Understanding the Utility of Less Than Six-Month Prognosis Using Administrative Data Among U.S. Nursing Home Residents With Cancer.

Background: There is a dearth of studies evaluating the utility of reporting prognostication among nursing home (NH) residents with cancer. Objective: To study factors associated with documented less than six-month prognosis, and its relationship with end-of-life (EOL) care quality measures among residents with cancer. Methods: The Surveillance, Epidemiology, and End Results linked with Medicare, and the Minimum Data Set databases was used to identify 20,397 NH residents in the United States with breast, colorectal, lung, pancreatic, or prostate cancer who died between July 2016 and December 2018. Of these, 2205 residents (10.8%) were documented with less than six-month prognosis upon NH admission. Main outcomes were more than one hospitalization, more than one emergency department visit, and any intensive care unit admission within the last 30 days of life as aggressive EOL care markers, as well as admission to hospice, receipt of advance care planning and palliative care, and survival. Specificity and sensitivity of prognosis were assessed using six-month mortality as the outcome. Propensity score matching adjusted for selection biases, and logistic regression examined association. Results: Specificity and sensitivity of documented less than six-month prognosis for mortality were 94.2% and 13.7%, respectively. Residents with documented less than six-month prognosis had greater odds of being admitted to hospice than those without (adjusted odds ratio: 3.27, 95% confidence interval: 2.86-3.62), and lower odds to receive aggressive EOL care. Conclusion: In this cohort study, documented less than six-month prognosis was associated with less aggressive EOL care. Despite its high specificity, however, low sensitivity limits its utility to operationalize care on a larger population of residents with terminal illness.

Factors influencing how informal caregivers of people with multiple sclerosis access and use a curated intervention website: Analysis from an RCT.

Objective: Healthcare consumers and providers are increasingly turning to digital solutions, such as curated websites. Knowing who accesses/benefits from these may improve design and development. This study investigated website usage of informal caregivers of people with multiple sclerosis and shifts in outcome plausibly associated with usage. Methods: Secondary analysis of data from a randomized clinical trial of 148 caregivers compared effectiveness of a website + tele-coaching to a website only intervention for caregivers. Groupwise differences in means/proportions were tested using t-tests and chi-square. Modified Poisson regression with a robust variance estimator and ordinal logistic regression tested the relationship between group and likelihood of website log-in. Ordinal logistic regression models examined whether caregiver characteristics were associated with website use. Generalized estimating equations (GEE) with an autoregressive correlation structure modeled the relationship between website usage and outcomes. Results: Females were more likely to access the website than males (60% vs. 43%; p = 0.05). Though not statistically significant, a possible association (POR: .85, 95% CI: .69, 1.03) between caregiver burden and website access emerged; caregivers experiencing highest levels of burden appeared less likely to engage. Usage patterns differed by treatment arm: the website-only group accessed the Caring for yourself topic significantly more (61.67% vs. 38.33%: p = .04) with similar, but insignificant, trends for other topics. Conclusions: Clinicians can be confident referring females with moderate levels of burden to website-based interventions. By contrast, male caregivers and those experiencing high levels of burden may be less likely to access these resources, pointing to the need for alternative interventions. Trial Registration: Clinicaltrials.gov, registration number: NCT0466208.

Comparing the use of aggressive end-of life care among frail and non-frail patients with cancer using a claims-based frailty index.

