Mediation role of patient engagement on the association between health literacy and self-care behaviours in individuals with type 2 diabetes.

AIM: This study examined the relationship between health literacy and self-care behaviours among individuals with type 2 diabetes and whether the association is mediated by patient engagement. METHODS: This cross-sectional study was conducted between November 2019 and September 2020. The sample consisted of 218 participants with type 2 diabetes, older than 18 years old, applying to two endocrine outpatient clinics in Turkey. Multiple regression analyses were performed to identify the relationship between health literacy and self-care behaviours. The Sobel test method was used to examine the mediation role of patient engagement. RESULTS: Sample characteristics included mean age of 53.7 years, 57.3% were female and the mean A1C was 7.8%. The regression equation analyses demonstrated that health literacy (ß = 0.219, P < 0.05) and patient engagement (ß = 2.844, P < 0.05) significantly predicted diabetes self-care behaviours. Patient engagement served a mediational role in the association of health literacy and self-care behaviours (z value = 2.049, P < 0.02). CONCLUSION: Given the relationship between health literacy and diabetes self-care behaviours, the patient engagement concept presented a practical insight into the applicability of health-related information. Clinicians are recommended to consider patients' health literacy and engagement levels while planning customized interventions to facilitate diabetes management.

Culturally-sensitive moral distress experiences of intensive care nurses: A scoping review.

BACKGROUND: Moral distress is a phenomenon that all nurses experience at different levels and contexts. The level of moral distress can be affected by individual values and the local culture. The sources of the values shape the level of moral distress experienced and the nurses' decisions. AIM: The present scoping review was conducted to examine the situations that cause moral distress in ICU nurses in different countries. RESULTS: A scoping review methodology was adopted for the study, in line with the approach of Arksey, and O'Malley Literature was searched within PubMed/Medline, Scopus, Web of Science, and PsycINFO indexed keywords such as "moral distress", "Critical Care Nurse", and "Moral Distress Scale-Revised". Of the 617 identified citations, 12 articles matched the inclusion criteria. CONCLUSION: The moral distress experienced in countries and regions with similar cultures and geographies was parallel. The situations that cause the most moral distress are futile-care to prolong death, unnecessary tests and treatments, and working with incompetent healthcare personnel.

Caregivers' experiences of patients with moderate-stage Alzheimer's disease: a qualitative study.

BACKGROUND: Caregivers experience challenges in the longest stage of Alzheimer disease, the moderate stage, due to all day demanded caregiving, added with neuropsychiatric symptoms, and communication difficulties. Supporting challenges of caregiving is more effective when specific needs are assessed and real-life experiences are appreciated. This study sought to explore caregivers' experiences and support needs for moderate-stage Alzheimer's disease patients. METHODS: This study had a qualitative phenomenological design. In-depth, semi-structured interviews were conducted with 46 caregivers via face-to-face interviews. Following transcription, an analysis was done with Colaizzi's steps by coding and defining the main themes and subthemes. RESULTS: Caregivers stated they faced difficulties in the care activities of patients and needed support. Three themes were identified: (i) changes related to Alzheimer's disease; (ii) change in caregivers' life; and (iii) support needs and coping strategies about the care process. CONCLUSIONS: Current study confirmed that caregivers of moderate-stage Alzheimer's disease patients need proper support to cope with daily care activities and systems that help them overcome life challenges. The development of a system based on the stage-specific caregivers' need to decrease daily care challenges and overwhelming economic and emotional stress can be recommended.

Multidimensional pruritus assessment in hemodialysis patients.

