Monitoring COVID-19 in Belgian general practice: A tool for syndromic surveillance based on electronic health records.

BACKGROUND: COVID-19 may initially manifest as flu-like symptoms. As such, general practitioners (GPs) will likely to play an important role in monitoring the pandemic through syndromic surveillance. OBJECTIVES: To present a COVID-19 syndromic surveillance tool in Belgian general practices. METHODS: We performed a nationwide observational prospective study in Belgian general practices. The surveillance tool extracted the daily entries of diagnostic codes for COVID-19 and associated conditions (suspected or confirmed COVID-19, acute respiratory infection and influenza-like illness) from electronic medical records. We calculated the 7-day rolling average for these diagnoses and compared them with data from two other Belgian population-based sources (laboratory-confirmed new COVID-19 cases and hospital admissions for COVID-19), using time series analysis. We also collected data from users and stakeholders about the syndromic surveillance tool and performed a thematic analysis. RESULTS: 4773 out of 11,935 practising GPs in Belgium participated in the study. The curve of contacts for suspected COVID-19 followed a similar trend compared with the curves of the official data sources: laboratory-confirmed COVID-19 cases and hospital admissions but with a 10-day delay for the latter. Data were quickly available and useful for decision making, but some technical and methodological components can be improved, such as a greater standardisation between EMR software developers. CONCLUSION: The syndromic surveillance tool for COVID-19 in primary care provides rapidly available data useful in all phases of the COVID-19 pandemic to support data-driven decision-making. Potential enhancements were identified for a prospective surveillance tool.

Data extracted daily from electronic medical records can be used to monitor the COVID-19 pandemic in general practice.The Barometer provided rapidly available data to support data-driven decision-making.Improvements such as a greater standardisation were identified for a potential future tool using the same technology.

Trends in appropriateness of end-of-life care in people with cancer, COPD or with dementia measured with population-level quality indicators.

INTRODUCTION: Measuring changes in the appropriateness of end-of-life care provided to patients with advanced illness such as cancer, COPD or dementia can help governments and practitioners improve service delivery and quality of life. However, an assessment of a possible shift in appropriateness of end-of-life care across the population is lacking. AIM: Measuring quality indicators with routinely collected population-level data, this study aims to evaluate the appropriateness of end-of-life care for people with cancer, COPD or dementia in Belgium. DESIGN: A population-level decedent cohort study, using data from eight population-level databases, including death certificate and health claims data. We measured validated sets of quality indicators for appropriateness of end-of-life care. SETTING/PARTICIPANTS: All people who died from cancer or COPD or with dementia between 1st January 2010 and 1st January 2016 in Belgium. RESULTS: We identified three main trends over time across the three disease groups of increasing use of: family physicians in the last 30 days of life (+21.7% in cancer, +33.7% in COPD and +89.4% in dementia); specialist palliative care in the last 14 days of life (+4.6% in cancer, +36.9% in COPD, +17.8% in dementia); and emergency department in the last 30 days of life (+7.0% in cancer, +4.4% in COPD and +8.2% in dementia). CONCLUSIONS: Although we found an increase of both specialized palliative care and generalist palliative care use, we also found an increase in potentially inappropriate care, including ED and ICU admissions. To increase the quality of end-of-life care, both timely initiating (generalist and specialist) palliative care and avoiding potentially inappropriate care transitions, treatments and medications need to be quality performance targets.

Burden of COVID-19 on primary care in Belgium: a prospective nationwide observational study from March to August 2020.

BACKGROUND: The COVID-19 outbreak had an important impact on general practice, for example the lack of personal protective equipment (PPE) and the switch to telephone consultations. We installed a monitoring instrument and reported the burden the COVID-19 pandemic placed on Belgian general practitioners (GPs) during the first wave of the pandemic. METHODS: We conducted an observational longitudinal prospective study from the 19th of March until the 17th of August 2020. Daily data were collected by using a structured electronic form integrated into the GPs' electronic medical records (EMRs). Data were collected on the GPs' need for support and workload, epidemiological indicators and the availability of PPE. Reports with graphical presentations were made for GP circles and primary care zones, and governments of different administrative levels had access to all data to guide their policy. RESULTS: A total of 3.769 different GP centres participated, which included more than 10.000 GPs. Throughout the first three weeks, 20% declared they had insufficient resources (personnel and material) for the following week. Approximately 10% continued to report this during the entire study. The majority reported being able to complete their daily tasks without loss of quality. During the first week, 30% indicated an increased workload. Afterwards, this number decreased and stabilized to an average of 10-20%. More than 70% of the consultations in March 2020 were conducted by telephone. This percentage declined in April and stabilized at approximately 30% in June 2020. Consultations due to respiratory symptoms peaked at 4000/100,000 inhabitants at the beginning of the outbreak, then decreased over time along with the COVID-19 incidence. We noticed a lack of disinfectant hand gel, surgical masks and FFP2 masks, the latter remaining problematic in the long term. CONCLUSION: We introduced an instrument in Belgian EMR systems to monitor the burden on GPs during the first wave of the COVID-19 pandemic. The lack of PPE and increased workload were considered to be the main obstacles. A large number of the GP offices switched to teleconsultations to provide healthcare. Our monitoring instrument provided information for policy makers to intervene on a local level.

