Electronic Health Record-Triggered Research Infrastructure Combining Real-world Electronic Health Record Data and Patient-Reported Outcomes to Detect Benefits, Risks, and Impact of Medication:Development Study

BACKGROUND: Real-world data from electronic health records (EHRs) represent a wealth of information for studying the benefits and risks of medical treatment. However, they are limited in scope and should be complemented by information from the patient perspective. OBJECTIVE: The aim of this study is to develop an innovative research infrastructure that combines information from EHRs with patient experiences reported in questionnaires to monitor the risks and benefits of medical treatment. METHODS: We focused on the treatment of overactive bladder (OAB) in general practice as a use case. To develop the Benefit, Risk, and Impact of Medication Monitor (BRIMM) infrastructure, we first performed a requirement analysis. BRIMM’s starting point is routinely recorded general practice EHR data that are sent to the Dutch Nivel Primary Care Database weekly. Patients with OAB were flagged weekly on the basis of diagnoses and prescriptions. They were invited subsequently for participation by their general practitioner (GP), via a trusted third party. Patients received a series of questionnaires on disease status, pharmacological and nonpharmacological treatments, adverse drug reactions, drug adherence, and quality of life. The questionnaires and a dedicated feedback portal were developed in collaboration with a patient association for pelvic-related diseases, Bekkenbodem4All. Participating patients and GPs received feedback. An expert meeting was organized to assess the strengths, weaknesses, opportunities, and threats of the new research infrastructure. RESULTS: The BRIMM infrastructure was developed and implemented. In the Nivel Primary Care Database, 2933 patients with OAB from 27 general practices were flagged. GPs selected 1636 (55.78%) patients who were eligible for the study, of whom 295 (18.0% of eligible patients) completed the first questionnaire. A total of 288 (97.6%) patients consented to the linkage of their questionnaire data with their EHR data. According to experts, the strengths of the infrastructure were the linkage of patient-reported outcomes with EHR data, comparison of pharmacological and nonpharmacological treatments, flexibility of the infrastructure, and low registration burden for GPs. Methodological weaknesses, such as susceptibility to bias, patient selection, and low participation rates among GPs and patients, were seen as weaknesses and threats. Opportunities represent usefulness for policy makers and health professionals, conditional approval of medication, data linkage to other data sources, and feedback to patients. CONCLUSIONS: The BRIMM research infrastructure has the potential to assess the benefits and safety of (medical) treatment in real-life situations using a unique combination of EHRs and patient-reported outcomes. As patient involvement is an important aspect of the treatment process, generating knowledge from clinical and patient perspectives is valuable for health care providers, patients, and policy makers. The developed methodology can easily be applied to other treatments and health problems

Incentivizing appropriate prescribing in primary care:Development and first results of an electronic health record-based pay-for-performance scheme

Objective Part of the funding of Dutch General Practitioners (GPs) care is based on pay-for-performance, including an incentive for appropriate prescribing according to guidelines in national formularies. Aim of this paper is to describe the development of an indicator and an infrastructure based on prescription data from GP Electronic Health Records (EHR), to assess the level of adherence to formularies and the effects of the pay-for-performance scheme, thereby assessing the usefulness of the infrastructure and the indicator. Methods Adherence to formularies was calculated as the percentage of first prescriptions by the GP for medications that were included in one of the national formularies used by the GP, based on prescription data from EHRs. Adherence scores were collected quarterly for 2018 and 2019 and subsequently sent to health insurance companies for the pay-for-performance scheme. Adherence scores were used to monitor the effect of the pay-for-performance scheme. Results 75% (2018) and 83% (2019) of all GP practicesparticipated. Adherence to formularies was around 85% or 95%, depending on the formulary used. Adherence improved significantly, especially for practices that scored lowest in 2018. Discussion We found high levels of adherence to national formularies, with small improvements after one year. The infrastructure will be used to further stimulate formulary-based prescribing by implementing more actionable and relevant indicators on adherence scores for GPs

Opioid prescribing in out-of-hours primary care in Flanders and the Netherlands:A retrospective cross-sectional study

