Dataset Information

Will time heal? A long-term follow-up of severe disorders of consciousness.

ABSTRACT:

Objective

Little is known about the long-term outcome of patients with disorders of consciousness (DOCs) such as unresponsive wakefulness syndrome (UWS) or minimally conscious state (MCS). We describe the disease course of a large group of DOC patients 2-14 years after brain damage.

Methods

In 102 patients (59 UWS, 43 MCS), clinical and demographic variables from disorder onset were related to the patients' outcomes 2-14 years after discharge. Etiology, age at event, time since onset, gender, and home care versus institutional care were assessed as predictors and similarities and differences between UWS and MCS determined.

Results

Seventy-one percent of the patients had passed away or showed no improvement in condition. Twenty-nine percent regained consciousness and developed some communicative capacities. The time a syndrome persisted did not predict clinical outcome in either condition. Six patients regained consciousness after more than 3 years. Of these, five had been UWS (42% of recovered UWS, three traumatic origins, one tumor, one hypoxia) and one MCS (5% of recovered MCS, traumatic origin). In UWS, younger patients, those cared for at home, and in tendency those with traumatic origins, were more likely to recover. In MCS, no reliable outcome predictors were found.

Interpretation

Current predictors are too vague for single patient predictions. This study identifies a subgroup of late-recovering patients, casting doubt on the 12-month boundary, after which UWS is stated to be permanent. Routine reexamination, use of more reliable outcome predictors and research determining optimal care settings are needed to inform the crucial decisions made for these patients.

SUBMITTER: Steppacher I

PROVIDER: S-EPMC4184668 | biostudies-literature | 2014 Jun

REPOSITORIES: biostudies-literature

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Publications

Will time heal? A long-term follow-up of severe disorders of consciousness.

Steppacher Inga I Kaps Michael M Kissler Johanna J

Annals of clinical and translational neurology 20140519 6

<h4>Objective</h4>Little is known about the long-term outcome of patients with disorders of consciousness (DOCs) such as unresponsive wakefulness syndrome (UWS) or minimally conscious state (MCS). We describe the disease course of a large group of DOC patients 2-14 years after brain damage.<h4>Methods</h4>In 102 patients (59 UWS, 43 MCS), clinical and demographic variables from disorder onset were related to the patients' outcomes 2-14 years after discharge. Etiology, age at event, time since on ...[more]

PMID: 25356410

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Project description:PurposeTo assess long-term effects of genotype on chorioretinopathy severity in patients with mitochondrial trifunctional protein (MTP) disorders.DesignRetrospective case series.ParticipantsConsecutive patients with MTP disorders evaluated at a single center from 1994 through 2015, including 18 patients with long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency (LCHADD) and 3 patients with trifunctional protein deficiency (TFPD).MethodsLocal records from all visits were reviewed. Every participant underwent a complete ophthalmic examination and was evaluated by a metabolic physician and dietitian. Nine patients underwent ancillary funduscopic imaging including optical coherence tomography (OCT) and OCT angiography.Main outcome measuresThe primary outcome measure was best-corrected visual acuity at the final visit. Secondary outcome measures included spherical equivalent refraction, visual fields, electroretinography B-wave amplitudes, and qualitative imaging findings.ResultsParticipants were followed up for a median of 5.6 years (range 0.3-20.2 years). The median age of LCHADD participants at initial and final visits was 2.3 and 11.9 years, whereas that for TFPD participants at initial and final visits was 4.7 and 15.5 years, respectively. Four long-term survivors older than 16 years were included (3 with LCHADD and 1 with TFPD). The LCHADD participants demonstrated a steady decline in visual acuity from an average of 0.23 logarithm of the minimum angle of resolution (logMAR; Snellen equivalent, 20/34) at baseline to 0.42 logMAR (Snellen equivalent, 20/53) at the final visit, whereas TFPD patients maintained excellent acuity throughout follow-up. Participants with LCHADD, but not TFPD, showed an increasing myopia with a mean decrease in spherical equivalent refraction of 0.24 diopters per year. Visual fields showed sensitivity losses centrally associated with defects on OCT. Multimodal imaging demonstrated progressive atrophy of the outer retina in LCHADD, often preceded by the formation of outer retinal tubulations and choriocapillaris dropout. Electroretinography findings support the more severe clinical profile of LCHADD patients compared with TFPD patients; the function of both rods and cones are attenuated diffusely in LCHADD patients, but are within normal limits for TFPD patients.ConclusionsDespite improved survival with early diagnosis, medical management, and dietary treatment, participants with the LCHADD subtype of MTP disorder continue to demonstrate visually disabling chorioretinopathy. Multimodal imaging is most consistent with choriocapillaris loss exceeding photoreceptor loss.

Dataset Information

Will time heal? A long-term follow-up of severe disorders of consciousness.

Objective

Methods

Results

Interpretation

Publications

Will time heal? A long-term follow-up of severe disorders of consciousness.

Similar Datasets

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