Improved quality of care and reduced healthcare costs at the end-of-life among older people with dementia who received palliative home care: A nationwide propensity score-matched decedent cohort study.

BACKGROUND: While palliative home care is advocated for people with dementia, evidence of its effectiveness is lacking. AIM: To evaluate the effects of palliative home care on quality and costs of end-of-life care for older people with dementia. DESIGN: Decedent cohort study using linked nationwide administrative databases and propensity score matching. SETTING/PARTICIPANTS: All home-dwelling older people who died with dementia between 2010 and 2015 in Belgium (N = 23,670). EXPOSURE: Receiving palliative home care support for the first time between 360 and 15 days before death. RESULTS: Five thousand six hundred and thirty-seven (23.8%) received palliative home care support in the last 2 years of life, of whom 2918 received it for the first time between 360 and 15 days before death. Two thousand eight hundred and thirty-nine people who received support were matched to 2839 people who received usual care. After matching, those using palliative home care support, in the last 14 days of life, had lower risk of hospital admission (17.5% vs 50.5%; relative risk (RR) = 0.21), undergoing diagnostic testing (17.0% vs 53.6%; RR = 0.20) and receiving inappropriate medications, but were more likely to die at home (75.7% vs 32.6%; RR = 6.45) and to have primary care professional contacts (mean 11.7 vs mean 5.2), compared with those who did not. Further, they had lower mean total costs of care in the last 30 days of life (incremental cost:-€2129). CONCLUSIONS: Palliative home care use by home-dwelling older people with dementia is associated with improved quality and reduced costs of end-of-life care. Access remains low and should be increased.

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.

Appropriateness of End-of-Life Care in People Dying With Dementia: Applying Quality Indicators on Linked Administrative Databases.

OBJECTIVES: Dementia is a progressive incurable life-limiting illness. Previous research suggests end-of-life care for people with dementia should have a symptomatic focus with an effort to avoid burdensome interventions that would not improve quality of life. This study aims to assess the appropriateness of end-of-life care in people who died with dementia in Belgium and to establish relative performance standards by measuring validated population-level quality indicators. DESIGN: We conducted a retrospective observational study. SETTING AND PARTICIPANTS: We included all persons deceased with dementia in 2015 in Belgium. Data from 8 administratively collected population-level databases was linked. MEASURES: We used a validated set of 28 quality indicators for end-of-life dementia care. We compared quality indicator scores across 14 healthcare regions to establish relative benchmarks. RESULTS: In Belgium in 2015, 10,629 people died with dementia. For indicators of appropriate end-of-life care, people who died with dementia had on average 1.83 contacts with their family physician in the last week before death, whereas 68.4% died at home or in their nursing home of residence. For indicators of inappropriate end-of-life care, 32.4% were admitted to the hospital and 36.3% underwent diagnostic testing in the last 30 days before death, whereas 25.1% died in the hospital. In the last 30 days, emergency department admission varied between 19% and 31%, dispensing of gastric protectors between 18% and 42%, and antihypertensives between 40% and 53% between healthcare regions, with at least 25% of health regions below 46%. CONCLUSIONS AND IMPLICATIONS: Our study found indications of appropriate as well as inappropriate end-of-life care in people with dementia, including high rates of family physician contact, as well as high percentages of diagnostic testing, and emergency department and hospital admissions. We also found high risk-adjusted variation for multiple quality indicators, indicating opportunity for quality improvement in end-of-life dementia care.

Discontinuation of medications at the end of life: A population study in Belgium, based on linked administrative databases.

