Locked-in syndrome in Sweden, an explorative study of persons who underwent rehabilitation: a cohort study

Svernling, Kajsa; Törnbom, Marie; Nordin, Åsa; Sunnerhagen, Katharina S.

doi:10.1136/bmjopen-2018-023185

Cited by 7 publications

(21 citation statements)

References 33 publications

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“…Figure 1 details the results of the study in a step-by-step manner. Study characteristics of the prognosis of LIS [3,[11][12][13][14][15].…”

Section: Resultsmentioning

confidence: 99%

“…In Table 5 we use the Robins-1 tool to evaluate the risk in the studies regarding the prognosis and long-term treatment of LIS [3,[12][13][14][15][16][17]. Regarding confounding factors, Kohnen et al, including the inability to gather a comprehensive prevalence result due to Netherlands euthanasia or withholding/withdrawing artificial nutrition and hydration in the context of end-of-life decision-making.…”

Section: Bias Assessmentmentioning

confidence: 99%

“…Table 4 describes the outcomes of the studies related to prognosis and long-term treatment of LIS [ 3 , 12 - 17 ].…”

Section: Reviewmentioning

confidence: 99%

“…In Table 5 we use the Robins-1 tool to evaluate the risk in the studies regarding the prognosis and long-term treatment of LIS [ 3 , 12 - 17 ].…”

Section: Reviewmentioning

confidence: 99%

“…describes the outcomes of the studies related to prognosis and long-term treatment of LIS[3,[12][13][14][15][16][17].The patients improve their symptoms and their quality of life. The symptoms resolve quickly and there were long-lasting.…”

mentioning

confidence: 99%

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Locked-In Syndrome: A Systematic Review of Long-Term Management and Prognosis

Halan

Ortíz

Reddy

et al. 2021

Cureus

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Locked-in syndrome (LIS) is a neurological disorder in which there is damage to the ventral pons and caudal midbrain. An ischemic cause, such as basilar artery occlusion, can often lead to LIS. LIS has three subtypes: classical, partial, and total. There is loss of motion in the four extremities in classical LIS, loss of horizontal gaze, and aphasia. In partial LIS, the patient still has some motor function. Complete LIS has the worst outcome because patients cannot blink or have vertical gaze, thus rendering them incapable of communicating. Most cases of LIS occur due to ischemic infarcts. These patients require a great deal of physical rehabilitation to regain partial motor ability and a means to communicate. While the clinical features and pathophysiology are known, the prognosis and long-term treatment remain unknown.We conducted a systematic review using the Meta-Analysis Of Observational Studies in Epidemiology (MOOSE) protocol. We use an advanced PubMed strategy using the inclusion criteria of observational studies or clinical trials conducted in the last 20 years, written in English, and conducted on humans. We excluded systematic reviews, literature reviews, metanalysis, and studies that did not meet the outcomes of our objectives.The prognosis of LIS is not good, and most patients remain locked in, with poor quality of life, especially motor functions. Respiratory failure and depression are big comorbidities. In the acute setting, patients benefit from rapid intervention. The subacute treatment needs to manage aggressively to improve functional scores best. The long-term treatment focus is on the quality of life and managing comorbidities.

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“…Figure 1 details the results of the study in a step-by-step manner. Study characteristics of the prognosis of LIS [3,[11][12][13][14][15].…”

Section: Resultsmentioning

confidence: 99%

Section: Bias Assessmentmentioning

confidence: 99%

“…Table 4 describes the outcomes of the studies related to prognosis and long-term treatment of LIS [ 3 , 12 - 17 ].…”

Section: Reviewmentioning

confidence: 99%

“…In Table 5 we use the Robins-1 tool to evaluate the risk in the studies regarding the prognosis and long-term treatment of LIS [ 3 , 12 - 17 ].…”

Section: Reviewmentioning

confidence: 99%

mentioning

confidence: 99%

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Locked-In Syndrome: A Systematic Review of Long-Term Management and Prognosis

