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The objective of this study was to assess the feasibility, acceptability, and potential efficacy of ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone-a lay navigator-led, early palliative care telehealth intervention for African American/Black and/or rural-dwelling family caregivers of individuals with advanced cancer (ClinicalTrials.gov identifier NCT03464188).This was a pilot randomized trial (November 2019 to March 2021). Family caregivers of patients with newly diagnosed, stage III/IV, solid-tumor cancers were randomized to receive either an intervention or usual care. Intervention caregivers were paired with a specially trained lay navigator who delivered 6 weekly, 20-minute to 60-minute telehealth coaching sessions plus monthly follow-up for 24 weeks, reviewing skills in stress management, self-care, getting help, staying organized, and future planning. Feasibility was assessed according to the completion of sessions and questionnaires (predefined as a completion rate ≥80%). Acceptability was determined through intervention participants' ratings of their likelihood of recommending the intervention. Measures of caregiver distress and quality of life were collected at 8 and 24 weeks.Sixty-three family caregivers were randomized (usual care, n = 32; intervention, n = 31). Caregivers completed 65% of intervention sessions and 87% of questionnaires. Average ratings for recommending the program were 9.4, from 1 (not at all likely) to 10 (extremely likely). Over 24 weeks, the mean ± SE Hospital Anxiety and Depression Scale score improved by 0.30 ± 1.44 points in the intervention group and worsened by 1.99 ± 1.39 points in the usual care group (difference, -2.29; Cohen d, -0.32). The mean between-group difference scores in caregiver quality of life was -1.56 (usual care - intervention; d, -0.07). Similar outcome results were observed for patient participants.The authors piloted ENABLE Cornerstone, an intervention for African American and rural-dwelling advanced cancer family caregivers. The acceptability of the intervention and data collection rates were high, and the preliminary efficacy for caregiver distress was promising.To date, very few programs have been developed to support under-resourced cancer family caregivers. To address this need, the authors successfully pilot tested an early palliative care program, called Educate, Nurture, Advise, Before Life Ends (ENABLE) Cornerstone, for African American and rural family caregivers of individuals with advanced cancer. Cornerstone is led by specially trained lay people and involves a series of weekly phone sessions focused on coaching caregivers to manage stress and provide effective support to patients with cancer. The authors are now testing Cornerstone in a larger trial. If the program demonstrates benefit, it may yield a model of caregiver support that could be widely implemented.

Background Given the high risk of COVID‐19 mortality, patients with cancer may be vulnerable to fear of COVID‐19, adverse psychological outcomes, and health care delays. Methods This longitudinal study surveyed the pandemic's impact on patients with cancer (N= 1529) receiving Patient Advocate Foundation services during early and later pandemic. Generalized estimating equation with repeated measures was conducted to assess the effect of COVID‐19 on psychological distress. Logistic regression with repeated measures was used to assess the effect of COVID‐19 on any delays in accessing health care (e.g., specialty care doctors, laboratory, or diagnostic testing, etc.). Results Among 1199 respondents, 94% considered themselves high risk for COVID‐19. Respondents with more fear of COVID‐19 had a higher mean psychological distress score (10.21; 95% confidence intervals [CI] 9.38–11.03) compared to respondents with less fear (7.55; 95% CI 6.75–8.36). Additionally, 47% reported delaying care. Respondents with more fear of COVID‐19 had higher percentages of delayed care than those with less (56; 95% CI 39%–72% vs. 44%; 95% CI 28%–61%). These relationships persisted throughout the pandemic. For respondents with a COVID‐19 diagnosis in their household (n = 116), distress scores were similar despite higher delays in care (58% vs. 27%) than those without COVID‐19. Conclusions Fear of COVID‐19 is linked to psychological distress and delays in care among patients with cancer. Furthermore, those who are personally impacted see exacerbated cancer care delays. Timely psychosocial support and health care coordination are critical to meet increased care needs of patients with cancer during the COVID‐19 pandemic., Fear of COVID‐19 is associated with psychological distress and delay in cancer care. Timely psychosocial support and health care coordination are needed to meet increased care needs of patient with cancer during the pandemic.