BACKGROUND: Pruritus is a distressing, life-limiting symptom in chronic renal failure, affecting 40% of patients. This study aimed to determine uremic pruritus prevalence and investigate the multidimensional impact on hemodialysis patients. METHODS: This descriptive study was performed between March and June 2016. The study included 181 patients undergoing hemodialysis session, who reported pruritus in the prior month. Data were collected using the 5-D Itch Scale, which assesses pruritus based on 5 dimensions, i.e., degree, duration, direction, disability, and distribution, with a total score ranging from 5 (no itching) to 25 (maximum severity). RESULTS: Pruritus prevalence was 49.3%. Patients had a mean score of 13.97 ± 4.11 (moderate severity). The daily duration was 6-12 h (40.3%), with direction "a little bit better but still present" (38.7%) and distribution on the "back, upper arms, chest, and abdomen." Patients sleep, social life/leisure time, housework and errand were impacted "occasionally". The score was higher in patients aged ≥65 years, those on hemodialysis for ≥15 or more years, and those undergoing afternoon hemodialysis. The duration of itching was significantly shorter in employed patients. CONCLUSION: Assessment and management of itching symptoms in chronic renal failure are a clinical priority both for patients and for health care professionals. The results of this study highlight the importance of multidimensional assessment and support the need for development of standardized and patient-specific symptom management.

Developing a "toolkit" to measure implementation of concurrent palliative care in rural community cancer centers.

OBJECTIVE: Despite national guidelines recommending early concurrent palliative care for individuals newly diagnosed with metastatic cancer, few community cancer centers, especially those in underserved rural areas do so. We are implementing an early concurrent palliative care model, ENABLE (Educate, Nurture, Advise, Before Life Ends) in four, rural-serving community cancer centers. Our objective was to develop a "toolkit" to assist community cancer centers that wish to integrate early palliative care for patients with newly diagnosed advanced cancer and their family caregivers. METHOD: Guided by the RE-AIM (Reach, Effectiveness-Adoption, Implementation, Maintenance) framework, we undertook an instrument-development process based on the literature, expert and site stakeholder review and feedback, and pilot testing during site visits. RESULTS: We developed four instruments to measure ENABLE implementation: (1) the ENABLE RE-AIM Self-Assessment Tool to assess reach, adoption, implementation, and maintenance; (2) the ENABLE General Organizational Index to assess institutional implementation; (3) an Implementation Costs Tool; and (4) an Oncology Clinicians' Perceptions of Early Concurrent Oncology Palliative Care survey. SIGNIFICANCE OF RESULTS: We developed four measures to determine early palliative care implementation. These measures have been pilot-tested, and will be integrated into a comprehensive "toolkit" to assist community cancer centers to measure implementation outcomes. We describe the lessons learned and recommend strategies for promoting long-term program sustainability.

Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial.

BACKGROUND: Early palliative care (EPC) is recommended but rarely integrated with advanced heart failure (HF) care. We engaged patients and family caregivers to study the feasibility and site differences in a two-site EPC trial, ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers). METHODS: We conducted an EPC feasibility study (4/1/14-8/31/15) for patients with NYHA Class III/IV HF and their caregivers in academic medical centers in the northeast and southeast U.S. The EPC intervention comprised: 1) an in-person outpatient palliative care consultation; and 2) telephonic nurse coach sessions and monthly calls. We collected patient- and caregiver-reported outcomes of quality of life (QOL), symptom, health, anxiety, and depression at baseline, 12- and 24-weeks. We used linear mixed-models to assess baseline to week 24 longitudinal changes. RESULTS: We enrolled 61 patients and 48 caregivers; between-site demographic differences included age, race, religion, marital, and work status. Most patients (69%) and caregivers (79%) completed all intervention sessions; however, we noted large between-site differences in measurement completion (38% southeast vs. 72% northeast). Patients experienced moderate effect size improvements in QOL, symptoms, physical, and mental health; caregivers experienced moderate effect size improvements in QOL, depression, mental health, and burden. Small-to-moderate effect size improvements were noted in patients' hospital and ICU days and emergency visits. CONCLUSIONS: Between-site demographic, attrition, and participant-reported outcomes highlight the importance of intervention pilot-testing in culturally diverse populations. Observations from this pilot feasibility trial allowed us to refine the methodology of an in-progress, full-scale randomized clinical efficacy trial. TRIAL REGISTRATION: Clinicaltrials.gov NCT03177447 (retrospectively registered, June 2017).

Coaching Family Caregivers to Become Better Problem Solvers When Caring for Persons with Advanced Cancer.

