Supportive &amp; palliative interventions in motor neurone disease: what we know from current literature?

Cheng, Hon Wai Benjamin; Chan, Kwok Ying; Chung, Yuen Kwan; Choi, Chun W.; Chan, Chun Hung; Cheng, Shuk Ching; Chan, Wan Hung; Fung, Koon Sim; Wong, Kar; Chan, Oi Man Iman; Man, Ching Wah

doi:10.21037/apm.2017.10.01

Cited by 17 publications

(15 citation statements)

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“…127 The MDT approach is also important to ensure that all the patient’s concerns are addressed, including the needs of their family and primary caregivers. 128…”

Section: Models Of Carementioning

confidence: 99%

The burden of sialorrhoea in chronic neurological conditions: current treatment options and the role of incobotulinumtoxinA (Xeomin®)

Morgante

Bavikatte

Anwar

et al. 2019

Ther Adv Neurol Disord

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Sialorrhoea is a frequent symptom of neurological diseases (e.g. Parkinson’s disease, motor neuron disease, cerebral palsy, and stroke) and is defined as excessive saliva accumulation leading to unintentional loss of saliva from the mouth. Sialorrhoea increases the overall burden on the patient and their caregivers, the impact of which can be both physical and psychosocial. Treatments for sialorrhoea range from lifestyle and behavioural guidance, to medications, surgery or radiation. Nonpharmacological interventions include advice on posture, swallowing control, cough management, dietary changes, eating and drinking techniques, and behavioural modification; however, these conservative measures may be ineffective for people with progressive neurological conditions. The pharmacological treatment of sialorrhoea is challenging because medications licensed for this purpose are limited, but treatments can include anticholinergic drugs and botulinum toxins. Surgical treatment of sialorrhoea is typically reserved as a last resort for patients. IncobotulinumtoxinA (Xeomin®) is the first botulinum toxin type A to receive US and UK marketing authorization for the symptomatic treatment of chronic sialorrhoea due to neurological disorders in adults. In this review, we discuss and compare the frequency and method of administration, location of treatment delivery, approximate annual costs and main side effects of botulinum toxin and different anticholinergic drugs. Management of patients with chronic neurological conditions requires input from multiple specialist teams and thus a multidisciplinary team (MDT) approach is considered fundamental to ensure that care is consistent and tailored to patients’ needs. To ensure that adult patients with neurological conditions receive the best care and sialorrhoea is well managed, we suggest a potential clinical care pathway for sialorrhoea with a MDT approach, which healthcare professionals could aspire to.

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“…127 The MDT approach is also important to ensure that all the patient’s concerns are addressed, including the needs of their family and primary caregivers. 128…”

Section: Models Of Carementioning

confidence: 99%

The burden of sialorrhoea in chronic neurological conditions: current treatment options and the role of incobotulinumtoxinA (Xeomin®)

Morgante

Bavikatte

Anwar

et al. 2019

Ther Adv Neurol Disord

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“…They found that major factors related to IMV avoidance were female gender, NIV use longer than 6 months, bulbar onset, and absence of spouse/partner [139]. It is also important to consider that these patients get used to NIV, and over time they become dependent on it, so it becomes difficult to opt for IMV [140]. Moreover, ALS patients during NIV show a decreased pain threshold leading to avoidance of further invasive procedures, increased social restrictions, and raised psychological barriers against transition from NIV to IMV [141].…”

Section: Ethical Dilemmasmentioning

confidence: 99%

“…The burden of becoming dependent on NIV is very distressful and it sums up to the other discouraging experiences that this fatal disease carries with itself [138, 140, 148]. Withdrawing from long-term NIV has not fully been explored.…”

Section: Ethical Dilemmasmentioning

confidence: 99%

Long-Term Ventilation in Neuromuscular Patients: Review of Concerns, Beliefs, and Ethical Dilemmas

Crimi

Pierucci²,

Carlucci

et al. 2019

Respiration

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Background: Noninvasive mechanical ventilation (NIV) is an effective treatment in patients with neuromuscular diseases (NMD) to improve symptoms, quality of life, and survival. Summary: NIV should be used early in the course of respiratory muscle involvement in NMD patients and its requirements may increase over time. Therefore, training on technical equipment at home and advice on problem solving are warranted. Remote monitoring of ventilator parameters using built-in ventilator software is recommended. Telemedicine may be helpful in reducing hospital admissions. Anticipatory planning and palliative care should be carried out to lessen the burden of care, to maintain or withdraw from NIV, and to guarantee the most respectful management in the last days of NMD patients’ life. Key Message: Long-term NIV is effective but challenging in NMD patients. Efforts should be made by health care providers in arranging a planned transition to home and end-of-life discussions for ventilator-assisted individuals and their families.

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“…Amyotrophic lateral sclerosis (ALS) is a fatal disease, with degeneration of upper and lower motor neurons and a high burden of symptoms not unlike that of cancer 1 . Supportive interventions including multidisciplinary care and optimization of symptom treatments have improved quality of life for these patients and palliative care remains the cornerstone of ALS management 2‐10 …”

Section: Introductionmentioning

confidence: 99%

End‐of‐life care in amyotrophic lateral sclerosis: A comparative registry study

Ahlberg

Axelsson

2020

Acta Neurol Scand

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Background Amyotrophic lateral sclerosis (ALS) is a fatal disease requiring palliative care. End‐of‐life care has been well studied in patients with incurable cancer, but less is known about the quality of such care for patients with ALS. Aim To study whether the quality of end‐of‐life care the last week in life for patients dying from ALS differed compared to patients with cancer in terms of registered symptoms, symptom management, and communication. Design This retrospective comparative registry study used data from the Swedish Registry of Palliative Care for 2012–2016. Each patient with ALS (n = 825) was matched to 4 patients with cancer (n = 3,300). Results Between‐group differences in assessments for pain and other symptoms were significant (p < 0.01), and patients with ALS had fewer as‐needed injection drugs prescribed than patients with cancer. Patients with ALS also had dyspnea and anxiety significantly more often than patients with cancer. There was no significant difference in communication about transition to end‐of‐life care between the two groups. Patients dying from ALS received artificial nutrition on their last day of life significantly more often than patients with cancer. Conclusions The results indicate that patients with ALS receive poorer end‐of‐life care than patients dying from cancer in terms of validated symptom assessments, prescription of as‐needed drugs, and timely cessation of artificial nutrition. Educational efforts seem needed to facilitate equal care of dying patients, regardless of diagnosis.

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Supportive & palliative interventions in motor neurone disease: what we know from current literature?

Cited by 17 publications

References 0 publications

The burden of sialorrhoea in chronic neurological conditions: current treatment options and the role of incobotulinumtoxinA (Xeomin®)

The burden of sialorrhoea in chronic neurological conditions: current treatment options and the role of incobotulinumtoxinA (Xeomin®)

Long-Term Ventilation in Neuromuscular Patients: Review of Concerns, Beliefs, and Ethical Dilemmas

End‐of‐life care in amyotrophic lateral sclerosis: A comparative registry study

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