Worldwide, nurses have been reporting high levels of burnout. Given the high prevalence of nurse burnout, measurements of burnout need to be carefully considered for their validity and reliability. Our research team used a relatively new instrument to measure burnout among nurses: the Copenhagen Burnout Inventory (CBI). This 19-item instrument measures burnout in three dimensions: Personal, Work-related, and Client-related Burnout. However, the psychometric properties of the CBI have not been examined in nurses. Thus, the purpose of this study was to determine the psychometric properties of the CBI in a state-wide survey of inpatient staff nurses. A total of 928 registered nurses working in Alabama-area hospitals (N = 42 hospitals) participated in this study. Confirmatory factor analysis resulted in an adequate fit to the data and supported construct validity. As evidence of convergent validity, the CBI was moderately to highly correlated with measures of the overall work environment, job satisfaction, and intent to leave, in the anticipated directions. The Cronbach's alphas for Personal Burnout, Work-related Burnout, and Client-related Burnout were 0.91, 0.89, and 0.92, respectively, demonstrating excellent internal consistency reliability for the subscales. Based on our data, the CBI demonstrates adequate validity and reliability for measuring burnout among frontline nurses. As nurses provide care to the most vulnerable patients in healthcare systems, their psychological well-being is important due to the impact on quality of care on patient outcomes. The availability of the CBI on its website allows nurses, nurse managers, and researchers to evaluate burnout in a variety of nursing populations with no licensing costs.

Background Little is known about the prevalence of healthy lifestyle (HLS) discussions between providers and older cancer survivors. Methods We utilized cross‐sectional data from older cancer survivors (≥65 years) seen at 12 southeastern cancer centers during 2013‐2015. Data on demographics, time since diagnosis, weight, height, and healthy behaviors were collected. Respondents were asked if providers (oncologists, other physicians, and/or nurses) discussed exercise, healthy diet, weight management, and/or smoking cessation during clinical encounters. Descriptive statistics and bivariate associations between HLS topics and survivor characteristics were calculated. Results Among 1460 cancer survivors, mean age was 74 years (SD 6), most were white (81%), and >1 year postdiagnosis (84%). The majority (71%) reported discussing at least one of three HLS topics (exercise 49%, healthy diet 53%, vegetable consumption 28%); 17% received counseling on all three. Weight loss was recommended to 33% of overweight/obese survivors and smoking cessation to 85% of current smokers. Oncologists and nurses discussed HLS less frequently compared to other physicians. Younger survivors (65‐74 years) received recommendations for exercise, weight loss, and tobacco cessation more often than older survivors (≥75 years). Compared to white respondents, minorities reported discussions on all topics more often except for tobacco cessation. Excluding tobacco cessation, survivors with recent cancer diagnoses (1 year postdiagnosis. Conclusion Despite the American Cancer Society's recommendations, older survivors reported a low prevalence of HLS discussions with their providers, with some variation by demographic groups. Strategies are needed to promote these important discussions in this population., Provider's recommendations for weight management, healthy diet, physical activity, and smoking cessation are key in promoting healthy lifestyles (HLS) among older cancer survivors. However, we found that not all survivors discuss all relevant HLS with their providers, with some groups of survivors having these discussions less often than others. Additional studies and strategies are needed to promote HLS discussions and achieve the American Cancer Society's (ACS) recommended HLS goals especially for diet, weight, and physical activity among older cancer survivors in the Southeastern US healthcare system

BACKGROUND The impact of National Comprehensive Cancer Network (NCCN) treatment guideline concordance on costs, health care utilization, and mortality for patients with breast cancer and secondary metastases is unknown. METHODS From 2007 to 2013, women with early-stage breast cancer who received treatment for secondary metastases (n = 5651) were evaluated for first recorded systemic therapy concordance with NCCN guidelines within the Surveillance, Epidemiology, and End Results Program-Medicare linked database. Generalized linear and mixed effects models evaluated factors associated with nonconcordance and the relation between concordance status and health care utilization and costs. Mortality risk was estimated with Cox regression. RESULTS Eighteen percent of the patients received nonconcordant therapy, with the most common being single-agent, human epidermal growth factor receptor 2 (HER2)-targeted therapy (36%), therapy mismatched with the estrogen receptor/HER2 status (11%), unapproved bevacizumab regimens (10%), and adjuvant regimens in a metastatic setting (6%). A younger age, a hormone receptor-negative status, and a HER2-positive status were associated with nonconcordance (P < .05). Nonconcordance was associated with 22% and 21% increased rates of emergency department visits and hospitalizations, respectively, and $1765 higher average monthly Medicare costs. Differences in adjusted mortality risk were noted by the category of nonconcordance; single-agent, HER2-targeted therapy was associated with decreased mortality risk (hazard ratio [HR], 0.66; 95% confidence limit [CL], 0.57-0.76), and increased mortality risk was observed with unapproved bevacizumab use (HR, 1.40; 95% CL, 1.13-1.74). CONCLUSIONS Most patients (82%) received treatment consistent with NCCN guidelines. Nonconcordant treatment was associated with higher health care utilization and costs, with mortality differences observed by the type of guideline deviation. Consideration of both patient and financial outcomes will be important as health systems increase the emphasis on guideline-based care.

