Palliative Care Needs in Patients with Heart Failure Presenting to the Emergency Department: A Patient-Centered Evaluation of Health Status and Quality of Life Approach (S769)

High-grade glioma (HGG) is characterized by debilitating neurologic symptoms and poor prognosis. Some of the suffering this disease engenders may be ameliorated through palliative care, which improves quality of life for seriously ill patients by optimizing symptom management and psychosocial support, which can be delivered concurrently with cancer-directed treatments. In this article, we review palliative care needs associated with HGG and identify opportunities for primary and specialty palliative care interventions. Patients with HGG and their caregivers experience high levels of distress due to physical, emotional, and cognitive symptoms that negatively impact quality of life and functional independence, all in the context of limited life expectancy. However, patients typically have limited contact with specialty palliative care until the end of life, and there is no established model for ensuring their palliative care needs are met throughout the disease course. We identify low rates of advance care planning, misconceptions about palliative care being synonymous with end-of-life care, and the unique neurologic needs of this patient population as some of the potential barriers to increased palliative interventions. Further research is needed to define the optimal roles of neuro-oncologists and palliative care specialists in the management of this illness and to establish appropriate timing and models for palliative care delivery.

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A model of early integration of palliative care into oncology care for patients with metastatic colorectal cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.26_suppl.142 ◽

2016 ◽

Vol 34 (26_suppl) ◽

pp. 142-142

Author(s):

Carling Jade Ursem ◽

Laura Cantino ◽

Ingrid Maravilla ◽

Nicole Thompson ◽

Chloe Evelyn Atreya ◽

...

Keyword(s):

Quality Of Life ◽

Colorectal Cancer ◽

Palliative Care ◽

Care Program ◽

Palliative Care Program ◽

Care Needs ◽

Control Phase ◽

Psychosocial Concerns ◽

Palliative Care Needs

142 Background: Current NCCN guidelines recommend that “institutions should develop processes for integrating palliative care into cancer care.” However, it is not clear what the best method is for implementing this integrated care. Palliative care needs specific to patients with metastatic colorectal cancer (mCRC) and best practices for integration of outpatient palliative and oncologic care in mCRC are not well understood. Methods: We conducted a pre-post prospective cohort study to evaluate the palliative care needs of mCRC patients and the implementation of an integrated palliative care program. In both the control and implementation phase, we enrolled patients with mCRC within 90 days of diagnosis or establishing care for mCRC at UCSF. Patients were surveyed regarding their symptoms, quality of life, psychosocial concerns, functional status and understanding of prognosis. During the control phase, patients received usual oncologic care. Based on survey results from the control phase, we designed a palliative care program to target the needs identified. In the intervention phase, patients are receiving longitudinal palliative care integrated into their usual cancer care. Results: The 30 patients in the control phase reported anorexia, fatigue and poor quality of life as their most common symptoms. Common psychosocial challenges were transportation, insurance/financial and difficulty with treatment decisions. Patients also had unrealistic expectations of their prognosis. In order to improve these identified issues, we designed and implemented an integrated palliative care program that includes weekly multidisciplinary meetings with oncology and palliative care providers and proactive palliative care visits from the time of diagnosis, which occur within the oncology clinic at a time that coincides with oncology visits. Conclusions: Physical symptoms, psychosocial concerns and poor prognostic awareness are common among patients with mCRC. We have implemented an integrated palliative care program to address these needs. Evaluation of the effectiveness of this intervention is ongoing.

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53CAREGIVING SELF-EFFICACY IS ASSOCIATED WITH QUALITY OF LIFE OF PATIENTS WITH PALLIATIVE CARE NEEDS

Age and Ageing ◽

10.1093/ageing/afy037.07 ◽

2018 ◽

Vol 47 (suppl_2) ◽

pp. ii15-ii18

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Self Efficacy ◽

Care Needs ◽

Palliative Care Needs

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Dignity-conserving care for persons with palliative care needs — identifying outcomes studied in research: An integrative review

Palliative & Supportive Care ◽

10.1017/s1478951520000139 ◽

2020 ◽

Vol 18 (6) ◽

pp. 722-740 ◽

Cited By ~ 1

Author(s):

Annika Söderman ◽

Ulrika Östlund ◽

Carina Werkander Harstäde ◽

Karin Blomberg

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Integrative Review ◽

Future Research ◽

Healthcare Organizations ◽

Care Needs ◽

Study Protocols ◽

The Social ◽

Palliative Care Needs

AbstractObjectivesWith people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized.MethodsAn integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis.ResultsSeven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of “Performance, symptoms and emotional concerns” and “End-of-life and existential aspects”. Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as “Dignity-related distress” and “Quality of life” were common. However, the results lacked concrete communication outcomes.Significance of resultsThe results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

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Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient’s Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17155457 ◽

