Quality Indicators For Palliative Care Research Articles

Development of care quality indicators for palliative care in China: A modified Delphi method study

ObjectiveWhile there are limited studies addressing palliative care quality in China, the availability of an effective set of care quality indicators is scarce. This study aimed to develop a comprehensive set of quality indicators for palliative care in China. MethodsConducting a systematic literature search across databases and guideline websites from inception to December 2020, combined with qualitative interviews, we established a preliminary pool of indicators. Subsequently, two rounds of Delphi expert consultation surveys were administered to 19 multidisciplinary experts (specializing in clinical nursing/medicine, nursing/medicine management, and health care administration, as well as those engaged in teaching and research) from 12 provinces in Mainland China (three each from North, East, and South China, and four from Central China) via email from March to June 2021. The analytic hierarchy process was employed to determine indicator weights. ResultsBoth rounds of expert consultation yielded a 100% positive coefficient, with expert authority coefficient values of 0.91 and 0.93, respectively. Kendall coefficient of concordance values for the two rounds were 0.148 and 0.253 (P < 0.001), indicating consensus among experts. Consequently, 71 quality indicators deemed important in the Chinese palliative care setting were identified, comprising 22 structure indicators, 35 process indicators, and 14 outcome indicators. ConclusionsThis study established an evidence-based set of quality indicators, addressing previously unmet needs and providing a novel approach to assessing and monitoring palliative care quality. Furthermore, ongoing refinement and integration with the evolving social context are warranted.

Quality measures for palliative care in patients living with cancer in low- and middle-income countries: a scoping review protocol

IntroductionQuality assessment is a critical component of determining the value of medical services, including palliative care. The utilisation of palliative care quality measures could assist in assessing the degree to which patients living with cancer conform to best practice of palliative care, identifying gaps and monitoring changes in cancer care delivery models in different setting. This scoping review aims to map the available data on the usage of palliative care quality indicators that are relevant to cancer patients in low- and middle-income countries (LMICs).MethodsTo structure this study, we will use the framework developed by Arksey and O’Malley, the Levac et al. recommendations and the Joanna Briggs Institute recommendations. We will search EBSCOHost, Web of Science, ProQuest One Academic, MEDLINE and Google Scholar for evidence on palliative care quality measures applicable for patients living with cancer published from inception till 2022. We will search grey literature in the form of dissertations, conference proceedings and websites of international organisations such as the World Health Organisation (WHO) reporting palliative care quality measures applicable to patients living with cancer in LMICs.DiscussionThe purpose of this study is to establish the extent of existing research on the palliative care quality measures in LMICs. Although palliative care is still a new phenomenon, understanding of the palliative care quality measures applicable for cancer patients will assist to improve care across all components of health systems.Ethics and disseminationNo ethical approval is required for the study as the data collection and results of the proposed scoping review will be conducted and disseminated electronically using peer-reviewed journals, print and presentations at scientific conferences and stakeholder presentations.

Quality indicators for palliative care in intensive care units: a systematic review.

Establishing appropriate quality assessment indicators for palliative care in intensive care units (ICUs) is vital. This systematic review summarizes the existing quality indicators (QIs) for palliative care in ICUs. It assesses the methodological quality of QI development to pave the way for more valid QIs. A literature search was conducted using MEDLINE, PsycINFO, CINAHL, Cochrane databases, and the Ichushi-web database for Japanese literature for all studies published until November 2021. The included QIs were drawn from the National Consensus Project for Quality Palliative Care (NCP) and the Donabedian model of quality. Methodological quality was assessed based on the appraisal of indicators through the research and evaluation tool. Five studies were included, from which 109 indicators were extracted: 78% were process indicators, 5% were outcome indicators, and 17% were structure indicators. The most common indicators addressed the palliative care domain of "ethical and legal aspects of care" (n=38, 30%). Another distinctive feature of some indicators was a focus on supporting ICU staff. Regarding methodological quality, the "scientific evidence" varied (11-89%). Most of the data on QI measures and data sources were obtained from a review of electronic medical records (EMRs). Administrative data also provided a few measurable indicators. Out of all the QIs covered in this review, most were process indicators, and only a few were outcome indicators. Ethical and legal aspects of care and support for the ICU staff emerged as unique to palliative care. Although the existing QIs can be used for palliative care in ICUs, more specific indicators are urgently needed. Continuous quality assessment and improvement, as well as the addition of more palliative care practices in ICUs, would provide further evidence and help develop valid QIs.

Palliative care need screening and specialised referrals fell during the COVID-19 pandemic: a nationwide register-based study

ObjectivesFew studies have examined whether access to, and quality of, specialised palliative care changed during the COVID-19 pandemic. This study investigated changes in access to and quality of specialised palliative...

