The Value of Long-Term Care to Scientific Research and Vice Versa, As Demonstrated by Disorders of Consciousness


  • Jan Lavrijsen
  • Conny Span-Sluyter
  • Berno Overbeek
  • Willemijn van Erp


  • To learn about the steps in developing research and academic medical long-term care concerning PDOC
  • To know the latest scientific results of epidemiology, clinical course and decision-making concerning PDOC
  • To become aware of the basic elements of appropriate long-term care for patients with PDOC and the role of science and collaboration


How do we reach the best possible outcome for each individual patient? This question covers just about all clinical and scientific quests in the field of acquired brain injury. To answer it, we tend to look at the earliest stages of ABI: scoop-and-run interventions, decompressive craniotomy, hypothermia, etcetera. But true outcomes cannot be studied in hospital. For most patients, the story has only just started when they are discharged from acute care.

In this symposium, we will focus on exactly that story and on its value for science. Moreover, we will demonstrate the importance and feasibility of academic, evidence-based long-term care for patients with prolonged disorders of consciousness (PDOC) and its lessons for the complete chain of care.

Long-term outcomes of PDOC have been studied from a long-term care perspective in the Netherlands for decades. Attendees will be shown the roadmap to and yields of this scientific practice, just as much as the challenges we brought to light.

Lavrijsen will present an overview of scientific lessons from 1990 until now; from the first case reports about treatment scenarios, clinical course and decision-making, to expert meetings and a first prevalence study. With innovative research collaboration with a variety of medical specialists, including a pilot study on Deep Brain Stimulation. It will be explained how science is recently connected to a national network of expertise for patients with severe acquired brain injury and their families. Where knowledge is developed, applied and exchanged in a shared mission to improve care.  Ultimately leading to the recent report ‘Toward more awareness – appropriate care for patients with prolonged disorders of consciousness’, where science was connected to the best practice in identifying the main barriers and solutions to achieve appropriate care.

Van Erp will focus on recent epidemiological findings, misdiagnosis and unexpected recovery of consciousness, and qualitative research on decision-making in disorders of consciousness from physicians’ perspectives. She will present various examples of successful and unsuccessful attempts at connecting science to practice, and acute to post-acute and long-term care medical professionals.

Span-Sluyter will address the ethical dilemmas in long-term care, with a focus on conflicts about (dis)continuing medical treatment, including artificial nutrition and hydration. By moral deliberations in nursing homes and interviews with families, she provides a first insight in the way families and multidisciplinary teams deal with the dilemmas.

Overbeek presents the first case reports on the different clinical course of patients in UWS and MCS in long-term care. And recent results of an integrative review on visual pursuit and fixation as diagnostic signs of awareness, as a basis for diagnosing MCS and a prevalence study.

Attendees will be asked to actively participate through a smartphone based real-time quiz.

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