Practice parameter: The care of the patient with amyotrophic lateral sclerosis (An evidence-based review)

Miller, Robert G.; Rosenberg, J.; Gelinas, Deborah; Mitsumoto, Hiroshi; Newman, Daniel S.; Sufit, Robert; Borasio, Gian Domenico; Bradley, Walter G.; Bromberg, Mark B.; Brooks, Benjamin Rix; Kasarskis, Edward J.; Munsat, Theodore L.; Oppenheimer, E. A.

doi:10.1002/(sici)1097-4598(199908)22:8<1104::aid-mus15>3.0.co;2-2

Cited by 130 publications

(118 citation statements)

References 109 publications

(155 reference statements)

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“…While rates of acceptance of gastrostomy are not available for the UK, rates in the USA range from 0-63% [9]. Evidence-based guidelines based largely on expert opinion recommend the use of NIV in ALS [11][12][13][14].…”

Section: Introductionmentioning

confidence: 99%

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

et al. 2015

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word count: 174 words 2 ABSTRACTThe objective was to identify factors associated with decisions made by patients with Amyotrophic Lateral Sclerosis (ALS) to accept or decline non-invasive ventilation (NIV) and/or gastrostomy in a prospective population-based study.Twenty-one people with ALS, recruited from the South-East ALS Register who made an intervention decision during the study timeframe underwent a face-to-face in-depth interview, with or without their informal caregiver present.Sixteen had accepted an intervention (11 accepted gastrostomy, four accepted NIV and one accepted both interventions). Five patients had declined gastrostomy. Thematic analysis revealed three main themes: i) patientcentric factors (including perceptions of control, acceptance and need, and aspects of fear); ii) external factors (including roles played by healthcare professionals, family, and information provision); and iii) the concept of time (including living in the moment and the notion of 'right thing, right time'). Many aspects of these factors were interrelated. Decision-making processes for the patients were found to be complex and multifaceted and reinforce arguments for individualised (rather than 'algorithm-based') approaches to facilitating decision-making by people with ALS who require palliative interventions.3

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Section: Introductionmentioning

confidence: 99%

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

et al. 2015

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“…The development of the Practice Parameters in the USA (Miller et al 1999) has stimulated all involved in the care of patients with MND to look carefully at the care provided. Although, at present, there is little evidence for many of the interventions and treatments used, there is an increasing evidence base.…”

Section: Discussionmentioning

confidence: 99%

“…) The placement of a PEG tube should be discussed early in the development of swallowing diffi culties. The PEG tube must be inserted while respiratory function is relatively goodforced vital capacity of at least 50% of expected -to minimise morbidity and mortality from the procedure (Miller et al 1999). Careful discussion with the patient and family is important so that they are aware of the potential benefi ts of PEG, and the PEG tube may not even be used for any feeding initially.…”

Section: Dysphagiamentioning

confidence: 99%

Palliative Care for Motor Neurone Disease

Oliver

2002

Pract Neurol

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“…Because there are no clear genetic determinants that predict a more severe course, the classification remains clinical. 11,20,21 Consequently, as the disease progression is different for each patient, measures that are successful in one child may not be effective in another and therapeutic interventions therefore must be tailored to each child's individual needs. Variation in practice on the basis of the unique and differing needs of individual patients therefore might be both appropriate and necessary.…”

Section: Discussionmentioning

confidence: 99%

Respiratory Support in Spinal Muscular Atrophy Type I: A Survey of Physician Practices and Attitudes

2002

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ABSTRACT. Objective. To determine whether there is variability in the attitudes and practices of physicians regarding treatment of respiratory failure in children with spinal muscular atrophy type I (SMA type I) and, if so, whether this variation is associated with professional training.Methods. This was a descriptive, cross-sectional survey mailed to a randomly selected subset of the Child Neurology Society, pediatric members of the Society of Critical Care Medicine and to the membership of the Pediatric Interest Section of the American Academy of Physical Medicine and Rehabilitation. A scenario of a child with SMA type I in respiratory distress was followed by questions that explored practices and attitudes regarding mechanical ventilation.Results. Fifty-seven percent of intensivists (75 of 132), 39% physiatrists (61 of 155), and 34% of neurologists (61 of 155) responded. Specialists differed as to whether they offered and/or recommended respiratory support to patients with SMA type I. Intensivists were less likely to offer and recommend tracheostomy than physiatrists. Intensivists were also significantly less likely than physiatrists to agree with statements supporting the ethical necessity of noninvasive mechanical ventilation (NIMV) and intubation in the setting of an acute respiratory illness, and NIMV and tracheostomy in the setting of chronic respiratory failure. Although parallel differences were found between physiatrists and neurologists regarding their attitudes toward mechanical ventilation, no significant differences were detected between intensivists and neurologists. Finally, physicians who reported that a high percentage of their patients with SMA type I received "comfort care only" also tended to view mechanical ventilation, ie, use of NIMV for chronic respiratory failure, use of intubation for an acute respiratory infection, and use of tracheostomy for chronic respiratory failure as an unreasonable intervention in most circumstances.Conclusions. We found a wide variation in physician practice regarding the mechanical ventilation of patients with SMA type I. This study suggests a wide variation not only in what is recommended but also in what is actually offered to families of these children. Furthermore, the study suggests that physician training and attitudes affect recommendations regarding mechanical ventilation and ultimately family decision making. S pinal muscular atrophy (SMA) type I, or Werdnig-Hoffman disease, is a devastating neuromuscular disease of childhood. Children with this disease typically have normal intelligence and remain alert and attentive to their environment, despite muscular weakness, and usually die from respiratory failure by age 2 years. 1,2 Despite evidence from a small number of centers reporting success in prolonging life with mechanical ventilation, 3-6 respiratory support for children with SMA type I is not widely accepted. Several important textbooks of pediatrics and pediatric neurology, for example, recommend against any mode of artificial ventilation for t...

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Practice parameter: The care of the patient with amyotrophic lateral sclerosis (An evidence-based review)

Cited by 130 publications

References 109 publications

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

Palliative Care for Motor Neurone Disease

Respiratory Support in Spinal Muscular Atrophy Type I: A Survey of Physician Practices and Attitudes

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