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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.

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.

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.

ImportanceNearly 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.ObjectiveTo compare markers of aggressive EOL care between older adults with metastatic cancer who are NH residents and their community-dwelling counterparts.Design, Setting, and ParticipantsThis 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.ExposuresNursing home status.Main Outcomes and MeasuresMarkers 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.ResultsThe 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 RelevanceDespite 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.

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.

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.

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 to achieve the “triple aim” of improving quality of care of patients, enhance patient experience, and reduce 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 health care utilization were measured.Results: 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. Almost all measures reflected a lower aggressiveness of care for enrolled patients. Of patients who died, a significantly greater portion of enrolled patients were enrolled in hospice prior to death. 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 provided valuable insights which can position organizations for successful integration of supportive care under value-based reimbursement.

BACKGROUND Of the ~1 million persons in the US living with multiple sclerosis (MS), over half receive informal, unpaid care or support from family or friends (caregivers). Despite reports of high levels of stress, anxiety, and negative emotions, only three psycho-educational interventions for these caregivers have been tested. None of these interventions have included web-delivered tailored information combined with tailored coaching with the aim of improving emotional and psychological outcomes for caregivers of persons with MS (PwMS). OBJECTIVE Objectives: This paper presents a protocol for a randomized controlled trial that aims to test the efficacy of two interventions for improving stress, anxiety, depression and negative emotions for PwMS. METHODS Participants will include any self-identified family/friend caregiver of a PwMS. Data will be collected from April 2021 until November. Participants are randomized to receive either a website-only or a website-coaching intervention which is delivered over a 6 week period. Data are collected online via REDCap at baseline, 6 weeks after baseline (after delivery of intervention) and 6 weeks later. RESULTS The protocol was approved by the Case Western Reserve University Institutional Review Board (IRB) on January 21, 2021 (Protocol number 20201484). As of May 2021, we have enrolled 66 participants. CONCLUSIONS Our findings will have implications for identifying the efficacy of two types of interventions developed for caregivers of PwMS in reducing negative psychological outcomes associated with caregiving. CLINICALTRIAL Trial Registration: Registered with ClinicalTrials.gov, registration number: NCT04662008.

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.

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.

Introduction: Cystic fibrosis (CF) is an autosomal recessive disease that affects many organ systems, most notably the pulmonary and gastrointestinal systems. Through genome-wide association studies, multiple genetic regions modifying CF-related pulmonary and gastrointestinal symptoms have been identified, but translation of these findings to clinical benefit remains elusive. Symptom variation in CF patients has been associated with changes in health-related quality of life (HRQOL), but the relationship between CF symptom-modifying genetic loci and HRQOL has not been explored. The purpose of this study was to determine whether two previously identified genetic modifiers of CF-related pathology also modify the subscales of HRQOL. Methods: HRQOL and genotype data were obtained and analyzed. Linear regressions were used to examine the amount of variance in HRQOL subscales that could be explained by genotype for each modifier locus. Results: A significant regression equation was found between genotype for rs5952223, a variant near chrXq22-q23, and emotional functioning in a sample of 129 CF patients. Discussion: These data suggest that genotype for this single-nucleotide polymorphism is associated with emotional functioning in CF patients and highlight this genetic region as a potential therapeutic target, irrespective of CF transmembrane conductance regulator genotype.

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 sub-sample 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

Background: Shared decision-making at end of life (EOL) requires discussions about goals of care and prioritization of length of life compared with quality of life. The purpose of the present study was to describe patient and oncologist discordance with respect to goals of care and to explore possible predictors of discordance. Methods: Patients with metastatic cancer and their oncologists completed an interview at study enrolment and every 3 months thereafter until the death of the patient or the end of the study period (15 months). All interviewees used a 100-point visual analog scale to represent their current goals of care, with quality of life (scored as 0) and survival (scored as 100) serving as anchors. Discordance was defined as an absolute difference between patient and oncologist goals of care of 40 points or more. Results: The study enrolled 378 patients and 11 oncologists. At baseline, 24% discordance was observed, and for patients who survived, discordance was 24% at their last interview. For patients who died, discordance was 28% at the last interview before death, with discordance having been 70% at enrolment. Dissatisfaction with EOL care was reported by 23% of the caregivers for patients with discordance at baseline and by 8% of the caregivers for patients who had no discordance (p = 0.049; φ = 0.20). Conclusions: The data indicate the presence of significant ongoing oncologist–patient discordance with respect to goals of care. Early use of a simple visual analog scale to assess goals of care can inform the oncologist about the patient’s goals and lead to delivery of care that is aligned with patient goals.

