender, and stage, African Americans were less likely to report radiation claims than Caucasians (OR = 0.20; 95% CI = 0.07-0.54). DE patients were less likely to report radiation claims (OR = 0.50; 95% CI = 0.26-0.94) than those with Medicare only. These differences were not seen with chemotherapy. When only those with a glioblastoma multiforme were examined, DE patients (OR = 0.47; 95% CI = 0.24-0.92) and African Americans (OR = 0.13; 95% CI = 0.04-0.44) were much less likely to report radiation claims. Race and insurance status did not significantly affect survival, although income did. Data suggest disparities in race and insurance status may exist in receiving standard of care for astrocytomas. Further research is warranted to replicate the data and determine potential sources for these disparities.

Perceptions of economic hardship and emotional health in a pilot sample of family caregivers.

Although several studies have quantified costs of cancer care; none to date have examined how cancer costs impact family caregivers' emotional health. This study was designed to evaluate how perceptions of economic hardship influence burden, depressive symptoms, and anxiety in family caregivers of persons with a primary malignant brain tumor. Caregiver (CG)/patient dyads (n = 33) were recruited at the time of diagnosis; data were collected at diagnosis and 4 months, and linear regression determined the impact of economic hardship on caregivers' emotional health. Economic hardship did not predict CG burden-schedule at diagnosis or 4 months. Economic hardship predicted burden-abandonment at diagnosis (P < 0.01), but not 4 months. There was a trend for economic hardship to predict CG depressive symptoms at 4 months (P = 0.09), but not at diagnosis. Economic hardship predicted CG anxiety at 4 months (P = 0.06), but not diagnosis. Results suggest caregivers' economic hardship is an important and dynamic aspect of the emotional health of neuro-oncology family caregivers.

A house of cards: the impact of treatment costs on women with breast and ovarian cancer.

Although much work has been done to quantify the direct and indirect costs of cancer treatment, little is known regarding how these costs impact the daily lives of persons undergoing active treatment of cancer. Content analysis performed on open-ended interviews with 22 women in 3 income categories undergoing chemotherapy for a diagnosis of breast or ovarian cancer revealed 7 themes. Most participants stated that they felt "lucky" or "thankful" that most of the treatment costs were being covered by insurance or personal income. Women also described receiving financial assistance from friends, family, and support organizations and stated that they often made trade-offs between paying for regular family expenses and paying for treatment-related expenses. Worry about future financial expenses and frustrations dealing with regulatory agencies were also pervasive in the interviews. Finally, participants described having to access retirement/savings accounts and voiced concerns regarding the impact of cancer treatment on their work income. Data from the study illuminate the personal impact of cancer costs and suggest that interventions to assist women with cancer in financial planning and negotiating with insurance companies may offset some of the financial burden of cancer treatment.

Predictors of employment and lost hours from work in cancer caregivers.

This cross-sectional, descriptive study identified variables associated with caregivers who (1) were employed and (2) reported lost hours from work due to care demands. Family caregivers (N=80) of persons with a primary malignant brain tumor participated in a 45-60 min telephone interview, answering questions regarding the impact of providing care on their emotional health and employment status. Younger caregivers were more likely to be employed. Caregivers were more likely to report lost hours from work when care recipients required assistance with Instrumental Activities of Daily Living (IADLs) and were closer to the time of diagnosis. Data suggest that interventions to assist caregivers in maintaining employment should target caregivers of persons with limitations in physical function and should include strategies to coordinate care to assist with IADLs.

I could lose everything: understanding the cost of a brain tumor.

Although studies have quantified the costs of cancer treatment, few have evaluated the widespread impact of cancer costs on the family unit. Specifically, little is known regarding how cancer affects patients and their families financially, and how they cope with these costs. The purpose of this descriptive study was to explore the financial impact of cancer care in neuro-oncology. Content analysis was used to examine data from interviews with 20 adults receiving treatment for a primary malignant brain tumor. Participants were recruited from across the United States through an advertisement in a national support group newsletter. Four major themes were identified -"paying for medication/healthcare", "strategies to offset costs", "impact of cancer costs", and "fear/uncertainty". Within the major themes several sub-themes were also recognized. In the theme of paying for medication/healthcare, participants emphasized sub-themes such as frustrations over "not qualifying/red tape" and being "thankful" for what was covered. Some of the strategies used to offset cancer costs included "cashing in" and relying on "family/friends" for financial support. When describing the impact of cancer costs, participants mentioned sub-themes including the "cost to their family", the "cost of their disability", and the impact of a "change in income/job". Results elucidate the financial concerns and coping strategies of persons undergoing treatment for cancer. These data help target patients' support needs during treatment, such as providing for their family and navigating their insurance policies, and suggest more efficient implementation of financial interventions are needed to alleviate the emotional burden of cancer costs.

Interventions to overcome clinician- and patient-related barriers to pain management.

Barriers to optimal cancer pain management exist among clinicians and patients, and within the healthcare system. This article focuses on clinician- and patient-related barriers and the interventions that have been tested to overcome them. Although individual studies have shown promise in improving patient outcomes, overall the studies do not provide clear answers to guide practice. Further research is required to determine what components of educational interventions are necessary to facilitate optimal cancer pain management.