Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach

Hogden, Anne; Foley, Geraldine; Henderson, Robert D.; James, Natalie; Aoun, Samar

doi:10.2147/jmdh.s134992

Cited by 141 publications

(130 citation statements)

References 91 publications

(199 reference statements)

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“…Palliative care is an important aspect of the management of patients with amyotrophic lateral sclerosis (ALS). In many ALS clinics, palliative care is delivered by the primary ALS provider in an approach termed “primary palliative care.” However, some patients may require more intensive palliative care and benefit from the skill set of a palliative care specialist . In other fields, involvement of a dedicated palliative care specialist has led to improved outcomes, including quality of life, mood, and longevity …”

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confidence: 99%

“…1,2 However, some patients may require more intensive palliative care and benefit from the skill set of a palliative care specialist. 3,4 In other fields, involvement of a dedicated palliative care specialist has led to improved outcomes, including quality of life, mood, and longevity. 5,6 Primary palliative care is provided by the primary ALS clinician and multidisciplinary team, and includes basic symptom management and discussions about prognosis and goals of treatment.…”

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confidence: 99%

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Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center

et al. 2019

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Palliative care specialists can aid in the care of patients with amyotrophic lateral sclerosis (ALS). In this article, we describe our 1‐year experience incorporating a palliative care specialist into the ALS multidisciplinary team. We describe our integration model, patient selection, and visit content. Of 500 total clinic patients, 74 (14.8%) were seen by the palliative care specialist in 1 year. Referral was most often triggered by advance care planning needs (91%). In the initial visit with the palliative care specialist, topics most frequently covered included goals of care (84%), anxiety/depression (35%), and medical decision‐making about feeding tubes (27%) or tracheostomy (31%). Symptom management comprised a relatively small number of the visits, and duration of visits was limited by patient fatigue. Patients with complex goals of care may benefit from the input of a palliative care specialist, and unique integration models may help to facilitate care delivery. Muscle Nerve 60: 137–140, 2019

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Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center

et al. 2019

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“…It may be the case that Parkinsonian patients are well-adjusted to the changes in the articulatory system. It needs to be noted that the average duration of Parkinson's disease is 15.8 years [46] compared to 30 months in the case of ALS [47]. Consequently, a dramatic speech deterioration in ALS is observed within a significantly shorter space of time.…”

Section: Existing Research Does Not Mention Any Relationship Betweenmentioning

confidence: 99%

Application of subjective and objective tools for the evaluation of the articulatory organs among patients with amyotrophic lateral sclerosis

Pawlukowska

Baumert

Gołąb-Janowska

et al. 2019

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Introduction Amyotrophic lateral sclerosis (ALS) is a fatal degenerative disease of a rapid course. In 25% of ALS sufferers, speech disorders occur as prodromal symptoms of the disease. Impaired communication affects physical health and has a negative impact on mental and emotional condition. In this study, we assessed which domains of speech are particularly affected in ALS. Subsequently, we estimated possible correlations between the ALS patients’ subjective perception of their speech quality and an objective assessment of the speech organs carried out by an expert. Methods The study group consisted of 63 patients with sporadic ALS. The patients were examined for articulatory functions by means of Voice Handicap Index (VHI) and the Frenchay Dysarthria Assessment (FDA). Results On the basis of the VHI scores, the entire cohort was divided into 2 groups: group I (40 subjects) with mild speech impairment, and group II (23 subjects) displaying moderate and profound speech deficits. The deficits were observed more frequently in men (60.31%). In an early phase of ALS, changes were typically reported in the tongue, lips and soft palate. The FDA and VHI-based measurements revealed a high, positive correlation between the objective and subjective evaluation of articulation quality. Conclusion Deterioration of the articulatory organs resulted in the reduction of social, physical and emotional functioning. The highly positive correlation between the VHI and FDA scales seems to indicate that the VHI questionnaire may be a reliable, self-contained tool for monitoring the course and progression of speech disorders in ALS.

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“…The teams are comprised of a range of medical, nursing and allied health practitioners, taking an integrated approach to address patients' symptom management, psychosocial and quality of life needs [18][19][20] (Table 1).…”

Section: Patient-centered Service Deliverymentioning

confidence: 99%

“…Not all patients are able to attend an MDC; but, despite numerous barriers to attendance [26], the proportion of patients who have been able to access specialized multidisciplinary services is high internationally [20].…”

Section: Patient-centered Service Deliverymentioning

confidence: 99%

Patient-centered Decision Making in Amyotrophic Lateral Sclerosis: Where are we?

Hogden

Crook

2017

Neurodegener. Dis. Manag.

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Practice pointsr Amyotrophic lateral sclerosis patients are supported by models of patient-centered decision making delivered through specialized multidisciplinary clinics. r Advances in research have led to changes in service delivery, with new members added to the multidisciplinary team. r Developments in genetics research have increased the complexity of patients' choices for genetic testing. r User-designed decision support tools could improve communication between patients' families and clinicians, to negotiate this complex and ever-changing care.Developments in amyotrophic lateral sclerosis research and care delivery have created new arenas, and new dilemmas, for patients' decision making. This review explores three aspects of amyotrophic lateral sclerosis patient-centered care and decision making: patient-centered service delivery through the expanding multidisciplinary team; decision making for genetic testing and the implications of undergoing testing; and development of user-designed decision support tools to help patients and families make decisions as their choices become more complex. Until a cure is found, well-timed and effective decision making will rely on patient and family preferences to guide them through an increasingly complicated disease landscape. Amyotrophic lateral sclerosis (ALS) is a disease in search of a cure, or at least a highly effective treatment that will alleviate symptoms and slow disease progression. Until this can be achieved, people living with ALS, and their families, rely on healthcare services to help them manage their symptoms and maximize their quality of life as their needs increase. Best practice for people with ALS adopts a multidisciplinary approach of specialized care [1] that draws on patient-(or person-) centered principles and practices for cohesive and collaborative care [2].Patient-centered care, and the decision making that underpins it, have been defined, conceptualized and modeled many times [3][4][5][6][7]. In short, four principles [5] apply: affording people dignity, respect and compassion; offering coordinated care; offering personalized care; and enabling people to develop their unique range of capabilities to participate in their own care. Shared decision making, where patients and health professionals collaborate to arrive at a care decision, is considered best practice for patient-centered healthcare delivery [8]. Although preferences for sharing decision making vary with age, cultural background and disease setting [9][10][11], a majority of patients prefer to make their decisions using this approach [9]. Decision making for ALS care is often more complicated than for other degenerative conditions, as continual change in the patient's condition and circumstances mean that decision making is ongoing throughout the, frequently brief, course of the disease. Time frames for choosing and implementing a treatment may be short; and the number of health professionals to consult may be extensive; with multiple decisions under consideration at one time.

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Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach

Cited by 141 publications

References 91 publications

Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center

Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center

Application of subjective and objective tools for the evaluation of the articulatory organs among patients with amyotrophic lateral sclerosis

Patient-centered Decision Making in Amyotrophic Lateral Sclerosis: Where are we?

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