PURPOSE We aimed to (1) describe the amount of treatment burden experienced in the primary care population diagnosed with chronic conditions and (2) examine if cumulative and task-specific treatment burden were predictors of medication, exercise, and dietary adherence in patients diagnosed with chronic conditions. DESIGN We conducted a prospective, descriptive, cross-sectional study. METHODS We enrolled 149 men and women from a single primary care clinic. Participants completed self-report surveys with data collected between September 2019 and December 2019. Our primary statistical analyses consisted of multivariate regression modeling. RESULTS The sample experience a moderate amount of treatment burden (M = 38.22; SD = 31.83). We found strong, negative correlations between both cumulative and task-specific burden in relation to medication, exercise, and dietary adherence (p

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 70–100 (100=highest goal for survival) and for comfort, dyadic goal of care values that fell between 0–30 (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=.024, Cramer’s V=.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.

Aims: The aim of this study was to describe similarities and differences over time in expectations held by family members of long-term critically ill patients and the nurses caring for those patients. Materials: In addition to demographic data, outcome expectations of family decision makers and ICU nurses were obtained by asking each participant to indicate expectations for the patient, 6 months in the future, for survival, cognition, and functional status. Families also were asked what kind of information was most important in understanding the patient’s condition and what was most important in making decisions. Methods: This was a descriptive correlational analysis. Nurses and family members were surveyed on the 3rd–5th day of the patient’s stay, and every 5 days until discharge or death. Correlations between nurse and family predictions were examined using Pearson R. Repeated measures analysis of variance (RMANOVA) was used to explore the relationship between the family member’s rating of what was most important in the care of the patient (survival vs. quality of life) and that individual’s prediction of the likelihood of survival, over time. Results: Family members consistently predicted better outcomes than nurses, with >80% of families predicting a high likelihood of survival, while

The purpose of this study was to describe the relationship between patient physical and emotional status and caregiver mood state for patients with advanced cancer. Data were collected from 299 cancer patients and their caregivers from a cancer center. We used a longitudinal design and collected data through interviews. The relationships between patient and caregiver emotional states over time were moderate and statistically significant at all three points in time ( p values = .012-.0001). Patient physical and emotional status predicted caregiver mood state at all points in time (βs = −.22 to −.25) and caregiver mood state at baseline predicted patient emotional status at 3 months (β = −.16, p = .013). Relationships between patient emotional status and caregiver mood state were moderately strong. Addressing the emotional needs of both patients and caregivers has the potential to yield improved emotional outcomes for both over time.

e24198 Background: Distance Caregivers (DCGs) – caregivers living > 1 hour away from the patient – face unique challenges regarding frustration at receiving second hand information about the patient’s condition and uncertainty regarding how to assist the patient. Videoconferencing allows DCGs to connect for the patient’s oncology appointments while avoiding costly travel expenses and time away from work and family. Methods: 441 patient-DCG dyads enrolled in a randomized controlled trial at a large, urban comprehensive cancer center. Patients of all cancer types were eligible if they had monthly oncologist appointments. DCGs were randomized to one of three arms. Arm 1 – received four monthly videoconference coaching sessions with a nurse or social worker, connected for the patient’s oncology appointments, and had access to a website designed for DCGs; Arm 2 – connected for the patient’s oncology appointments over four months and had access to the DCG website; Arm 3 – received access to the DCG website. To evaluate the impact on clinical practice, outpatient oncology appointments were timed. Helpfulness of the intervention was rated from 0-10 with higher scores representing greater amounts of helpfulness. Descriptive statistics, ANOVA, and Pearson’s correlation were conducted to describe features, determine group differences, and identify relationships among variables. Results: Mean helpfulness ratings were 9.06 (patients), 9.30 (local caregivers), 9.08 (DCGs), and 7.98 (oncologists). Average appointment times (in minutes) for Arm 1, Arm 2, and Arm 3 were 19.63 (SD = 7.69), 21.34 (SD = 9.95), and 17.80 (SD = 10.20), respectively. Arm 2 had significantly longer appointments than Arm 3 (mean difference: 3.54, p = .025). No relationships were found between length of appointment time and helpfulness ratings. Conclusions: The videoconferencing intervention was well-received by oncologists, patients, and DCGs. Appointments were longest in Arm 2, followed by Arm 1, then Arm 3 (control). It makes sense that connecting an additional person lengthened the meetings, but it was noteworthy that Arm 2 was longest. DCGs in Arm 2 (who did not have the coaching) likely had more unanswered questions that were discussed with the oncologist compared to Arm 1 DCGs. Cancer centers should consider this when implementing videoconferencing technology. Clinical trial information: NCT02666183 .