BACKGROUND: Increased opioid prescribing has raised concern, as the benefits of pain relief not always outweigh the risks. Acute and chronic pain is often treated in a primary care out-of-hours (OOH) setting. This setting may be a driver of opioid use but the extent to which opioids are prescribed OOH is unknown. We aimed to investigate weak and strong opioid prescribing at OOH primary care services (PCS) in Flanders (Northern, Dutch-speaking part of Belgium) and the Netherlands between 2015 and 2019. METHODS: We performed a retrospective cross sectional study using data from routine electronic health records of OOH-PCSs in Flanders and the Netherlands (2015–2019). Our primary outcome was the opioid prescribing rate per 1000 OOH-contacts per year, in total and for strong (morphine, hydromorphone, oxycodone, oxycodone and naloxone, fentanyl, tapentadol, and buprenorphine and weak opioids (codeine combinations and tramadol and combinations) and type of opioids separately. RESULTS: Opioids were prescriped in approximately 2.5% of OOH-contacts in both Flanders and the Netherlands. In Flanders, OOH opioid prescribing went from 2.4% in 2015 to 2.1% in 2017 and then increased to 2.3% in 2019. In the Netherlands, opioid prescribing increased from 1.9% of OOH-contacts in 2015 to 2.4% in 2017 and slightly decreased thereafter to 2.1% of OOH-contacts. In 2019, in Flanders, strong opioids were prescribed in 8% of the OOH-contacts with an opioid prescription. In the Netherlands a strong opioid was prescribed in 57% of these OOH-contacts. Two thirds of strong opioids prescriptions in Flanders OOH were issued for patients over 75, in the Netherlands one third was prescribed to this age group. CONCLUSION: We observed large differences in strong opioid prescribing at OOH-PCSs between Flanders and the Netherlands that are likely to be caused by differences in accessibility of secondary care, and possibly existing opioid prescribing habits. Measures to ensure judicious and evidence-based opioid prescribing need to be tailored to the organisation of the healthcare system

Comparison of methods to identify and characterize Post-COVID syndrome using electronic health records and questionnaires

Background: Some of those infected with coronavirus suffer from post-COVID syndrome (PCS). However, an uniform definition of PCS is lacking, causing uncertainty about the prevalence and nature of this syndrome. We aim to improve understanding by operationalizing different definitions of PCS in different data sources and describing features and clinical subtypes.Methods: We use different methods and data sources. First, a cohort with electronic health records (EHR) from general practices (GPs) and GP out-of-hours-services combined with sociodemographic data for n≈1.000.000 individuals. Second, questionnaires among n=276 individuals who had been infected with coronavirus. Using both data sources, we operationalized definitions of PCS to calculate frequency and characteristics. In a subgroup of the EHR data we conducted community detection analyses to explore possible clinical subtypes of PCS.Results: The frequency of PCS ranged from 15-33%, depending on the method and data source. Across all methods and definitions, the mean age of individuals with PCS was around 53 years and they were more often female. There were small sex differences in the type of symptoms and overall symptoms were persistent for 6 months. Exploratory network analysis revealed three possible clinical subtypes.Discussion: We showed that frequency rates of post-COVID syndrome differ between methods and data sources, but characteristics of the affected individuals are quite stable. Overall, PCS is a heterogeneous syndrome affecting a significant group of individuals who need adequate care. Future studies should focus on care trajectories and qualitative measures such as experiences and quality of life of individuals living with PCS

European clinical practice guidelines for the definition, diagnosis, and treatment of oligometastatic esophagogastric cancer (OMEC-4)