Halan

Ortíz

Reddy

et al. 2021

Cureus

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Locked-in syndrome revisited

Schnetzer

McCoy

Bergmann

et al. 2023

Ther Adv Neurol Disord

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The locked-in syndrome (LiS) is characterized by quadriplegia with preserved vertical eye and eyelid movements and retained cognitive abilities. Subcategorization, aetiologies and the anatomical foundation of LiS are discussed. The damage of different structures in the pons, mesencephalon and thalamus are attributed to symptoms of classical, complete and incomplete LiS and the locked-in plus syndrome, which is characterized by additional impairments of consciousness, making the clinical distinction to other chronic disorders of consciousness at times difficult. Other differential diagnoses are cognitive motor dissociation (CMD) and akinetic mutism. Treatment options are reviewed and an early, interdisciplinary and aggressive approach, including the provision of psychological support and coping strategies is favoured. The establishment of communication is a main goal of rehabilitation. Finally, the quality of life of LiS patients and ethical implications are considered. While patients with LiS report a high quality of life and well-being, medical professionals and caregivers have largely pessimistic perceptions. The negative view on life with LiS must be overthought and the autonomy and dignity of LiS patients prioritized. Knowledge has to be disseminated, diagnostics accelerated and technical support system development promoted. More well-designed research but also more awareness of the needs of LiS patients and their perception as individual persons is needed to enable a life with LiS that is worth living.

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Demographic, Medical, and Clinical Characteristics of a Population-Based Sample of Patients With Long-lasting Locked-In Syndrome

et al. 2023

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Background and ObjectivesPatients with classic locked-in syndrome (LIS), typically caused by ventral pontine stroke, present with quadriplegia, mutism, intact consciousness, and communication skills limited to vertical gazing and/or blinking. Clinical presentations and definitions ofLISdiffer, especially regarding incomplete LIS. In our study, we explored the functional diversity of LIS, its outcomes, and the complexity of its course, along with variations in the location of lesions and their potential significance for outcomes.MethodsA national cohort of patients with vascular LIS who remained in the LIS state for at least 6 weeks according to a functional definition ofLISwas studied. Demographic, medical, and follow-up data, collected between 2012 and 2022, were obtained from the quality register of the Norwegian National Unit for Rehabilitation of Locked-In Syndrome. Outcomes in verbal communication, motor function, and dependency were evaluated according to criteria for being in or not in the LIS state. Modified Rankin Scale and LIS Motor Recovery Scale were applied. Descriptive analysis was performed. The relationship between lesion location and functional outcome was investigated.ResultsThe sample included 51 patients (median age: 55.7 years, 36 males), 43 of whom had follow-up data. Ischemic stroke was the most common etiology (n= 35). Twenty-three patients had emerged from the LIS state, mostly within 2 years after onset. All but one patient achieved some motor improvement, whereas only three achieved full motor recovery, and 88% had a persistently high level of dependence. The 3-year survival rate was 87%. Five patients had an isolated pontine lesion, whereas 80% showed various lesions outside the brain stem. Patients who emerged from the LIS state had a significantly lower prevalence of lesions outside the brain stem than patients who remained in the LIS state did.DiscussionInvestigating an unselected population-based sample of patients with vascular LIS offers important insights into LIS’s functional diversity. Although most patients remained severely disabled, even small improvements in function can substantially increase the potential for activity and participation. Additional lesions outside the brain stem seem to be common in long-lasting LIS and might be prognostic for remaining in the LIS state.

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Locked-in syndrome in Sweden, an explorative study of persons who underwent rehabilitation: a cohort study

Cited by 7 publications

References 33 publications

Locked-In Syndrome: A Systematic Review of Long-Term Management and Prognosis

Locked-In Syndrome: A Systematic Review of Long-Term Management and Prognosis

Locked-in syndrome revisited

Demographic, Medical, and Clinical Characteristics of a Population-Based Sample of Patients With Long-lasting Locked-In Syndrome

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