Examining Caregiver Outcomes in the CONNECT Intervention for Patients With Advanced Cancer

ContextPalliative care offers patient and family centered approaches that may mitigate risk of caregiver burden and poor mood.ObjectivesTo determine whether a palliative care intervention (CONNECT) improved burden, mood, and self-efficacy among caregivers of patients with advanced cancer.MethodsIn this cluster randomized trial, patients and their caregivers were recruited from 17 Oncology clinics in Pennsylvania. Participants attended nurse-led monthly visits, addressing patient symptoms, goals of care, and advance care planning. At baseline and three months, we measured caregiver burden using Zarit Burden Interview (ZBI-12; range 0–48), caregiver anxiety and depression using Hospital Anxiety and Depression Scales (HADS-A, range 0–21; HADS-D, range 0–21). We measured caregiver self-efficacy at three months using Caregiver Inventory (CGI; range 0–189).ResultsWe enrolled 441 caregivers and 381 completed three-month assessments. We found no significant differences in caregiver burden (adjusted mean difference -0.39; 95% CI -1.07–0.29, P = 0.90), depression (adjusted mean difference -0.22, 95% CI -0.97–0.55, P = 0.26), or anxiety (adjusted mean difference 0.09; 95% CI -1.25–1.43, P = 0.58), between the intervention and standard care at three months. Caregiver self-efficacy was higher at three months in the intervention compared to standard care (adjusted mean difference 9.36; 95% CI 0.95–17.77, P = 0.030).ConclusionCaregivers in CONNECT did not experience improved burden or mood, however, they reported higher self-efficacy compared to caregivers receiving standard care. This study highlights the need for strategies to optimize caregiver outcomes in palliative care interventions.     

Is There a Role for Palliative Services and Supportive Care in Managing Advanced Penile Cancer?

ObjectivesWe aim to review the benefits of palliative care, describe why a palliative approach to care is needed for patients with advanced penile squamous cell carcinoma and propose ways in which oncology nurses can improve access to and provision of palliative care.Data SourcesA review of the literature was performed and identified a range of randomized trials and systematic reviews regarding the benefits of palliative care in this patient group. Cohort studies of patients with penile cancer were used to describe the psychosocial and physical disease burden of penile cancer.ConclusionThroughout each phase of penile cancer and its treatment, oncology nurses can engage in care that goes beyond cancer-directed treatments to address the whole person, thereby improving quality of life by delivering person-centered palliative care in line with individual needs.Implications for Nursing PracticeOncology nurses are in key positions to explore many concerns that patients with penile cancer have for themselves or their caregivers. Through speaking directly with patients and caregivers, oncology nurses can uncover sources of distress, assess for unmet needs, and advocate for improved primary palliative care or early referral to specialty palliative care teams.     

A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: A randomised clinical trial

Purpose of the researchThe French setting, including laws and guidelines, advocates greater involvement of informal caregivers in the care of cancer patients to protect the caregivers from depression, distress, and a decrease in their quality of life. This study aimed to assess the efficacy of a caregiver educational programme by measuring two outcomes: patients' and caregivers' quality of life and caregivers' burden.Methods and sampleA multicentre randomised controlled trial was performed in six oncology wards in French hospitals. Eligible patients had a cancer, a main caregiver, allowed their caregivers' involvement, and received an inclusion agreement by a doctor/psychologist dyad. The experimental group participated in an educational programme performed by nurses to improve their skills in meal support, nursing care, welfare care, or symptom management. The SF36 and the Zarit burden scales were used to measure quality of life and caregivers' burden at the beginning and at the end of the study.Key results67 patients were randomised and 33 were included in the experimental group. Evolution scores, which measured the difference between baseline and final scores, showed an improvement in patients' and caregivers' quality of life and an alleviated burden for experimental group caregivers.ConclusionsAn educational programme for caregivers encourages the involvement of patients, informal caregivers and health-care providers in a triangular relationship which enhances the quality of life of patients and caregivers alike and decreases caregivers' burden. Care organisation should therefore be rethought as a triangular relationship between patients, caregivers and health-care providers, with nurses as the mainstay.     

