Unresponsive wakefulness syndrome: Outcomes from a vicious circle

Erp, Willemijn S. van; Lavrijsen, Jan C. M.; Vos, Pieter E.; Laureys, Steven; Koopmans, Raymond T.C.M.

doi:10.1002/ana.25624

Cited by 21 publications

(24 citation statements)

References 45 publications

(104 reference statements)

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“…Moreover, while the exceptionally low Dutch estimate (0.2: Lavrijsen et al, 2005) was obtained on the basis of studying nursing homes only, a later Dutch study encompassing nursing homes, hospitals, rehabilitation centers, and hospices, revealed an even lower estimate close to 0.15 (van Erp et al, 2015). These differences can probably be attributed to different thresholds existing in different countries for termination of life-sustaining measures in UWS or in coma preceding UWS (van Erp et al, 2020). As regards children, more than 25 years ago Ashwal et al (1992) estimated the prevalence of UWS (vegetative state) as 0.63 per 100 000 but supposed in their discussion that the real number must be somewhat higher.…”

Section: Introductionmentioning

confidence: 91%

Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome

Chadasch¹,

Kotchoubey

2021

Preprint

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Background: The article examines life conditions in families living together with a child in an Unresponsive Wakefulness Syndrome (UWS). Such families experience severe stress at financial, logistical, and existential level.Methods: We investigated a large sample of families living with a UWS child (comprising 13% of the total population) and compared these families with families without a chronically ill child. A set of four questionnaires aimed to evaluate life conditions entails a total of 204 items. One of the questionnaires was developed by the corresponding author specifically for this study. The questionnaires were positively accepted by the persons concerned and permitted us to test six specific hypotheses. Results: Life satisfaction (LS) in families with a UWS child was significantly lower than in control families. LS was significantly affected by external situational factors (everyday support, home visits, support by a doctor, nursing service, health insurance, etc.). Self-management skills were on average lower in families with a UWS child than in controls. These skills strongly and directly correlated with LS. Further, LS was not significantly related to the acceptance of feelings and negatively correlated with the floods of emotions. The relationship with the own child was equally satisfactory in families with and without a UWS child indicating that the families regard their UWS child as a full family member.Conclusions: The data show that happy life is possible in families living together with a UWS child. They further specify conditions for satisfactory life under multiple highly severe challenges. Personal self-management skills, coping strategies, and resilience, as well as outside social support, appear to be critical factors.

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Section: Introductionmentioning

confidence: 91%

Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome

Chadasch¹,

Kotchoubey

2021

Preprint

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“…First of all, PDOC represent a dramatic condition in itself with a sudden and huge impact on both patients and their families. PDOC are generally considered to have a poor outcome [11][12][13][14][15]. UWS has even been described as 'a fate worse than death' [16].…”

Section: Challenges In Pdoc-carementioning

confidence: 99%

“…PDOC confronts families with complex intertwined feelings of grief, hope and ambiguous loss at the same time [ 17 , 18 ]. Secondly, a low worldwide prevalence for UWS of 0.2 to 6.1 per 100.000 individuals of the total population makes it difficult for clinicians to master the required diagnostic and therapeutic expertise [ 2 , 11 , 19 ]. Third, there is a consistent high misdiagnosis rate of ca.…”

Section: Introductionmentioning

confidence: 99%

Intensive neurorehabilitation for patients with prolonged disorders of consciousness: protocol of a mixed-methods study focusing on outcomes, ethics and impact

et al. 2021

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Background Prolonged disorders of consciousness (PDOC) are amongst the severest sequelae of acquired brain injury. Evidence regarding epidemiology and rehabilitation outcomes is scarce. These knowledge gaps and psychological distress in families of PDOC patients may complicate clinical decision-making. The complex PDOC care and associated moral dilemmas result in high workload in healthcare professionals. Since 2019, all PDOC patients in the Netherlands have access to intensive neurorehabilitation up to 2 years post-injury provided by one rehabilitation center and four specialized nursing homes. Systematic monitoring of quantitative rehabilitation data within this novel chain of care is done in a study called DOCTOR. The optimization of tailored PDOC care, however, demands 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 gain insight in the qualitative outcomes of PDOC rehabilitation and impact of PDOC on patients, their families and healthcare professionals. Methods Nationwide multicenter prospective cohort study in the settings of early and prolonged intensive neurorehabilitation with a two-year follow-up period, involving three study populations: PDOC patients > 16 years, patients’ family members and healthcare professionals involved in PDOC care. Families’ and healthcare professionals’ views on quality of rehabilitation outcomes, end-of-life decisions and dying will be qualitatively assessed using comprehensive questionnaires and in-depth interviews. Ethical dilemmas will be explored by studying moral deliberations. 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 exploring quality of outcomes, end-of-life decisions and dying in PDOC patients and the impact of PDOC in a novel chain of care spanning the first 24 months post-injury in specialized rehabilitation and nursing home settings. Newly acquired knowledge in TOPDOC concerning quality of outcomes in PDOC rehabilitation, ethical aspects and the impact of PDOC will enrich quantitative epidemiological knowledge and outcomes arising from DOCTOR. Together, these projects will contribute to the optimization of centralized PDOC care providing support to PDOC patients, families and healthcare professionals.

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“…In this issue, Willemijn van Erp and colleagues describe the outcomes of a nationwide cohort of patients in the Netherlands diagnosed with unresponsive wakefulness syndrome (UWS), better known in the United States as vegetative state (VS) . Outcomes of this cohort were noteworthy for 2 findings: the nearly complete absence of referrals to multidisciplinary neurorehabilitation centers at hospital discharge, and that half of the patients died from withdrawing medically provided hydration and nutrition—a decision triggered most often by an intercurrent illness—which was a mode of death that increased in frequency during the study period.…”

mentioning

confidence: 99%

“…The authors scrutinized the process of care of UWS/VS patients and identified a series of deficiencies they grouped into 3 categories that comprised a “vicious circle”: (1) epidemiological limitations resulting from diagnostic and prognostic uncertainty given the small number of patients, (2) suboptimal treatment of these patients because of disorganized systems of care, and (3) suboptimal clinical decision‐making that favored allowing them to die by withdrawing medically administered hydration and nutrition. To address these deficiencies, the authors recommended interventions to improve the accuracy of diagnosis and prognosis, improve the systematization of care, and improve critical decision‐making to enhance the quality of medical treatment …”

mentioning

confidence: 99%

Clinical Decision‐Making for Patients with Disorders of Consciousness

Bernat

2019

Annals of Neurology

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Unresponsive wakefulness syndrome: Outcomes from a vicious circle

Cited by 21 publications

References 45 publications

Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome

Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome

Intensive neurorehabilitation for patients with prolonged disorders of consciousness: protocol of a mixed-methods study focusing on outcomes, ethics and impact

Clinical Decision‐Making for Patients with Disorders of Consciousness

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