Post-COVID syndrome manifests with a diverse array of symptoms for which no standard care plan currently exists. Many questions were raised by patients, which underscored the need for a validated patient-reported outcome measure (PROM). Therefore, a post-COVID module was developed to be included in the Assessment of Burden of Chronic Conditions (ABCC-) tool. The ABCC-tool evaluates and visualises the perceived physical, emotional and social burden of one or multiple chronic disease(s) using a balloon diagram and aims to facilitate person-centred care and structured discussions between patients and healthcare professionals. This study explores the patients’ perspective on the content of the ABCC-tool for post-COVID and the tool’s usability in a home-based setting.

All patients who completed the ABCC-tool for post-COVID were invited for an online semi-structured interview. We selected post-COVID patients who had used the tool in the past three months. Interviews were audio recorded and analysed using a thematic approach with Atlas.ti version 23.

Nineteen post-COVID patients (10 males, mean age 56) were interviewed between May and August 2024. The tool was regarded as user-friendly, and patients indicated they would use the tool again in the future. Patients valued the tool’s broad range of topics, some of which are often overlooked in standard healthcare consultations. The tool was comprehensible and relevant according to all patients. The balloon diagram was easy to understand, but a legend explaining the colours of the balloons was preferred. Other suggestions for improvement included adding open-text fields and periodic reminders to increase usability and adding long-term data.

The ABCC-tool is a promising instrument for post-COVID patients, offering a structured way to monitor and communicate experienced burden in addition to standard healthcare consultations. Refinements addressing usability and comprehensiveness are recommended to facilitate its integration into clinical practices.

To explore whether routine electronic healthcare records can be used to identify triggers for initiating advance care planning (ACP) and the optimal time window to initiate ACP. We aimed to assess the prevalence of triggers for initiating ACP as defined for use in routine data, whether their presence is associated with death, and what their position is relative to a previously identified ‘optimal time window for ACP’.

Nested case-control study within a large dynamic population cohort dataset.

Primary care population-based, anonymised data extracted from GP centres in the South Holland province, The Netherlands.

We selected records of individuals aged ≥65 registered with their general practice from 1 Jan 2014 to 1 Jan 2017. Cases were individuals who died between 1 Jan 2017 and 1 Jan 2020. Controls were individuals who remained alive. Cases were matched by age to controls in a 1:4 ratio.

Outcomes include prevalence of triggers for ACP in the records of deceased and living individuals; association of the triggers’ presence with death; timing of the identified triggers in deceased individuals relative to the ‘optimal time window for ACP’.

We included 17098 records, 4139 from deceased individuals (mean age 81) and 12959 from living individuals (mean age 79). Triggers most strongly associated with death were consultations concerning malignancy (OR 8.35, 95% CI 7.42 to 9.41), hospital admissions (OR 7.32, 95% CI 6.75 to 7.94), emergency department referrals (OR 7.11, 95% CI 6.52 to 7.75), registered home visits (OR 5.97, 95% CI 5.51 to 6.47), consultations concerning heart failure (OR 5.25, 95% CI 4.59 to 5.99), dementia (OR 4.75, 95% CI 3.99 to 6.56), opioid prescriptions (OR 4.58 (4.25–4.93), consultations concerning general decline/feeling old (OR 4.15, 95% CI 3.72 to 4.64) and skin ulcers/pressure sores (OR 4.04, 95% CI 3.55 to 4.61). Those closest to the median of the optimal time window for ACP were consultations regarding dyspnoea, general decline/feeling old, heart failure, skin ulcers/pressure sores and fever, opioid prescriptions, emergency department referrals, registered home visits and hospital admissions.

Clinical triggers for initiating ACP in general practice can be recognised within the routine electronic health records and they align well with the ‘window of opportunity’ to initiate ACP.

To explore perceptions regarding the approved and actual prescribed doses of protein kinase inhibitors (PKIs) in clinical practice in the European Union among medicine regulators and healthcare professionals (HCPs).

A qualitative descriptive study was conducted using semistructured interviews, continuing until thematic saturation was reached. Thematic analysis was undertaken using a combined deductive-inductive approach. Deductive main analytical themes were derived from the theoretical framework of questioning-based policy design, namely problem sensing, problem categorisation and problem decomposition. Subthemes were generated inductively and could coherently be situated within these main analytical themes.

Interviews were held online or in person at a location convenient for the interviewee, depending on the participant’s preference.

Seven medicine regulators involved in the regulation of cancer medicines—including PKIs—and 10 HCPs prescribing PKIs in clinical practice, from various countries within Europe, were included.

Regulators highlighted insufficient attention to optimal dose finding, yielding approved doses often based on outdated maximum tolerated dose concepts, leading to uncertainties in efficacy and safety. HCPs reported using alternative dosing strategies in clinical practice to improve tolerability and quality of life (QoL) but noted a lack of robust evidence to guide such adjustments and faced legal constraints to deviate from the approved dose. Participants emphasised the need for improved pre-approval and post-approval dose optimisation to improve safety, enhance QoL and bridge gaps between trial data and real-world patient diversity.

Collaborative efforts involving multistakeholders including HCPs, regulators, pharmaceutical companies, insurers, governments and patient representatives are essential to advance dose optimisation and improve patient-centric outcomes, with further research needed to understand these stakeholders’ perspectives.

Living with epilepsy, especially drug-resistant epilepsy (DRE), imposes several challenges for people diagnosed with the condition. These challenges include the physical and mental implications of epilepsy on both caregivers and patients with epilepsy. For the more than 120 000 individuals living with this neurological disorder in the Netherlands, along with their families, daily activities become hazardous, limited and costly, significantly affecting their health-related quality of life (HRQoL). As data on the burden of epilepsy in the Netherlands are lacking, studies attempting to capture the impact of epilepsy on individuals, caregivers and society are needed to enhance understanding and help address the burden of epileptic seizures.

The study is part of the AIM@EPILEPSY project. The project aims to develop a planning suite enabling cost-saving, minimally invasive treatment for epilepsy. By surveying 330 people with epilepsy and an anticipated sample of 150–200 informal caregivers across the Netherlands, using standardised questionnaires focusing on associated societal costs and the impact on HRQoL, this bottom-up, prevalence-based prospective study aims to understand the societal burden of DRE in the Netherlands. The data will be collected at 0, 3, 6 and 12 months of follow-up. The study results will describe the economic impact of epilepsy, focusing on cost-of-illness () and HRQoL (utilities) in the Netherlands.

The proposed study was approved by the Maastricht University Medical Ethics Review Committee (Approval reference: FHML-REC/2024/067/Amendment/2024_16). The result of the study is planned to be published in a peer-reviewed journal and presented at international and local scientific conferences.