Objectives The purpose of this study was to test the efficacy of MOUTh (Managing Oral Hygiene Using Threat Reduction), a nonpharmacologic, relationship-based intervention vs. control on 2 primary outcomes for nursing home (NH) residents with dementia who resisted mouth care: (i) reduction in the occurrence and intensity of care-resistant behaviours (CRBs) and (ii) improvement in oral health. Two secondary outcomes were also examined: (i) the duration of mouth care and (ii) the completion of oral hygiene activities. Background Persons with dementia who exhibit CRBs are at risk for inadequate mouth care and subsequent systemic illnesses. Materials and methods The study used a randomised repeated measures design. Recruitment occurred in 9 nursing homes that varied in size, ownership, reimbursement patterns and location. One hundred and one nursing home residents with dementia were randomised at the individual level to experimental (n = 55) or control groups (n = 46). One hundred participants provided data for the analyses. Results Compared to the control group, persons in the experimental group had twice the odds of allowing mouth care and completing oral hygiene activities; they also allowed longer duration of mouth care (d = 0.56), but showed only small reductions in the intensity of CRBs (d = 0.16) and small differential improvements in oral health (d = 0.18). Conclusion The data suggest that this intervention facilitates mouth care among persons with dementia. The management of refusal behaviour may be a clinically more realistic approach than reducing or eradicating refusals.

Nearly 50% of adults with HIV have some form of HIV-associated neurocognitive disorder (HAND), ranging from subtle to symptoms that interfere with everyday functioning and quality of life. HAND is diagnosed when a person performs more than 1 standard deviation below his or her normative mean on standardized measures in two or more cognitive domains (e.g., attention, speed of processing, verbal memory, executive functioning). As adults age with HIV, they are more likely to develop comorbidities such as cardiovascular disease, hypertension, and insulin resistance that may further contribute to poorer cognitive functioning and HAND. Certain computerized cognitive training programs may be able to improve specific cognitive domains in those with HIV. Such programs may be effective in changing the diagnosis of HAND in cognitively vulnerable adults. In this article, we describe the design and methods of TOPS-the Training On Purpose Study. In this on-going experimental study, 146 older adults (50+) with HAND are randomized to either: (i) an Individualized-Targeted Cognitive Training group, or (ii) a no-contact control group. This study targets those cognitive domains in which participants experience a deficit and trains participants with the corresponding computerized cognitive training program for that domain. An Individualized Targeted Cognitive Training approach using cognitive-domain-specific cognitive training programs may offer symptom relief to those individuals diagnosed with HAND, which may actually reverse this diagnosis. Given that these cognitive training programs are commercially available, this approach represents a potential paradigm shift in how HAND is considered and treated.