Objective: The study objective was to determine concordance between patients and family caregivers’ preferences for quality or length of life over time. Background: Patients with advanced cancer are confronted with difficult decisions throughout their course of treatment and at end of life (EOL). These decisions can be influenced by their family caregivers’ preferences for the patient’s cancer treatment. Methods: Using a longitudinal, descriptive study design from an on-going study, data were collected on an adult sample of patients with advanced stage GI or lung cancers and their family caregivers (n=237). Using a one item visual analog scale (0-100 with higher number indicating a preference for length of life over quality of life), patients and family caregivers were asked “regarding your/your loved one’s care, what is most important to you right now?” Data were collected every 3 months until 15 months or patient’s death. Results: At enrollment, the preference scores between patients (48.5) and family caregivers (42.6) were closely aligned. At the last assessment prior to death, these scores diverged with the caregivers favoring goals associated with quality of life over length of life (p=.02). Discussion: Patients and family caregivers have differing preferences and these goals of care can change over time. Attention to these differences could be used to guide conversations between patients and family caregivers regarding preferences at EOL. Keywords: Goals of Care, Advanced Cancer, Caregiver

The number of families caring for older adults continues to increase. Caregivers are challenged to address personal healthcare needs, their desires for their loved one, as well as their loved one’s wishes for themselves, while struggling to interpret the language of healthcare. The purpose of this study was to examine understanding of quality-of-life, end-of-life, and decision-making terminology among caregivers of older adults with advanced cancer. Interviews were conducted with nine caregivers of older adults (≥ age 55) with advanced cancer, a sub-sample from a longitudinal, descriptive, correlational study (NRO14856). Interviews were audio recorded and transcribed. Content analyses were conducted and guided by Miles and Huberman’s analysis methods. Most caregivers were female caring for a spouse. Healthcare decision making most often involved the patient and caregiver with heavy reliance on guidance from oncologists and nurses. Most caregivers were familiar with the term ‘hospice,’ but, the term ‘palliative care’ was either unfamiliar, or the definition was not known. Caregivers expressed emotions and discussed anxiety related to decision making as significant. Most caregivers described their own quality of life, as well as their loved one’s, as good or high. The 2016 National Institutes of Sciences, Engineering and Medicine report entitled Families Caring for an Aging America highlights the importance of engaging family caregivers in decision making. This study provides exemplars of shared decision making between the patient, caregiver, and healthcare providers. Creative solutions are needed for improvements in palliative care education to assist older adults and caregivers in making more informed healthcare decisions.

The purpose of this study was to determine the accuracy and concordance between physicians (MDs) and family surrogate decision makers (FSDMs) in predicting 3 month post-hospital patient mortality and concordance in identifying patient goals of care. A prospective cohort study was conducted in 3 intensive care units (ICUs). Two-hundred and sixty-four FSDMs and 54 attending MDs of patients who had resided in the ICU for3 days were enrolled in the study. Expectation for mortality was measured dichotomously and goals of care were measured using a continuous visual analog scale. A value of 50 represented equal weight placed on goals of survival and QOL. Both MDs and FSDMs had mortality predictions that were lower than actual mortality. For MDs and FSDMs, their mortality predictions were most accurate at study enrollment. Discordance between MD and FSDM goals of care ranged from 36.4% at enrollment to 55.4% 15 days later (p=0.003). Our findings of optimistic prognosis for survival are consistent with the work of others. Our high rate of discordance regarding goals of care provided support for the need to establish standard processes to assure that values of patients and families are solicited and incorporated into treatment discussions for long-stay ICU patients.