Family caregivers of persons with advanced cancer often take on responsibilities that present daunting and complex problems. Serious problems that go unresolved may be burdensome and result in negative outcomes for caregivers' psychological and physical health and affect the quality of care delivered to the care recipients with cancer, especially at the end of life. Formal problem-solving training approaches have been developed over the past several decades to assist individuals with managing problems faced in daily life. Several of these problem-solving principles and techniques were incorporated into ENABLE (Educate, Nurture, Advise, Before Life End), an "early" palliative care telehealth intervention for individuals diagnosed with advanced cancer and their family caregivers. A hypothetical case resembling the situations of actual caregiver participants in ENABLE that exemplifies the complex problems that caregivers face is presented, followed by presentation of an overview of ENABLE's problem-solving key principles, techniques, and steps in problem-solving support. Though more research is needed to formally test the use of problem-solving support in social work practice, social workers can easily incorporate these techniques into everyday practice.

Improving the Quality of Palliative Care Through National and Regional Collaboration Efforts.

BACKGROUND: The measurement and reporting of the quality of care in the field of palliation has become a required task for many health care leaders and specialists in palliative care. Such efforts are aided when organizations collaborate together to share lessons learned. METHODS: The authors reviewed examples of quality-improvement collaborations in palliative care to understand the similarities, differences, and future directions of quality measurement and improvement strategies in the discipline. RESULTS: Three examples were identified that showed areas of robust and growing quality-improvement collaboration in the field of palliative care: the Global Palliative Care Quality Alliance, Palliative Care Quality Network, and Project Educate, Nurture, Advise, Before Life Ends. These efforts exemplify how shared-improvement activities can inform improved practice for organizations participating in collaboration. CONCLUSIONS: National and regional collaboratives can be used to enhance the quality of palliative care and are important efforts to standardize and improve the delivery of palliative care for persons with serious illness, along with their friends, family, and caregivers.

Older diabetic patients' attitudes and beliefs about health and illness.

AIMS AND OBJECTIVES: To determine older diabetic patients' attitudes and beliefs about illness and health. BACKGROUND: Prevention of metabolic complications and treatment for cardiovascular risk factors are the main aims of the care and treatment of older diabetic patients. For the effective management of diabetes, it is crucial to recognise patients' beliefs and attitudes about and behaviours towards their health and illness. DESIGN: A descriptive study. METHODS: The sample included 70 diabetic patients aged 65 and older. Data were collected using a socio-demographic form and the Health Belief Model Scale. The data were analysed using descriptive statistics, Mann-Whitney U-test, t-test, Kruskal-Wallis test, Welch variance analysis and Spearman correlation. RESULTS: Results showed that older diabetic patients' attitudes about illness and health were negative. Among individuals aged 65-70 years with more than secondary education and previous employment, mean perceived severity scores were found to be significantly higher than in other groups. The mean perceived barriers scores were found to be higher than in other groups, and this difference was statistically significant for older participants who declared a good economic status, who exhibited good/very good adherence to nutritional therapy and who were exercising and checking their blood sugar regularly. The perceived benefits and recommended activities scores of patients needing more education were significantly higher. CONCLUSIONS: Patients who were female, aged 70 and older, and of low educational and economic statuses; who showed poor adherence to treatment and medical nutrition therapy; and who needed diabetes-related training had negative health beliefs and were particularly at risk. RELEVANCE TO CLINICAL PRACTICE: Determining the personal factors that influence health behaviours can support the development of educational activities for diabetes management, complication prevention and treatment adherence improvement.

The effect of structured education and phone follow-up on moderate stage Alzheimer's disease caregiving: Outcomes for patient and caregivers.

AIM: To determine the effectiveness of a caregiver education (needs tailored) and telephone follow-up intervention for caregivers of people with moderate stage Alzheimer's disease on caregiver burden, caregiving impact on life, and patients' neuropsychiatric symptoms, dependence on activities of daily living. METHODS: This quasi-experimental study sampled caregivers of people with moderate stage Alzheimer's. Caregivers in the intervention group received education and telephone follow-up over 12 weeks, while the control group received routine care. Caregivers were assessed for burden, changes in life, and patients for neuropsychiatric symptoms, and dependence on daily living activities. RESULTS: The caregiver burden, life changes, distress, and patients' neuropsychiatric symptom scores showed apparent trend toward betterment, but no statistically significant differences were found in study outcomes between the two groups (P > .05). CONCLUSION: The caregiver need-based, structured education and telephone follow-up intervention was not empirically effective. With the promising effect from this study, managing behavioral symptoms with need-based, structured, and skill-oriented training has the potential to alleviate the burden on caregivers.