Analysis of caregiver burden in palliative care: An integrated review

The inclusion of caregivers in a holistic care approach represents a basic principle in palliative care. However, many palliative care professionals have a lack of understanding of difficulties or unmet needs among caregivers. To enhance the quality of life of caregivers and the quality of care for patients, healthcare professionals should be better informed about the constructs of caregiver burden. The aim of this study is to synthesize the concept of caregiver burden in palliative care, providing implications for the caregivers and their support systems. This concept analysis study adopts the integrative review approach and the basic text analysis method (ie, word frequency). The PubMed, CINAHL, Embase, and PsycINFO databases are explored for eligible studies. From this literature search, 66 articles from 1998 to 2018 are located. After data collection is completed, the two authors independently evaluate the quality of studies published before 1 September 2018. The caregiver burden is then redefined with its attributes, antecedents, consequences, empirical referents, and facilitators. It is recommended that the multidimensional concept of caregiver burden in palliative care be measured by considering caregiver characteristics and the caregiving context.     

Hospice patient and caregiver congruence in reporting patients' symptom intensity

As healthcare increasingly moves out of hospitals, the care of patients with cancer is provided in the community with the help of family caregivers. In many cases, nurses depend on family caregivers to provide assessment data about patients. This makes the accuracy and dependability of the data given by caregivers particularly important. However, it is not clear whether caregivers can accurately and dependably report such subjective data as symptom intensity. The purpose of this project was to evaluate the ability of the primary caregiver to report the symptom intensity of hospice patients with cancer. The sample consisted of 264 newly admitted adult patients with advanced cancer in hospice home care and their primary caregivers. These subjects were part of a large National Institutes of Health (NIH)-funded randomized clinical trial focused on symptom management and quality of life. The patients were alert and oriented. Among the questionnaires completed by both patients and caregivers on admission were numeric rating scales for pain and dyspnea and the Constipation Assessment Scale. All of these scales were designed to describe the patient's symptom intensity. The patient sample was predominantly white (83%) and male (57%), with a mean age of 71.6 years. The caregiver sample was predominantly white (85%) and female (78%), with a mean age of 62 years. The results indicated that caregivers significantly overestimated symptom intensity for all three symptoms (P =.000). Furthermore, the limited variance accounted for by the two sets of scores for each of the symptoms (R2 =.16-.26) indicated much more error in the scores than agreement between patient and caregiver. It appears that family caregivers cannot reliably report patient symptom intensity. Healthcare providers need to train family caregivers in conducting systematic assessments instead of assuming that they understand patient symptoms.     

Protocol for an embedded pragmatic clinical trial to test the effectiveness of Aliviado Dementia Care in improving quality of life for persons living with dementia and their informal caregivers

IntroductionPersons living with Alzheimer's disease and related dementias (ADRD) frequently experience pain and behavioral and psychological symptoms of dementia (BPSD) which decrease quality of life (QOL) and influence caregiver burden. Home healthcare professionals however may underrecognize or lack the ability to manage BPSD.InterventionThis protocol describes an ADRD palliative quality assurance performance improvement program for home healthcare, Aliviado Dementia Care-Home Health Edition. It includes training, mentoring, and a toolbox containing intervention strategies.MethodsThis embedded pragmatic clinical trial will utilize a multi-site, cluster randomized control design. Recruitment will occur from three home healthcare agencies located in New Jersey, Utah, and Florida. At each agency, care teams will be randomized as clusters and assigned to either the Aliviado Dementia Care program or usual care. We plan to enroll 345 persons living with ADRD and their informal caregiver dyads. The primary outcome will be to measure QOL in both the person living with ADRD and their informal caregiver, and emergency department visits and hospital admissions. Secondary outcomes in the person living with ADRD will include the examination of pain, BPSD, antipsychotic and analgesic use. Secondary outcomes in caregivers include burden, depressive symptoms, functional health and wellbeing, and healthcare utilization.ConclusionThis study will be the first large-scale embedded pragmatic clinical trial in home healthcare focused on care quality and outcomes in addressing QOL in ADRD. If proven successful, the intervention can then be disseminated to agencies throughout the country to improve the quality of care for this vulnerable, underserved population.Trial registrationClinical Trials.gov: NCT03255967.     