Accurately predicting survivorship of patients in the intensive care unit is known to be difficult. Previous research has shown that nurses are more likely to recognize futile medical care than other disciplines. The purpose of this study was to describe the accuracy of nurse's predictions for survival of patients who are chronically critically ill (CCI).Using a secondary data analysis from a longitudinal, descriptive study, we evaluated nurses' predictions for survival at admission and until ICU discharge or patient death.Nurses were able to more accurately predict survival of CCI patients than death and prognostication appeared to improve with prolonged ICU stays.This is the first longitudinal study that focused on nurse prognostication in a chronically critically ill patient population. Future research should explore the relationship between ICU nurse characteristics and the accuracy of survival predictions.

Background Participation by a critical care nurse in an unsuccessful resuscitation can create a unique heightened level of psychological stress referred to as postcode stress, activation of coping behaviors, and symptoms of posttraumatic stress disorder (PTSD). Objectives To explore the relationships among postcode stress, coping behaviors, and PTSD symptom severity in critical care nurses after experiencing unsuccessful cardiopulmonary resuscitations and to see whether institutional support attenuates these repeated psychological traumas. Methods A national sample of 490 critical care nurses was recruited from the American Association of Critical-Care Nurses’ eNewsline and social media. Participants completed the Post-Code Stress Scale, the Brief COPE (abbreviated), and the Impact of Event Scale–Revised, which were administered through an online survey. Results Postcode stress and PTSD symptom severity were weakly associated (r = 0.20, P = .01). No significant associations between coping behaviors and postcode stress were found. Four coping behaviors (denial, self-distraction, self-blame, and behavioral disengagement) were significant predictors of PTSD symptom severity. Severity of postcode stress and PTSD symptoms varied with the availability of institutional support. Conclusions Critical care nurses show moderate levels of postcode stress and PTSD symptoms when asked to recall an unsuccessful resuscitation and the coping behaviors used. Identifying the critical care nurses most at risk for PTSD will inform the development of interventional research to promote critical care nurses’ psychological well-being and reduce their attrition from the profession.

Cancer is considered a family disease as the caregivers (CG’s) role extends beyond providing care as they can also help facilitate treatment decisions. While much has been reported in the literature about patient (PT) goals of care (GoC), little is known about discordance between PT and CG GoC and the impact of PT age. The variables of interest were PT and CG identified GoC using a 100-point visual analog scale (VAS) with anchors of quality of life (0) and survival (100). Discordance was defined as a > 40 point difference on the VAS. The GoC data reported here were those obtained at enrollment and prior to subject’s death. A sample of 235 PTs and CGs of PTs diagnosed with advanced cancers were included in the study. Mean age for the PTs was 64.7 (SD=10.5, range =21-88) with 54% being > 65. At enrollment, 28.7% of the PT-CG pairs of those PTs 65 years (X2 (1)=1.06, p=.304). At death, 61.8% (X2 (1)=31.04

Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient's condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members' well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.

Professionalism is paramount to the formation and functioning of new graduate critical care nurses. In this project, a sample of 110 new graduate nurses used a descriptive self-report electronic survey with Hall's Professionalism Inventory Scale. A great percentage of these new graduate critical care nurse fellows with high professionalism scores may be related to their participation in the Critical Care Nurse Fellowship orientation program. Perhaps, Nursing Professional Development specialists should incorporate classes on professional advancement planning for new graduate nurses.

