Measuring in the chain
Research into long-term disorders of consciousness: outcomes of a new care chain
Since 2019, a lot has changed in the care for people with a long-term disorder of consciousness (LBS) in the Netherlands. Patients now receive a specialized treatment program within EENnacoma: 14 weeks of Early Intensive Neurorehabilitation at Libra Rehabilitation & Audiology, followed where necessary by Long-Term Intensive Neurorehabilitation at one of four specialized nursing homes, up to 24 months after the brain injury. But a lot is still unknown about LBS. For example, we can hardly predict who will recover and who will not, nor what the meaning of that recovery will be for the patient and his or her loved ones. Moreover, the new treatment options also have ethical implications. Some patients are now, in the first period after the brain injury, treated longer than before. Is that good? What dilemmas arise? And what is the impact of LBS on the patient's family and on the caregivers? The answers to these questions are indispensable in being able to continue to provide appropriate care to LBS patients on a structural basis.
Purpose
The aim of this research project is to map the course of long-term disorders of consciousness in the Dutch VIN-LIN chain, so that future patients receive the right care based on scientific knowledge. To this end, a prospective cohort study will be carried out by the care chain, consisting of 2 sub-projects:
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DOCTOR: a quantitative, observational study with a systematic outcomes recording up to 2 years after injury;
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TOPDOC: a qualitative study of decision-making, ethical dilemmas, quality of dying and impact on care providers, followedfor 4 years on how patients who are admitted to the VIN program in a state of lowered consciousness and possibly later in a LIN program in one of the 4 institutions that offer it.
