Strong to moderate evidence supports interventions to improve important aspects of end-of-life care. Future research should quantify these effects and address the generalizability of insights across the conditions and settings of the last part of life. Many critical issues lack high-quality evidence.

Purpose/Objectives Describe burden, skills preparedness, and QOL for caregivers of patients with NSCLC, and describe how findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care. Design Descriptive, longitudinal. Setting One NCI-designated comprehensive cancer center in Southern California. Sample A total of 163 family members or friends who were 18 years or older and identified by patients as being the caregiver were accrued. Methods All eligible caregivers were approached by advance practice nurses (APNs) during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated measures Analysis of Variance (ANOVA) was used to test for change over time for all predictor and outcome variables. Main Research Variables Caregiver burden, skills preparedness, psychological distress, and QOL. Findings Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline, but decreased over time. Psychological distress was moderate but increased over time. Overall QOL was moderate at baseline, and decreased significantly over time. Psychological well-being had the worst QOL score. Conclusions Caregivers experienced high levels of caregiver burden, and report deteriorations in psychological well-being and overall QOL over time. Implications for Nursing Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory.

Objective. To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies. Data Sources. English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care. Study Design. Systematic review of end-of-life care literature. Extraction Methods. Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies. Principal Findings. Of 24,423 citations, we extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, we identified an additional 64 measures of the end-of-life experience. The most robust measures were in the areas of symptoms, quality of life, and satisfaction; significant gaps existed in continuity of care, advance care planning, spirituality, and caregiver well-being. We also reviewed 84 intervention studies in which 135 patientcentered outcomes were assessed by 97 separate measures. Of these, 80 were used only once and only eight measures were used in more than two studies. Conclusions. In general, most measures have not undergone rigorous development and testing. Measure development in end-of-life care should focus on areas with identified gaps, and testing should be done to facilitate comparability across the care settings, populations, and clinical conditions. Intervention research should use robust measures that adhere to these standards.Key Words. Quality of health care, outcome and process assessment (health care), end-of-life care, measures, dying For the vast majority of Americans, the end of life includes a prolonged experience of chronic progressive disease, often associated with uncertainty, pain, suffering, and cost (Hogan et al.

Background Individuals with ostomies experience extensive changes in health-related quality of life (HRQOL) and daily routine. Patients and families are typically forced to use trial-and-error to improve self-management. Methods This is a longitudinal one-group design pilot study of a five-session ostomy self-care curriculum based on the Chronic Care Model to improve HRQOL and self-management for cancer survivors with ostomies. Participants were surveyed to evaluate each session. Multiple instruments were administered to examine outcomes at baseline, post-intervention, and at six-month follow-up (Patient Activation Measure, Self-Efficacy, Hospital Anxiety and Depression Scale, Ways of Coping, Group Health Association of America Satisfaction with Ostomy Care Survey, and the City of Hope Quality of Life - Ostomy). Changes from pre- to post-intervention and pre-intervention to follow-up were evaluated with paired t-tests. Text responses were coded and evaluated for important themes and recommendations. Results Thirty-eight subjects participated in the study. Most had a history of rectal cancer (60.5%) or bladder cancer (28.9%). Participants rated the overall program high (4.4–4.8 on 5-point scale). Text feedback indicated that participants enjoyed the group forums, wanted more participants, and more hands-on training. Scores on multiple surveys were shown to be improved and sustained, including Patient Activation (p=0.0004), Self-Efficacy (p=0.006), Total HRQOL (p=0.01), physical well-being (p=0.005), and social well-being (p=0.002). Survivor anxiety was significantly reduced by follow-up (p=0.047). Conclusions This self-management ostomy program can help cancer survivors with ostomies adapt to their stoma. Initiating this program in the community setting would be beneficial to many cancer survivors.

