Background: Although recent attention to palliative care for patients with cardiovascular diseases has been increasing, there are no specific recommendations on detailed palliative care practices. We proceed on a discussion of the appropriateness and applicability of potential quality indicators for acute cardiovascular diseases according to our previous systematic review.
Methods: We created a multidisciplinary panel of 20 team members and 7 external validation clinicians composed of clinical cardiologists, a nutritionist, a physiotherapist, a clinical psychologist, a critical and emergent care specialist, a catheterization specialist, a primary care specialist, a palliative care specialist, and nurses. After crafting potential indicators, we performed a Delphi rating, ranging from “1 = minimum” to “9 = maximum”. The criterion for the adoption of candidate indicators was set at a total mean score of seven or more. Finally, we subcategorized these indicators into several domains by using exploratory factor analysis.
Results: Sixteen of the panel members (80%) were men (age, 49.5 ± 13.7 years old). Among the initial 32 indicators, consensus was initially reached on total 23 indicators (71.8%), which were then summarized into 21 measures by selecting relatively feasible time variations. The major domains were “symptom palliation” and “supporting the decision-making process”. Factor analysis could not find optimal model. Narratively-developed seven sub-categories included “presence of palliative care team”, “patient-family relationship”, “multidisciplinary team approach”, “policy of approaching patients”, “symptom screening and management”, “presence of ethical review board”, “collecting and providing information for decision-maker”, and “determination of treatment strategy and the sharing of the care team’s decision”.
Conclusion: In this study we developed 21 quality indicators, which were categorized into 2 major domains and 7 sub-categories. These indicators might be useful for many healthcare providers in the initiation and enhancement of palliative care practices for acute cardiovascular diseases in Japan.
OBJECTIVE: To validate conceptual and operational definitions of Symptom control (1608) indicators for patients with cardiac diseases in palliative care.
METHOD: Definitions were established through a literature review and were validated by consensus among expert nurses. Two rounds of the Delphi method and a meeting with experts were carried out in order to validate the definitions for the indicators and for the magnitude of response for each indicator.
RESULTS: Conceptual and operational definitions for Symptom control (1608) indicators and for the magnitude of response for each indicator were validated.
CONCLUSIONS: All conceptual and operational definitions of 11 indicators of the nursing outcome Symptom control (1608) were validated by experts. Content and clinical validation studies remain necessary to verify the capacity of the indicators to measure the effectiveness of nursing interventions in clinical practice and research.
BACKGROUND: No study has yet been performed on the importance of the rate of pure "attended deaths at home," excluding examined deaths subjected to a postmortem examination. Therefore, in the present study, we investigated actual state of pure "attended deaths at home," in order to provide reference data for the future development of end-of-life care at home.
METHODS: We performed a detailed survey in Yokohama City according to the type of death, age, and underlying cause of death in cases of home deaths, based on the detailed version of the Vital Statistics Survey Death Forms. Then, we divided deaths occurring in each municipality in Kanagawa Prefecture into two categories: "examined deaths" or "attended deaths," which were also stratified by the place of death, based on the Vital Statistics, and data on number of death cases subjected to postmortem examination from the Kanagawa Prefectural Police Headquarters.
RESULTS: In 2013, the survey in Yokohama City showed large differences in age distribution and cause of death between examined and attended deaths. In 2014, home deaths accounted for 15.7% of all deaths in the prefecture, whereas the overall proportion of attended deaths at home was 6.9%.
CONCLUSIONS: We should utilize the rate of pure "attended deaths at home" for objective outcome indicator.
The identification of death is critical for epidemiological research. Despite recent developments in health insurance claims databases, the quality of death information in claims is not guaranteed because health insurance claims are collected primarily for reimbursement. We aimed to examine the usefulness and limitations of death information in claims data and to examine methods for improving the quality of death information for aged persons.
We used health insurance claims data and enrollment data (as the gold standard) from September 2012 through August 2015 for nondependent persons aged 65–74 years enrolled in Japanese workplace health insurance. Overall, 3,710,538 insured persons were registered in the database during the study period. We analyzed 45,441 eligible persons. Inpatient and outpatient deaths were identified from the discharge/disease status in the claims, with sensitivities of 94.3% and 47.4%, specificities of 98.5% and 99.9%, and PPVs of 96.3% and 95.7%, respectively, using enrollment data as the gold standard. For outpatients, death defined as a combination of disease status and charge data for terminal care still indicated low sensitivity (54.7%).
