scholarly journals Evaluating Palliative Care—A Review of the Literature

2009 ◽  
Vol 3 ◽  
pp. PCRT.S2178
Author(s):  
Hubert R. Jocham RN ◽  
Theo Dassen ◽  
Guy Widdershoven ◽  
Ruud Halfens

The purpose of this article was to investigate the outcome measures developed and used in palliative care. The paper involved a literature review of published research. Many of the reviewed papers concluded similarly that there was lack of good quality evidence on which to base conclusions. More high quality evidence is needed to compare the relative merits of the differences in models of palliative care services, so that we can learn from other appropriate systems of care at end of life. It follows that quality of life is the main outcome of palliative care, in which the patient instead of the disease represents the target of the clinical approach. Patients struggling with serious illness have other concerns, including managing pain and other symptoms, coordinating care among multiple providers and settings, ensuring that treatments reflect preferences and balance benefits and harms as well as clinical appropriateness, achieving empathic communication and care, fostering well-being, maintaining function and practically supporting family and caregivers through illness and bereavement.

2002 ◽  
Vol 18 (2) ◽  
pp. 77-83 ◽  
Author(s):  
Danielle M Goodwin ◽  
Irene J. Higginson ◽  
Adrian G.K. Edwards ◽  
Ilora G. Finlay ◽  
Alison M. Cook ◽  
...  

This review aimed to identify and appraise all systematic reviews of palliative care services, to examine their findings in relation to methods used, and to explore whether further methods such as meta-analysis and meta-regression may be worthwhile. Ten databases were searched and augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Five systematic reviews met the inclusion criteria, and the update electronic search identified a further systematic review which found similar studies. A total of 39 studies were identified by the five systematic reviews. Of the 39 studies, 15 were RCTS, and 12 of those were North American. In comparison, the majority of U.K. studies were retrospective. Each review concluded similarly that there was a lack of good quality evidence on which to base conclusions. The more recent reviews were more rigorous, but none used a quantitative analysis. Despite the difficulties in combining heterogeneous interventions and outcomes in meta-analysis or meta-regression, such techniques may be valuable. More high quality evidence is needed to compare the relative merits of the differences in models of palliative care services, so that countries can learn from other appropriate systems of care at end of life.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 788-788
Author(s):  
Daniel David ◽  
Abraham Brody ◽  
Tina Sadarangani ◽  
Bei Wu ◽  
Tara Cortez

Abstract Many residents of Assisted Living (AL) confront serious illness and therefore might benefit from greater access to Palliative Care Services to improve quality of life. We surveyed resident records and AL nursing staff to identify patients in need of Palliative Care. Preliminary findings showed that nurses predicted 23% would not be alive and 49% would no longer live in AL. A majority of residents were over the age of 90, yet 30% did not have a reported code status. These findings suggest that a substantial portion of AL residents may have unmet needs with respect to palliative care. Future interventions are needed to support advance care planning conversations and make palliative care more accessible to this population.


2000 ◽  
Vol 3 (2) ◽  
pp. 229-236 ◽  
Author(s):  
Irene J. Higginson ◽  
Anna L. Romer

2010 ◽  
Vol 34 (2) ◽  
pp. 186 ◽  
Author(s):  
Kathy Eagar ◽  
Prue Watters ◽  
David C. Currow ◽  
Samar M. Aoun ◽  
Patsy Yates

Australia is leading the way in establishing a national system (the Palliative Care Outcomes Collaboration – PCOC) to measure the outcomes and quality of specialist palliative care services and to benchmark services across the country. This article reports on analysis of data collected routinely at point-of-care on 5939 patients treated by the first fifty one services that voluntarily joined PCOC. By March 2009, 111 services have agreed to join PCOC, representing more than 70% of services and more than 80% of specialist palliative care patients nationally. All states and territories are involved in this unique process that has involved extensive consultation and infrastructure and close collaboration between health services and researchers. The challenges of dealing with wide variation in outcomes and practice and the progress achieved to date are described. PCOC is aiming to improve understanding of the reasons for variations in clinical outcomes between specialist palliative care patients and differences in service outcomes as a critical step in an ongoing process to improve both service quality and patient outcomes. What is known about the topic?Governments internationally are grappling with how best to provide care for people with life limiting illnesses and how best to measure the outcomes and quality of that care. There is little international evidence on how to measure the quality and outcomes of palliative care on a routine basis. What does this paper add?The Palliative Care Outcomes Collaboration (PCOC) is the first effort internationally to measure the outcomes and quality of specialist palliative care services and to benchmark services on a national basis through an independent third party. What are the implications for practitioners?If outcomes and quality are to be measured on a consistent national basis, standard clinical assessment tools that are used as part of everyday clinical practice are necessary.