INTRODUCTION: Despite mounting consensus that end-of-life (EOL) care for patients with cancer should focus on improving quality of life, many patients continue to receive aggressive, disease-oriented treatment until death. Within this group, patients with increased frailty may be at higher risk of adverse treatment-related outcomes. We therefore examined the relationship between degree of frailty and receipt of aggressive EOL care among Medicare-insured patients with cancer in Ohio. MATERIALS AND METHODS: From the Ohio Cancer Incidence Surveillance System (OCISS) linked with Medicare claims, we identified patients diagnosed with breast, colorectal, lung, or prostate cancer who died between 2012 and 2016. Frailty was operationalized using a validated claims-based frailty index. Six quality indicators reflecting receipt of aggressive EOL care were identified from claims: (1) any cancer-directed treatment, (2) >1 emergency department (ED) visit, (3) >1 hospital admission, (4) any intensive care unit (ICU) admission in the last 30 days of life, (5) entry to hospice in the last three days of life, and (6) in-hospital mortality. Multivariable logistic regression analysis was performed to control for demographic factors, Medicare and Medicaid dual enrollment, and cancer type and stage in the relationship between frailty and aggressive EOL care. RESULTS: Overall, 31,465 patients met selection criteria. Patients with moderate/severe frailty were less likely than non-/pre-frail patients to receive any aggressive EOL care (adjusted odds ratio [aOR] 0.92 [95% confidence interval 0.86-0.99]). This group was also less likely to undergo cancer-directed treatment in their last 30 days or to enter hospice in their last three days. Increasing frailty was associated with lower odds of admission to the ICU in the last 30 days of life (mild frailty: aOR 0.88 [0.83-0.94]; moderate/severe frailty: aOR 0.85 [0.78-0.92]) or of dying in-hospital (mild frailty: 0.85 [0.79-0.91]; moderate/severe frailty: aOR 0.74 [0.67-0.82]), but higher odds of having >1 ED visit in the last 30 days of life (mild frailty: aOR 1.43 [1.32-1.53]; moderate/severe frailty: aOR 1.61 [1.47-1.77]). DISCUSSION: These findings suggest the need for more explicit discussion of emergency care seeking for patients with cancer at the end of life.

Aggressive End-of-Life Care and Caregiver Satisfaction for Patients With Advanced Cancer.

Aggressive end-of-life care in patients with advanced cancer is associated with poor experiences and outcomes. The purpose of the study was to examine the impact of aggressive end-of-life care on caregiver satisfaction for caregivers of bereaved advanced cancer patients. Data of 101 caregivers were gathered using a longitudinal, descriptive correlational design study. Postdeath interviews were conducted 2 months after the patient's death. The most common end-of-life care indicators were patient not enrolled in hospice or enrolled within 3 days of death, >1 hospitalization, and intensive care unit admission. More than one-third of patients received at least one of the aggressive end-of-life care indicators in the last 30 days of life. From the multiple linear regression analyses, patient intensive care unit admission and having more than one hospitalization significantly affected caregiver satisfaction with care. Understanding caregiver satisfaction with care may improve the clinical practice of nurses who have crucial role in patients' end-of-life care.

Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals With Multiple Sclerosis: A Randomized Pilot Study Trial.

BACKGROUND: Caregivers of people with multiple sclerosis (MS) report poor emotional outcomes yet few interventions have been tested. The goal of this study was to compare the effectiveness of a remotely delivered intervention with 2 arms (ie, website and telecoaching vs website only) aimed at reducing depression, anxiety, stress, and distress in informal caregivers of individuals with MS. METHODS: From March 2021 through August 2021, 151 care-givers were enrolled in the study. The intervention occurred over a 4-month period. The website plus telecoaching arm received (a) a monthly coaching session focused on information, skill building, and support that was delivered by a licensed social worker via videoconference or telephone, and (b) had access to a study-designed website for caregivers of individuals with MS. The website-only arm did not receive coaching sessions and had the same website access. Data were obtained at baseline, immediately after the intervention period, and 6 weeks after the intervention. RESULTS: A linear mixed-effects model using an autoregressive covariance structure was used. It showed that the group by time interaction was statistically significant for the overall composite emotion score (depression, anxiety, stress) (P = .037) and the stress subscale score (P = .047), and it indicated that the website plus telecoaching arm demonstrated greater effectiveness at reducing the overall composite emotion and stress subscale scores. CONCLUSIONS: Use of a remotely delivered psychoeducational intervention that included individual coaching sessions as well as website access demonstrated preliminary efficacy in improving emotional outcomes in caregivers of individuals with MS. Further testing of the intervention with a larger sample is recommended.

Aggressive end-of-life care across gradients of cognitive impairment in nursing home patients with metastatic cancer.

