General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey.

There are almost no studies about rare diseases in general practice. This study examined care characteristics of active rare disease patients in the Belgian Network of Sentinel General Practices (SGP) and the importance of rare diseases in general practice by its caseload, general practitioner (GP)⁻patient encounter frequency and nationwide prevalence. The SGP reported data about: (i) the number of active rare disease patients in 2015; and (ii) characteristics of one to three most recently seen patients.

Results of the Belgian Sentinel Network of General Practitioners on the Involvement of Therapists in Stroke Rehabilitation.

This study examines which therapists are involved in the rehabilitation of stroke survivors in Belgium at different points in time. A nationwide registration of stroke patients was provided by 199 and 189 family physicians working in sentinel practices for the years 2009 and 2010 respectively. 326 patients who were diagnosed with stroke were included.

General practice patients treated for substance use problems: a cross-national observational study in Belgium.

Background: General Practitioners (GPs) are well placed to care for patients with (chronic) substance use problems. This pilot was carried out to study the feasibility and usefulness of a continuous surveillance of substance use problems among general practice patients. The objectives were (i) to describe variables with missing values exceeding 1% and whether patients were reported without substance-related problems; (ii) the profile and the magnitude of the patient population that is treated for substance use problems.

Clinical action measures improve the reliability of feedback on quality of care in diabetes centres: a retrospective cohort study.

Background: Assessment of quality of care using classical threshold measures (TM) is open to debate. Measures that take into account the clinician's actions and the longitudinal nature of chronic care are more reliable, although their major limitation is that they require more sophisticated electronic health records. We created a clinical action measure (CAM) for the control of LDL and non-HDL cholesterol from low-complexity data, and investigated how quality of care in individual diabetes centres based on the CAM is related to that based on the classical TM.

Does the Belgian diabetes type 2 care trajectory improve quality of care for diabetes patients?

Background: The Belgian care trajectory (CT) for diabetes mellitus type 2 (T2DM), implemented in September 2009, aims at providing integrated, evidence-based, multidisciplinary patient- centred care, based on the chronic care model. The research project ACHIL (Ambulatory Care Health Information Laboratory) studied the adherence of CT patients, in the early phases of CT programme implementation, with CT obligations, their uptake of incentives for self-management, whether the CT programme was targeting the appropriate group of patients, how care processes for these patients evolved over time and whether CT start led to better quality in the processes and outcomes of care.

Methods: This observational study took place in the period 2006-2011 and covered T2DM patients who started a CT between 01/09/2009 and 31/12/2011.

Place of residence after a stroke: results of the registration by the Belgian Sentinel Network of general practitioners.

Background: Stroke is a major health problem worldwide. The health consequences for the survivors are not to be underestimated. The increased care needs after a stroke result often in a change of residence or an institutionalisation.

What determines inclusion in the early phase of the type 2 diabetes care trajectory in Belgium?

Background: In 2009, the Belgian National Institute of Health and Disability Insurance established a care trajectory (CT) for a subgroup of type 2 diabetes mellitus patients (T2DM) based on Wagner's chronic care model. The goal of this CT is to optimise the quality of care using an integrated multidisciplinary approach. This study aims to identify patient-related factors associated with inclusion in a CT and to determine the most frequent reasons for non-inclusion.

Early stages of building a rare disease registry, methods and 2010 data from the Belgian Neuromuscular Disease Registry (BNMDR).

The Belgian Neuromuscular Disease Registry, commissioned in 2008, aims to collect data to improve knowledge on neuromuscular diseases and enhance quality health services for neuromuscular disease patients. This paper presents a clear outline of the strategy to launch a global national registry. All patients diagnosed with one of the predefined 62 neuromuscular disease groups and living in Belgium may be included in the yearly updated Registry.

Belgian primary care EPR: assessment of nationwide routine data extraction.

Starting in 2009, the first ever Belgian nationwide data collection network using routine data extracted from primary care EPR (upload method) has been built from scratch. The network also uses a manual web-based data collection method. This paper compares these two methods by analysing missing and most recent values for certain parameters.

Falls among older general practice patients: a 2-year nationwide surveillance study.

Background: Falling among older persons is a multifactorial health condition needing multifactorial care. Several targeted preventive interventions and their coordination are considered to be general practitioner (GP)-specific tasks.

Objectives: To estimate the incidence of falls among older non-institutionalized general practice patients in Belgium (2009-10) and to describe the main characteristics of falls, fallers and fall risks; factors associated with multiple fall risks and the co-occurrence of fall risks; patient status 3 months later and care delivery.

Implementation of a quality improvement initiative in Belgian diabetic foot clinics: feasibility and initial results.

Background: This article aims to describe the implementation and initial results of an audit-feedback quality improvement initiative in Belgian diabetic foot clinics.

Methods: Using self-developed software and questionnaires, diabetic foot clinics collected data in 2005, 2008 and 2011, covering characteristics, history and ulcer severity, management and outcome of the first 52 patients presenting with a Wagner grade ≥ 2 diabetic foot ulcer or acute neuropathic osteoarthropathy that year. Quality improvement was encouraged by meetings and by anonymous benchmarking of diabetic foot clinics.