Early palliative/supportive care in acute myeloid leukaemia allows low aggression end-of-life interventions: observational outpatient study

ObjectivesEarly palliative supportive care has been associated with many advantages in patients with advanced cancer. However, this model is underutilised in patients with haematological malignancies. We investigated the presence and...

Quality Indicators in Surgical Palliative Care: A Systematic Review

ContextDefining high quality palliative care in seriously ill surgical patients is essential to provide patient-centered surgical care. Quality indicators specifically for seriously ill surgical patients are necessary in order to integrate palliative care into existing surgical quality improvement programs. ObjectivesTo identify existing quality indicators that measure palliative care delivery in seriously ill surgical patients, characterize their development, and assess their methodological quality. MethodsA PRISMA-guided systematic review included studies that reported on the development process and characteristics of palliative care quality indicators and guidelines in adult surgical patients. Relevant measures were categorized into the previously defined National Consensus Project domains of palliative care and the Donabedian quality framework, and assessed for methodological quality. ResultsThere were 263 unique measures identified from 26 studies, of which 70% were process measures. Indicators addressing Care of the Patient Near the End of Life (31.5%) and Physical Aspects of Care (20.8%) were the most common. Indicators addressing Spiritual (2.6%) and Cultural Aspects of Care (1.2%) were the least common. Methodological quality varied widely across studies. Although most studies defined a purpose for the indicators and used scientific evidence, many studies lacked input from target populations and few had discussed the practical application of indicators. ConclusionThis review was a key step that informed efforts to develop quality indicators for seriously ill surgical patients. Few indicators addressed non-physical aspects of suffering and no indicators were identified addressing palliative surgery. Future attention is needed toward the development and practical application of palliative care quality indicators in surgical patients.

Pilot Study to Develop and Test Palliative Care Quality Indicators for Nursing Homes.

An increasingly frail population in nursing homes accentuates the need for high quality care at the end of life and better access to palliative care in this context. Implementation of palliative care and its outcomes can be monitored by using quality indicators. Therefore, we developed a quality indicator set for palliative care in nursing homes and a tailored measurement procedure while using a mixed-methods design. We developed the instrument in three phases: (1) literature search, (2) interviews with experts, and (3) indicator and measurement selection by expert consensus (RAND/UCLA). Second, we pilot tested and evaluated the instrument in nine nursing homes in Flanders, Belgium. After identifying 26 indicators in the literature and expert interviews, 19 of them were selected through expert consensus. Setting-specific themes were advance care planning, autonomy, and communication with family. The quantitative and qualitative analyses showed that the indicators were measurable, had good preliminary face validity and discriminative power, and were considered to be useful in terms of quality monitoring according to the caregivers. The quality indicators can be used in a large implementation study and process evaluation in order to achieve continuous monitoring of the access to palliative care for all of the residents in nursing homes.

Elderly gynaecological cancer patients at risk for poor end of life care: a population-based study from the Swedish Register of Palliative Care

Introduction: Poorer end-of-life (EOL) care for elderly cancer patients has been reported. We assessed the impact of age on 13 indicators for the quality of EOL care as well as adherence to 6 national quality indicators in gynaecological cancer patients.Methods: Age-dependent differences in 13 palliative care quality indicators were studied in gynaecological cancer patients registered in the population-based Swedish Register of Palliative Care. Association between the patient’s age and each quality indicator was analyzed by logistic regression, adjusted for place of death where appropriate. Adherence to six national quality indicators determined by the Swedish National Board of Health and Welfare was estimated in all patients.Results: We included 3940 patients with the following age distribution: 1.6% were 18–39 years of age, 12.3% 40–59 years, 37.2% 60–74 years, 28.9% 75–84 years and 20% were ≥85 years. Age-dependent differences in implementation rate were present for some of the 13 quality indicators. Compared to elderly cancer patients, younger patients were more likely to be cared for by a specialized palliative care service, more often informed about imminent death as well as assessed for pain. For most national quality indicators, the goal level was not met. Only for the ‘on demand prescription for pain’, the goal level was reached.Conclusions: EOL care did not meet national quality indicators in this population-based data from Sweden, in particular in the elderly population. Elderly gynaecological cancer patients are at high risk of poorer EOL care without the involvement of specialized palliative care services. Palliative care services need to be implemented across all institutions of EOL care to ensure good and equal care.

Development and Practical Test of Quality Indicators for Palliative Care in Patients With Chronic Heart Failure.