BACKGROUND: Studies examining end-of-life (EOL) care in older cancer patients are scarce, and prior studies have not accounted for gradients of cognitive impairment (COG-I). We examine EOL care patterns across COG-I gradients, hypothesizing that greater COG-I severity is associated with lower odds of receiving aggressive EOL care. METHODS: Using data from the linked Surveillance Epidemiology and End Results (SEER) -Medicare -Minimum Data Set (MDS) 3.0, we identified patients with nursing facility stays (NFS) and who died with metastatic cancer from 2013 to 2017. Markers of aggressive EOL care were: cancer-directed treatment, intensive care unit admission, >1 emergency department visit, or >1 hospitalization in the last 30 days of life, hospice enrollment in the last 3 days of life, and in-hospital death. In addition to descriptive analysis, we conducted multivariable logistic regression analysis to evaluate the independent association between COG-I severity and receipt of aggressive EOL care. RESULTS: Of the 40,833 patients in our study population, 49.2% were cognitively intact; 24.4% had mild COG-I; 19.7% had moderate COG-I; and 6.7% had severe COG-I. The percent of patients who received aggressive EOL care was 62.6% and 74.2% among those who were cognitively intact and those with severe COG-I, respectively. Compared with cognitively intact patients, those with severe COG-I had 86% higher odds of receiving any type of aggressive EOL care (adjusted odds ratio (aOR): 1.86 (95% confidence interval: 1.70-2.04)), which were primarily associated with higher odds of in-hospital death. The odds of in-hospital death associated with severe COG-I were higher among those with short- than with long-term stays (aOR:2.58 (2.35-2.84) and aOR:1.40 (1.17-1.67), respectively). CONCLUSIONS: Contrary to our hypothesis, aggressive EOL care in older metastatic cancer patients with NFS was highest among those suffering severe COG-I. These findings can inform the development of interventions to help reduce aggressive EOL care in this patient population.

Psychometric Properties and Clinical Utility of the Distress Thermometer in Caregivers of Persons With Multiple Sclerosis.

BACKGROUND: Caregivers of persons with multiple sclerosis (MS) report high levels of distress. The National Comprehensive Cancer Network Distress Thermometer (DT) is used extensively with patients with cancer and their caregivers but has not been tested in nononcology caregivers. The purpose of this study was to examine the psychometric properties and clinical utility of the barometer portion of the DT in caregivers of persons with MS. METHODS: A secondary analysis was performed of data from a randomized trial comparing the effectiveness of 2 interventions aimed at reducing psychological outcomes associated with caregiving. The DT and the 4-item Patient-Reported Outcomes Measurement Information System Anxiety and Depression scales, which were administered at baseline, were used for all analyses. Construct validity (known groups) and convergent validity (interscale correlations) were evaluated. Receiver operating characteristic curve analysis was used to evaluate clinical diagnostic test evaluation. RESULTS: The DT had good construct validity supported by strong correlations for known-groups analyses and good convergent validity (r = 0.70-0.72). The DT also demonstrated good discrimination for anxiety (area under the curve [AUC] = 0.83) and depression (AUC = 0.80). The optimal screening cut point on the DT was 4 for anxiety and 5 for depression. CONCLUSIONS: The barometer portion of the DT demonstrates good psychometric properties and clinical utility in caregivers of persons with MS. This is the first examination of the DT in MS care partners.

Incidence of Aggressive End-of-Life Care Among Older Adults With Metastatic Cancer Living in Nursing Homes and Community Settings.