Background Family caregivers (FCGs) experience significant deteriorations in quality of life while caring for lung cancer patients. This study tested the effectiveness of an interdisciplinary palliative care intervention for FCGs of patients diagnosed with stage I–IV non-small cell lung cancer (NSCLC). Methods FCGs who were identified by patients as the primary caregiver were enrolled in a prospective, quasi-experimental study whereby the usual care group was accrued first followed by the intervention group. FCGs in the intervention group were presented at interdisciplinary care meetings, and they also received four educational sessions organized in the physical, psychological, social, and spiritual domains. The sessions included self-care plans to support the FCG’s own needs. Caregiver burden, caregiving skills preparedness, psychological distress, and FCG QOL were assessed at baseline and 12 weeks using validated measures. Results A total of 366 FCGs were included in the primary analysis. FCGs who received the interdisciplinary palliative care intervention had significantly better scores for social well-being (5.84 vs. 6.86; p<.001) and lower psychological distress (4.61 vs. 4.20; p=.010) at 12 weeks compared to FCGs in the usual care group. FCGs in the intervention group had significantly less caregiver burden compared to FCGs in the usual care group (p=.008). Conclusions An interdisciplinary approach to palliative care in lung cancer resulted in statistically significant improvements in the FCG’s social well-being, psychological distress, and less caregiver burden.

Context Palliative care, including symptom management and attention to quality of life (QOL) concerns, should be addressed throughout the trajectory of a serious illness such as lung cancer. Objectives This study tested the effectiveness of an interdisciplinary palliative care intervention for patients with stage I–IV non-small cell lung cancer (NSCLC). Methods Patients undergoing treatments for NSCLC were enrolled in a prospective, quasi-experimental study whereby the usual care group was accrued first followed by the intervention group. Patients in the intervention group were presented at interdisciplinary care meetings, and appropriate supportive care referrals were made. They also received four educational sessions. In both groups, QOL, symptoms, and psychological distress were assessed at baseline and 12 weeks using surveys which included the Functional Assessment of Cancer Therapy-Lung and the lung cancer subscale, the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being, and the Distress Thermometer. Results A total of 491 patients were included in the primary analysis. Patients who received the intervention had significantly better scores for QOL (109.1 vs. 101.4; P<0.001), symptoms (25.8 vs. 23.9; P<0.001) spiritual well-being (38.1 vs. 36.2; P=0.001), and lower psychological distress (2.2 vs. 3.3; P<0.001) at 12 weeks, after controlling for baseline scores, compared to patients in the usual care group. Patients in the intervention group also had significantly higher numbers of completed advance care directives (44% vs. 9%; P<0.001), and overall supportive care referrals (61% vs. 28%; P<0.001). The benefits were seen primarily in the earlier stage patients versus those with stage IV disease. Conclusion Interdisciplinary palliative care in the ambulatory care setting resulted in significant improvements in QOL, symptoms, and distress for NSCLC patients.

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Objective Family caregivers (FCGs) caring for loved ones with lung cancer are at risk for psychological distress and impaired quality of life (QOL). This study explores the relationship between FCGs’ distress, per the Distress Thermometer (DT), and FCGs’ QOL, burden, and preparedness. The purpose is to identify types of problems unique to FCGs in cancer care. Methods FCGs of patients diagnosed with non-small cell lung cancer (NSCLC) were recruited from an adult outpatient setting at a comprehensive cancer center. Questionnaires included demographic information, City of Hope QOL Scale-Family Version, Caregiver Burden Scale, FCG Preparedness, and DT. Baseline data were utilized for this analysis. Results Of the FCGs (N=163), 68% were spouses, 64% female, and 34% worked full-time. FCG age ranged from 21 to 88 years with a mean of 57 years. FCGs cared for patients with NSCLC stage I-III (44%) and stage IV (56%). Psychological distress (DT mean = 4.40) was moderate. DT scores were highly correlated with seven of the eight explanatory variables. Secondary principal components analysis of the explanatory variables combined correlated variables into three constructs identified as Self Care Component, FCG Role Component, and FCG Stress Component. Simultaneous multiple regression of distress onto the three components showed they accounted for 49% of the variance in distress. Conclusion This exploration of FCGs’ concerns associated with elevated distress scores, as measured by the DT, helped identify three component problem areas. These areas warrant further psychosocial assessment and intervention to support FCGs as they care for the patient with cancer.