"Me and 'that' machine": the lived experiences of people with neuromuscular disorders using non-invasive ventilation.

PURPOSE: Neuromuscular disorders (NMD) encompasses a wide range of conditions, with respiratory weakness a common feature. Respiratory care can involve non-invasive ventilation (NIV) resulting in fewer hospital admissions, a lower mortality rate and improved quality of life. The aim of this study was to explore the 'lived experience' of NIV by people with NMD. METHODS: Interpretive Phenomenological Analysis (IPA) with semi-structured, face to face interviews with 11 people with NMD, using bi-level positive airway pressure for NIV for more than 12 months. RESULTS: Three themes were interpreted: (i) Alive, with a life; (ii) Me and 'that' machine; and (iii) Precariousness of this life. NIV enabled hope, independence and the opportunity to explore previously perceived unattainable life experiences. Yet, participants felt dependent on the machine. Furthermore, practical considerations and fear of NIV failure created a sense of precariousness to life and a reframing of personal identity. CONCLUSION: The findings highlight the broad ranging positive and negative effects that may occur for people with NMD when using this important therapy. Ongoing non-judgemental support and empathy are required from health professionals as the use of NIV challenged concepts such as 'living life well' for people with NMD. IMPLICATIONS FOR REHABILITATIONNeuromuscular disorders may result in respiratory weakness requiring non-invasive ventilation (NIV).When prescribed early, NIV can results in fewer hospital admissions, a lower mortality rate and improved quality of life.The relationship of people with NMD with their NIV machine is complex and impacts on and requires adjustment to their identity.NIV users acknowledged that NIV provided hope but simultaneously recognised the precariousness of NIV on their life.In order to better support people with NMD healthcare professionals need to better understand how the physical, psychological and social implications of NIV affect an individual's life.

Respiratory function and therapeutic expectations in DMD: families experience and perspective.

OBJECTIVE: The aim of this study was to use a structured questionnaire in a large cohort of Duchenne Muscular Dystrophy (DMD) patients to assess caregivers and patients views on respiratory function and to establish if their responses were related to the patients' age or level of functional impairment. METHODS: Questionnaires were administered to caregivers in 205 DMD patients of age between 3 and 36 years (115 ambulant, 90 non-ambulant), and to 64 DMD patients (3 ambulant, 61 non-ambulant) older than 18 years, subdivided into groups according to age, FVC, ambulatory and ventilatory status. RESULTS: Some differences were found in relation to FVC % values (p = 0.014), ambulatory (p = 0.043) and ventilatory status (p = 0.014). Nearly half of the caregivers expected deterioration over the next years, with the perspective of deterioration more often reported by caregivers of non-ambulant (p = 0.018) and ventilated patients (p = 0.004). Caregivers appeared to be aware of the relevance of respiratory function on quality of life (84%) showing willingness to enter possible clinical trials if these were aiming to stabilize the progression of respiratory function with a very high number of positive responses across the spectrum of age, FVC, ambulatory and ventilatory status. The boys older than 18 years showed similar results. CONCLUSIONS: Our study showed that the concern for respiratory function increases with age and with the reduction of FVC or the need for ventilation, but the need for intervention was acknowledged across the whole spectrum of age and functional status.

[Obesity hypoventilation syndrome and initial compliance with non-invasive ventilation]. / Syndrome obésité hypoventilation et observance initiale de la ventilation non invasive.

INTRODUCTION: The obesity hypoventilation syndrome (OHS) has an increasing prevalence. Compliance with first-line non-invasive ventilation has not been evaluated, taking into account patients' initial comorbidities. This study consisted of identification of the factors associated with compliance with non-invasive ventilation during the first six months of use. METHODS: A monocentric retrospective study, gathering patients from the pneumology department of Gabriel-Montpied hospital in Clermont-Ferrand, from April 2010 to October 2019. The analysis was carried-out through the collection of computerised medical records (age, mode of entry, patient comorbidities) and compliance reports (average daily hours of use) provided by the regional service provider for the Auvergne area (AIRRA). RESULTS: Being hospitalized for an acute exacerbation and being older than seventy-five years were factors associated with an improved compliance to non-invasive ventilation, with an increase of 1.47h/d and 2.73h/d (P value: 0.018 and 0.02, respectively). Moreover, patients with obstructive sleep apnea hypopnea syndrome and recipients of therapeutic education may prove more compliant over time. CONCLUSION: Age greater than seventy-five years and being hospitalized for an acute exacerbation are predictors of better use of non-invasive ventilation in OHS.