Importance: Nearly 10% of the 1.5 million persons residing in nursing homes (NHs) have received or will receive a diagnosis of cancer. Although aggressive end-of-life (EOL) care is common among community-dwelling patients with cancer, little is known about such patterns of care among NH residents with cancer. Objective: To compare markers of aggressive EOL care between older adults with metastatic cancer who are NH residents and their community-dwelling counterparts. Design, Setting, and Participants: This cohort study used the Surveillance, Epidemiology, and End Results database linked with the Medicare database and the Minimum Data Set (including NH clinical assessment data) for deaths occurring from January 1, 2013, to December 31, 2017, among 146 329 older patients with metastatic breast, colorectal, lung, pancreas, or prostate cancer, with a lookback period in claims data through July 1, 2012. Statistical analysis was conducted between March 2021 and September 2022. Exposures: Nursing home status. Main Outcomes and Measures: Markers of aggressive EOL care were cancer-directed treatment, intensive care unit admission, more than 1 emergency department visit or more than 1 hospitalization in the last 30 days of life, hospice enrollment in the last 3 days of life, and in-hospital death. Results: The study population included 146 329 patients 66 years of age or older (mean [SD] age, 78.2 [7.3] years; 51.9% men). Aggressive EOL care was more common among NH residents than community-dwelling residents (63.6% vs 58.3%). Nursing home status was associated with 4% higher odds of receiving aggressive EOL care (adjusted odds ratio [aOR], 1.04 [95% CI, 1.02-1.07]), 6% higher odds of more than 1 hospital admission in the last 30 days of life (aOR, 1.06 [95% CI, 1.02-1.10]), and 61% higher odds of dying in the hospital (aOR, 1.61 [95% CI, 1.57-1.65]). Conversely, NH status was associated with lower odds of receiving cancer-directed treatment (aOR, 0.57 [95% CI, 0.55-0.58]), intensive care unit admission (aOR, 0.82 [95% CI, 0.79-0.84]), or enrollment in hospice in the last 3 days of life (aOR, 0.89 [95% CI, 0.86-0.92]). Conclusions and Relevance: Despite increased emphasis to reduce aggressive EOL care in the past several decades, such care remains common among older persons with metastatic cancer and is slightly more prevalent among NH residents than their community-dwelling counterparts. Multilevel interventions to decrease aggressive EOL care should target the main factors associated with its prevalence, including hospital admissions in the last 30 days of life and in-hospital death.

Caregiver Burden in Distance Caregivers of Patients with Cancer.

Distance caregivers (DCGs), those who live more than an hour away from the care recipient, often play a significant role in patients' care. While much is known about the experience and outcomes of local family caregivers of cancer patients, little is known about the experience and outcomes of distance caregiving upon DCGs. The purpose of this study was to identify the relationships among stressors (patient cancer stage, anxiety, and depression), mediators (DCG emotional support and self-efficacy), and burden in DCGs' of patients with cancer. This study was a descriptive cross-sectional study and involved a secondary data analysis from a randomized clinical trial. The study sample consisted of 314 cancer patient-DCG dyads. The results of this study were: (1) 26.1% of DCGs reported elevated levels of burden; (2) significant negative relationships were found between mediators (DCG emotional support and self-efficacy) and DCG burden; and (3) significant positive relationships were found between patient anxiety, depression, and DCG burden. The prevalence of burden in DCGs, and its related factors, were similar to those of local caregivers of cancer patients, which suggests that interventions to reduce burden in local caregivers could be effective for DCGs as well.

Understanding Factors That Predict Advance Directive Completion.

Background: Advance care planning was designed for the purpose of ensuring that patients receive care at end of life (EOL) that is congruent with their wishes, goals, and values. Despite the evidence of the negative impact of not having advance directives (ADs), only one-third of adults in the United States have written ADs. Determining the patient's goals of care in the setting of metastatic cancer is vital to the delivery of high-quality healthcare. Although much is known about barriers to AD completion (e.g., the uncertainty of the disease process and trajectory, readiness of patient and family to have these discussions, and patient-provider communication barriers), little is known about the role of both patient and caregiver factors influencing AD completion. Objective: This study aimed to understand the relationship between patient and family caregiver demographic characteristics, and processes, and their influence on AD completion. Design: This study was a cross-sectional descriptive correlational design and employed secondary data analysis. The sample was composed of 235 patients with metastatic cancer and their caregivers. Results: A logistic regression analysis was performed to analyze the relationship between predictor variables and the criterion variable of AD completion. Out of the 12 predictor variables, only 2 variables (patient age and race) predicted AD completion. Of those two predictor variables, patient age made a greater and unique contribution to explaining AD completion, compared with patient race. Conclusion: There is a need for further research on cancer patients with historical low AD completion.