Background As the population of older adults with cancer continues to grow, the most important factors contributing to their health-related quality of life (HRQOL) remain unclear. Methods A total of 1457 older adults (aged ≥65 years) with cancer participated in a telephone survey. Outcomes were measured using the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores of the 12-Item Short Form Survey (SF-12) from the Medical Outcomes Study (version 2). Statistical techniques used to identify factors in 4 domains (physical, psychological, social, and spiritual) most strongly associated with HRQOL included linear models, recursive partitioning, and random forests. Models were developed in a training data set (920 respondents) and performance was assessed in a validation data set (537 respondents). Results Respondents were a median of 19 months from diagnosis, and 28.1% were receiving active treatment. The most relevant factors found to be associated with PCS were symptom severity, comorbidity scores, leisure-time physical activity, and having physical support needs. The most relevant factors for MCS were having emotional support needs, symptom severity score, and the number of financial hardship events. Results were consistent across modeling techniques. Symptoms found to be strongly associated with PCS included fatigue (adjusted proportion of summary score's variance [R2 ] = 0.34), pain (adjusted R2 = 0.32), disturbed sleep (adjusted R2 = 0.16), and drowsiness (adjusted R2 = 0.16). Symptoms found to be strongly associated with MCS included fatigue (adjusted R2 = 0.23), problems remembering things (adjusted R2 = 0.17), disturbed sleep (adjusted R2 = 0.16), and lack of appetite (adjusted R2 = 0.16). Conclusions The findings of the current study support the importance of addressing persistent symptoms, managing comorbidities, promoting leisure-time physical activity, and addressing financial challenges. A long-term comprehensive approach is needed to ensure the well-being of older adults with cancer. Cancer 2018;124:596-605. © 2017 American Cancer Society.

Little is known about out‐of‐pocket (OOP) costs incurred for medical and health needs by rural breast cancer survivors and what factors may be associated with higher OOP costs and the associated economic burden. Data were examined for 432 survivors participating in the Rural Breast Cancer Survivor Intervention trial. OOP costs were collected using the Work and Finances Inventory survey at baseline and four assessments every 3 months. Mean and median OOP costs and burden (percent of monthly income spent on OOP costs) were reported and factors associated with OOP costs and burden identified with generalized linear models fitted with over‐dispersed gamma distributions and logarithmic links (OOP costs) and with beta distributions with logit link (OOP burden). OOP costs per month since the end of treatment were on average $232.7 (median $95.6), declined at the next assessment point to $186.5 (median $89.1), and thereafter remained at that level. Mean OOP burden was 9% at baseline and between 7% and 8% at the next assessments. Factors suggestive of contributing to higher OOP costs and OOP burden were the following: younger age, lower income, time in survivorship from diagnosis, and use of supportive services. OOP costs burden rural breast cancer survivors, particularly those who are younger and low income. Research should investigate the impact of OOP costs and interventions to reduce economic burden.

Purpose The purpose of this article is to report the results of behavioral assessments collected at three time points of a cohort of children adopted from the former Soviet Union with particular emphasis on the impact of the adoptive family on problem behaviors. Problem Families adopting from the former USSR are concerned about the influence of pre-adoptive circumstances on their child's future health. Methods The study utilized data gathered in 1998 when the children's mean age was close to 8 years, in 2001 when the children were entering early adolescence, and in 2006 when the average age of the children was just over 15 years. The authors hypothesized that the negative impact of risk factors decreases over time, and that a family environment that is stable and supportive is inversely related to problem behaviors. The Child Behavior Checklist, the Family Environment Scale, and a parental report form were used for data collection. Findings Significant relationships between family environment and problem behaviors over time were found, with lower levels of conflict and higher levels of cohesion associated to lower problem behaviors. Being female does contribute to problem behavior with the passage of time. Conclusion Although the magnitude of these effects was small to moderate, a protective family environment may assist in decreasing problem behaviors.

Attrition can jeopardize both internal and external validity. The goal of this secondary analysis was to examine predictors of attrition using baseline data of 432 participants in the Rural Breast Cancer Survivors study. Attrition predictors were conceptualized based on demographic, social, cancer treatment, physical health, and mental health characteristics. Baseline measures were selected using this conceptualization. Bivariate tests of association, discrete-time Cox regression models and recursive partitioning techniques were used in analysis. Results showed that 100 participants (23%) dropped out by Month 12. Non-linear tree analyses showed that poor mental health and lack of health insurance were significant predictors of attrition. Findings contribute to future research efforts to reduce research attrition among rural underserved populations.

