Breaking the news: A survey of ALS patients and their caregivers

McCluskey, Leo; Casarett, David; Siderowf, Andrew

doi:10.1080/14660820410020772

Cited by 75 publications

(69 citation statements)

References 29 publications

(26 reference statements)

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“…Diagnostic experiences can be particularly stressful for caregivers (70). However, studies suggested that communication at this time could be improved (38,42,55,71). McClusky et al, (71) found the average time spent imparting the diagnosis in a U.S. study was 30 minutes, and while 65% of doctors identified MND as a terminal disease, only 11% discussed palliative care options.…”

Section: Information and Communicationmentioning

confidence: 99%

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

et al. 2012

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Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

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Section: Information and Communicationmentioning

confidence: 99%

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

et al. 2012

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“…Two studies analyzed patient perceptions of this experience (Class III and Class IV). 2,3 Patients reported lack of empathy, insufficient explanation of the diagnosis and the course of the illness, and lack of information on where to get help.…”

Section: Analysis Of Evidencementioning

confidence: 99%

Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review)

Miller¹,

Jackson²,

Kasarskis³

et al. 2009

Neurology

555

417

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Objective: To systematically review evidence bearing on the management of patients with amyotrophic lateral sclerosis (ALS). Methods:The authors analyzed studies from 1998 to 2007 to update the 1999 practice parameter. Topics covered in this section include breaking the news, multidisciplinary clinics, symptom management, cognitive and behavioral impairment, communication, and palliative care for patients with ALS.

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“…Raising a suspect of ALS and then breaking the news to the patient and relatives is a difficult task. Several papers have been devoted to this important step [3,24,25] and there is general awareness that this is a key step in the diagnostic and management process. Recently, several works have been dedicated to cognitive errors that physicians make in their diagnostic work-up [26,27].…”

Section: Independent Variablementioning

confidence: 99%

Factors affecting the diagnostic delay in amyotrophic lateral sclerosis

Cellura

Spataro

Taiello

et al. 2012

Clinical Neurology and Neurosurgery

104

101

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a b s t r a c tBackground: Although amyotrophic lateral sclerosis (ALS) is a relentlessly progressive disorder, early diagnosis allows a prompt start with the specific drug riluzole and an accurate palliative care planning. ALS at onset may however mimic several disorders, some of them treatable (e.g., multifocal motor neuropathy) or epidemiologically more frequent (e.g., cervical myelopathy). Objective: To study the delay from onset to diagnosis in a cohort of ALS patients and to the variables that may affect it. Methods: We performed a retrospective analysis of the diagnostic delays in a cohort of 260 patients affected by ALS (M/F = 1.32) followed at our tertiary referral ALS Center between 2000 and 2007.Results: The median time from onset to diagnosis was 11 months (range: 6-21) for the whole ALS cohort, 10 months (range: 6-15) in bulbar-onset (n = 65) and 12 months (range: 7-23) in spinal-onset (n = 195) patients (p = 0.3). 31.1% of patients received other diagnoses before ALS and this led to a significant delay of the correct diagnosis in this group (other diagnoses before ALS, n = 81: median delay, 15 months [9.75-24.25] vs ALS, n = 179, median delay, 9 months [6-15.25], p < 0.001). Conclusions: The diagnostic delay in ALS is about one year, besides the growing number of tertiary centres and the spread of information about the disease through media and internet. Cognitive errors based on an incorrect use of heuristics might represent an important contributing factor. Furthermore, the length of the differential diagnosis from other disorders and delays in referral to the neurologist seems to be positively associated with the delay in diagnosis.

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Breaking the news: A survey of ALS patients and their caregivers

Cited by 75 publications

References 29 publications

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review)

Factors affecting the diagnostic delay in amyotrophic lateral sclerosis

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