Predictors of home death of home palliative cancer care patients: a cross-sectional nationwide survey

Objectives

To identify factors influencing the place of death among home palliative cancer care patients, focusing on the role of nurses in terms of pre- and post-discharge from hospital to home care settings.

Design, settings and participants

A cross-sectional nationwide questionnaire survey was conducted at 1000 randomly selected homecare agencies in Japan. The questionnaires were completed by primary community nurses of home palliative patients just after their discharge. A total of 568 responses were analyzed (effective response rate, 69%).

Results

Multivariate logistic regression analysis revealed the following independent factors of place of death among those patients: desire for home death at referral by both patient and family caregiver; caregiver relationship to patient as daughter or daughter-in-law; totally bedridden functional status of patient; patient not suffering from depression and/or anxiety at referral; patients and caregivers duly informed about the dying process/death in detail, as well as instructed by community nurses about pain management and how to treat/prevent bedsores in home care settings.

Conclusions

This study demonstrated the importance of both the hospital and community nurses’ role in increasing the patients’ chance of dying at home. Hospital nurses should support early transfer to home palliative care according to their assessment of the desire of patient/family caregiver for home death, the patients’ clinical status, and caregivers’ ability to provide patient care at home. Community nurses should inform patients/family caregiver in detail about the dying process/death just after discharge, relieve patient pain, treat/prevent bedsores, and instruct family caregivers on their symptom control.     

Patient-centered and efficacious advance care planning in cancer: Protocol and key design considerations for the PEACe-compare trial

BackgroundFailure to deliver care near the end of life that reflects the needs, values and preferences of patients with advanced cancer remains a major shortcoming of our cancer care delivery system.MethodsA mixed-methods comparative effectiveness trial of in-person advance care planning (ACP) discussions versus web-based ACP is currently underway at oncology practices in Western Pennsylvania.Patients with advanced cancer and their caregivers are invited to enroll. Participants are randomized to either (1) in-person ACP discussions via face-to-face visits with a nurse facilitator following the Respecting Choices® Conversation Guide or (2) web-based ACP using the PREPARE for your care™ web-based ACP tool. The trial compares the effect of these two interventions on patient and family caregiver outcomes (engagement in ACP, primary outcome; ACP discussions; advance directive (AD) completion; quality of end-of-life (EOL) care; EOL goal attainment; caregiver psychological symptoms; healthcare utilization at EOL) and assesses implementation costs. Factors influencing ACP effectiveness are assessed via in-depth interviews with patients, caregivers and clinicians.DiscussionThis trial will provide new and much-needed empirical evidence about two patient-facing ACP approaches that successfully overcome limitations of traditional written advance directives but entail very different investments of time and resources. It is innovative in using mixed methods to evaluate not only the comparative effectiveness of these approaches, but also the contexts and mechanisms influencing effectiveness. Data from this study will inform clinicians, payers and health systems seeking to adopt and scale the most effective and efficient ACP strategy in real-world oncology settings.     

The dignity in advanced dementia (diadem) study: Developing an integrated geriatric palliative homecare program

Background: The prevalence of dementia is rising globally. Many patients suffer from the burdensome complications of advanced dementia as they are still poorly addressed. Aims: To describe the development of an interdisciplinary palliative homecare program for patients with advanced dementia and to develop a workflow that delineates the seamless continuation of care between the hospital and community with the homecare program. Design: Palliative care needs of patients and caregivers were established through a qualitative review of the literature. Appraisal tools were chosen based on their validity and feasibility in the homecare setting. Gaps in the healthcare system were identified and addressed as part of the integration of care between the hospital and the community. Setting/participants: Patients at Functional Assessment Staging (FAST) 7 with pneumonia, albumin level <35?g/L and/or enteral feeding were enrolled from a tertiary care hospital into the homecare program. Results: Patients’ symptom burden and quality of life were assessed. Caregivers were engaged in the planning of patients’ care. With the homecare program, patients and caregivers received support at home. Two physicians, seven nurses, and three social work professionals were educated about advanced dementia palliative care and medical information was communicated between different healthcare sites. Preliminary analysis of 306 patients revealed the presence of pain and neuropsychiatric behaviors. Impact of caregiving was mild to moderately severe. Conclusion: Advanced dementia is under-recognized as a terminal illness requiring specialized palliative intervention. Integrating a homecare palliative program into advanced dementia care is the first step towards palliating suffering at the end-of-life.     