Objective:Little is known about relationships between patient spiritual well-being and caregiver outcomes for those with advanced cancer. We were interested in examining the relationship between patient physical quality of life (QOL) and caregiver depression and to also evaluate whether patient spiritual well-being (SWB) played a mediating role in this relationship.Method:This is a prospective longitudinal study that was conducted in the outpatient clinics at a university-affiliated comprehensive cancer center. 226 patients with Stage III or IV cancer (lung, GI, GYN) and their primary caregivers were interviewed upon enrollment into the study and three months later. Measures of spirituality, health-related quality of life, and physical functioning were included in the interviews.Results:Key findings were that the relationship between patient physical QOL and caregiver depression was inverse and moderate (β = −0.24, p = 0.004) and that patient SWB (meaning/peace) played a significant (p = 0.02) and medium-size role (β = −0.31) in mediating the relationship between patient physical QOL and caregiver depression. The nature of these relationships was stable over time.Significance of results:Patients' spirituality is central to their coping and adjusting to cancer. It is this aspect of patient overall quality of life that mediates the relationship to caregiver well-being. The most potent intervention for caregiver depression may be attending to patient spiritual distress.

Contemporary forces, including the growing nursing shortage, the aging population, and the emphasis on patient safety, are increasing the pressure on healthcare facilities to use information systems to achieve better outcomes. Use of information systems improves nurses' ability to make decisions in a timely manner; however, nurses are still reluctant about or avoiding using information systems in their daily work. The purpose of this study was to explore the relationships among age, nursing education, computer experience, user involvement in implementation, nursing management support to use information systems, nurses' information system use, and information system outcomes (benefits and satisfaction). The study used an input-process-outcome framework, a descriptive correlational design, and a mailed survey with a random sample of staff nurses. Computer experience, user involvement, and nursing management support were found to significantly explain information system use. In addition, information system use was found to significantly explain nurses' perception of the benefits of using information systems and their satisfaction with using information systems. These results assist nursing administrators and leaders to change and/or restructure the appropriate work environment to enhance nurses' information system use and increase their satisfaction, thereby improving patient outcomes.

Background Formal family meetings have been recommended as a useful approach to assist in goal setting, facilitate decision making, and reduce use of ineffective resources in the ICU. We examined patient outcomes before and after implementation of an intensive communication system (ICS) to test the effect of regular, structured formal family meetings on patient outcomes among long-stay ICU patients. Methods One hundred thirty-five patients receiving usual care and communication were enrolled as the control group, followed by enrollment of intervention patients (n = 346), from five ICUs. The ICS included a family meeting within 5 days of ICU admission and weekly thereafter. Each meeting discussed medical update, values and preferences, and goals of care; treatment plan; and milestones for judging effectiveness of treatment. Results Using multivariate analysis, there were no significant differences between control and intervention patients in length of stay (LOS), the primary end point. Similarly, there were no significant differences in indicators of aggressiveness of care or treatment limitation decisions (ICU mortality, LOS, duration of ventilation, treatment limitation orders, or use of tracheostomy or percutaneous gastrostomy). Exploratory analysis suggested that in the medical ICUs, the intervention was associated with a lower prevalence of tracheostomy among patients who died or had do-not-attempt-resuscitation orders in place. Conclusions The negative findings of the main analysis, in combination with preliminary evidence of differences among types of unit, suggest that further examination of the influence of patient, family, and unit characteristics on the effects of a system of regular family meetings may be warranted. Despite the lack of influence on patient outcomes, structured family meetings may be an effective approach to meeting information and support needs. Trial registry ClinicalTrials.gov ; No.: NCT01057238 ; URL: www.clinicaltrials.gov

The aim of this study was to examine the role of cognitive appraisal in predicting psychosocial adjustment during the postradiation treatment transition. A predictive correlational design was used in a convenience sample of 80 patients with breast, lung, and prostate cancer who were receiving radiation therapy. Two weeks prior to completion of treatment, participants completed instruments to measure symptom distress, uncertainty, cognitive appraisal, social support, and self-efficacy for coping. The Psychosocial Adjustment to Illness Scale was administered 1 month after therapy. Adjustment was significantly correlated with all independent variables, age, and comorbidity. Young age and high amounts of threat appraisal, harm/loss appraisal, uncertainty, and symptom distress were significantly associated with poor adjustment. The model predicted 52% of the variability in adjustment. Cognitive appraisal was not a significant explanatory variable for adjustment when controlling for uncertainty, cancer stage, age, and symptom distress. Symptom distress was the only significant predictor of adjustment.