The validity of death information in inpatient claims was high, suggesting its potential usefulness for identifying death. However, given the low sensitivity for outpatient deaths, the use of death information obtained solely from records in outpatient claims is not recommended.
CONTEXT: Palliative care is gaining ground globally and is endorsed in high level policy commitments, but service provision, supporting policies, education and funding are incommensurate with rapidly growing need.
OBJECTIVES: To describe current levels of global palliative care development and report on changes since 2006.
METHODS: An online survey of experts in 198 countries generated 2017 data on 10 indicators of palliative care provision, fitted to six categories of development. Factor analysis and discriminant analysis showed the validity of the categorization. Spearman correlation analyses assessed the relationship with World Bank Income Level (WBIL), Human Development Index (HDI) and Universal Health Coverage (UHC).
RESULTS: Numbers (percentages) of countries in each development category were: 1) no known palliative care activity 47 (24%); 2) capacity-building 13 (7%); 3a) isolated provision 65 (33%); 3b) generalized provision 22 (11%); 4a) preliminary integration into mainstream provision 21 (11%); 4b) advanced integration 30 (15%). Development levels were significantly associated with WBIL (rS= 0·4785), UHC (rS=0·5558) and HDI (rS=0·5426) with p < 0.001. Net improvement between 2006-2017 saw 32 fewer countries in categories 1/2, 16 more countries in 3a/3b, and 17 more countries in 4a/4b.
CONCLUSION: Palliative care at the highest level of provision is available for only 14% of the global population and is concentrated in European countries. An 87% global increase in serious health related suffering amenable to palliative care interventions is predicted by 2060. With need rising, palliative care is not reaching the levels required by at least half the global population.
CONTEXT: Chronic pain (CP) is a major concern in cancer survivors. Often underreported by patients, it is both under-assessed and undertreated by care providers.
OBJECTIVES: To assess CP prevalence and related treatment in cancer survivors five years after diagnosis; to identify factors associated with prescribing opioids among survivors with CP, focusing on access to palliative care (PC).
METHODS: In 2015-2016, we interviewed 4,174 French patients diagnosed with cancer five years previously. Combining patient and clinical reported outcomes together with medico-administrative data, we studied factors associated with Step II and Step III opioid prescription in cancer survivors with CP. We performed multinomial logistic regression adjusting for various covariates, including self-reported health status variables and inpatient PC.
RESULTS: Five years after cancer diagnosis, 63.5% of the respondents reported current chronic pain (CP) (i.e., pain = 3 months). Of these, 64.6% and 14.4% were prescribed at least one Step II or Step III opioid, respectively. Only 1.9% had had inpatient PC since diagnosis. After adjustment for age, gender, clinical and self-reported variables, we found that the latter were more likely to receive Step III opioids (adjusted Relative Risk ratio: 5.33; 95% CI: 1.15, 24.58).
CONCLUSIONS: This study showed a high prevalence of CP five years after cancer diagnosis. Step III opioids were underprescribed but positively associated with inpatient PC. PC access in France remains limited, especially among cancer survivors. Integrating PC in oncology is essential to provide the best cancer-related symptoms management.
Importance: Improving the quality of cancer care is an international priority. Population-based quality indicators (QIs) are key to this process yet remain almost exclusively used for evaluating care during the early, often curative, stages of disease.
Objectives: To identify all existing QIs for the care of patients with cancer who have advanced disease and/or are at the end of life and to evaluate each indicator's measurement properties and appropriateness for use.
Evidence Review: For this systematic review, 5 electronic databases (MEDLINE, Embase, CINAHL, PsycINFO, and the Cochrane Library) were searched from inception through February 4, 2019, for studies describing the development, review, and/or testing of QIs for the care of patients with cancer who have advanced disease and/or are at the end of life. For each QI identified, descriptive information was extracted and 6 measurement properties (acceptability, evidence base, definition, feasibility, reliability, and validity) were assessed using previously established criteria, with 4 possible ratings: positive, intermediate, negative, and unknown. Ratings were collated and each QI classified as appropriate for use, inappropriate for use, or of limited testing. Among the QIs determined as appropriate for use, a recommended shortlist was generated by excluding those that were specific to patient subgroups and/or care settings; related QIs were identified, and the indicator with the highest rating was retained.