Palliative care is highly relevant for patients with heart failure (HF), and there is a need for quantitative information on quality of care. Accordingly, this study aimed to develop a set of quality indicators (QIs) for palliative care of HF patients, and to conduct a practical pilot measurement of the proposed QIs in clinical practice.Methods and Results:We used a modified Delphi technique, a consensus method that involves a comprehensive literature review, face-to-face multidisciplinary panel meeting, and anonymous rating in 2 rounds. A 15-member multidisciplinary expert panel individually rated each potential indicator on a scale of 1 (lowest) to 9 (highest) for appropriateness. All indicators receiving a median score ≥7 without significant disagreement were included in the final set of QIs. Through the consensus-building process, 35 QIs were proposed for palliative care in HF patients. Practical measurement in HF patients (n=131) from 3 teaching hospitals revealed that all of the proposed QIs could be obtained retrospectively from medical records, and the following QIs had low performance (<10%): "Intervention by multidisciplinary team", "Opioid therapy for patients with refractory dyspnea", and "Screening for psychological symptoms". The first set of QIs for palliative care of HF patients was developed and could clarify quantitative information and might improve the quality of care.

Construction of palliative care quality indicators for cancer hospital

Objective To develop an effective and practical palliative care quality indicators for cancer hospital, to provide basis for standardizing palliative care and to realize the systematization and standardization of palliative care quality evaluation in cancer hospitals. Methods Based on constructure-process-outcome quality paradigm, a palliative care quality evaluation system for cancer hospital was constructed preliminarily. The system was finally confirmed by two-round Delphi expert consultation. The reliability and representativeness of expert advice were tested by using the indicators of concentration, coordination, positive coefficient and authority coefficient of expert advice. Results Totally 19 experts in palliative care were involved in the study. The consultation response rate was 95% for round one, and 100% for round two. The authority coefficient was 0.82, and the Kendal's coefficient of concordance was 0.395 for round one and 0.425 for round two. The final evaluation system contains 3 domains, 14 subdimensions, and 45 items. Conclusions The consensus of experts is reliable, which can be confirmed from involvement and authority of experts. The final evaluation system states distinguish features of palliative care. Key words: Nursing management research; Cancer hospital; Palliative care; Indicators; Delphi method

A Survey to Evaluate Facilitators and Barriers to Quality Measurement and Improvement: Adapting Tools for Implementation Research in Palliative Care Programs

ContextAlthough critical for improving patient outcomes, palliative care quality indicators are not yet widely used. Better understanding of facilitators and barriers to palliative care quality measurement and improvement might improve their use and program quality. ObjectivesDevelopment of a survey tool to assess palliative care team perspectives on facilitators and barriers to quality measurement and improvement in palliative care programs. MethodsWe used the adapted Consolidated Framework for Implementation Research to define domains and constructs to select instruments. We assembled a draft survey and assessed content validity through pilot testing and cognitive interviews with experts and frontline practitioners for key items. We analyzed responses using a constant comparative process to assess survey item issues and potential solutions. We developed a final survey using these results. ResultsThe survey includes five published instruments and two additional item sets. Domains include organizational characteristics, individual and team characteristics, intervention characteristics, and process of implementation. Survey modules include Quality Improvement in Palliative Care, Implementing Quality Improvement in the Palliative Care Program, Teamwork and Communication, Measuring the Quality of Palliative Care, and Palliative Care Quality in Your Program. Key refinements from cognitive interviews included item wording on palliative care team members, programs, and quality issues. ConclusionThis novel, adaptable instrument assesses palliative care team perspectives on barriers and facilitators for quality measurement and improvement in palliative care programs. Next steps include evaluation of the survey's construct validity and how survey results correlate with findings from program quality initiatives.

Regional engagement to define, report, and use quality metrics to improve palliative care in oncology.

282 Background: Palliative care in oncology encompasses a wide array of care, and optimal performance metrics remain uncertain. To address this issue we held a regional meeting that included patient advocates, clinicians, private and public payers and researchers to identify quality indicators for palliative care, discuss palliative care (PC) quality measurement in the region, review preliminary results and metrics for PC, and identify opportunities to improve care. Methods: Regional experts facilitated discussions. Data was presented from a regional insurance claims-cancer registry linked database. Participants were asked to: discuss and prioritize interventions to improve palliative care in oncology and create metric dashboards for healthcare providers. Results: Oncology-specific recommendations for interventions: early and continuous palliative care discussions from diagnosis through EOL; training existing care team on palliative care conversations, through standard certification programs; pair patients with an experienced patient/patient advocate; educate caregivers, patients and providers respectively on how to communicate about PC and care choices; and patient navigation to manage symptoms of advanced cancer. Feedback on prioritization of palliative care/EOL metrics: see Table. Conclusions: A multi-stakeholder approach can be effective for developing metrics and interventions to improve palliative care by providing an understanding of the information needs of the community. [Table: see text]