Quality and cost outcomes of an integrated supportive care program.

PURPOSE: This article reports findings from a demonstration project funded by the Center for Medicare and Medicaid Innovation (CMMI). The purpose of the project was to test a supportive care program on the outcomes of quality of care and quality of life, and costs in patients with advanced cancer. METHODS: The project was conducted between February 2015 and February 2018, enrolling adult, Medicare or Medicaid beneficiaries with advanced or progressed solid tumor malignancy. A comparative longitudinal comparison of the program with both a concurrent control and an historic control was used to evaluate outcomes. The intervention included routine electronic biopsychosocial screening, early access to specialty palliative care, and nurse care coordination. Quality of life, aggressiveness of care, and healthcare utilization were measured. RESULTS: A total of 1340 people were enrolled, with 71% of the total sample being Caucasian; 41.4% had stage IV cancer, and 20% utilized Medicaid only. Significant differences in the enrolled patients and the comparison group were controlled for through statistical analysis. There were significantly fewer ED visits, unplanned admissions, and fewer total hospitalization days in the intervention group. In the last 30 days of life, hospital and ICU admissions were less and a greater proportion of patients were enrolled in hospice in the intervention group. Quality of life had a marked improvement for enrolled patients. Average cost per member per month was not less in the enrolled group. CONCLUSION: This pragmatic demonstration project confirmed the clinical benefits of an integration of supportive care for patients with advanced cancer, although no reduction in costs was found.

Psychoeducational Interventions for Caregivers of Persons With Multiple Sclerosis: Protocol for a Randomized Trial.

BACKGROUND: Of the approximately 1 million people living with multiple sclerosis in the United States, more than half receive informal, unpaid care or support from family or friends (caregivers). These caregivers report high levels of stress, anxiety, and negative emotions. Few researchers have conducted psychoeducational interventions for these caregivers. OBJECTIVE: This paper presents a protocol for a randomized clinical trial that aims to test the efficacy of two interventions for improving stress, anxiety, depression, and negative emotions for caregivers of persons with multiple sclerosis. METHODS: Participants included any self-identified family or friend caregiver of a person with multiple sclerosis. Data collection began in April 2021 and is expected to continue until November 2021. Participants will be randomized to receive either a website-only or a website-coaching intervention delivered for 6 weeks. Data will be collected at baseline, 6 weeks after baseline (after delivery of intervention), and 6 weeks later. RESULTS: The protocol was approved by the institutional review board of the Case Western Reserve University on January 21, 2021 (protocol 20201484). As of May 2021, 66 participants were enrolled. CONCLUSIONS: Our findings will have implications for identifying the efficacy of two types of interventions developed for caregivers of persons with multiple sclerosis to reduce negative psychological outcomes associated with caregiving. TRIAL REGISTRATION: ClinicalTrials.gov NCT04662008; http://clinicaltrials.gov/ct2/show/NCT04662008. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/30617.

Videoconference Intervention for Distance Caregivers of Patients With Cancer: A Randomized Controlled Trial.

PURPOSE: Approximately 20% of caregivers (CGs) live > 1 hour away from the patient and are considered distance caregivers (DCGs) who often report higher distress and anxiety than local CGs. The purpose of this study was to test the effectiveness of an intervention aimed at reducing anxiety and distress in DCGs of patients with cancer. METHODS: This randomized controlled trial enrolled DCGs of patients with all cancer types who were being seen monthly by oncologists in outpatient clinics. There were three arms of the intervention delivered over a 4-month period: arm 1 (a) received 4 monthly videoconference-tailored coaching sessions with an advanced practice nurse or social worker focused on information and support, (b) participated in patient's appointments with the oncologist via videoconference over the 4-month study period, and (c) had access to a website designed for DCGs. Arm 2 did not receive the coaching sessions but received the other two components, and arm 3 received access to the DCG website only. RESULTS: There were 302 DCGs who provided pre- and postintervention data. There were significant anxiety by group (P = .028 and r = 0.16) and distress by group interactions (P = .014 and r = 0.17). Arm 1 had the greatest percentage of DCGs who demonstrated improvement in anxiety (18.6%) and distress (25.2%). CONCLUSION: Coaching and use of videoconference technology (to join the DCG into the patient-oncologist office visit) were effective in reducing both anxiety and distress for DCGs. These components could be considered for local CGs who-with COVID-19-are unable to accompany the patient to oncologist visits.