10026Background: Aggressiveness of care at EOL should be aligned with the patient’s (Pt) goals of care that ideally are established in collaboration with the oncologist (MD). This is particularly i...

10007Background: Providing EOL care that is in accordance with Pt goals of care is an essential component of quality care. Because discordance between the attitudes of Pt and physician can undermin...

Background Understanding the relationships between social and psychological determinants of health-related quality of life (HRQOL) is a critical step in developing effective screening tools and targeted interventions for psychosocial care. Objective The purpose of this study was to examine the relationship between dispositional optimism and HRQOL in newly diagnosed adult cancer patients. Methods A cross-sectional, predictive correlational design was used. The sample consisted of 163 patients with mixed diagnoses and stages who were within 180 days since diagnosis and had completed a battery of psychosocial measures upon enrollment into a psychosocial data registry during their first outpatient visit or treatment. Hierarchical multiple regression analyses were conducted to determine predictors of HRQOL. Results Optimism was significantly correlated with spiritual well-being, anxiety, depression, and HRQOL. Optimism was not a significant predictor of HRQOL at initial diagnosis and treatment when age, scores on functional status, spiritual well-being, depression, and anxiety were entered into the regression equation. Conclusion Dispositional optimism is not a primary factor in HRQOL at initial diagnosis and treatment. Further exploration is needed to determine if optimism exerts a greater influence on HRQOL at another point along the cancer trajectory and if there is overlap between the constructs of optimism and spirituality. Implications for practice Although systematic screening for dispositional optimism is not recommended, patients who display characteristics associated with low optimism require further assessment. Also, patients with poor functional status, young age, low levels of spirituality, and high levels of depression may be vulnerable for poor HRQOL.

The uncertain trajectory of chronic critical illness exposes the patient’s family to heightened levels of psychological distress. Symptoms of psychological distress affect more than half of family members exposed to the patient’s chronic critical illness. Although symptoms often dissipate over time, a significant proportion of family members will remain at moderate to high risk for psychological distress well after the patient’s death or discharge from the intensive care unit. Family members of chronically critically ill patients are often involved in the decision making for the patients. Irrational or uninformed decision making can occur when family members experience high levels of psychological distress. Attention to the psychological needs and provision of support to family members enhance the formulation of treatment decisions consistent with the patient’s preferences and mitigate unnecessary resource use. In this article, the impact of chronic critical illness on family members’ risk for depression, anxiety, and posttraumatic stress disorder is described and a review of evidence-based strategies to support the psychological needs of family members coping with a patient’s chronic critical illness is provided.

Advance directives (ADs) refer to a category of documents that enable individuals to state their preferences for future healthcare decisions in the event of incapacitation. The purpose of the study was to examine differences in psychosocial characteristics and AD completion rates in persons newly diagnosed with cancer. This sample comes from data collected for a psychosocial registry for patients with cancer. The following psychosocial data were collected: Functional Assessment of Cancer Therapy-General, Profile of Mood States-short form, and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale. The sample included 312 persons who had been diagnosed with cancer within the previous 5 months. There were no statistically significant differences between completion of an AD and the measured psychosocial characteristics at baseline (mean, 4.2 months); however, at 3 months, patients who reported higher quality of life (Functional Assessment of Cancer Therapy-General) were associated with lower AD completion rates and persons with greater mood disturbances had higher rates of AD completion. Our data suggest the need to develop strategies that would facilitate discussion of ADs for patients entering the cancer care continuum.

