Advancing Epilepsy Care: From Rescue Strategies to Value-Based Outcomes

Advancing Epilepsy Care: From Rescue Strategies to Value-Based Outcomes

In epilepsy care, success isn’t just about stopping seizures: it is improving quality of life. Yet the traditional focus on clinical metrics often overlooks what truly matters to patients.

Value-based healthcare flips this model, and patient-reported outcome measures (PROMs) are central to this shift. When implemented effectively, PROMs can guide individual care, support shared decision-making, and inform system-level improvements, from benchmarking to outcome-based reimbursement.

In this webinar, speakers explain what value-based healthcare is, why measuring what matters to patients matters, and how it all relates to epilepsy.

Value-based health care and patient-related outcome measures

Value-based healthcare is the only model that “unites the patient, the payor, and the provider”, said Dr Steffi Jírů-Hillmann, research associate at Germany’s Institute of Clinical Epidemiology and Biometry University of Würzburg.

Currently, we operate in a fee-for-service model that rewards volume, rather than value, and creates a “zero-sum game with misaligned incentives”. “Payers try to minimise costs, providers are incentivised to maximise volume to stay profitable, and the patient just wants to get better,” she went on. “As long as complications are revenue streams, we will struggle to improve value.”

Harvard professors Michael E. Porter and Elizabeth Teisberg introduced the concept of value-based healthcare in their 2006 book, Redefining Healthcare. It defines “value” as the health outcomes that matter most to patients divided by the cost of delivering those outcomes.

“If we don't measure the right outcomes, the rest of the strategy has no compass,” said Steffi, adding that there is currently a “disconnect” between what matters to clinicians, and what matters to patients. “To close this gap, we need patient-reported outcome measures (PROMs)…. we need to know how patients measure value.”

Standardised instruments, whether generic or disease-specific, comprise validated questions that convert subjective perception into an objective score. “Once we have a number, we can track it, compare it, and improve it,” said Steffi, adding “we don’t just collect PROM data for the sake of research: we put it to work”.

At the individual level, patient-reported outcome (PROs) data are a clinical tool, providing a holistic view of how a condition or treatment impacts perceived health, and supporting practice and shared decision making in real time. At the system level, its uses range from public reporting and health economics, and as a basis for pay-for-performance healthcare models.

“When we aggregate this data, it becomes the fuel for value-based healthcare. It allows for benchmarking between clinics, public reporting for transparency and, ultimately, outcome- based reimbursement for performance. The key message here is measuring to drive improvement, both for the individual patient and for the healthcare system as a whole.

Many value-based healthcare initiatives fail not because the concept is flawed, but because they fall into predictable traps. One of the most common is the “data graveyard,” where paper forms or disconnected IT systems collect information that is never used in practice. Another is the “lone wolf” problem, where a single enthusiast drives the project without broader clinical buy-in, leading to resistance and collapse. PROMs also fail when they are treated as an added administrative burden, rather than integrated into everyday workflows. Finally, as long as healthcare is paid for through fee-for-service models, organisations are financially rewarded for volume rather than outcomes, challenging sustainable change.

To succeed, Steffi said clinicians must lead the change from within, supported by standardised and validated instruments. PROMs need to be digitally integrated and simple to use, while incentives must reward quality instead of quantity. Strong organisational and political support is essential to create an environment where measuring outcomes leads to real improvement rather than extra work, she added.

“It is not just about saving money or filling out spreadsheets: it's about shifting our focus from treating a diagnosis to empowering a life. We have the strategy… and we have the tools… now it's up to us to use them.”

Which outcomes should be measured in epilepsy?

Epilepsy is about more than seizures. People living with the condition may also experience anxiety, depression, neurodevelopment and cognitive symptoms, as well as sleep and pain disorders. All of this contributes to reduced health-related quality of life (HRQoL), explained Dr James Mitchell, neurology registrar at The Walton Centre NHS Foundation Trust in Liverpool.

Despite this, health systems tend to focus on seizures and clinical data, which do not always reflect the patient's priorities. PROs are crucial, but can be challenging to design, James said, adding that the first consideration should always be relevance. “It is really important that we include the lived-experience perspective when we decide what we should be measuring,” he explained. In addition, where PROMs are collected, they can vary from study to study or centre to centre, which limits their system-level usefulness, and many are not feasible for use in routine care.

The International Consortium for Health Outcomes Measurement (ICHOM) Sets of Patient-Centred Measures for Epilepsy seek to overcome these challenges. These are freely available standardised instruments, one for adults and one for paediatrics, and have recently been published in Epilepsia. They were developed for clinical practice using a global Delphi process that involved more than 100 clinicians, researchers and people with lived experience of the condition.

James explained that a total of 109 outcomes were shortlisted, and then refined down to 20 core outcome concepts, spanning four major domains. First, they include essential clinical outcomes, such as seizure frequency and severity, consequences of seizures, status epilepticus, and unplanned hospital use. Second, they capture key neuropsychological outcomes that strongly shape daily life, including anxiety, depression, suicidality, cognitive difficulties, and sleep problems. The sets also measure functional and social impact, such as whether a person can work or attend school, drive, maintain relationships, and participate fully in everyday life. Finally, the framework includes outcomes that are critical for specific populations, such as pregnancy-related complications in women with epilepsy and developmental outcomes in infants and children.

The project also recommends validated tools to measure each concept, which, James explained, were chosen for feasibility, availability, and quality, then approved through international consensus. For adults, for example, they are the Quality of Life 10 (QOL-10), GAD-2 for anxiety, PHQ-9 for depression and suicidality, PROMIS Cognitive Function Short Form, and PROMIS Sleep Disturbance Short Form. Overall, there are 29 items, which takes around 10 minutes to complete.

The paediatric sets “are a little bit longer”, with between 40 to 90 items and taking 10 to 20 minutes. They are age-adapted, and often include parent proxy reports for younger children, while older children can provide self-reports alongside their parents.

Summing up, James said that people living with epilepsy prioritised outcomes other than seizures and side effects. “These particularly include sleep-related outcomes, symptoms of depression and anxiety, and the impact of epilepsy and its treatment on cognition. All of our stakeholder groups expressed a desire for HRQoL to be tracked over time in clinic settings, but many of us do not do this at the moment.” The ICHOM sets provide a simple, validated, feasible way to change that.