Objective Research has demonstrated that treating cancer patients' psychological and physical health leads to improved overall health. This may be especially true for palliative care patients facing serious illness. This study examines the proportion and determinants of psychology service utilization in an outpatient palliative care population. Methods Data from an existing clinical database in an outpatient palliative clinic utilizing a collaborative care model to deliver psychology services were explored. This study was framed by Andersen's Behavioral Model of Health Service Use, which incorporates three main components: predisposing, enabling, and need factors to model health service utilization. The sample (N = 149) was majority middle aged, female, and White with a primary diagnosis of cancer. Cross-tabulations were conducted to determine how many patients who met screening criteria for depression or anxiety sought psychology services. Logistic regression analyses were conducted to assess for predisposing, enabling, and need factor determinants of psychology service utilization. Results Among patients who met criteria for moderate depression or anxiety, 50% did not access readily available psychology services. Enabling factors were the strongest determinant of psychology utilization. Factors associated with need for psychology services (i.e., emotional distress and psychological symptom burden) did not reach significance in determining psychology service use. Conclusions This study extends current knowledge about psychology utilization to palliative care outpatients receiving care within a collaborative care model. Directions for future research include further investigation of care models that optimize enabling strategies to enhance access to these services, and examination of patient-reported barriers to receiving this care. Copyright © 2013 John Wiley & Sons, Ltd.

The importance of quality of life (QOL) measurement among breast cancer survivors (BCS) is well-recognized by researchers and clinicians. With data from 427 rural BCS, the authors used a combination of clinical expertise and statistical analysis to revise a 48-item measure of QOL specific to BCS. The revised 15-item measure showed adequate psychometric properties and provides the basis for a brief yet comprehensive multidimensional measure of QOL applicable to most BCS. Future work includes fine-tuning the measurement model and examining its generalizability among non-rural BCS.

The purpose of this mixed methods study was to evaluate the effect of participation in the "Seasoned Arts At the Samford for You" (SAASY) programme, which included a 6-week acting class and four public performances, on the psychological well-being and health-related quality of life of older adults. Twelve older adults with chronic conditions from a low-income senior apartment and a senior living community participated in the programme. The acting class, led by two professional artists, met for a 2-hour class weekly for six weeks. Participants completed the General Well-being Schedule (GWBS) and the 36-Item Short-Form Health Survey (SF-36) both at the beginning of the programme and one month after the programme ended. In addition, participants were individually interviewed to explore the perceived impact of the theatre programme on their well-being. Participants reported a significantly higher score in the GWBS and on the physical but not on the mental component summary of the SF-36 at post-SAASY programme. Content analysis of the interview transcripts revealed that participants attained an improved sense of self-worth and self-advocacy and overcame self-imposed limitations. Results showed improvement in psychological well-being and health-related quality of life, most notably in the physical health component of SF-36 after participating in the programme. Practice implications for occupational therapists using drama as a creative leisure occupation to promote health among older adults with chronic conditions may involve analysis of participants' occupational profile, identification of deficit areas and adaptation of the acting programme content to meet specific needs and goals. The present study used a pretest and post test one group design that has numerous inherent limitations that affect the ability to make valid inferences from study findings. A more rigorous research design with a wait-listed control group and collection of outcome measures immediately after the acting class as well as at three months follow-up is essential in validating the present findings. Outcome measures used in future studies to evaluate the health benefits of a theatre programme should focus on ameliorating the effects of disease on disability (such as functional mobility, everyday cognitive function and activities of daily living) in addition to prevention.

Objective: Fertility and childbearing issues are the major quality of life concerns among young breast cancer survivors. Practical approaches are needed to convey reproductive health information. The Fertility and Cancer Project (FCP) is a dedicated research project that provides online reproductive health and fertility education. We report FCP participants' (a) changes in mood and functioning and (b) changes in knowledge of fertility and cancer from baseline to 6-month follow-up. Methods: Participants completed five self-report baseline measures, accessed FCP content and participated in online discussions. At 6 months post FCP study entry, participants were asked to complete follow-up self-reports. Results: One hundred and six breast cancer survivors from 8 countries participated in the FCP. Mean age at diagnosis was 34.3 years; mean time since diagnosis was 22 months. Significant change was detected in improved physical functioning (p=0.019) and social functioning (p=0.02). Significant changes were also noted in improved fertility knowledge (p=0.011). Conclusion: Preliminary evidence shows that young breast cancer survivors derive improved mood and knowledge benefit from FCP participation. Internet-based approach may be a viable format for engaging this population of cancer survivors. Copyright © 2009 John Wiley & Sons, Ltd.