Purpose Chronically critically ill (CCI) patients use a disproportionate amount of resources, yet little research has examined outcomes for older CCI patients. The purpose of this study was to compare outcomes (mortality, disposition, posthospital resource use) between older (≥65 years) and middle-aged (45-64 years) patients who require more than 96 hours of mechanical ventilation while in the intensive care unit. Methods Data from 2 prospective studies were combined for the present examination. In-hospital as well as posthospital discharge data were obtained via chart abstraction and interviews. Results One thousand one hundred twenty-one subjects were enrolled; 62.4% (n = 700) were older. Older subjects had a 1.3 greater risk for overall mortality (from admission to 4 months posthospital discharge) than middle-aged subjects. The Acute Physiology Score (odds ratio [OR], 1.009), presence of diabetes (OR, 2.37), mechanical ventilation at discharge (OR, 3.17), and being older (OR, 2.20) were statistically significant predictors of death at 4 months postdischarge. Older subjects had significantly higher charges for home care services, although they spent less time at home (mean, 22.1 days) than middle-aged subjects (mean, 31.3 days) (P = .03). Conclusion Older subjects were at higher risk of overall mortality and used, on average, more postdischarge services per patient when compared with middle-aged subjects.

Health care is rapidly increasing the types of information systems (IS) that are used to manage patient care. The extent to which nurses move to a paperless system will be contingent on their beliefs about IS. The study explores the moderating and mediating effects of nurses' beliefs about IS use on the relationship between IS use and perceived benefits and satisfaction. A descriptive, correlational, cross-sectional design is used, and a random sample of 201 staff nurses working in hospitals was surveyed via a mail questionnaire. Nurses' beliefs have mediating effects on the relationship between nurses' IS use and their perceptions of IS benefits and satisfaction. The results can guide nurse administrators to improve nurses' perceptions about IS by using such methods as providing a training program to increase nurses' computer self-efficacy. Enhancing nurses' use of IS and their perceptions of IS benefits can ultimately improve patient safety and outcomes.

The continued increase in healthcare costs in the United States has been well documented1,2; healthcare costs exceed $1 trillion.3 Reasons cited for the rise in costs include the increasing number of elderly persons, increases in severity of illness, and the increasing number of patients who require prolonged mechanical ventilation and expensive stays in intensive care units (ICUs).1,4,5 Patients who require prolonged mechanical ventilation and expensive ICU stays are generally more than 60 years old, have more than a single comorbid condition (eg, coronary artery disease, chronic pulmonary disease), and have high in-hospital mortality rates (35%-50%).6-8 These patients have a high cost of care as well as poor outcomes and have been called “chronically critically ill.”8-10 Poor outcomes include poor quality of life, high mortality, need for individualized rehabilitation, high readmission rates, and high cost of care.8-10 Disease management programs (DMPs) improve patients’ outcomes while reducing the cost of care for chronically ill patients11,12 and patients with congestive heart failure,13 yet only a few reports of large randomized trials of the effectiveness of such programs have been published, and even fewer have had health-related quality of life (HRQOL) as a key outcome measure.14-16 HRQOL is an important outcome to include in studies on the effect of DMPs because patients often place a higher value on quality of life than on survival.17 Evaluating the effect of a disease management program on quality of life is important because patients often place a higher value on quality of life than on survival. Chronically critically ill patients present challenges for the healthcare teams who assume responsibility for their care after discharge from the hospital and thus may benefit from a DMP. Staff and primary care physicians at extended care facilities are faced with the challenge of quickly gaining familiarity with a patient’s history and course of illness, coordinating the continuing input from multiple healthcare providers, and assuming responsibility for managing these complex cases. To date, the effect of using a DMP intervention focused on chronically critically ill patients after they leave the hospital has not been evaluated. The purpose of our study was to evaluate how adding a DMP to the usual care system affected outcomes after discharge (mortality, HRQOL, resource use) in chronically critically ill patients 2 months after discharge. The theoretical basis of the study was an application of the “structure-process-outcomes” model of Donabedian,18 which posits that organizations and their effectiveness can be understood through an analysis of appropriate structure (model of care, DMP), which affects processes of work (eg, discharge planning, coordination among providers, use of protocols) and leads to measurable outcomes (resource use, patients’ outcomes, caregivers’ outcomes).

Although it would be ideal that all patients have the presence of an advance directive documented in their medical chart, it is especially important in the chronically critically ill, a patient population with an in-hospital mortality rate of 40%. How has the documentation of advance directives in the medical chart of chronically critically ill patients changed from 1997 to 2003? This article describes the patient characteristics and patterns of death in chronically critically ill patients, with or without an advance directive, enrolled in 2 consecutive studies.