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

Brizzi, Kate; Paganoni, Sabrina; Zehm, April; Marchi, Fabiola De; Berry, James

doi:10.1002/mus.26607

Cited by 33 publications

(50 citation statements)

References 17 publications

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“…These fears should prompt pro-active palliative care education and goals of care conversations. In some instances, partnerships with palliative care physicians to provide ALS-specific palliative care can be highly beneficial (37)(38)(39), and some models have explored embedding a palliative care provider in the ALS multidisciplinary clinic (40).…”

Section: Discussionmentioning

confidence: 99%

Understanding the needs of people with ALS: a national survey of patients and caregivers

Brizzi

Bridges

Yersak

et al. 2020

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Objective: Amyotrophic lateral sclerosis (ALS) has profound effects on people with ALS (PALS) and caregivers. There is a paucity of research detailing and comparing PALS and caregiver day-today perspectives of ALS. Methods: A survey developed collaboratively by The ALS Association and a panel of experts in ALS care was designed to broadly sample the experience of PALS and caregivers with respect to physical and emotional symptoms, the efficacy of treatment approaches, and goals for future treatments. Specific physical symptoms assessed consisted of fatigue, pain, weakness, shortness of breath, difficulty sleeping, speech problems, depression and other mood changes, and cognitive changes. PALS, caregivers of living patients with ALS (C-LPALS), and caregivers of deceased patients with ALS (C-DPALS) were contacted by email to participate in a 30-minute online survey. Results: 887 PALS, 444 C-LPALS, and 193 C-DPALS responded to the survey. In comparison to PALS, C-LPALS perceived that PALS had significantly higher rates of all surveyed symptoms except for pain and weakness. Caregivers self-reported higher stress levels than PALS (p < 0.001). 35% (135/383) of caregivers reported experiencing a devastating or near devastating financial impact of ALS and 64% (247/383) of caregivers felt their own health had worsened. Caregivers were significantly less likely to perceive a positive response to treatment in comparison to PALS (p < 0.001). Conclusions: PALS and caregivers report a number of symptoms beyond weakness that affect daily life which may be targets of future interventions. There are opportunities to improve services and care for caregivers to reduce the burden of illness.

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Section: Discussionmentioning

confidence: 99%

Understanding the needs of people with ALS: a national survey of patients and caregivers

Brizzi

Bridges

Yersak

et al. 2020

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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“…Palliative care is perfectly suited for patients with ALS, as it is a practice that focuses on symptom management and medical decision-making for patients facing life-limiting illnesses 27. For cases where primary palliative care, as provided by the MDC, is insufficient, palliative care specialists can be extremely valuable in helping to manage the wide range of symptoms that patients with ALS experience 28. While palliative care is useful in the management of physical symptoms, such as pain, sialorrhea, and respiratory distress, it further offers benefits in the realm of psychological distress 28.…”

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confidence: 99%

“…For cases where primary palliative care, as provided by the MDC, is insufficient, palliative care specialists can be extremely valuable in helping to manage the wide range of symptoms that patients with ALS experience 28. While palliative care is useful in the management of physical symptoms, such as pain, sialorrhea, and respiratory distress, it further offers benefits in the realm of psychological distress 28. Patients with ALS may experience depression, grief, and anxiety as they face the progressive nature of their condition.…”

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confidence: 99%

“…NEUROLOGY care is more strongly pursued in patients for whom primary palliative care is insufficient. More constructive dialogue must be held such that the concerns and misconceptions patients may have regarding this valuable resource are properly addressed, as this specialized form of care has positive implications for patient QoL 28.…”

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confidence: 99%

“…This can hopefully lead to advancements in how bulbar symptoms are managed in patients with ALS, which can further improve their prognosis 27. Furthermore, the decisions patients must make regarding their care, such as PEG placement and mechanical ventilation, can contribute to the psychological stress they experience 28. As experts in medical decision-making, symptom management, and support, palliative care specialists can add great value to the care profile of patients with ALS 28.…”

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confidence: 99%

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A Retrospective Review to Evaluate the Demographics and Management Profile of Patients with Amyotrophic Lateral Sclerosis Attending a Multidisciplinary Clinic

Jalali-Sohi¹,

Darki²,

Beydoun³

2020

US Neurology

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Assessment of feasibility and utility of universal referral to specialty palliative care in a multidisciplinary amyotrophic lateral sclerosis clinic: A cohort study

et al. 2021

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Introduction: Although the value of palliative care integration in multidisciplinary amyotrophic lateral sclerosis (ALS) clinics has been increasingly recognized, limited data are available demonstrating the feasibility and utility of a palliative care specialist embedded in an ALS clinic. The purpose of this study is to describe the feasibility and utility of a universal outpatient referral model for specialty palliative care for patients with amyotrophic lateral sclerosis.Methods: This is a retrospective cohort study of initial patient visits with a palliative care physician in a multidisciplinary ALS clinic at an academic institution. All patients were referred to an embedded palliative care physician from January to December 2019.Results: Within the study period, 52 of 69 (75%) patients with a confirmed diagnosis of ALS were seen by the palliative care physician. The most common reason patients were not seen by palliative care was a lack of insurance authorization (n = 5). At the visit, 94% of patients discussed at least one advance care planning or goals of care topic. The most common advance care planning topic discussed was code status (40%). The most common goals of care topic discussed was meaning and values (57%). Symptom management was discussed with 40 patients (77%). The most common symptom addressed was pain and/or muscle spasms (33%).Discussion: These data support the feasibility and utility of universal, outpatient palliative care referral for patients with ALS. Further research is necessary to determine the long-term effect on outcomes for this population.

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

Cited by 33 publications

References 17 publications

Understanding the needs of people with ALS: a national survey of patients and caregivers

Understanding the needs of people with ALS: a national survey of patients and caregivers

A Retrospective Review to Evaluate the Demographics and Management Profile of Patients with Amyotrophic Lateral Sclerosis Attending a Multidisciplinary Clinic

Assessment of feasibility and utility of universal referral to specialty palliative care in a multidisciplinary amyotrophic lateral sclerosis clinic: A cohort study

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