AIMS: The aim of this study was to examine the use of potentially inappropriate medication (PIM) in relation to time before death, to explore whether PIMs are discontinued at the end of life, and the factors associated with this discontinuation. METHODS: We conducted a retrospective register-based mortality cohort study of all deceased in 2012 in Belgium, aged at least 75 years at time of death (n = 74 368), using linked administrative databases. We used STOPPFrail to identify PIMs received during the period from 12 to 6 months before death (P1) and the last 4 months (P2) of life. RESULTS: Median age was 86 (IQR 81-90) at time of death, 57% were female, 38% were living in a nursing home, and 16% were admitted to hospital between 2 years and 4 months before death. Overall, PIM use was high, and increased towards death for all PIMs. At least one PIM was discontinued during P2 for one in five (20%) of the population, and 49% had no discontinuation. Being hospitalized in the period before the last 4 months of life, living in a nursing home, female gender and a higher number of medications used during P1 were associated with discontinuation of PIMs (respective aOR [95% CI]: 2.89 [2.73-3.06], 1.29 [1.23-1.36], 1.26 [1.20-1.32], 1.17 [1.16-1.17]). CONCLUSION: Initial PIM use was high and increased towards death. Discontinuation was observed in only one in five PIM users. More guidance for discontinuation of PIMs is needed: practical, evidence-based deprescribing guidelines and implementation plans, training for prescribers and a better consensus on what inappropriate medication is.

Impact of palliative home care support on the quality and costs of care at the end of life: a population-level matched cohort study.

OBJECTIVES: To evaluate the impact of palliative home care support on the quality of care and costs in the last 14 days of life. DESIGN: Matched cohort study using linked administrative databases. SETTING: All people who died in Belgium in 2012 (n=107 847). PARTICIPANTS: 8837 people who received palliative home care support in the last 720 to 15 days of life matched 1:1 by propensity score to 8837 people who received usual care. INTERVENTION: Receiving the allowance for palliative home patients, multidisciplinary palliative home care team visit or palliative nurse or physiotherapist visit at home. MAIN OUTCOME MEASURES: Home death, number of family physician contacts, number of primary caregiver contacts, hospital death, hospital admission, intensive care unit (ICU) admission, emergency department (ED) admission, diagnostic testing, blood transfusion and surgery. Total inpatient and outpatient costs. All outcomes were measured in the last 14 days of life. RESULTS: In the unmatched cohort, 11 149 (13.5%) people received palliative home care support in the last 720 to 15 days of life. After matching, those using palliative home care support had, compared with those who did not, more family physician contacts (mean 3.1 [SD=6.5] vs 0.8 [SD=1.2]), more chance of home death (56.2%vs13.8%; relative risk [RR]=4.08, 95% CI 3.86 to 4.31), lower risk of hospital admission (27.4%vs60.8%; RR=0.45, 95% CI 0.43 to 0.46), ICU admission (18.3%vs40.4%; RR=0.45, 95% CI 0.43 to 0.48) or ED admission (15.2%vs28.1%; RR=0.54, 95% CI 0.51 to 0.57). Mean total costs of care were lower for those using palliative home care support (€3081 [95% CI €3025 to €3136] vs €4698 [95% CI €4610 to €4787]; incremental cost: -€1617 [p<0.001]). CONCLUSIONS: Palliative home care support use positively impacts quality of care and reduces total costs of care at the end of life in Belgium. Policy makers and healthcare practitioners should increasingly focus on communicating the existing options for palliative home care support to patients and their caregivers.

Appropriateness of End-of-Life Care in People Dying From COPD. Applying Quality Indicators on Linked Administrative Databases.

CONTEXT: Large-scale evaluations of the quality of end-of-life care in people with chronic obstructive pulmonary disease (COPD) are lacking. OBJECTIVES: By means of a validated set of quality indicators (QIs), this study aimed to 1) assess appropriateness of end-of-life care in people dying from COPD; 2) examine variation between care regions; 3) establish performance standards. METHODS: We conducted a retrospective observational study of all deaths from COPD (ICD-10 codes J41-J44) in 2012 in Belgium, using data from administrative population-level databases. QI scores were risk-adjusted for comparison between care regions. RESULTS: A total of 4231 people died from COPD. During the last 30 days of life, 60% was admitted to hospital and 11.8% received specialized palliative care. Large regional variation was found in specialized palliative care use (4.0%-32.0%) and diagnostic testing in the last 30 days of life (44.0%-69.7%). Based on best performing quartile scores, relative standards were set (e.g., ≤54.9% for diagnostic testing). CONCLUSION: Our study found indications of inappropriate end-of-life care in people with COPD, such as high percentages of diagnostic testing and hospital admissions and low proportions receiving specialized palliative care. Risk-adjusted variation between regions was high for several QIs, indicating the usefulness of relative performance standards to improve quality of end-of-life COPD care.

