ALS multidisciplinary clinic and survival

Zoccolella, Stefano; Beghi, Ettore; Palagano, G.; Fraddosio, Angela; Guerra, Vito; Lepore, Vito; Simone, I. L.; Lamberti, Paolo; Serlenga, L; Logroscino, Giancarlo

doi:10.1007/s00415-006-0401-y

Cited by 62 publications

(22 citation statements)

References 27 publications

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“…Selection according to socioeconomic status may occur. Compared to patients followed up by general neurology centers, those attending ALS clinics were more likely to receive Riluzole [31,32], were younger [32] and underwent percutaneous endoscopic gastrostomy and noninvasive ventilation more often [33]. Referral bias influenced survival estimates [34].…”

Section: Discussionmentioning

confidence: 99%

The Use of Antidepressant Medication before and after the Diagnosis of Amyotrophic Lateral Sclerosis: A Population-Based Cohort Study

et al. 2015

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Background: The prevalent use of antidepressants (ATDs) in patients with Amyotrophic Lateral Sclerosis (ALS) varies across cross-sectional and clinic-based published studies. This population-based cohort study assesses the real-world prevalence of the use of ATDs, its trajectory and the association of incident use with clinical characteristics. Methods: All patients with incident ALS in the Friuli Venezia Giulia region, Italy, from 2002 to 2009, were identified through multiple sources including health databases. Diagnosis was validated through clinical documentation review. ATDs prescriptions from 2000 to 2011 were obtained from regional database. The trajectory was estimated through generalized estimating equations for repeated measures logistic regression and the Hazard ratio (HR) of initiating ATDs through multivariate proportional hazard Cox regression. Results: In this cohort of 261 ALS cases, age-, sex-adjusted prevalence of the use of ATDs was 37.3%, higher than in general population. The trajectory increased by 16% in 1-year period across diagnosis. Age ≤67 years at diagnosis (HR 1.28, 95% CI 0.84-1.95) and bulbar onset (1.43, 95% CI 0.90-2.26) were positively associated with initiating ATDs after diagnosis. Conclusions: More than one-third of patients used ATDs. Depression may occur more frequently than previously reported. Depression may precede motor alterations and be related to both ALS diagnosis and progression.

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Section: Discussionmentioning

confidence: 99%

The Use of Antidepressant Medication before and after the Diagnosis of Amyotrophic Lateral Sclerosis: A Population-Based Cohort Study

et al. 2015

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“…The aforementioned studies reported better outcomes when compared to care that was not multidisciplinary; although, as comparison groups are not always well matched, generalized comparison is difficult. Zoccolella et al33 found that MDC care did not improve survival when compared to general neurology care. However, respiratory and nutritional interventions were low for these groups, and the MDC did not link directly to community-based services or palliative care services 33.…”

Section: Introductionmentioning

confidence: 98%

Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach

Hogden¹,

Foley²,

Henderson³

et al. 2017

JMDH

136

107

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Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2–3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients’ quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. This review examines the nature of specialized multidisciplinary care in ALS and draws on a broad range of evidence that has shaped current practice. The authors explain how multidisciplinary ALS care is delivered. The existing models of care, the role of palliative care within multidisciplinary ALS care, and the costs of formal and informal care are examined. Critical issues of ALS care are then discussed in the context of the support rendered by multidisciplinary-based care. The authors situate the patient and family as key stakeholders and decision makers in the multidisciplinary care network. Finally, the current challenges to the delivery of coordinated interprofessional care in ALS are explored, and the future of coordinated interprofessional care for people with ALS and their family caregivers is considered.

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“…This form of care has been shown to prolong lifespan and to positively impact quality of life (QOL) in patients with ALS in most(6–10), but not all (11,12), comparative studies of multidisciplinary care versus other forms of care. A key part of the supportive care is the management of a wide variety of symptoms.…”

Section: Introductionmentioning

confidence: 99%

Patient-reported problematic symptoms in an ALS treatment trial

Raheja

Stephens

Lehman

et al. 2016

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Objectives This study was undertaken to determine which symptoms are perceived to be most problematic for patients with ALS and how their severity changes over time. Methods A retrospective study was performed of data from a randomized, double-blind, placebo-controlled trial of ceftriaxone in ALS. Participants completed the ALS Specific Quality of Life Instrument (ALSSQOL) at baseline and at intervals up to 96 weeks. Ten ALSSQOL items ask participants to rate how problematic symptoms are (the subjective feeling of burden of these symptoms), ranging from 0 (no problem) to 10 (tremendous problem). Six are non-bulbar (pain, fatigue, breathing, strength and ability to move, sleep, and bowel and bladder) and four are bulbar (eating, speaking, excessive saliva, and mucus). Results There were 82 subjects (56% men, mean age 53 ± 10.3 years) with ALSSQOL data for weeks 0 and 96. All 10 symptoms became more problematic over time. For non-bulbar symptoms, strength/ability to move and fatigue were the most problematic. Speaking was the most problematic bulbar symptom. Conclusions Although all the symptoms in the ALSSQOL were acknowledged as problematic, some had greater impact than others. All became more problematic over time. This should help prioritize research into symptom management, and assist individual clinicians in their approach to patient care.

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ALS multidisciplinary clinic and survival

Abstract: In this population-based series, we found that in Southern Italy management of ALS by multidisciplinary clinics does not improve survival, regardless of site of symptoms onset.

Cited by 62 publications

References 27 publications

The Use of Antidepressant Medication before and after the Diagnosis of Amyotrophic Lateral Sclerosis: A Population-Based Cohort Study

The Use of Antidepressant Medication before and after the Diagnosis of Amyotrophic Lateral Sclerosis: A Population-Based Cohort Study

Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach

Patient-reported problematic symptoms in an ALS treatment trial

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