Methodological Research Priorities in Palliative Care and Hospice Quality Measurement

Quality measurement is a critical tool for improving palliative care and hospice, but significant research is needed to improve the application of quality indicators. We defined methodological priorities for advancing the science of quality measurement in this field based on discussions of the Technical Advisory Panel of the Measuring What Matters consensus project of the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association and a subsequent strategy meeting to better clarify research challenges, priorities, and quality measurement implementation strategies. In this article, we describe three key priorities: 1) defining the denominator(s) (or the population of interest) for palliative care quality indicators, 2) developing methods to measure quality from different data sources, and 3) conducting research to advance the development of patient/family-reported indicators. We then apply these concepts to the key quality domain of advance care planning and address relevance to implementation of indicators in improving care. Developing the science of quality measurement in these key areas of palliative care and hospice will facilitate improved quality measurement across all populations with serious illness and care for patients and families.

Measuring What Matters: Top-Ranked Quality Indicators for Hospice and Palliative Care From the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association

ContextMeasuring quality of hospice and palliative care is critical for evaluating and improving care, but no standard U.S. quality indicator set exists. ObjectivesThe Measuring What Matters (MWM) project aimed to recommend a concise portfolio of valid, clinically relevant, cross-cutting indicators for internal measurement of hospice and palliative care. MethodsThe MWM process was a sequential consensus project of the American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA). We identified candidate indicators mapped to National Consensus Project (NCP) Palliative Care Guidelines domains. We narrowed the list through a modified Delphi rating process by a Technical Advisory Panel and Clinical User Panel and ratings from AAHPM and HPNA membership and key organizations. ResultsWe narrowed the initial 75 indicators to a final list of 10. These include one in the NCP domain Structure and Process (Comprehensive Assessment), three in Physical Aspects (Screening for Physical Symptoms, Pain Treatment, and Dyspnea Screening and Management), one in Psychological and Psychiatric Aspects (Discussion of Emotional or Psychological Needs), one in Spiritual and Existential Aspects (Discussion of Spiritual/Religious Concerns), and three in Ethical and Legal Aspects (Documentation of Surrogate, Treatment Preferences, and Care Consistency with Documented Care Preferences). The list also recommends a global indicator of patient/family perceptions of care, but does not endorse a specific survey instrument. ConclusionThis consensus set of hospice and palliative care quality indicators is a foundation for standard, valid internal quality measurement for U.S. settings. Further development will assemble implementation tools for quality measurement and benchmarking.

Early integration of palliative care in patients with pancreatic cancer: A retrospective study for quality improvement.

72 Background: Many patients with pancreatic cancer receive palliative care only at the end of life despite the fact that the course of illness is plagued with physical, emotional symptoms and existential distress. There is strong evidence that combining palliative care with standard cancer treatment improves quality of life for those patients with in metastatic cancer and in some cases can help extend survival. Early incorporation of palliative care for patients with incurable cancer is an important focus for quality improvement. Methods: The purpose of this quality improvement study was to describe quality indicators for palliative care, and discover when palliative care was introduced during the course of illness in patients with pancreatic cancer. Domains of palliative care identified by the National Consensus Project and the National Quality Framework, provided the framework for this study. A retrospective medical record review of patients with pancreatic cancer treated at the Dana-Farber Cancer Institute (DFCI) between January 2009 to December 2011 was conducted. Time variables relevant to disease course, and palliative care referrals were collected. Other key variables included: the reason for, and frequency and timing of, palliative care discussions. Results: Medical records from 150 DFCI patients were reviewed in which the mean length of care from first visit to last note (typically death) was 414 days (SD=347). 52 (35%) records included documentation of a palliative care discussion and the majority of those occurred at the time of disease progression. Prognosis discussions were documented after a mean 177 (SD=285) days and a palliative care consult was made on average at day 343 (SD=301). Of those consults, the large majority (82%) were requested for symptom management. Conclusions: Despite evidence and standards of care that support early palliative care discussions and subsequent referrals for palliative care consults, these findings suggest such events occurred late in the trajectory and care of patients with pancreatic cancer. Future quality work and training will address provider and health system variables that can promote discussions and consults.

