Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time.

PURPOSE: Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver's physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear; effects may be exacerbated at the end of life when caregiving is intensified. Not all caregivers have the support of an additional involved support person (secondary caregiver). The impact of the secondary caregiver's absence on the primary caregiver's well-being is understudied. METHODS: Terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined. RESULTS: Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient's wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations. CONCLUSIONS: Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.

Associations between blood pressure control and clinical events suggestive of nutrition care documented in electronic health records of patients with hypertension.

BACKGROUND: Clinical events suggestive of nutrition care found in electronic health records (EHRs) are rarely explored for their associations with hypertension outcomes. METHODS: Longitudinal analysis using structured EHR data from primary care visits at a health system in the US from December 2017-December 2020 of adult patients with hypertension (n = 4,237) tested for associations between last visit blood pressure (BP) control (≤ 140 Systolic BP and ≤ 90 Diastolic BP) and ≥ 1 nutrition care clinical event operationalized as (overweight or obesity (BMI > 25 or 30, respectively) diagnoses, preventive care visits, or provision of patient education materials (PEM)). Descriptive statistics and longitudinal targeted maximum likelihood estimation (LTMLE) models were conducted to explore average treatment effects (ATE) of timing and dose response from these clinical events on blood pressure control overall and by race. RESULTS: The median age was 62 years, 29% were male, 52% were Black, 25% were from rural areas and 50% had controlled BP at baseline. Annual documentation of overweight/obesity diagnoses ranged 3.0-7.8%, preventive care visits ranged 6.2-15.7%, and PEM with dietary and hypertension content were distributed to 8.5-28.8% patients. LTMLE models stratified by race showed differences in timing, dose, and type of nutrition care. Black patients who had nutrition care in Year 3 only compared to none had lower odds for BP control (ATE -0.23, 95% CI: -0.38,-0.08, p = 0.003), preventive visits in the last 2 years high higher odds for BP control (ATE 0.31, 95% CI: 0.07,0.54, p = 0.01), and early or late PEMs had lower odds for BP control (ATE -0.08, 95% CI: -0.15,-0.01, p = 0.03 and ATE -0.23, 95% CI: -0.41,-0.05, p = 0.01, respectively). CONCLUSIONS: In this study, clinical events suggestive of nutrition care are significantly associated with BP control, but are infrequent and effects differ by type, timing, and patient race. Preventive visits appear to have the most effect; additional research should include examining clinical notes for evidence of nutrition care among different populations, which may uncover areas for improving nutrition care for patients with chronic disease.

Pre-diagnosis Symptoms, Attributed Causes, and Healthcare Seeking Assets of Younger Colorectal Cancer Survivors.

Younger onset colorectal cancer (CRC) rates continue to rise. Survivors younger than the requisite age of population-based screening guidelines experience adverse symptoms, longer appraisal delays, and more advanced-stage diagnoses. This secondary analysis of interviews with n=252 recently diagnosed CRC survivors was completed to compare younger and older survivors' symptoms, attributed causes, and healthcare seeking assets. The original transcripts and quantitative data were divided into two survivor classifications, younger (age <50 years) (N=64) and older (N=188). Bivariate analyses assessed differences between younger and older survivors for symptoms, attributed causes, and seeking healthcare assets. Multiple logistic regression models adjusting for race, sex, income, education, and stage of diagnosis were conducted for significant bivariate findings. An α level .05 was used to detect significance. Bleeding (𝛘2=3.8, p =0.05) and loss of appetite/weight differed between survivors (𝛘2=5.3, p=0.02) but not after controlling for sex and race respectively. Younger survivors were more likely to report being too young/healthy to have cancer (𝛘2=7.8, p<0.01) and social support encouragement to seek healthcare (𝛘2=6.4, p=0.01). Having a regular healthcare provider was more common among older survivors (𝛘2=6.4, p=0.01). Logistic regression models also detected age as a significant predictor for all healthcare seeking assets. Clinical and public health practice can benefit from understanding that CRC symptoms may present similarly but assets that facilitate seeking healthcare appraisal differ based upon age. Expanding knowledge of CRC risk factors and symptoms across healthcare professionals and the general public could promote earlier appraisal regardless of age and improve outcomes for younger survivors.

The presence of a secondary caregiver differentiates primary cancer caregiver well-being.

