The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden.

INTRODUCTION: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. METHODS: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. RESULTS: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). CONCLUSIONS: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.

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.