Population Health and Tailored Medical Care in the Home: the Roles of Home-Based Primary Care and Home-Based Palliative Care

With the growth of value-based care, payers and health systems have begun to appreciate the need to provide enhanced services to homebound adults. Recent studies have shown that home-based medical services for this high-cost, high-need population reduce costs and improve outcomes. Home-based medical care services have two flavors that are related to historical context and specialty background—home-based primary care (HBPC) and home-based palliative care (HBPalC). Although the type of services provided by HBPC and HBPalC (together termed “home-based medical care”) overlap, HBPC tends to encompass longitudinal and preventive care, while HBPalC often provides services for shorter durations focused more on distress management and goals of care clarification. Given workforce constraints and growing demand, both HBPC and HBPalC will benefit from working together within a population health framework—where HBPC provides care to all patients who have trouble accessing traditional office practices and where HBPalC offers adjunctive care to patients with high symptom burden and those who need assistance with goals clarification. Policy changes that support provision of medical care in the home, population health strategies that tailor home-based medical care to the specific needs of the patients and their caregivers, and educational initiatives to assure basic palliative care competence for all home-based medical providers will improve access and reduce illness burden to this important and underrecognized population.     

Healthcare providers' priorities for cancer care: A Delphi study in Greece.

Cancer is a major problem globally and effective cancer care services are needed to lessen its burden on the community. In Greece, oncology health services provision is not located efficiently, resulting in few patients receiving high-quality care. Furthermore, shortages of health professionals and underdeveloped services such as primary care, home care and palliative care have aggravated the problem. The absence of a national cancer registry means that the extent of cancer incidence cannot be evaluated effectively. Dissatisfaction with the Greek NHS is well established, despite the reforms proposed by consecutive Greek governments. It remains that limited research exists in the area of cancer services and cancer care. The aim of this study was to identify the key areas of cancer care and services that needed to be developed or improved in Greece and their prioritisation within the Greek healthcare system. A Delphi technique was used to collect data from a sample of 30 healthcare providers, in three rounds. The response rate for each round was over 77%. The priorities for healthcare providers were focused on staff shortages, working conditions, pain management, home care, day units and communication. Based on the priorities provided by the participants and supporting literature, it is suggested that a national cancer registry, the employment of nurses to develop primary care, home care, day care and palliative care services need to be established. Furthermore, education in communication skills and the redistribution of the bio-medical technology are needed in order to provide more effective cancer services in Greece. More research is needed to validate the actual level of cancer services provided in Greece.     

MOTIVATional intErviewing to improve self-care in Heart Failure patients (MOTIVATE-HF): Study protocol of a three-arm multicenter randomized controlled trial

AimsHeart Failure (HF) self-care improves patient outcomes but trials designed to improve HF self-care have shown inconsistent results. Interventions may be more effective in improving self-care if they mobilize support from providers, promote self-efficacy, increase understanding of HF, increase the family involvement, and are individualized. All of these elements are emphasized in motivational interviewing (MI); few trials have been conducted using MI in HF patients and rarely have caregivers been involved in MI interventions. The aim of this study will be to evaluate if MI improves self-care maintenance in HF patients, and to determine if MI improves the following secondary outcomes: a) in HF patients: self-care management, self-care confidence, symptom perception, quality of life, anxiety/depression, cognition, sleep quality, mutuality with caregiver, hospitalizations, use of emergency services, and mortality; b) in caregivers: caregiver contribution to self-care, quality of life, anxiety/depression, sleep, mutuality with patient, preparedness, and social support.MethodsA three-arm randomized controlled trial will be conducted in a sample of 240 HF patients and caregivers. Patients and caregivers will be randomized to the following arms: 1) MI intervention to patients only; 2) MI intervention to patients and caregivers; 3) standard of care to patients and caregivers. The primary outcome will be measured in patients 3 months after enrollment. Primary and secondary outcomes also will be evaluated 6, 9 and 12 months after enrollment.ConclusionThis study will contribute to understand if MI provided to patients and caregivers can improve self-care. Because HF is rising in prevalence, findings can be useful to reduce the burden of the disease.     