The effect of health literacy-based, health belief-constructed education on glycated hemoglobin (HbA1c) in people with type 2 diabetes: A randomized controlled study.

AIMS: Adopting effective self-care behaviors is essential in maintaining optimal glycated hemoglobin (HbA1c) levels. The study aimed to evaluate the effect of health literacy-based, health belief-constructed education and counseling on glycated hemoglobin (HbA1c) in people with type 2 diabetes. METHODS: The parallel-group, randomized controlled study was conducted between June 2019 and March 2020. One hundred and twenty patients were randomized to receive either 12-week health literacy-based group education and phone counseling (intervention, 60 patients) or routine diabetic care (control, 60 patients). The study was completed with 107 patients (54 intervention, 53 control). HbA1c (primary outcome), self-efficacy, perceived susceptibility, severity, barriers, and benefits (secondary outcomes) were evaluated at baseline and six months. RESULTS: Both groups had decreases in HbA1c. There was no significant decrease in HbA1c between the intervention and control groups. However, there was a significant improvement in self-efficacy, change in perceived susceptibility, perceived barriers, and perceived benefits in the intervention group. This effect was the same for all patients in the high and low health literacy intervention groups. CONCLUSIONS: Education and counseling based on health literacy levels and framed with health belief constructs change health beliefs, predicting higher engagement and efficacy in disease management activities. CLINICAL TRIAL NUMBER: NCT04677127.

Nursing students' leadership and emotional intelligence in Turkey.

The purpose of this study was to determine nursing students' leadership and emotional intelligence. The study was conducted as a descriptive study in a nursing school in 2008. The sample comprised 69 junior and 85 senior nursing students and was based on voluntary participation. Data were collected through a data sheet, a leadership style questionnaire, and the Bar-On Emotional Intelligence Quotient Inventory. There were no statistically significant differences in leadership orientations and emotional intelligence between junior and senior students (p > 0.05). Although there was a significant relationship between emotional intelligence and task-oriented leadership (r = 0.427, p = 0.001), there was no significant relationship between emotional intelligence and people-oriented leadership (r = 0.076, p = 0.367). Students' emotional intelligence score was average, and their people-oriented leadership score was approximately half of the total score. It is recommended to develop strategies for improving nursing students' people-oriented leadership skills during their nursing education.

Psychosocial Status of Turkish Families of Pediatric Cancer Patients.

Introduction: In some countries, family members are not involved in routine pediatric cancer psychosocial care although it is essential. This integrative review aims to determine the extent of research on family members of pediatric cancer patients in Turkey. Method: Four main keywords were used: parent/sibling/family, child/pediatric, cancer and psychosocial outcomes to search articles on PubMed, EKUAL, ULAKBIM, WOS databases (limited to 1997-2017). Among first 317 hits, 284 records were excluded. Of 33 eligible articles, 14 were excluded due to sample characteristics. Results: Research on psychosocial effects of pediatric cancer on family members is mostly descriptive and offers moderate-quality evidence. The reported psychosocial effects are (1) depression, anxiety, hopelessness, acceptance; (2) burden of care, quality of life, posttraumatic stress disorder; and (3) need for social support, information. Discussion: This study will contribute to the literature and help for the planning of protective psychosocial interventions for family members of children with cancer in Turkey.

Frailty Prevalence and Characteristics in Older Adults with Hematologic Cancer: a Descriptive Study.