Introduction: The OligoMetastatic Esophagogastric Cancer (OMEC) project aims to provide clinical practice guidelines for the definition, diagnosis, and treatment of esophagogastric oligometastatic disease (OMD). Methods: Guidelines were developed according to AGREE II and GRADE principles. Guidelines were based on a systematic review (OMEC-1), clinical case discussions (OMEC-2), and a Delphi consensus study (OMEC-3) by 49 European expert centers for esophagogastric cancer. OMEC identified patients for whom the term OMD is considered or could be considered. Disease-free interval (DFI) was defined as the time between primary tumor treatment and detection of OMD. Results: Moderate to high quality of evidence was found (i.e. 1 randomized and 4 non-randomized phase II trials) resulting in moderate recommendations. OMD is considered in esophagogastric cancer patients with 1 organ with ≤ 3 metastases or 1 involved extra-regional lymph node station. In addition, OMD continues to be considered in patients with OMD without progression in number of metastases after systemic therapy. 18F-FDG PET/CT imaging is recommended for baseline staging and for restaging after systemic therapy when local treatment is considered. For patients with synchronous OMD or metachronous OMD and a DFI ≤ 2 years, recommended treatment consists of systemic therapy followed by restaging to assess suitability for local treatment. For patients with metachronous OMD and DFI &gt; 2 years, upfront local treatment is additionally recommended. Discussion: These multidisciplinary European clinical practice guidelines for the uniform definition, diagnosis and treatment of esophagogastric OMD can be used to standardize inclusion criteria in future clinical trials and to reduce variation in treatment.</p

Functional communication in children with cerebral palsy: an interrater reliability study

Poster presentatie op conferentie Background: Assessments of functional communication skills of children with cerebral palsy (CP), classified with the Communication Function Classification System (CFCS), often differ between the child's school teacher and the speech language therapist (SLT). Assessment by the SLT is usually based on observations in a clinical setting, which may not be representative of the functional communication skills in daily life. This study evaluated the inter-rater agreement of the CFCS assessed by the school teacher and SLT before and after observation of a communicative situation in the classroom. Methods: Functional communication of 35 children with CP (4 to 18 years; 26 with Alternative and Augmentative Communication, AAC) was classified by the own SLT and teacher using the CFCS. SLT's performed two assessments: the first without additional instructions and the second after observation of the child during a communicative situation in the classroom. For both assessments of the SLT inter-rater agreement on CFCS-level between SLT and teacher was determined using Cohen's weighted kappa statistics. Results: For the whole group, inter-rater reliability was 0.6 before observation in de classroom and 0.7 after observation. In the group without AAC weighted K was 0.67 for both assessments. In the group with AAC weighted K increased from 0.2 to 0.61. Interpretation The increased inter-rater agreement of CFCS classification between teacher and SLT after observation in the classroom, especially for children with AAC, emphasizes the need for professionals to base their CFCS assessment on observation of functional communication in everyday situations

Gender and age concordance between patient and GP: An observational study on associations with referral behaviour

Background Appropriate referral from primary to secondary care is essential for maintaining a healthcare system that is accessible and cost-effective. Social concordance can affect the doctor–patient interaction and possibly also referral behaviour. Aim To investigate the association of gender concordance and age concordance on referral rates in primary care in The Netherlands. Design & setting Electronic health records data (n = 24 841) were used from 65 GPs in The Netherlands, containing referral information, which was combined with demographics of GPs and patients to investigate factors associated with referral likelihood. Method Health records covered 16 different symptoms and diagnoses, categorised as ‘gender sensitive’, ‘age sensitive’, ‘both age and gender sensitive’, or ‘neutral’ based on Delphi consensus. Multi-level logistic regressions were performed to calculate the associations of gender and age concordance with referral status. Results Overall, 16.8% of patients were referred to a medical specialist. The female–male dyad (GP–patient) was associated with a higher referral likelihood (odds ratio [OR] 1.14; 95% confidence interval [CI] = 1.02 to 1.27; P = 0.02) compared with the female–female dyad. Gender discordance was associated with a higher referral likelihood regarding consultations involving ‘gender-sensitive’ symptoms and diagnoses (OR 1.21; CI = 1.02 to 1.44; P = 0.03), and in duo and group practices (OR 1.08; 95% CI = 1.00 to 1.16; P = 0.05). Age concordance was not a significant predictor of referrals in the main model nor in subgroup analyses. Conclusion Gender discordance was associated with a higher likelihood of referring. This study adds to the evidence that gender concordance affects decisions to refer, particularly with respect to symptoms and diagnoses that can be regarded as ‘gender sensitive’