A rapid two-stage screening protocol for palliative care in the emergency department: a quality improvement initiative

BackgroundA rapid two-stage screening protocol was developed to improve referral for palliative care needs among frail elderly in the emergency department (ED).MeasuresA new triage tool was administered, with assessment tools for activities of daily living, performance, functional staging, symptom burden, and caregiver distress.InterventionStage One identified elderly patients meeting criteria for life-limiting conditions. Stage Two referred patients with crescendo losses in activities of daily living, high symptom burden, and caregiver distress to palliative care or hospice.OutcomesOver eight months, 1587 patients were screened, representing 22% of ED visits made by patients older than 65 years during this time period. Of these, 140 met functional decline criteria, and 51 of these needed palliative care consultation. Five patients were referred to hospice, 20 received palliative care, and 26 received no further service.Conclusions/Lessons LearnedThe project shows unmet needs among elderly ED patients, and the feasibility of rapid screening and referral using a quality improvement approach. At its peak, the project accounted for half the referrals to the palliative care consultation service.     

Interdisciplinary cooperation of GPs in palliative care at home: a nationwide survey in The Netherlands

OBJECTIVE: To investigate the occurrence and predictors of interdisciplinary cooperation of GPs with other caregivers in palliative care at home. DESIGN: In a prospective study among 96 general practices, the GPs involved identified all dying patients during the study period of 12 months. The GPs received an additional post-mortem questionnaire for each patient who died during the study period, and registered the healthcare providers with whom they cooperated. Multivariable logistic regression analysis was used to identify the predictors of GP cooperation with other caregivers. SETTING: Second Dutch National Survey in General Practice. SUBJECTS: A total of 743 patients who received palliative care according to their GP. MAIN OUTCOME MEASURES: Interdisciplinary cooperation between GP and other healthcare providers. RESULTS: During the study period, 2194 patients died. GPs returned 1771 (73%) of the questionnaires. According to the GPs, 743 (46%) of their patients received palliative care. In 98% of these palliative care patients, the GP cooperated with at least one other caregiver, with a mean number of four. Cooperation with informal caregivers (83%) was most prevalent, followed by cooperation with other GPs (71%) and district nurses (63%). The best predictors of cooperation between GPs and other caregivers were the patient's age, the underlying disease, and the importance of psychosocial care. CONCLUSION: In palliative care patients, GP interdisciplinary cooperation with other caregivers is highly prevalent, especially with informal caregivers and other primary care collaborators. Cooperation is most prevalent in younger patients, patients with cancer as underlying disease, and if psychosocial care is important.     

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended.     

Interdisciplinary cooperation of GPs in palliative care at home: A nationwide survey in the Netherlands

Objective. To investigate the occurrence and predictors of interdisciplinary cooperation of GPs with other caregivers in palliative care at home. Design. In a prospective study among 96 general practices, the GPs involved identified all dying patients during the study period of 12 months. The GPs received an additional post-mortem questionnaire for each patient who died during the study period, and registered the healthcare providers with whom they cooperated. Multivariable logistic regression analysis was used to identify the predictors of GP cooperation with other caregivers. Setting. Second Dutch National Survey in General Practice. Subjects. A total of 743 patients who received palliative care according to their GP. Main outcome measures. Interdisciplinary cooperation between GP and other healthcare providers. Results. During the study period, 2194 patients died. GPs returned 1771 (73%) of the questionnaires. According to the GPs, 743 (46%) of their patients received palliative care. In 98% of these palliative care patients, the GP cooperated with at least one other caregiver, with a mean number of four. Cooperation with informal caregivers (83%) was most prevalent, followed by cooperation with other GPs (71%) and district nurses (63%). The best predictors of cooperation between GPs and other caregivers were the patient's age, the underlying disease, and the importance of psychosocial care. Conclusion. In palliative care patients, GP interdisciplinary cooperation with other caregivers is highly prevalent, especially with informal caregivers and other primary care collaborators. Cooperation is most prevalent in younger patients, patients with cancer as underlying disease, and if psychosocial care is important.