Intensive neurorehabilitation for patients with long-term disorders of consciousness: protocol of a mixed-methods study focused on outcomes, ethics and impact.
Sharma-Virk, M., van Erp, W.S., Lavrijsen, J.C.M. & Koopmans, R.T.C.M.
22 March 2021Abstract
Background
Long-term disorders of consciousness (PDOC) are among the most serious consequences of acquired brain injury. Evidence regarding epidemiology and rehabilitation outcomes is scarce. These knowledge gaps and psychological problems in families of PDOC patients can complicate clinical decision-making. The complex PDOC care and associated moral dilemmas result in a high workload among healthcare professionals. Since 2019, all PDOC patients in the Netherlands have access to intensive neurorehabilitation for up to 2 years after injury, provided by one rehabilitation center and four specialized nursing homes. Systematic monitoring of quantitative rehabilitation data within this new chain of care is done in a study called DOCTOR. However, the optimization of customized PDOC care requires a better understanding of the impact of PDOC on patients, their families, and healthcare professionals and their views on rehabilitation outcomes, end-of-life decisions, and quality of dying. The True Outcomes of PDOC (TOPDOC) study aims to understand the qualitative outcomes of PDOC rehabilitation and the impact of PDOC on patients, their families, and healthcare professionals.
Methods
Nationwide multicenter prospective cohort study in the setting of early and long-term intensive neurorehabilitation with a two-year follow-up period, involving three study populations: PDOC patients > 16 years of age, family members of patients, and healthcare professionals involved in PDOC care. The views of families and healthcare professionals on
The quality of rehabilitation outcomes, end-of-life decisions, and dying will be qualitatively assessed using comprehensive questionnaires and in-depth interviews. Ethical dilemmas are explored by studying moral considerations. The impact of providing care to PDOC patients on healthcare professionals will be studied in focus groups.
Discussion
To our knowledge, this is the first nationwide study to examine the quality of outcomes, end-of-life and death decisions in PDOC patients, and the impact of PDOC in a novel chain of care covering the first 24 months after injury in specialized rehabilitation and nursing home settings. Newly acquired knowledge in TOPDOC on the quality of outcomes in PDOC rehabilitation, ethical aspects and the impact of PDOC will enrich the quantitative epidemiological knowledge and outcomes of DOCTOR. Together, these projects will contribute to the optimization of centralized PDOC care that provides support to PDOC patients, families, and healthcare professionals.
Keywords
Long-term disorders of consciousness, Acute brain injury, Rehabilitation outcomes, End-of-life decisions