OBJECTIVE: This study investigated the prevalence of frailty in older patients with hematologic cancer and assessed the association between older patients' characteristics and frailty. METHODS: This descriptive study enrolled 90 older patients undergoing treatment for hematological malignancies at an oncology hospital. Frailty was assessed with the Edmonton Frailty Scale as not frail (0-4), apparently vulnerable (5-6), mildly frail (7-8), moderately frail (9-10), and severely frail (11-17). The association of frailty and older patient characteristics and diagnosis was assessed by logistic regression. RESULTS: The prevalence of frailty (mild, moderately, and severely) was 42.2%, and "apparently vulnerable" frailty was 60%. The mean scale score was 5.59 ± 3.13. Frailty was more prevalent in patients who were ≥75 years of age, had ≥4 children, were diagnosed with leukemia, and were diagnosed for ≥2 years. Gender, diagnosis, and employment were factors associated with the presence of frailty. Female gender and lack of employment were factors associated with a high risk of frailty. A diagnosis of multiple myeloma was associated with a low risk of frailty. CONCLUSIONS: The prevalence of frailty was high in older patients. Female and unemployed patients were at high risk for frailty. Frailty characteristics of older patients with hematologic cancer highlighted the need for comprehensive geriatric assessment and frailty screening, provided prevalence and characteristics of frailty in this group of patients during treatment, and highlighted the need for holistic care approach.

Attitude, source of knowledge, and supporting factors on evidence-based nursing among cardiovascular nurses: A cross-sectional descriptive study in Turkey.

RATIONALE, AIMS, AND OBJECTIVES: Cardiovascular nursing has been a rapidly growing specialty since the 1960s. Assessing cardiovascular nurses' EBN (evidence-based nursing) attitudes and beliefs and the factors supporting EBN is important to assist the training programmes in fostering EBN practice in a clinical environment. Few investigations have been conducted on EBN knowledge, attitudes, beliefs, and implementation among cardiovascular nurses. The present study aims to investigate cardiovascular nurses' attitudes towards EBN, sources of knowledge, and the factors supporting EBN in Turkey. METHODS: A cross-sectional survey with a descriptive and comparative design was conducted with 62 cardiovascular nurses working at two hospitals in Turkey. Data were collected by using the Evidence-Based Nursing Attitude Questionnaire, a sociodemographic questionnaire concerning demographic information and including questions about nurses' sources of knowledge, supporting factors to implement EBN, research experience, use of clinical guidelines, and barriers to applying EBN. Data were analysed with descriptive and inferential statistics. RESULTS: The research revealed that cardiovascular nurses have positive attitudes, feelings, beliefs, and intention of conduct towards EBN. Cardiac surgery nurses reported significantly higher positive feelings, beliefs, intention of conduct, and attitude towards EBN than cardiology nurses. Nursing experience and information acquired through nursing school were the most frequently used sources of knowledge rather than research results (35.5%) in their clinical practice. Half of the respondents (47%) were familiar with EBN. Cardiovascular nurses who had graduate degrees, reviewed nursing research and were familiar with EBN had significant positive attitudes towards EBN. Nurses needed enough time and resources, a background in clinical practice, and support from the hospital administration to implement EBN. CONCLUSIONS: An education intervention should be provided about EBN knowledge and skills for cardiovascular nurses. Mentor nurses should be trained and assigned in cardiovascular clinics to implement EBN.

Using Patients and Their Caregivers Feedback to Develop ENABLE CHF-PC: An Early Palliative Care Intervention for Advanced Heart Failure.

OBJECTIVE:: Models of early, community-based palliative care for individuals with New York Heart Association (NYHA) class III/IV heart failure and their families are lacking. We used the Medical Research Council process of developing complex interventions to conduct a formative evaluation study to translate an early palliative care intervention from cancer to heart failure. METHOD:: One component of the parent formative evaluation pilot study was qualitative satisfaction interviews with 8 patient-caregiver dyad participants who completed Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare For Patient and Caregivers (ENABLE CHF-PC) intervention. The ENABLE CHF-PC consists of an in-person palliative care assessment, weekly telehealth coaching sessions, and monthly follow-up. Subsequent to completing the coaching sessions, patient and caregiver participants were interviewed to elicit their experiences with ENABLE CHF-PC. Digitally recorded interviews were transcribed and analyzed using a thematic approach. RESULTS:: Patients (n = 8) mean age was 67.3, 62.5% were female, 75% were married/living with a partner; caregivers (n = 8) mean age was 56.8, and 87.5% were female. Four themes related to experiences with ENABLE CHF-PC included "allowed me to vent," "gained perspective," "helped me plan," and "gained illness management and decision-making skills." Recommendations for intervention modification included (1) start program at diagnosis, (2) maintain phone-based approach, and (3) expand topics and modify format. CONCLUSION:: Patients and caregivers unanimously found the intervention to be helpful and acceptable. After incorporating modifications, ENABLE CHF-PC is currently undergoing efficacy testing in a large randomized controlled trial.