2020 ◽

Vol 17 (15) ◽

pp. 5457 ◽

Cited By ~ 1

Author(s):

Doris Y. P. Leung ◽

Helen Y. L. Chan ◽

Patrick K. C. Chiu ◽

Raymond S. K. Lo ◽

Larry L. Y. Lee

Keyword(s):

Quality Of Life ◽

Social Support ◽

Palliative Care ◽

Caregiver Burden ◽

Indirect Effect ◽

Self Efficacy ◽

Care Needs ◽

Positive Direct ◽

Palliative Care Needs

Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient’s quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family and friends) and the mediating role of caregiving self-efficacy on caregiver burden and patient’s quality of life. A convenience sample of 225 patient–caregiver dyads recruited between September 2016 and May 2017 from three hospitals in Hong Kong was included in the current analysis. Results showed that the final model provided a satisfactory fit (SRMR = 0.070, R-RMSEA = 0.055 and R-CFI = 0.926) with the data, as good as the hypothesized model did (p = 0.326). Significant associations were detected. Family support had a significant negative indirect effect on caregiver burden and a significant positive indirect effect on patient’s quality of life through caregiving self-efficacy, whereas friend support had a significant positive direct effect on caregiver burden but a minimal effect, if any, on patient’s quality of life. These findings emphasized (1) the importance of caregiving self-efficacy in improving caregiver burden and patient’s quality of life and that (2) sources of social support may be an important dimension moderating the associations of caregiving self-efficacy with caregiver burden and patient’s quality of life.

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Evaluating the feasibility, acceptability and potential effectiveness of complex nursing intervention focused on quality of life assessment on advanced cancer patients with palliative care needs

http://isrctn.com/ ◽

10.1186/isrctn41201864 ◽

2016 ◽

Author(s):

Gianluca Catania

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Nursing Intervention ◽

Life Assessment ◽

Advanced Cancer Patients ◽

Care Needs ◽

Quality Of Life Assessment ◽

Potential Effectiveness ◽

Palliative Care Needs

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Abstract 27: Impact of Telemonitoring on Health Status in Patients with Heart Failure

Circulation Cardiovascular Quality and Outcomes ◽

10.1161/circoutcomes.6.suppl_1.a27 ◽

2013 ◽

Vol 6 (suppl_1) ◽

Author(s):

Natalie Jayaram ◽

Harlan M Krumholz ◽

Sarwat I Chaudhry ◽

Jennifer Mattera ◽

Fengming Tang ◽

...

Keyword(s):

Quality Of Life ◽

Heart Failure ◽

Health Status ◽

Usual Care ◽

Primary Endpoint ◽

Kansas City ◽

Summary Score ◽

Care Group ◽

Patients With Heart Failure

Background: Although telemonitoring in patients with heart failure is not effective in reducing mortality or hospitalizations, less is known regarding its effect on patients’ health status, their symptoms, functioning and quality of life. Methods: The TeleHF study randomized 1,653 patients with recent heart failure hospitalization to telephonic monitoring (n=826) or usual care (n=827). Patients in the telemonitoring arm phoned in daily and responded to a series of automated questions regarding their symptoms and daily weight. Health status information, using the Kansas City Cardiomyopathy Questionnaire (KCCQ), was collected at baseline, 3 months, and at 6 months. The primary endpoint was change in KCCQ score from baseline to 3 and 6 months. Results: The baseline characteristics of the two treatment arms were similar; 42% were female and 39% were black. At baseline, there were no significant differences in KCCQ scores between the telemedicine and the usual care group. Both groups reported significant quality of life limitations with median KCCQ score of 59.9, and median scores of 75.0, 87.5 and 56.3 on the physical limitation, self-efficacy and social limitation subscales respectively. At 3 and 6 month follow-up, there were no significant differences between the two treatment groups with respect to the primary endpoint, change in KCCQ overall summary score or subscale scores from baseline (see table). Conclusion: Telemonitoring in a large group of patients with heart failure did not improve health status when compared to usual care. Failure to improve readmission or mortality rates combined with lack of effect on quality of life suggests that alternative solutions for management of this complex population should be sought.

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Palliative care needs-assessment and measurement tools used in patients with heart failure: a systematic mixed-studies review with narrative synthesis

Heart Failure Reviews ◽

10.1007/s10741-020-10011-7 ◽

2020 ◽

Vol 26 (1) ◽

pp. 137-155

Author(s):

Bader Nael Remawi ◽

Amy Gadoud ◽

Iain Malcolm James Murphy ◽

Nancy Preston

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Needs Assessment ◽

Assessment Tool ◽

Cochrane Library ◽

Patient Needs ◽

Care Needs ◽

Patients With Heart Failure ◽

Measurement Tools ◽

Palliative Care Needs

AbstractPatients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.

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