BACKGROUND: Informal caregivers play a fundamental role in the care of hematological cancer patients, but less is known about how secondary caregivers are involved. We assessed the presence or absence of a secondary caregiver, the types of caregiving activities performed by primary and secondary caregivers, and examined whether the presence of a secondary caregiver was associated with primary caregiver characteristics and well-being over time. 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. Multilevel models were developed to examine the associations between the presence of a secondary caregiver and the primary caregivers' well-being. RESULTS: Most (64.9%) primary caregivers reported having secondary caregivers. Multilevel models showed primary caregivers without help had higher baseline mental and physical health, but experienced deteriorating physical health over time, compared to supported primary caregivers. Supported primary caregivers reported improvements in mental health over time that was associated with improvements in physical health. CONCLUSIONS: Primary caregivers in good physical and mental health at the beginning of their caregiving journey but who have the least assistance from others may be at greatest risk for detrimental physical health effects long term. Attention to the arrangement of caregiving roles (i.e., who provides what care) over time is needed to ensure that caregivers remain healthy and well supported.

Are primary care providers' nutrition care and food insecurity screening practices associated with their perceptions of team-based care?

BACKGROUND: Screening for food insecurity (FI) and providing nutrition care are important management strategies for chronic diseases, but rates are low. Aspects of team-based care and providers' nutrition competence may help inform interventions to improve these services. The objectives of this study were to describe US primary care providers' FI screening and nutrition care practices (counselling, referrals, and time spent counselling) and test for associations with scored measures of their perceptions of team-based care (care continuity, patient-centredness, coordination with external providers and resources) and nutrition competence (confidence counselling and attitudes towards nutrition). METHODS: Cross-sectional online survey data of primary care providers were described and analysed for associations using Wilcoxon rank sum tests. RESULTS: Of provider respondents (N = 92), 35% (n = 32) worked in clinics that screen for FI and had higher team perceptions (P = 0.006) versus those who do not. Those who reported counselling >30% patients about nutrition (57%, n = 52) and referring >10% patients to nutrition professionals (24%, n = 22) had significantly better attitudes towards nutrition (P = 0.013 and P = 0.04, respectively) compared with those with lower counselling and referral rates. Half (n = 46) of the providers reported spending >3-min counselling each patient about nutrition and had higher patient-centred care (P = 0.004) and nutrition competence (P < 0.001) compared with those who spent less time counselling. CONCLUSION: Providers in clinics that screen for FI had higher overall perceptions of team-based care, but their nutrition competence was not significantly different. Meanwhile, reported more time counselling was associated with a culture of patient-centredness. Promoting team-based care may be a mechanism for improving FI screening and nutrition care.

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.

A cross-sectional analysis of associations between lifestyle advice and behavior changes in patients with hypertension or diabetes: NHANES 2015-2018.

Clinicians supporting patients in lifestyle behavior change is an important strategy to help reduce chronic disease burden. Using National Health and Nutrition Examination Survey (NHANES) data from 2015 to 2018, this study assessed rates of and associations between patient-reported receipt of lifestyle behavior change advice and corresponding self-reported behavior change for four different lifestyle behaviors: 1) weight loss, 2) increase physical activity, 3) reduce sodium, and 4) reduce fat and calories. Adult survey respondents with hypertension and/or diabetes (n = 4716) who received lifestyle advice ranged from 43% to 58%, with the most common recommendation being to increase physical activity. Between 61% and 73% of respondents reported currently modifying health behaviors, with the greatest number reporting weight loss. Multiple logistic regression models were used to test associations for each lifestyle behavior advice-behavior change pair, adjusting for demographic characteristics. Compared to those who received no advice, respondents who received advice had significantly higher odds of reporting losing weight (aOR: 1.93; 95% CI: 1.51, 2.48); increasing physical activity (aOR 2.02; 95% CI: 1.73, 2.37); reducing dietary sodium (aOR 4.95; 95% CI: 3.93, 6.25); and reducing intake of fat/cal (aOR 3.57; 95% CI: 2.86, 4.45). This study utilized population level data to lend further evidence that provider advice about lifestyle behaviors for patients who have hypertension or diabetes may influence patient behavior. However, prevalence of advice is low, and differences in rates of behavior change exist across socioeconomic status and race/ethnicity, indicating a need to further research how providers might better support patients with varying social needs.

Recruitment of African Americans into Cancer Clinical Research: Strategies and Outcomes.

This study utilized data from four cancer-focused research studies that recruited and retained African Americans. Strategies and outcomes across four cancer prevention and control studies were analyzed. Descriptive statistics were used to display participant characteristics. There were 712 African American (Black) participants of which 14.6% were males. Common strategies involved connecting with community stakeholders and identifying study champions. Study recruitment methods might not be generalizable to all populations of African Americans due to geographic locations, study protocols (e.g., risk reduction), target populations (i.e., eligibility criteria), and available resources. Many African Americans have a strong interest in cancer-related research as demonstrated by participation levels. Teams that connect with relevant stakeholders and include diverse teams may be useful to engage larger numbers of minorities in cancer control research to impact morbidity and mortality.