Findings: The search yielded 7231 references, 35 of which (from 28 individual studies) met the eligibility criteria. Of 288 QIs extracted (260 unique), 103 (35.8%) evaluated physical aspects of care and 109 (37.8%) evaluated processes of care. Quality indicators relevant to psychosocial (18 [6.3%]) or spiritual and cultural (3 [1.0%]) care domains were limited. Eighty QIs (27.8%) were determined to be appropriate for use, 116 (40.3%) inappropriate for use, and 92 (31.9%) of limited testing. The measurement properties with the fewest positive assessments were acceptability (38 [13.2%]) and validity (63 [21.9%]). Benchmarking data were reported for only 16 QIs (5.6%). The final 15 recommended QIs came from 6 studies.
Conclusions and Relevance: The findings suggest that only a small proportion of QIs developed for the care of patients with cancer who have advanced disease and/or are at the end of life have received adequate testing and/or are appropriate for use. Further testing may be needed, as is research to establish benchmarking data and to expand QIs relevant to psychosocial, cultural, and spiritual care domains.
Despite advances in the management of hematologic malignancies, a significant proportion of patients die of their disease. We used administrative databases in Ontario, Canada (between 2005 and 2013) to determine the number of days spent at home in the last 6 months of life. We studied the predictors of the median number of days at home (DAH) using quantile regression. For the 11,127 patients with hematologic malignancies who died, the median number of DAH in the last 6 months was 156 days. Patients with acute leukemias (p < .0001), women (p < .0001), and those requiring transfusions (p < .0001) spent the fewest DAH. Patients assessed by palliative care prior to their last 6 months were likely to spend more time at home (p < .0001). Providing additional supports for patients nearing the end of life, including earlier access to palliative care and continued transfusion support, may increase the likelihood that patients can die at home.
Importance: Early palliative care interventions drive high-value care but currently are underused. Health care professionals face challenges in identifying patients who may benefit from palliative care.
Objective: To develop a deep learning algorithm using longitudinal electronic health records to predict mortality risk as a proxy indicator for identifying patients with dementia who may benefit from palliative care.
Design, Setting, and Participants: In this retrospective cohort study, 6-month, 1-year, and 2-year mortality prediction models with recurrent neural networks used patient demographic information and topics generated from clinical notes within Partners HealthCare System, an integrated health care delivery system in Boston, Massachusetts. This study included 26 921 adult patients with dementia who visited the health care system from January 1, 2011, through December 31, 2017. The models were trained using a data set of 24 229 patients and validated using another data set of 2692 patients. Data were analyzed from September 18, 2018, to May 15, 2019.
Main Outcomes and Measures: The area under the receiver operating characteristic curve (AUC) for 6-month and 1- and 2-year mortality prediction models and the factors contributing to the predictions.
Results: The study cohort included 26 921 patients (16 263 women [60.4%]; mean [SD] age, 74.6 [13.5] years). For the 24 229 patients in the training data set, mean (SD) age was 74.8 (13.2) years and 14 632 (60.4%) were women. For the 2692 patients in the validation data set, mean (SD) age was 75.0 (12.6) years and 1631 (60.6%) were women. The 6-month model reached an AUC of 0.978 (95% CI, 0.977-0.978); the 1-year model, 0.956 (95% CI, 0.955-0.956); and the 2-year model, 0.943 (95% CI, 0.942-0.944). The top-ranked latent topics associated with 6-month and 1- and 2-year mortality in patients with dementia include palliative and end-of-life care, cognitive function, delirium, testing of cholesterol levels, cancer, pain, use of health care services, arthritis, nutritional status, skin care, family meeting, shock, respiratory failure, and swallowing function.
Conclusions and Relevance: A deep learning algorithm based on patient demographic information and longitudinal clinical notes appeared to show promising results in predicting mortality among patients with dementia in different time frames. Further research is necessary to determine the feasibility of applying this algorithm in clinical settings for identifying unmet palliative care needs earlier.
Background: When capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden.
Aim: To determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured.
Design: An international expert consensus workshop using nominal group technique. Data were analysed descriptively, and weighted according to ranking (1–5, lowest to highest priority) of domains. Participants’ rationales for their choices were analysed thematically.
Setting/participants: In all, 33 clinicians and researchers working globally in palliative care outcome measurement participated. Two groups (n = 16; n = 17) answered one question each (either on domains or optimal timing). This workshop was conducted at the 9th World Research Congress of the European Association for Palliative Care in 2016.
Results: Participants’ years of experience in palliative care and in outcome measurement ranged from 10.9 to 14.7 years and 5.8 to 6.4 years, respectively. The mean scores (weighted by rank) for the top-ranked domains were ‘overall wellbeing/quality of life’ (2.75), ‘pain’ (2.06), and ‘information needs/preferences’ (2.06), respectively. The palliative measure ‘Phase of Illness’ was recommended as the preferred measure of time period over which the domains were measured.
