Which are the factors influencing NIV adaptation and tolerance in ALS patients?

Russo, Massimo; Bonanno, Carmen; Profazio, Claudia; Foresta, Stefania La; Faraone, Cristina; Vita, Gian Luca; Sframeli, Maria; Aricò, Irene; Ruggeri, Paolo; Toscano, Antonio; Vita, Giuseppe; Lunetta, Christian; Messina, Sonia

doi:10.1007/s10072-020-04624-x

Cited by 18 publications

(14 citation statements)

References 37 publications

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“…Indeed, the impact of isolation and decreases in social interactions and relationships on morbidity and mortality has been documented in subjects with preexisting health conditions [29][30][31]. Although patients did mention social isolation as a problem, HAD scores were well within or below published values for patients under HMV, with a remarkably low prevalence of anxiety or depressive disorders in spite of the pandemic [27,[32][33][34][35][36][37]. Interestingly, a Spanish study which included 100 patients with COPD reported that patients' feelings regarding their lung disease and general health were similar or even better during lockdown [38].…”

Section: Discussionmentioning

confidence: 97%

“…Fourth, we chose to use the HADS as a questionnaire designed for screening for anxiety and depression in chronic disorders. Although not specifically designed for HMV patients, it is widely used in these patients by expert groups, simple to perform, and short [ 24 , 25 , 26 , 27 , 32 , 35 , 36 ]. We did not add a questionnaire such as the Severe Respiratory Insufficiency (SRI) questionnaire [ 39 ], designed for assessing health-related quality of life in patients under HMV.…”

Section: Discussionmentioning

confidence: 99%

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Impact of Confinement in Patients under Long-Term Noninvasive Ventilation during the First Wave of the SARS-CoV-2 Pandemic: A Remarkable Resilience

et al. 2021

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Background: During the first wave of the SARS-CoV-2 pandemic in Switzerland, confinement was imposed to limit transmission and protect vulnerable persons. These measures may have had a negative impact on perceived quality of care and symptoms in patients with chronic disorders. Objectives: To determine whether patients under long-term home noninvasive ventilation (LTHNIV) for chronic respiratory failure (CRF) were negatively affected by the 56-day confinement (March–April 2020). Methods: A questionnaire-based survey exploring mood disturbances (HAD), symptom scores related to NIV (S3-NIV), and perception of health-care providers during confinement was sent to all patients under LTHNIV followed up by our center. Symptom scores and data obtained by ventilator software were compared between confinement and the 56 days prior to confinement. Results: Of a total of 100 eligible patients, 66 were included (median age: 66 years [IQR: 53–74]): 35 (53%) with restrictive lung disorders, 20 (30%) with OHS or SRBD, and 11 (17%) with COPD or overlap syndrome. Prevalence of anxiety (n = 7; 11%) and depressive (n = 2; 3%) disorders was remarkably low. Symptom scores were slightly higher during confinement although this difference was not clinically relevant. Technical data regarding ventilation, including compliance, did not change. Patients complained of isolation and lack of social contact. They felt supported by their relatives and caregivers but complained of the lack of regular contact and information by health-care professionals. Conclusions: Patients under LTHNIV for CRF showed a remarkable resilience during the SARS-CoV-2 confinement period. Comments provided may be helpful for managing similar future health-care crises.

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Section: Discussionmentioning

confidence: 97%

Section: Discussionmentioning

confidence: 99%

Impact of Confinement in Patients under Long-Term Noninvasive Ventilation during the First Wave of the SARS-CoV-2 Pandemic: A Remarkable Resilience

et al. 2021

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“…[155][156][157] Multiple risk factors for poor adherence and reduced efficacy have been identified including patient sociodemographic, neurocognitive, and behavioral attributes. 158,159 Correctable defects in mask selection or fit and device settings also contribute. A systematic approach to troubleshooting defects in device setup starts with correction of face mask discomfort, problematic air leaks, or excessive accumulation of respiratory excretions.…”

Section: Part III Troubleshooting and Problem Solvingmentioning

confidence: 99%

Practical Guide to Management of Long-Term Noninvasive Ventilation for Adults With Chronic Neuromuscular Disease

Hansen‐Flaschen

Ackrivo

2023

Respir Care

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Recent technological advances in respiratory support and monitoring have dramatically enhanced the utility of long-term noninvasive ventilation. Improvements in quality of life and prolonged survival at home have been demonstrated for several common chronic neuromuscular diseases. Many adults with progressive neuromuscular respiratory disease can now comfortably maintain normal ventilation at home to near total respiratory muscle paralysis without needing a tracheostomy. However, current practice in many communities falls short of that potential. Mastery of the new technology calls for detailed awareness of the respiratory cycle, expert knowledge of mechanical devices, facial interfaces, quantitative monitoring tools for home ventilation, and a willingness to stay current in a rapidly expanding body of clinical research. The depth and breadth of the expertise required to manage home assisted ventilation is giving rise to a new focused medical subspecialty in chronic respiratory failure at the interface between pulmonology, critical care, and sleep medicine. For clinicians seeking pragmatic "how to" guidance, this primer presents a comprehensive, physician-directed management approach to long-term noninvasive ventilation of adults with chronic neuromuscular respiratory disease. Bilevel devices, portable ventilators, ventilation modalities, terminology, and monitoring strategies are reviewed in detail. Building on that knowledge base, we present a step-by-step guide to initiation, refinement, and maintenance of home noninvasive ventilation that is tailored to patientcentered goals of therapy. The "quantitative" approach recommended here fully incorporates routine monitoring of home assisted ventilation using technologies that have only recently become widely available including cloud-based device telemonitoring and noninvasive measurements of blood gases. Strategies for troubleshooting and problem solving are included.

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“…A retrospective study of 72 patients was performed to determine the role of motor functional, cognitive, neurobehavioral, and respiratory status on NIV compliance and tolerance. 20 NIV use was initiated during an inpatient hospitalization, and patients were educated on use and attended to by pulmonologists for setting adjustments, and 87.5% were successful. Among the 9 patients who were unsuccessful, 7 had significant sialorrhea and cognitive and behavioral symptoms based on an FTD screen.…”

Section: Adoption Of Nivmentioning

confidence: 99%

What Is in the Literature

Bromberg

2022

Journal of Clinical Neuromuscular Disease

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This issue of What Is in the Literature focuses on articles on amyotrophic lateral sclerosis over the past year. Amyotrophic lateral sclerosis remains a challenging disorder with progression to death. Within the past year, a phase 2 trial of a drug combination showed slowing in the rate of progression. While awaiting a phase 3 trial or approval by the Food and Drug Administration, selected articles that aid the diagnosis, contribute to care, or add to general knowledge about the disease are reviewed.

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Which are the factors influencing NIV adaptation and tolerance in ALS patients?

Cited by 18 publications

References 37 publications

Impact of Confinement in Patients under Long-Term Noninvasive Ventilation during the First Wave of the SARS-CoV-2 Pandemic: A Remarkable Resilience

Impact of Confinement in Patients under Long-Term Noninvasive Ventilation during the First Wave of the SARS-CoV-2 Pandemic: A Remarkable Resilience

Practical Guide to Management of Long-Term Noninvasive Ventilation for Adults With Chronic Neuromuscular Disease

What Is in the Literature

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