Experiences and views of patients, carers and healthcare professionals on using modems in domiciliary non-invasive ventilation (NIV): a qualitative study.

BACKGROUND: Advances in technology means that domiciliary non-invasive ventilation (NIV) devices can be remotely monitored via modems in patients' homes. Possible benefits and challenges of modem technology have yet to be established. This study explored the perspectives and experiences of patients, their carers and healthcare professionals (HCPs) on the addition of modem technology in managing home NIV. METHODS: A qualitative study using a combination of focus groups for HCPs and interviews for carers/patients was undertaken. 12 HCPs and 22 patients/carers participated. These focus groups and interviews were audio-recorded, transcribed verbatim and analysed thematically. RESULTS: Five main themes were identified. 'Surveillance: a paradox of findings': HCPs were concerned about unduly scrutinising patients' lives, potentially impacting on HCP patient relationships. Conversely, patients welcomed modem monitoring and did not express concerns regarding invasion of privacy. 'Sanctions': HCPs reported the modem increased access to care and allowed appropriate assessment of ongoing treatment. 'Complacency and ethics': HCPs expressed concerns patients may become complacent in seeking help due to expectations of modem monitoring, as well as being concerned regarding the ethics of modems. There was a suggestion patients and carers' expectations of monitoring were different to that of clinical practice, resulting in complacency in some cases. 'Increased time for patient focused care': HCPs in the focus groups described a number of ways in which using modems was more efficient. 'Confidence: can be improved with technology': patients and carers were positive about the impact of the modems on their health and well-being, particularly their confidence. CONCLUSION: HCPs expressed concerns about surveillance were not corroborated by patients, suggesting acceptability of remote monitoring. Data suggests a need for increased clarity to patients/carers regarding clinical practice relating to responsiveness to modem data. The issue of complacency requires further consideration. Modem technology was acceptable and considered a useful addition by HCPs, patients and carers. TRIAL REGISTRATION NUMBER: NCT03905382.

Swallowing with Noninvasive Positive-Pressure Ventilation (NPPV) in Individuals with Muscular Dystrophy: A Qualitative Analysis.

The purpose of the study is to describe experiences of swallowing with two forms of noninvasive positive-pressure ventilation (NPPV): mouthpiece NPPV (M-NPPV) and nasal bilevel positive airway pressure (BPAP) in people with muscular dystrophy. Ten men (ages 22-42 years; M = 29.3; SD = 7.1) with muscular dystrophy (9 with Duchenne's; 1 with Becker's) completed the Eating Assessment Tool (EAT-10; Ann Otol Rhinol Laryngol 117(12):919-924 [33]) and took part in semi-structured interviews. The interviews were audio recorded, transcribed, and verified. Phenomenological qualitative research methods were used to code (Dedoose.com) and develop themes. All participants affirmed dysphagia symptoms via responses on the EAT-10 (M = 11.3; SD = 6.38; Range = 3-22) and reported eating and drinking with M-NPPV and, to a lesser extent, nasal BPAP. Analysis of interview data revealed three primary themes: (1) M-NPPV improves the eating/drinking experience: Most indicated that using M-NPPV reduced swallowing-related dyspnea. (2) NPPV affects breathing-swallowing coordination: Participants described challenges and compensations in coordinating swallowing with ventilator-delivered inspirations, and that the time needed to chew solid foods between ventilator breaths may lead to dyspnea and fatigue. (3) M-NPPV aids cough effectiveness: Participants described improved cough strength following large M-NPPV delivered inspirations (with or without breath stacking). Although breathing-swallowing coordination is challenging with NPPV, participants reported that eating and drinking is more comfortable than when not using it. Overall, eating and drinking with NPPV delivered via a mouthpiece is preferred and is likely safer for swallowing than with nasal BPAP. M-NPPV (but not nasal BPAP) is reported to improve cough effectiveness, an important pulmonary defense in this population.

What can we learn from patients to improve their non-invasive ventilation experience? 'It was unpleasant; if I was offered it again, I would do what I was told'.