The Effects of Personalizing Colorectal Cancer Risk Communication on Risk Perceptions and Health Behavior Intentions: a Randomized Trial of Average-Risk Adults.

Risk assessment tools may help individuals gauge cancer risk and motivate lifestyle and screening behavior changes. Despite the evermore common availability of such tools, little is known about their potential utility in average-risk population approaches to cancer prevention. We evaluated the effects of providing personalized (vs. generic) information concerning colorectal cancer (CRC) risk factors on average-risk individuals' risk perceptions and intentions to engage in three risk-reducing behaviors: CRC screening, diet, and physical activity. Further, we explored whether the receipt of CRC-specific risk assessment feedback influenced individuals' breast cancer risk perceptions and mammography intentions. Using an online survey, N = 419 survey respondents aged 50-75 with no personal or family history of CRC were randomized to receive an average estimate of CRC lifetime risk and risk factor information that was either personalized (treatment) or invariant/non-personalized (control). Respondent risk perceptions and behavioral intentions were ascertained before and after risk assessment administration. No differences were observed in risk perceptions or behavioral intentions by study arm. However, regardless of study arm, CRC screening intentions significantly increased after risk assessment feedback was provided. This occurred despite a significant reduction in risk perceptions. Results support the role simple cancer risk assessment information could play in promoting screening behaviors while improving the accuracy of cancer risk perceptions. Providing cancer risk assessment information may decrease individuals' perceptions of cancer risk to more realistic levels while simultaneously facilitating screening intentions among an average-risk population, regardless of whether provided risk information is personalized.

Hematological cancer patient-caregiver dyadic communication: A longitudinal examination of cancer communication concordance.

OBJECTIVE: Informal caregivers play a fundamental role in care and decision making with hematological cancer patients. Concordant patient-caregiver communication is a critical antecedent to high quality decision making. Little is known about patterns of dyadic communication throughout the cancer treatment continuum. The objective of this study was to assess patterns of cancer communication concordance regarding treatment and care among hematological cancer patients undergoing active treatment and their informal caregivers and test whether patterns were associated with participant characteristics. 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. Latent Class Growth Models (LCGM) were used to analyze longitudinal data captured using Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) and the association with participant characteristics. RESULTS: White patient-caregiver dyads demonstrated decreased communication concordance and African American dyads demonstrated increased communication concordance over time. Lower communication concordance was found among dyads with lower levels of education and income, and cancers diagnosed at more advanced stages; these relationships were stable over time. Modeling identified the presence of three distinct communication groups (Stable Concordant (57.4%), Fluctuating Medium Concordant (37.8%), High Discordant (5.4%)) that differed by baseline level of communication concordance, patterns of concordance over time, race, income and the dyad relationship. CONCLUSIONS: Patient-caregiver cancer communication concordance was not static overtime. Results suggest the presence of a new dyadic cancer communication typology that could help preemptively identify dyads at risk for communication difficulties that impede treatment decision making.

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.

The contribution of body mass index to appraisal delay in colorectal cancer diagnosis: a structural equation modelling study.

BACKGROUND: Appraisal delay (AD) refers to the time interval between onset of symptoms and the date a patient first seeks healthcare. Because studies have shown that individuals who are overweight or obese may delay or avoid seeking healthcare due to stigma, this study aims to investigate the role that weight plays in AD among symptomatic individuals subsequently diagnosed with colorectal cancer (CRC). METHODS: Structural equation modelling tested the relationship between AD, body mass index (BMI), financial barriers, cognitive barriers, and reported symptoms among 179 newly diagnosed CRC patients in two U.S. healthcare systems. RESULTS: BMI was directly and significantly related to AD (ß=0.10; P=0.044) and to cognitive barriers (ß=0.24; P=0.005). Cognitive barriers were direct and significant predictors of increased AD (ß=0.32; P=0.000). Symptom experience and financial barriers were mediated through cognitive barriers. CONCLUSIONS: Model results support the hypothesis that increased BMI is significantly and directly associated with increased AD and key cognitive barriers relevant to care-seeking behaviour.

Acceptability of a Self-Guided Lifestyle Intervention Among Young Men: Mixed Methods Analysis of Pilot Findings.