Needs Assessment for Turkish Family Caregivers of Older Persons with Cancer: First-Phase Results of Adapting an Early Palliative Care Model.

Background: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers. Objective: To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer. Methods: Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support. Results: Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services. Conclusion: Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.

Translating a US Early Palliative Care Model for Turkey and Singapore.

The field of palliative care is growing in acceptance and sophistication globally. No longer considered just for patients at end-of-life, palliative care is now being incorporated early in the disease trajectory. Despite professional guidelines supporting early palliative care, there are few models that have been created that can be translated into practice cross-culturally. In the United States, the Educate, Nurture, Advise, Before, Life Ends (ENABLE) early palliative care telehealth model has demonstrated effectiveness in improving quality of life, mood, symptom relief, and survival for patients with cancer and is now being tested in patients with heart failure. Family caregivers of patients who have received ENABLE concurrent with their care recipients have also demonstrated positive outcomes in quality of life and caregiver burden. Internationally, a number of investigators are culturally adapting ENABLE for patients and family caregivers. While some elements of ENABLE, such as symptom management and self-care, and the caregiving role are relevant cross-culturally, others have been built on Western principles of self-determination or represent concepts such as advance care planning which will require more cultural adaptation. In addition, ENABLE was initially an in-person approach that was converted to telehealth to accommodate a rural population-it will be important to understand cultural norms related to receiving care by phone or if an in-person approach will be more culturally acceptable. This paper describes efforts in Turkey and Singapore to culturally adapt the ENABLE early palliative care principles for their countries.

Associations between advanced cancer patients' survival and family caregiver presence and burden.

We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality-of-life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log-rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02-2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23-5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44-5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14-0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01-1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival.

Benefits of Early Versus Delayed Palliative Care to Informal Family Caregivers of Patients With Advanced Cancer: Outcomes From the ENABLE III Randomized Controlled Trial.

PURPOSE: To determine the effect of early versus delayed initiation of a palliative care intervention for family caregivers (CGs) of patients with advanced cancer. PATIENTS AND METHODS: Between October 2010 and March 2013, CGs of patients with advanced cancer were randomly assigned to receive three structured weekly telephone coaching sessions, monthly follow-up, and a bereavement call either early after enrollment or 3 months later. CGs of patients with advanced cancer were recruited from a National Cancer Institute cancer center, a Veterans Administration Medical Center, and two community outreach clinics. Outcomes were quality of life (QOL), depression, and burden (objective, stress, and demand). RESULTS: A total of 122 CGs (early, n = 61; delayed, n = 61) of 207 patients participated; average age was 60 years, and most were female (78.7%) and white (92.6%). Between-group differences in depression scores from enrollment to 3 months (before delayed group started intervention) favored the early group (mean difference, -3.4; SE, 1.5; d = -.32; P = .02). There were no differences in QOL (mean difference, -2; SE, 2.3; d = -.13; P = .39) or burden (objective: mean difference, 0.3; SE, .7; d = .09; P = .64; stress: mean difference, -.5; SE, .5; d = -.2; P = .29; demand: mean difference, 0; SE, .7; d = -.01; P = .97). In decedents' CGs, a terminal decline analysis indicated between-group differences favoring the early group for depression (mean difference, -3.8; SE, 1.5; d = -.39; P = .02) and stress burden (mean difference, -1.1; SE, .4; d = -.44; P = .01) but not for QOL (mean difference, -4.9; SE, 2.6; d = -.3; P = .07), objective burden (mean difference, -.6; SE, .6; d = -.18; P = .27), or demand burden (mean difference, -.7; SE, .6; d = -.23; P = .22). CONCLUSION: Early-group CGs had lower depression scores at 3 months and lower depression and stress burden in the terminal decline analysis. Palliative care for CGs should be initiated as early as possible to maximize benefits.