Conclusion: The domains of ‘overall wellbeing/quality of life’, ‘pain’, and ‘information needs/preferences’ are recommended for regular measurement, assessed using ‘Phase of Illness’. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.
CONTEXT: International consensus on indicators is necessary to standardize the global assessment of palliative care (PC) development.
OBJECTIVES: To identify the best indicators to assess current national-level PC development.
METHODS: Experts in PC development were invited to rate 45 indicators organized by domains of the WHO Public Health Strategy in a two-round RAND/UCLA modified Delphi process. In the first round, experts rated indicators by relevance, measurability, and feasibility (1-9). Ratings were used to calculate a Global-Score (1-9). Indicators scoring >7 proceeded to the second round for fine-tuning of Global-Scores. Median, Confidence Interval (CI), Content Validity Index (I-CVI), and Disagreement Index were calculated. Indicators scoring a lower limit 95% CI 7 and an I-CVI 0·30 were selected.
RESULTS: Twenty-four experts representing five continents and several organizations, completed the study. Twenty-five indicators showed a high content validity and level of agreement. Policy indicators (n=8) included the existence of designated staff in the national Ministry of Health, the inclusion of PC services in the basic health package and in the primary care level list of services. Education indicators (n=4) focused on processes of official specialization for physicians, inclusion of teaching at the undergraduate level, and PC professorship. Use of medicines indicators (n=4) consisted of opioid consumption, availability and prescription requirements. Services indicators (n=6) included number and type of services for adults and children. Additional indicators for professional activity (n=3) were identified.
CONCLUSION: The first list including 25 of the best indicators to evaluate PC development at a national-level has been identified.
Background: Few measures exist to assess the quality of care received by home care clients, especially at the end of life.
Objective: This project examined the rates across a set of quality indicators (QIs) for seriously ill home care clients.
Design: This was a cross-sectional descriptive analysis of secondary data collected using a standardized assessment tool, the Resident Assessment Instrument for Home Care (RAI-HC).
Setting/Subjects: The sample included RAI-HC data for 66,787 unique clients collected between January 2006 and March 2018 in six provinces. Individuals were defined as being seriously ill if they experienced a high level of health instability, had a prognosis of less than six months, and/or had palliative care as a goal of care.
Measurements: We compared individuals with cancer (n = 21,119) with those without cancer (n = 47,668) on demographic characteristics, health-related outcomes, and on 11 QIs.
Results: Regardless of diagnosis, home care clients experienced high rates (i.e., poor performance) on several QIs, namely the prevalence of falls (cancer = 42.4%; noncancer = 55%), daily pain (cancer = 48.3%; noncancer = 43.2%), and hospital admissions (cancer = 48%; noncancer = 46.6%). The QI rates were significantly lower (i.e., better performance) for the cancer group for three out of the 11 QIs: falls (absolute standardized difference [SD] = 0.25), caregiver distress (SD = 0.28), and delirium (SD = 0.23).
Conclusions: On several potential QIs, seriously ill home care clients experience high rates, pointing to potential areas for quality improvement across Canada.
BACKGROUND: A challenge for commissioners and providers of end-of-life care in dementia is to translate recommendations for good or effective care into quality indicators that inform service development and evaluation.
AIM: To identify and critically evaluate quality indicators for end-of-life care in dementia.
RESULTS: We found 8657 references, after de-duplication. In all, 19 publications describing 10 new and 3 updated sets of indicators were included in this review. Ultimately, 246 individual indicators were identified as being relevant to dementia end-of-life care and mapped against EAPC guidelines.
CONCLUSIONS: We systematically derived and assessed a set of quality indicators using a robust framework that provides clear definitions of aspects of palliative care, which are dementia specific, and strengthens the theoretical underpinning of new complex interventions in end-of-life care in dementia.
OBJECTIVES: The aim of this study was to investigate how palliative care service structures and processes correlate with their outputs and outcomes, measuring the latter respectively in terms of intensity of care and death at home.
METHODS: The Veneto Regional Health Authorities collected a set of 37 quality indicators for the year 2016, covering the following five dimensions: service integration, service structure, accessibility, professional processes and organisational processes. Their validity was assessed by a panel of 29 palliative care experts. A score was assigned to each indicator on the basis of its relevance. Non-parametric correlations between the care quality indicators and the measures of the palliative care outputs and outcomes were investigated, along with the presence of a monotonic trend in the performance of the local health units (LHU) grouped by 'low', 'medium' or 'high' scores and differences between these groups of LHUs.