Quality indicators for palliative care services: Mixed-method study testing for face validity, feasibility, discriminative power and usefulness

Background: In the absence of a standardized, comprehensive and valid set of quality indicators for palliative care, we developed one for palliative care services in Belgium. Aim: This study evaluates its face validity, feasibility, discriminative power and usefulness. Design: We combined a quantitative analysis evaluating the answers with qualitative interviews with the contact persons of all participating services. Setting: The quality indicator set was implemented in nine palliative care services in Belgium involving a measurement procedure with questionnaires to the patients of the services, their professional caregivers, family carers and physicians. Results: The response rate was 56% for patients, 97% for caregivers, 56% for family carers and 65% for physicians, indicating good feasibility of the measurement procedure. During the interviews, caregivers found the indicator scores valid and none was extremely skewed, confirming their discriminative power. Still, 20 of the 80 indicators showed problems of feasibility and 5 of usefulness. One was discarded and the others were improved by changing either the formulation of the indicator or the questions used. Most participants expressed a desire for a smaller but still comprehensive set. Conclusion: Based on the results, minor adjustments were made to individual indicators, to the measurement tools and to the procedure used; the quality indicators are now ready for further evaluation and use across palliative care services in Belgium. As soon as these indicators are being used systematically, it will be possible to demonstrate and compare quality at the national and international levels and to evaluate improvement initiatives.

Towards a standardized method of developing quality indicators for palliative care: protocol of the Quality indicators for Palliative Care (Q-PAC) study

BackgroundIn recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive and valid quality indicator set which can contribute to a standardized method for use in other countries.Methods and designFirstly, an extensive literature review identified existing international quality indicators and relevant themes for measuring quality in palliative care. Secondly, the most relevant of these were selected by an expert panel. Thirdly, those prioritized by the experts were scored by a second multidisciplinary expert panel for usability and relevance, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included carers and policymakers as well as patients and next-of-kin. Fourthly, the draft set was tested and evaluated in practice for usability and feasibility; the indicators were then translated into questionnaires presented to patients, next-of-kin and care providers. To encourage the acceptance and use of the indicators, stakeholders, including national palliative care organizations, were involved throughout the whole project.ConclusionOur indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings. The set includes patient and relative perspectives and includes outcome, process and structure indicators. Our method can contribute internationally to a more standardized and rigorous approach to developing quality indicators for palliative care.

European model of palliative care for dementia: Study protocol

IntroductionDespite increasing attention in the past decade there is still little published work on palliative care (PC) and dementia. There is consensus that there is a need to improve the...

Palliative care quality indicators in Italy. What do we evaluate?

In recent years, the number of palliative service providers has increased significantly. This expansion necessitates an evaluation in order to provide the basis for quality improvement of the care. Policymakers, managers of palliative care programs, and others committed to the improvement of end-of-life care need methods and criteria to measure and evaluate the care delivered. As quality measurement is expensive and difficult to undertake, it is fundamental that quality measures evaluate the right things. Quality evaluation in Italy is supported by health authorities who have developed some indicators of palliative care. The aims of this study were to give an overview of these indicators. We analyzed all palliative care indicators developed by Italian national authorities from 2000 to the present. These indicators have been divided into three different levels of analysis (structure, process, and outcome). Subsequently, two reviewers have independently compared their degree of concordance with domains, and guidelines developed by the NCP for palliative care and after careful discussion an expert panel has elaborated a final consensus document. Most of the quality indicators analyzed deal with the structure and process of palliative care, however they miss outcomes and do not cover domains mainly concerned with spiritual, ethical, cultural, or existential aspects of care. More attention should be paid to the development of outcome indicators of palliative care. The attempt to identify a group of indicators which cover every domain of palliative care represents a challenge for the future in terms of finding new cognitive models more oriented toward subjectivity.

A New Set of Quality Indicators for Palliative Care: Process and Results of the Development Trajectory

In some countries (the United States in particular), quality indicators for palliative care have already been developed. However, these quality indicators often cover one specific setting or target group, for example, palliative cancer care or palliative home care. This article describes the development and initial testing of a set of quality indicators for palliative care, applicable for all settings in which palliative care is being provided for adult patients in The Netherlands. In the first phase of the project, an inventory was made of existing relevant quality indicators. Most quality indicators focused on the process or outcome of palliative care, and quality indicators for the structure of palliative care were rare. Most of the existing quality indicators fall within the domain of physical care, and very few concern the social and spirituals domains of palliative care. In the second phase, a new draft set of quality indicators was developed. In addition to the previous inventory of existing indicators, interviews with patients, relatives, and caregivers provided input for the development of the draft set. Drafts of the set were tested among experts. In the third phase, the feasibility and usability of a draft set was established in 14 Dutch care organizations providing palliative care. As a result of these phases, a set of quality indicators for palliative care has been developed, consisting of 33 indicators for palliative patient care and 10 indicators for support for relatives before and/or after the patient's death.