BACKGROUND: Young men are vastly underrepresented in lifestyle interventions, suggesting a need to develop appealing yet effective interventions for this population. OBJECTIVE: This study aimed to determine the acceptability of a self-guided lifestyle intervention designed specifically for young men (age: 18-35 years old). METHODS: Semistructured interviews and surveys were completed by 14 men following completion of a remotely delivered, 12-week lifestyle intervention. The intervention included 1 virtual group session, digital tools, access to self-paced web- and mobile-based content, and 12 weekly health risk text messages. We quantitatively and qualitatively examined young men's experiences with the intervention components of a remotely delivered, self-guided lifestyle intervention targeting weight loss. Data were integrated using convergent mixed methods analysis. RESULTS: Men were a mean age of 29.9 (SD 4.9) years with a mean BMI of 31.0 (SD 4.5) kg/m2. The self-guided aspect was not acceptable, and a majority preferred more check-ins. Participants expressed a desire for a social aspect in future lifestyle interventions. All men found the focus on health risks appealing. A majority of men found the study-issued, Bluetooth-enabled scale acceptable. CONCLUSIONS: Acceptability of the self-guided lifestyle intervention was perceived as suboptimal by young men. The findings highlight the need to add intervention components that sustain motivation and provide additional social support for young men. TRIAL REGISTRATION: ClinicalTrials.gov NCT04267263; https://www.clinicaltrials.gov/study/NCT04267263.

The Chickahominy T.R.U.T.H. (Trust, Research, Understand, Teach, and Heal) Project-A Tribal Community-Academic Partnership for Understanding the Impact of Structural Factors on Perceived Cancer Risk in Rural Virginia.

In 2022, the Virginia Chickahominy Indian Tribe partnered with Virginia Commonwealth University Massey Comprehensive Cancer Center to investigate concerns about a potential cancer cluster near a local landfill. While investigating cancer clusters is complex due to long latency and multifactorial causes, the community's concerns about structural factors driving cancer risk warrant exploration. Thus, the Chickahominy T.R.U.T.H. (Trust, Research, Understand, Teach, and Heal) Project was created as a community-academic partnership to (1) identify structural factors and barriers associated with perceived cancer risk and care; (2) assess cancer knowledge, care access gaps, and perceived risks, including testing private and community water sources; (3) develop and deploy culturally tailored cancer education and resource navigation, including groundwater safety education, policies, and remediation. We will conduct 150 in-person interviews and water tests among residents within a four-mile radius of the landfill, and deploy 1000 structured questionnaires among Charles City County residents. In this paper, we provide an overview of the ongoing project design, development, and progress in support of the project's objectives. This collaborative investigation aims to address cancer health disparities, enhance research and health policy advocacy, and honor the sacred knowledge of an underserved community, laying the groundwork for a long-term partnership to guide future research questions.

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.

Associations between Blood Pressure Control and Documented Nutrition Care Using Structured Data from Electronic Health Records of Patients with Hypertension.

Background: Documentation in Electronic Health Records (EHRs) of nutrition care events (overweight or obesity (BMI > 25 or 30, respectively) diagnoses, preventive care visits, or provision of patient education materials (PEM)) for chronic diseases is unclear. Methods: Cross-sectional analysis using structured EHR data from primary care visits at a health system in the US from January 2018 - December 2020 of adult patients with hypertension (n = 6,419) tested for associations between last visit blood pressure (BP) control (≤ 140 Systolic BP and ≤ 90 Diastolic BP) and aggregate nutrition care events. Descriptive statistics and multiple logistic regression models were constructed to examine the predictive power of nutrition care events for blood pressure control. Results: The median age was 62 years, 32% were male, 48% were Black, 26% were from rural areas and 35.9% had controlled BP at last visit. For the 62% of patients with documented nutrition care, 14.6% had an overweight/obesity diagnosis, 26.2% had a preventive care visit, and 42% received PEM with dietary and hypertension content. The models showed patients who had more preventive care visits (aOR 1.12; CL 1.06, 1.18) had higher odds for BP control. Whereas Black patients compared with white patients (aOR 0.84; CL 0.74, 0.95), those with more hypertension medications (aOR 0.97; CL 0.96, 0.99) and more primary care visits over the study period (aOR 0.98; CL 0.97, 0.99) had lower odds for BP control. Conclusions: In this study, documented nutrition care in preventive care visits is significantly associated with BP control, but documentation is infrequent. Additional research should include examining clinical notes for evidence of nutrition care, which may uncover areas that show promise for improving nutrition care for patients with chronic disease.

Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time.

Purpose: Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver's physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear. The impact of the secondary caregiver's absence on the primary caregivers' well-being is understudied. Methods: Terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined. Results: Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient's wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations. Conclusions: Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.

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.

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.