RESULTS: The data showed that palliative care service structure and professional processes were the dimensions correlating significantly with the intensity of care coefficient. An increasingly significant statistical trend was found in both the intensity of care coefficient and the proportion of deaths at home for the three groups of LHUs in terms of the professional processes dimension.
CONCLUSIONS: Despite its limitations, this study brought to light some statistically significant findings that are worth investigating in larger samples. To achieve improvements in the quality of palliative care, it is important for healthcare providers to know which variables most affect the output and especially the outcomes of the services offered.
La France a été pionnière en matière de législation dans le domaine de la bioéthique, de la loi de 1988 à sa dernière révision en 2011. La loi relative à la bioéthique pose un ensemble de règles juridiques gouvernant l'ensemble des pratiques médicales et/ou de recherche, dont l'objet est le corps humain et l'embryon en tant que ressource ou entité biologique. Dans le cadre de la révision de la dernière loi de 2011, le comité consultatif national d'éthique pour les sciences de la vie et de la santé (CCNE) a piloté un débat organisé sous la forme d' "États généraux" en s'appuyant sur la mobilisation des Espaces de réflexion éthique régionaux, un site web dédié, des auditions d'associations, d'institutions et de représentants de courants de pensée, ainsi que de sociétés savantes et de Comités d'éthique nationaux. Il a également souhaité qu'un Comité citoyen apporte une analyse critique sur le déroulement du débat public et qu'un médiateur réponde aux critiques sur son organisation. Le CCNE, qui a lancé officiellement les États généraux le18 janvier 2018, a mis fin à la consultation le 30 avril 2018 avec cependant la tenue de quelques auditions et d'une réunion du Comité citoyen, jusqu'au 24 mai. L'ensemble des contributions a été analysé par le CCNE et rassemblé dans le présent rapport. Sont présentés, la méthode et la démarche, les sujets discutés et les propositions faites autour des neuf thématiques et les enseignements à tirer du processus de débat public mis en oeuvre.
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Objectives: Although transthyretin (TTR) is a nutritional indicator and is influenced by systemic inflammation, it may be a good prognostic indicator for cancer patients in palliative care settings. This study investigates the correlation between low TTR levels and survival among cancer patients in palliative care settings.
Methods: This was a sub-analysis of a prospective, multicenter cohort study. Patients who had advanced-stage cancer and who were newly referred to palliative care services were eligible to participate; however, those receiving anti-tumor therapy were excluded. Survival analyses were performed to clarify predictors of poor prognosis.
Results: A total of 144 patients were enrolled (45.1% female; median age, 72 years). Cox regression analysis revealed that low TTR levels (<10.9 mg/l) (hazard ratio 1.74, P = 0.025), poor muscle power (1.71, P = 0.045), and fatigue (1.89, P = 0.024) were predictors of poor prognosis. Median survival in patients with low TTR levels (<10.9 mg/l) was 26 days, which was significantly shorter than those with high TTR levels (=10.9 mg/l) (50 days; P < 0.001).
Conclusion: Low TTR levels may be indicators for poor prognosis among cancer patients in palliative care settings.
BACKGROUND: Currently, there are no formalized measures for the quality of home based palliative care in Ontario. This study developed a set of potential quality indicators for seriously ill home care clients using a standardized assessment.
METHODS: Secondary analysis of Resident Assessment Instrument for Home Care data for Ontario completed between 2006 and 2013 was used to develop quality indicators (QIs) thought to be relevant to the needs of older (65+) seriously ill clients. QIs were developed through a review of the literature and consultation with subject matter experts in palliative care. Serious illness was defined as a prognosis of less than 6 months to live or the presence of severe health instability. The rates of the QIs were stratified across Ontario's geographic regions, and across four common life-limiting illnesses to observe variation.
RESULTS: Within the sample, 14,312 clients were considered to be seriously ill and were more likely to experience negative health outcomes such as cognitive performance (OR = 2.77; 95% CI: 2.66–2.89) and pain (OR = 1.59; 95% CI: 1.53–1.64). Twenty subject matter experts were consulted and a list of seven QIs was developed. Indicators with the highest overall rates were prevalence of falls (50%) prevalence of daily pain (47%), and prevalence of caregiver distress (42%). The range in QI rates was largest across regions for prevalence of caregiver distress (21.5%), the prevalence of falls (16.6%), and the prevalence of social isolation (13.7%). Those with some form of dementia were most likely to have a caregiver that was distressed (52.6%) or to experience a fall (53.3%).