2013 ◽  
Vol 2 (2) ◽  
pp. 5-15
Author(s):  
Riawati Jahja

Trials have demonstrated improvement in patients’ quality of life through palliative care services (PCS). However, many of these trials are limited by their research methodologies. PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL) were searched to conduct a systematic review of review articles related to PCS from January 2001 to December 2011. The paper examined evidence from studies on PCS that aimed to improve elderly patients’ end-of-life outcomes by i) systematically reviewing literature on models of palliative care (PC) delivery patients received; ii) exploring methodological issues surrounding recruitment of the patients, implementation of the studies and comparison of health care services; and iii) addressing the costs of care with/without a palliative program. Seventeen trials and three observational studies were selected from nine systematic review articles. Overall, early introduction of PC to patients following identification of their life-limiting conditions and needs re-quires an organized and coordinated care approach to ensure accessibility of these services. The ideal system that offers the potential of improving patients’ quality of life is one that is integrated, interdisciplinary and holistic. Dying is commonly institutionalized; however, providing outreach programs that allow patients to die at their place of wish, such as domiciliary care, offers the potential of addressing the issue of ever-increasing health-care expenditure for the aged. However, further investigation is needed to evaluate the cost effectiveness of these programs. Methodological problems and ethical issues surrounding the study of terminally-ill patients necessitate that researchers use a combination of observational studies and surveillance system over time. DOI: http://dx.doi.org/10.3329/seajph.v2i2.15937 South East Asia J Public Health | Jul-Dec 2012 | Vol 2 Issue 2 | 5-15


2019 ◽  
Author(s):  
Leslye Rojas-Concha ◽  
Maiken Bang Hansen ◽  
Morten Aagaard Petersen ◽  
Mogens Groenvold

Abstract Background: The assessment of patients’ quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care.Methods: This cross-sectional study was conducted from October to November 2017 in four palliative care services. Patients with advanced cancer and health care professionals (HCPs) were invited to individual interviews to determine the relevance, appropriateness and relative importance of the 30 items of the QLQ-C30 for evaluating the outcome of palliative care, and whether relevant additional issues should be included. Results: A total of 48 patients and 35 HCPs participated. The most important dimensions selected were pain, physical functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, and social functioning. Qualitative data identified important additional issues not covered by the questionnaire such as satisfaction with care, emotions and psychological support, as well as linguistic issues in the dyspnea and constipation items. Conclusions: The EORTC QLQ-C15-PAL showed good content validity in the assessment of symptoms and QOL of advanced cancer patients; therefore, we recommend the use of this questionnaire in palliative care in Chile. Dyspnea and constipation items were revised by the EORTC group. More research is needed to add a social dimension for a comprehensive assessment of patients’ QOL.


2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Leslye Rojas-Concha ◽  
Maiken Bang Hansen ◽  
Morten Aagaard Petersen ◽  
Mogens Groenvold

Abstract Background The assessment of patients’ quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care. Methods This cross-sectional study was conducted from October to November 2017 in four palliative care services. Patients with advanced cancer and health care professionals (HCPs) were invited to individual interviews to determine the relevance, appropriateness and relative importance of the 30 items of the QLQ-C30 for evaluating the outcome of palliative care, and whether relevant additional issues should be included. Results A total of 48 patients and 35 HCPs participated. The most important dimensions selected were pain, physical functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, social functioning, lack of appetite, role functioning and constipation. Qualitative data identified important additional issues not covered by the questionnaire such as satisfaction with care, emotions and psychological support, as well as linguistic issues in the dyspnea and constipation items. Conclusions The EORTC QLQ-C15-PAL showed good content validity in the assessment of symptoms and QOL of advanced cancer patients; therefore, we recommend the use of this questionnaire in palliative care in Chile. Dyspnea and constipation items were revised by the EORTC group. More research is needed to add a social dimension for a comprehensive assessment of patients’ QOL.


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