Interprofessional Care for Neuromuscular Disease

Howard, Ileana M.; Potts, Abigail S.

doi:10.1007/s11940-019-0576-z

Cited by 11 publications

(20 citation statements)

References 37 publications

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“…Thus, there is a need for strategies to enhance the coordination of care and to incorporate the patients with ALS as full partners to their care-providers with a role in healthcare decisions [ 40 ], i.e., to establish a person-centered care [ 41 ] where care is based on the patient’s preferences, needs, and values, taking patient resources into account [ 42 ]. This may be facilitated by interdisciplinary or transdisciplinary care models which have shown to improve health outcome, resource utilisation and satisfaction in patients with ALS [ 43 ].…”

Section: Discussionmentioning

confidence: 99%

Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study

Kierkegaard

Gottberg

Johansson

et al. 2021

JND

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Background: Patients with amyotrophic lateral sclerosis (ALS) need a large amount of healthcare services. Knowledge on use of and satisfaction with healthcare is, however, scarce. Objective: The objectives were to explore use and satisfaction of healthcare in patients with ALS. Methods: The sample consisted of patients with ALS, recruited from the ALS clinic at the Karolinska University Hospital, Stockholm, Sweden, participating in a three-year observational study. Data on healthcare utilisation were retrieved from the computerised register at Region Stockholm, Sweden. Information regarding disability, contextual factors and satisfaction with care was collected by home visits. Results: Over time, half, or less of the patients used inpatient care, whereas all used outpatient care. Half of all outpatient contacts were with providers of advanced healthcare in the home and one-fifth with allied health professionals. Nurses performing home visits composed the largest proportion of outpatient contacts. A small amount of the utilised outpatient care emerged from the ALS clinic. Patients with severe disease and longer time since diagnosis had fewer contacts with the ALS clinic. Satisfaction with care was in general stable over time with around two-thirds or more of patients being satisfied. Most patients wanted to participate in care planning, but few had. Conclusion: Patients with ALS use hospital-based specialist care and other outpatient care in parallel with many healthcare providers involved. Our findings highlight the need for implementation of person-centred care to improve both coordination of care, care transitions and satisfaction with healthcare services.

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Section: Discussionmentioning

confidence: 99%

Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study

Kierkegaard

Gottberg

Johansson

et al. 2021

JND

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“…Telehealth has also been used effectively in CRD. Recent studies show that telehealth can be used Treatment burden related to care coordination to initiate and monitor noninvasive ventilation in patients with CRD and NMD [21][22][23][24][25][26].…”

Section: Telemonitoringmentioning

confidence: 99%

“…Since multidisciplinary clinics are generally located in main city centres, the geographic distance for many disabled patients remains a barrier, especially during the coronavirus disease pandemic. To avoid disrupting patient care, telehealth has been successfully used to fill the gap with high levels of acceptance and satisfaction among patients and caregivers [ 24 , 25 ].…”

Section: Care Coordination In the Field Of Respiratory Diseasesmentioning

confidence: 99%

Patient's treatment burden related to care coordination in the field of respiratory diseases

Pierucci

Santomasi

Ambrosino

et al. 2021

Breathe

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The management of respiratory diseases requires various levels of care: multidisciplinary teams, educational and behavioural interventions, self-management and home-based technical support are vital to ensure adequate care management. However, it is often difficult to access these networks due to fragmentation of patient care and treatment burden. Care coordination aims to ensure patients have a central role and that there is continuity of care among various levels and professionals involved. Moreover, the coronavirus disease pandemic has caused strain on the global healthcare system, with care coordination becoming increasingly important in increasing the resilience of health systems, supporting healthcare professionals and ensuring the right treatment and adequate level of care for these patients.

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“…Interdisciplinary or transdisciplinary care is highly recommended for patients with neurodegenerative conditions. While the term "multidisciplinary" is often used interchangeably with "interdisciplinary" or "transdisciplinary," there are important differences in these models of care with more highly integrated or collaborative care occurring with interdisciplinary/transdisciplinary models (Howard & Potts, 2019).…”

Section: Interdisciplinary Carementioning

confidence: 99%

Shifting Tides Toward a Proactive Patient-Centered Approach in Dysphagia Management of Neurodegenerative Disease

Rogus-Pulia

Plowman

2020

Am J Speech Lang Pathol

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Purpose Persons with neurodegenerative disease frequently develop comorbid dysphagia as part of their disease process. Current “reactive” approaches to dysphagia management address dysphagia once it manifests clinically and consist of compensatory approaches. The purpose of this article is to propose a paradigm shift in dysphagia management of patients with neurodegenerative disease from a “reactive to proactive” approach by highlighting amyotrophic lateral sclerosis (ALS) and dementia as case examples. Method The authors present several areas of special consideration for speech-language pathologists (SLPs) treating dysphagia in patients with neurodegenerative disease. The drawbacks of historical “reactive” approaches to dysphagia management are described. Concepts of functional reserve for swallowing and homeostenosis are discussed. A “proactive” patient-centered paradigm of care for these patients is proposed with evidence to support its importance. A rationale for use of this approach in patients with ALS and dementia is provided with strategies for implementation. Results When treating dysphagia in patients with neurodegenerative disease, SLPs must balance a variety of factors in their decision making, including disease severity and expected progression, cultural considerations, goals of care, patient empowerment, and caregiver support. Reactive approaches to dysphagia management in these populations are problematic in that they disempower patients by focusing on use of compensatory techniques (e.g., diet modification, postural changes, feeding tube placement). Proactive approaches that employ rehabilitative interventions to increase functional reserve, such as resistance training, may result in improvement or maintenance of swallowing function longer into disease progression. An interdisciplinary team with early SLP involvement is necessary. Conclusions SLPs play a critical role in the management of dysphagia in patients with neurodegenerative disease and should be integrated early in the care of these patients. By focusing on a proactive patient-centered approach, patients with neurodegenerative conditions, such as ALS and dementia, will experience improved quality of life and health outcomes for a longer time.

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Interprofessional Care for Neuromuscular Disease

Cited by 11 publications

References 37 publications

Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study

Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study

Patient's treatment burden related to care coordination in the field of respiratory diseases

Shifting Tides Toward a Proactive Patient-Centered Approach in Dysphagia Management of Neurodegenerative Disease

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