Literature DB >> 9851662

Breaking the news in amyotrophic lateral sclerosis.

G D Borasio1, R Sloan, D E Pongratz.   

Abstract

Telling the diagnosis to patients with amyotrophic lateral sclerosis (ALS) is a daunting task for any neurologist. Obviously, breaking the news in ALS is not a standardizable procedure. However, proven techniques exist to reduce the trauma to the patient and ease the burden on the doctor, thus reducing the risk of burnout and the tendency to 'pull away' from the patient. Such communication skills are of fundamental importance to clinical practice and should be more prominent in medical teaching. The way the patient is told the diagnosis is now recognized to be the first and one of the most delicate steps in palliative care. Information is best offered in a stepwise fashion at the patient's pace with an emphasis on positive aspects, and in the presence of the patient's family. Reviewing available therapeutic options and current research efforts may foster hope for the future, while pointing out that almost all symptoms of ALS can be alleviated by palliative therapy may help to reduce fears. Encouraging patients to ask questions and disclose anxieties is important for their psychological wellbeing. Available options for mechanical ventilation should be reviewed early enough to allow for unhurried decision-making. We believe that the terminal phase of the disease should be discussed at the latest when dyspneic symptoms appear, in order to prevent unwarranted fears of 'choking to death'.

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Year:  1998        PMID: 9851662     DOI: 10.1016/s0022-510x(98)00211-1

Source DB:  PubMed          Journal:  J Neurol Sci        ISSN: 0022-510X            Impact factor:   3.181


  12 in total

1.  Riluzole treatment in advanced ALS.

Authors:  Gian Domenico Borasio
Journal:  J Neurol       Date:  2002-05       Impact factor: 4.849

Review 2.  Management of motor neurone disease.

Authors:  R S Howard; R W Orrell
Journal:  Postgrad Med J       Date:  2002-12       Impact factor: 2.401

Review 3.  Diagnosis and management of motor neurone disease.

Authors:  Christopher J McDermott; Pamela J Shaw
Journal:  BMJ       Date:  2008-03-22

4.  Disclosing the diagnosis of multiple sclerosis.

Authors:  P G Papathanasopoulos; A Nikolakopoulou; N J Scolding
Journal:  J Neurol       Date:  2005-11-28       Impact factor: 4.849

Review 5.  Depression and anxiety in individuals with amyotrophic lateral sclerosis: epidemiology and management.

Authors:  Anja Kurt; Femke Nijboer; Tamara Matuz; Andrea Kübler
Journal:  CNS Drugs       Date:  2007       Impact factor: 5.749

6.  Communicating the diagnosis: a survey of patients with amyotrophic lateral sclerosis and their families in Japan.

Authors:  Takehisa Hirayama; Yuishin Izumi; Yuki Nakayama; Mari Shibukawa; Satoru Ebihara; Osamu Kano
Journal:  Acta Neurol Belg       Date:  2021-09-16       Impact factor: 2.396

Review 7.  Comprehensive rehabilitative care across the spectrum of amyotrophic lateral sclerosis.

Authors:  Sabrina Paganoni; Chafic Karam; Nanette Joyce; Richard Bedlack; Gregory T Carter
Journal:  NeuroRehabilitation       Date:  2015       Impact factor: 2.138

Review 8.  Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology.

Authors:  R G Miller; C E Jackson; E J Kasarskis; J D England; D Forshew; W Johnston; S Kalra; J S Katz; H Mitsumoto; J Rosenfeld; C Shoesmith; M J Strong; S C Woolley
Journal:  Neurology       Date:  2009-10-13       Impact factor: 9.910

9.  Clinical psychology and amyotrophic lateral sclerosis.

Authors:  Francesco Pagnini; Gabriella Rossi; Christian Lunetta; Paolo Banfi; Massimo Corbo
Journal:  Front Psychol       Date:  2010-07-21

10.  Discussing personalized prognosis in amyotrophic lateral sclerosis: development of a communication guide.

Authors:  Remko M van Eenennaam; Willeke J Kruithof; Michael A van Es; Esther T Kruitwagen-van Reenen; Henk-Jan Westeneng; Johanna M A Visser-Meily; Leonard H van den Berg; Anita Beelen
Journal:  BMC Neurol       Date:  2020-12-14       Impact factor: 2.474

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