HELSENORGE

"How I live my Locked-in Life" - a study of the Norwegian population of patients with Locked-in syndrome

Patients with locked-in syndrome are unable to move or speak, but are cognitively functioning and able to communicate by eye movements. This study seeks to provide a better understanding of health, participation, self-reported autonomy and quality of life in patients with locked-in syndrome.

​Background

While studies report high quality of life (QoL) in patients with locked-in syndrome (LIS), clinical experience indicates differences in healthcare provided and QoL. Also internationally, there are few studies on LIS, often including few participants, with low participation rate, retrieving information from a proxy or by a proxy being present. To fill the existing knowledge gap, larger studies, including more patients are needed.

In Norway, all stroke and rehabilitation units are obliged to refer patients with LIS to the Norwegian National Unit for Rehabilitation of Locked-in Syndrome located at Sunnaas Rehabilitation Hospital. As far as we know, the unit’s patient group represents the complete Norwegian population of LIS-patients, which means a unique opportunity to, for the first time, systematically study a national cohort of patients living with LIS.

The overall aim of this study is to assess a cohort of unselected patients in the Norwegian LIS population, providing a better understanding of health, participation, self-reported autonomy and QoL. Access to unique data from the national service for LIS patients will reveal novel and detailed knowledge about LIS. This knowledge will enable improved health care services for the LIS population, with some of the results possibly being conveyable for other patient groups.

The study will be the largest study of an unselected LIS population so far in a global perspective, and include new, previously not investigated aspects.

Methods

The project will explore the following three research questions:

  • What are the demographic and medical characteristics of the Norwegian LIS population?
  • What is everyday life for LIS patients in Norway like?
  • How do Norwegian LIS patients perceive their autonomy, and is their level of autonomy linked to quality of life and levels of activity and participation?

The study uses data already collected from the quality register of the national unit to explore the demographic and medical characteristics of the LIS population and of their everyday life. In addition, by collecting new data, the study will explore how the patients perceive their autonomy, and whether this is linked to quality of life and participation; for this purpose, questionnaires will be used during ambulant visits, and interviews with some of the participants will shed further light on their experiences with living a locked-in life.

Project group

  • Frank Becker, project leader and main supervisor
  • Helle Walseth Nilsen, PhD-candidate, specialist in Physical Medicine and Rehabilitation
  • Anne Catrine Trægde Martinsen, co-supervisor, research director, professor
  • Katharina Stibrant Sunnerhagen, co-supervisor, professor
  • Wenche Løseth, user representative (Norwegian National Unit for Rehabilitation of Locked-in Syndrome)
  • Petter Gundhus, user representative (Norsk forening for slagrammede)
  • Inger Johansen, familiy doctor and rehabilitation researcher
  • Marit Kirkevold, professor
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