Applying Quality Indicators For Administrative Databases To Evaluate End-Of-Life Care For Cancer Patients In Belgium.

End-of-life cancer care has been criticized as frequently inappropriate and aggressive. Providing appropriate care to people with cancer is a public health priority. Quality indicators are considered a valid way to evaluate the appropriateness of end-of-life cancer care within a health care system. We conducted a population-level retrospective observational study of all cancer decedents in Belgium in 2012 to assess end-of-life care and risk factors for exposure to care. We linked eight full-population databases on health care use, cancer diagnoses, and demographic and socioeconomic variables. We used analysis of variance to examine factors associated with exposure to appropriate or inappropriate end-of-life cancer care. Of the 26,464 people in Belgium who died from cancer in 2012, 47 percent received specialist palliative care, and 30 percent died at home. In the last thirty days of life, 17 percent received chemotherapy, and 66 percent received diagnostic testing. For 17 percent, palliative care was initiated only in the last fourteen days of life. Our results suggest a need to focus policy on reducing aggressive and inappropriate care at the end of life and an opportunity to increase the proportion of people who receive specialist palliative care and die at home.

Developing indicators of appropriate and inappropriate end-of-life care in people with Alzheimer's disease, cancer or chronic obstructive pulmonary disease for population-level administrative databases: A RAND/UCLA appropriateness study.

BACKGROUND: A substantial amount of aggressive life-prolonging treatments in the final stages of life has been reported for people with progressive life-shortening conditions. Monitoring appropriate and inappropriate end-of-life care is an important public health challenge and requires validated quality indicators. AIM: To develop indicators of appropriate and inappropriate end-of-life care for people with cancer, chronic obstructive pulmonary disease or Alzheimer's disease, measurable with population-level administrative data. DESIGN: modified RAND/UCLA appropriateness method. SETTING/PARTICIPANTS: Potential indicators were identified by literature review and expert interviews and scored in a survey among three panels of experts (one for each disease group). Indicators for which no consensus was reached were taken into group discussions. Indicators with consensus among the experts were retained for the final quality indicator sets. RESULTS: The final sets consist of 28 quality indicators for Alzheimer's disease, 26 quality indicators for cancer and 27 quality indicators for chronic obstructive pulmonary disease. The indicator sets measure aspects of aggressiveness of care, pain and symptom treatment, specialist palliative care, place of care and place of death and coordination and continuity of care. CONCLUSION: We developed a comprehensive set of quality indicators of appropriate and inappropriate end-of-life care in people with Alzheimer's disease, cancer or chronic obstructive pulmonary disease, to be used in population-level research. Our focus on administrative healthcare databases limits us to treatment and medication, excluding other important quality aspects such as communication, which can be monitored using complementary approaches. Nevertheless, our sets will enable an efficient comparison of healthcare providers, regions and countries in terms of their performance on appropriateness of end-of-life care.

Using linked administrative and disease-specific databases to study end-of-life care on a population level.

BACKGROUND: The use of full-population databases is under-explored to study the use, quality and costs of end-of-life care. Using the case of Belgium, we explored: (1) which full-population databases provide valid information about end-of-life care, (2) what procedures are there to use these databases, and (3) what is needed to integrate separate databases. METHODS: Technical and privacy-related aspects of linking and accessing Belgian administrative databases and disease registries were assessed in cooperation with the database administrators and privacy commission bodies. For all relevant databases, we followed procedures in cooperation with database administrators to link the databases and to access the data. RESULTS: We identified several databases as fitting for end-of-life care research in Belgium: the InterMutualistic Agency's national registry of health care claims data, the Belgian Cancer Registry including data on incidence of cancer, and databases administrated by Statistics Belgium including data from the death certificate database, the socio-economic survey and fiscal data. To obtain access to the data, approval was required from all database administrators, supervisory bodies and two separate national privacy bodies. Two Trusted Third Parties linked the databases via a deterministic matching procedure using multiple encrypted social security numbers. CONCLUSION: In this article we describe how various routinely collected population-level databases and disease registries can be accessed and linked to study patterns in the use, quality and costs of end-of-life care in the full population and in specific diagnostic groups.