Understanding of Health-related Decision-making Terminology Among Cancer Caregivers.

Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions.

Association between strong patient-oncologist agreement regarding goals of care and aggressive care at end-of-life for patients with advanced cancer.

INTRODUCTION: The ability of oncologists to understand patients' goals of care is recognized as a key component of quality care. The purpose of this study is to examine the influence of patient-oncologist agreement regarding goals of care upon aggressive care at end of life (EOL) for patients with advanced cancer. METHODS: Patients with advanced cancer and their oncologists were interviewed at study enrollment and every 3 months thereafter until patient death or end of the study period (15 months). A 100-point visual analogue scale was used to represent goals of care, with quality of life (scored as 0) and survival (scored as 100) as anchors. Strong goal of care agreement for survival was defined as oncologist and patient dyadic goal of care scores that fell between 70 and 100 (100 = highest goal for survival) and for comfort, dyadic goal of care values that fell between 0 and 30 (0 = high goal for comfort). RESULTS: Two hundred and six patients and eleven oncologists provided data. At the last interview prior to death, 23.3% of dyads had strong goal of care agreement for either survival (8.3%) or comfort (15%) and 76.7% had no strong agreement. There was a significant association between aggressive care use and categories of dyadic agreement regarding goals of care (p = 0.024, Cramer's V = 0.15). CONCLUSIONS: A large percentage of oncologists did not understand their patients' EOL goals of care. While aggressive care aligned with categories of dyadic agreement for goals of care, high rates of aggressive care were reported.

Exploration of Decisional Control Preferences in Adolescents and Young Adults with Cancer and Other Complex Medical Conditions.

Purpose: Adolescent and young adults (AYA) with cancer encounter many medical treatment decisions but may have variable desires for involvement in decision-making. This study describes the degree of decisional control AYA patients preferred in complex medical decisions. Methods: A cross-sectional descriptive correlational design evaluated experienced AYA patients' decision-making role preferences using the Control Preference Scale and explored relationships in a proposed model of decision control. Results: Overall, most patients preferred an "active collaborative" role (39%), where the patient prefers to make the final decision with input from the provider, or a "shared decision-making" role (34%), wherein the decision is jointly made between patient and provider. Oncology AYA patients tended to prefer a more passive role than nononcology AYA patients. Time since diagnosis also positively correlated with control preference, with patients preferring a more active level of decisional control as the number of days from diagnosis increased. While no other statistically significant relationships were found between factors put forth in the exploratory model and decision control, there were strong associations between the factors themselves that warrant future study. Conclusion: The findings advance the knowledge of AYA preferences for decision-making involvement, enhancing our ability to identify patients at risk for low health care engagement and explore the consequences of limited or impaired decisional capacity. Future research might examine interventions to promote self-management skills and patient decisional role preferences, fulfilling the need to respect both the desire for decision-making involvement of some patients and the preference to defer to the expertise of providers for others.

Psychometric properties of a single-item visual analog scale measuring goals of care in patients with advanced cancer.