Palliative care service use in four European countries: a cross-national retrospective study via representative networks of general practitioners.

Background: Due to a rising number of deaths from cancer and other chronic diseases a growing number of people experience complex symptoms and require palliative care towards the end of life. However, population-based data on the number of people receiving palliative care in Europe are scarce. The objective of this study is to examine, in four European countries, the number of people receiving palliative care in the last three months of life and the factors associated with receiving palliative care.

Long-term evolution of renal function in patients with type 2 diabetes mellitus: a registry-based retrospective cohort study.

Objectives: To picture the 10-year evolution of renal function in patients with type 2 diabetes mellitus (T2DM) and chronic kidney disease (CKD) and to describe the risk factors for severe decline.

Setting: Primary registration network with 97 general practitioners working in 55 practices sending routinely collected patient data.

Participants: From the database, we selected all patients aged 40 years or older with T2DM and at least two creatinine measurements in two different years with an interval of at least 3 months.

Availability of informal caregivers in surviving stroke patients in Belgium.

Objective: To quantify the availability of informal caregivers in surviving stroke patients residing at home in Belgium.

Methods: National estimates on the availability of informal caregivers were made using data from a nationwide observational registration of family physicians working in sentinel practices and a nationwide administrative database for reimbursement of hospitals in Belgium.

Results: A total of 189 Belgian family physicians (FPs) from 141 practices participated in the study and recorded 326 patients (144 men and 182 women) with stroke.

Routinely-collected general practice data from the electronic patient record and general practitioner active electronic questioning method: a comparative study.

The numerous existing primary care-based research networks currently use various data collection methods. In this paper, we compared routine data extracted from general practitioners' (GPs') electronic patient records (EPRs) and GPs' answers to an electronic questionnaire. We investigated for 10,307 Belgian patients 10 healthcare conditions using clinical and biological parameters (cholesterol, blood pressure, and body mass index), diagnoses (hypertension, diabetes, and personal past cardiovascular event(s)), and drug prescriptions (antidiabetic drugs, aspirin, statins, and antihypertensive drugs).

Nationwide continuous monitoring of end-of-life care via representative networks of general practitioners in Europe.

Background: Although end-of-life care has become an issue of great clinical and public health concern in Europe and beyond, we lack population-based nationwide data that monitor and compare the circumstances of dying and care received in the final months of life in different countries. The European Sentinel GP Networks Monitoring End of Life Care (EURO SENTIMELC) study was designed to describe and compare the last months of life of patients dying in different European countries. We aim to describe how representative GP networks in the EURO SENTIMELC study operate to monitor end of life care in a country, to describe used methodology, research procedures, representativity and characteristics of the population reached using this methodology.

Global quality indicators for primary care Electronic Patient Records.

Electronic Patient Records can be interfaced with medical decision support systems and quality of care assessment tools. An easy way of measuring the quality of EPR data is therefore essential. This study identified a number of global quality indicators (tracers) that could be easily calculated and validated them by correlating them with the Sensitivity and Positive Predictive Value (PPV) of data extracted from the EPR.

Cardiovascular risk factors and complications associated with albuminuria and impaired renal function in insulin-treated diabetes.

Aims: To establish the association between albuminuria and cardiovascular risk factors as well as micro- and macrovascular complications in type 1 and insulin-treated type 2 diabetes, both in the presence and in the absence of reduced estimated glomerular filtration rate (eGFR).

Methods: Cross-sectional study including 7640 insulin-treated diabetic patients (33% type 1) treated in specialist diabetes centers. Albuminuria was defined as ≥30 mg/g, 20 mg/L, 20 μg/min or 30 mg/24 h.

End-of-life decisions: a cross-national study of treatment preference discussions and surrogate decision-maker appointments.

Background: Making treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making. This study estimates and compares the prevalence of GP-patient end-of-life treatment discussions and patients' appointment of surrogate decision-makers in Italy, Spain, Belgium and the Netherlands and examines associated factors.

Methods: A cross-sectional, retrospective survey was conducted with representative GP networks in four countries.

Awareness of general practitioners concerning cancer patients' preferences for place of death: evidence from four European countries.

Background: General Practitioners (GPs) are at the first level of contact in many European healthcare systems and they supposedly have a role in supporting cancer patients in achieving their desired place of death. A four-country (Belgium, the Netherlands, Italy and Spain) study was carried out exploring current practices.

Patients And Methods: EURO SENTI-MELC adopted a retrospective study design and data for this study were collected in 2010 through representative GPs' networks in four countries.

Quality assessment of automatically extracted data from GPs' EPR.

There are many secondary benefits to collecting routine primary care data, but we first need to understand some of the properties of this data. In this paper we describe the method used to assess the PPV and sensitivity of data extracted from Belgian GPs' EPR (diagnoses, drug prescriptions, referrals, and certain parameters), using data collected through an electronic questionnaire as a gold standard. We describe the results of the ResoPrim phase 2 project, which involved 4 software systems and 43 practices (10,307 patients).