CONCLUSION: Home care clients in Ontario who are seriously ill are experiencing high rates of negative health outcomes, many of which are amenable to change. The RAI-HC can be a useful tool in identifying these clients in order to better understand their needs and abilities. These results contribute significantly to the process of creating and validating a standardized set of QIs that can be generated by organizations using the RAI-HC as part of normal clinical practice.
CONTEXT: Palliative Care advocates argue that service implementation is feasible in all settings. Yet, services have developed patchily in low and middle-income settings. Beyond Human Development Index indicators, there has been limited engagement with the broader development challenges facing nations tasked with implementing palliative care.
OBJECTIVE: To describe how indicators of national development relate to levels of palliative care services in 207 countries around the world.
METHODS: Ecological study to identify relationships between potential predictor variables and the level of national palliative care development. A total of 28 predictor variables from the following 6 domains were selected using hypothesised relationships with levels of palliative care development: disease demographics, socioeconomics, health systems, politics, demographics and economics. The outcome variable was level of national palliative care development on a six-point scale. Spearman's correlation was used to measure the strength of the association.
RESULTS: Twenty-six out of 28 variables were statistically significantly associated with levels of palliative care development in 207 countries. Palliative care is more developed in countries with high: percentage of deaths from non-communicable disease; population proportion aged 65+; gross national income and tourism. Development is lower in countries with high levels of: political corruption; infant mortality; deaths by infectious diseases; and weak democracy. Prevalence of under-nourishment and levels of private health expenditure were not significantly associated with palliative care development.
CONCLUSION: Palliative care development is highly consistent with broader national development indicators. It is less in countries where sudden deaths are more likely and benefits from palliative care provision are likely to be very limited. In such countries, resources may be prioritised towards life prolonging therapies and key aspects of palliative care need only be implemented prior to fully integrated palliative services. Findings suggest that there may be a 'tipping point' in societies, where the relative need for life-prolonging therapies becomes less than the need for integrated palliative care services.
Background: Indicators assessing national-level palliative care (PC) development used for cross-national comparison depict progress on this field. There is current interest on its inclusion in global monitoring frameworks.
Objective: Identify and conceptualize those most frequently used for international PC development reporting.
Design: Systematic review.
Data Sources: PubMed, CINAHL, Google Scholar, and Google targeting national-level development indicators used for cross-national comparison. Additional search requesting experts' suggestions on key studies and “snow-balling” on reference section of all included studies. Identified indicators were listed and categorized in dimensions: services, use of medicines, policy, and education.
Results: Fifty-four studies were included. Development has been evaluated using 480 different formulations of 165 indicators, 38 were highly reported. Thirty-two fell into proposed dimensions, 11 for use of medicines, 9 for policy, 7 for services, and 5 for education. Six into complementary dimensions: research, professional activity, and international cooperation. Six were the most frequently used indicators: number of PC services per population (40 reports), existence of PC national plan, strategy, or program (25), existence of palliative medicine specialization (22), availability and allocation of funds for PC (13), medical schools, including PC, in undergraduate curricula (13), and total use of opioids-morphine equivalents (11).
Conclusion: There is a clear pattern for national-level PC development evaluation repeatedly using a small number of indicators. Indicators addressing generalistic provision, integration into health systems, and specific fields such as pediatric lack. This study invites international discussion on a global consensus on PC-development assessment.
BACKGROUND: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they improve outcomes for patients, families, health care professionals, and the health care system.
OBJECTIVE: To identify and compare definitions of indicators used to assess the impact of specialized pediatric palliative care programs.
DESIGN: The scoping review protocol was prospectively registered on PROSPERO 2017 (CRD42017074090).
DATE SOURCES: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Eligible studies included randomized controlled trials, experimental studies, or observational studies that compared specialized programs with usual care. Studies were excluded if most care recipients were older than 19 years or the article was not available in English, French, German, or Spanish.
RESULTS: Forty-six studies were included; one was a randomized controlled trial. We identified 82 different indicators grouped into 14 domains. The most common indicators included the following: location of death, length of stay in hospital, and number of hospital admissions. Only 22 indicators were defined identically in at least 2 studies. Only one study included children's perspectives in assessing indicators.
CONCLUSIONS: Many indicators were used to assess program outcomes with little definition consensus across studies. Development of a set of agreed-upon indicators to assess program impact concurrent with family and patient input is essential to advance research and practice in pediatric palliative care.