PURPOSE: The purpose of this study was to examine the psychometric properties of a single-item visual analog scale (VAS) to measure goals of care in patients with advanced cancer. METHODS: Data were obtained from 378 patients with diagnoses of advanced lung, gastrointestinal, or pancreatic cancer. Goal of care was measured at baseline and every 3 months until patient death or completion of the 15-month study period. A single-item VAS ranging from 0 (quality of life is all that matters) to 100 (length of life is all that matters) was used to measure patients' goals of care for all study subjects; a subsample of subjects also completed the Quality of Life-Length of Life scale which asked patients to select categories of preferences. Test-retest reliability (intra-class correlation) and construct validity (known-groups, convergent, divergent) were evaluated. RESULTS: At 9 and 12 months, the test-retest reliability for patients with stable symptoms (n = 107) was established with the ICC(1,3) = 0.81, p < .001. Known-groups (r = 0.99, p < .001), convergent (r = 0.78, p < .001), and divergent (r = .06, p = 0.24) validity all demonstrated evidence of good construct validity. CONCLUSIONS: Preliminary psychometric testing for a single-item VAS that measures goals of care in a sample of patients with advanced cancer met standard requirements for reliability and validity. While further testing with a larger sample size is recommended, the tool's use in the clinical area to assess cancer patients' goals of care is appropriate. Such a tool could facilitate goals of care discussions in the clinical area.

Family Surrogate Decision-making in Chronic Critical Illness: A Qualitative Analysis.

BACKGROUND: Caring for an adult with chronic critical illness is a difficult undertaking. Family surrogates are tasked with decision-making on behalf of their loved one, particularly during acute-on-chronic illness episodes. Critical care nurses are well positioned and well qualified to facilitate this process. OBJECTIVES: To explore family surrogate decision-making for people with chronic critical illness. METHODS: In this qualitative study, interviews were conducted with family surrogates (n = 7) as part of a larger descriptive, longitudinal study (N = 264). Content analyses were guided by Miles and colleagues' methods of data analysis. RESULTS: Family surrogates serving as decision makers for a spouse or another adult loved one were mostly female. Although decision-making was often described as "frustrating," most surrogates reported that they were "comfortable" with this role. Major decision-making themes were "communication as key in decision-making," "impact of past experiences," and "difficulties and coping." Advice from family and friends, health care providers (such as nurses), and faith or spirituality were significant resources for coping with decision-making challenges. CONCLUSIONS: Results support recent recommendations of the National Academy of Medicine that endorsed shared decision-making. Data also support development of more effective team communication and decision support strategies, particularly addressing consistency and continuity. Critical care nurses can use their expertise to positively influence these outcomes.

Closer: A videoconference intervention for distance caregivers of cancer patients.

Distance caregivers (DCGs) represent a growing demographic. The emotional burden of caregiving for a family member with cancer is amplified by the logistical challenges of providing support from afar. DCGs feel higher levels of distress, anxiety, and depression compared with local caregivers. Videoconference technology may alleviate both the emotional and practical burdens faced by DCGs. This is an ongoing randomized controlled trial in 32 outpatient ambulatory clinics at a large, urban, comprehensive cancer center. To date, 332 patient-DCG dyads have been enrolled. DCGs must have internet access and have been identified by the patient as a source of support. The intervention period is 4 months. DCGs are randomized to one of three arms: DCGs in Arm 1 receive four coaching sessions with an advanced practice nurse or social worker and four videoconference appointments during the oncologist-patient office visit. DCGs in Arm 2 participate in four videoconference appointments with the oncologist and patient, and Arm 3 is the control group, which receives access to information through a website. Primary outcome variables are DCG distress, anxiety, depression, burden, self-efficacy, and emotional support. These data are collected electronically at baseline, 4 months, and 6 months. Patient distress, anxiety, and depression are also assessed at these same intervals using brief in-person interviews. The change in each of the DCG outcomes over time will be examined by a repeated measures analysis of covariance.

Videoconferencing Empowers Distance Caregivers to Be More Involved in Care.

Distance caregiving is a relatively new phenomenon associated with today's increasingly mobile society. Distance caregivers (DCGs)-those unable to attend a family member's oncology appointments due to distance-often miss out on supportive services offered to the patient and local family and must rely on secondhand information to keep track of the patient's plan of care. The Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland, Ohio, is testing a program to address the needs of this unique demographic by incorporating videoconferencing into patient visits.