OBJECTIVES: Non-invasive ventilation (NIV) is widely used as a lifesaving treatment in acute exacerbations of chronic obstructive pulmonary disease; however, little is known about the patients' experience of this treatment. This study was designed to investigate the experiences and perceptions of participants using NIV. The study interprets the participants' views and explores implications for clinical practice. METHODS: Participants with respiratory failure requiring NIV were interviewed 2 weeks after discharge. A grounded theory methodology was used to order and sort the data. Theoretical sufficiency was achieved after 15 participants. RESULTS: Four themes emerged from the data: levels of discomfort with NIV, cognitive experiences with NIV, NIV as a life saver and concern for others. NIV was uncomfortable for participants and affected their cognition; they still reported considering NIV as a viable option for future treatment. Participants described a high level of trust in healthcare professionals and delegated decision-making to them regarding ongoing care. CONCLUSIONS: This study provides insights into ways clinicians could improve the physical experience for patients with NIV. It also identifies a lack of recall and delegation of decision-making, highlighting the need for clinical leadership to advocate for patients.

Outcome of Frail Do-Not-Intubate Subjects With End-Stage Chronic Respiratory Failure and Their Opinion of Noninvasive Ventilation to Reverse Hypercapnic Coma.

BACKGROUND: The use of noninvasive ventilation (NIV) in the emergency setting to reverse hypercapnic coma in frail patients with end-stage chronic respiratory failure and do-not-intubate orders remains a questionable issue given the poor outcome of this vulnerable population. We aimed to answer this issue by assessing not only subjects' outcome with NIV but also subjects' point of view regarding NIV for this indication. METHODS: A prospective observational case-control study was conducted in 3 French tertiary care hospitals during a 2-y period. Forty-three individuals who were comatose (with pH < 7.25 and PaCO2 > 100 mm Hg at admission) were compared with 43 subjects who were not comatose and who were treated with NIV for acute hypercapnic respiratory failure. NIV was applied by using the same protocol in both groups. They all had a do-not-intubate order and were considered vulnerable individuals with end-stage chronic respiratory failure according to well-validated scores. RESULTS: NIV yielded similar outcomes in the 2 groups regarding in-hospital mortality (n = 12 [28%] vs n = 12 [28%] in the noncomatose controls, P > .99) and 6-month survival (n = 28 [65%] vs n = 22 [51%] in the noncomatose controls, P = .31). Despite poor quality of life scores (21.5 ± 10 vs 31 ± 6 in the awakened controls, P = .056) as assessed by using the VQ11 questionnaire 6 months to 1 y after hospital discharge, a large majority of the survivors (n = 23 [85%]) would be willing to receive NIV again if a new episode of acute hypercapnic respiratory failure occurs. CONCLUSIONS: In the frailest subjects with supposed end-stage chronic respiratory failure that justifies treatment limitation decisions, it is worth trying NIV when acute hypercapnic respiratory failure occurs, even in the case of extreme respiratory acidosis with hypercapnic coma at admission.

Experience of acute noninvasive ventilation-insights from 'Behind the Mask': a qualitative study.

OBJECTIVE: Non-invasive ventilation (NIV) is widely used in the management of acute and acute-on-chronic respiratory failure. Understanding the experiences of patients treated with NIV is critical to person-centred care. We describe the subjective experiences of individuals treated with NIV for acute hypercapnic respiratory failure. DESIGN: Qualitative face-to-face interviews analysed using thematic analysis. SETTING: Australian tertiary teaching hospital. PARTICIPANTS: Individuals with acute hypercapnic respiratory failure treated with NIV outside the intensive care unit. Individuals who did not speak English or were unable or unwilling to consent were excluded. RESULTS: 13 participants were interviewed. Thematic saturation was achieved. Participants described NIV providing substantial relief from symptoms and causing discomfort. They described enduring NIV to facilitate another chance at life. Although participants sometimes appeared passive, others expressed a strong conviction that they knew which behaviours and treatments relieved their distress. Most participants described gaps in their recollection of acute hospitalisation and placed a great amount of trust in healthcare providers. All participants indicated that they would accept NIV in the future, if clinically indicated, and often expressed a sense of compulsion to accept NIV. Participants' description of their experience of NIV was intertwined with their experience of chronic disease. CONCLUSIONS: Participants described balancing the benefits and burdens of NIV, with the goal of achieving another chance at life. Gaps in recall of their treatment with NIV were frequent, potentially suggesting underlying delirium. The findings of this study inform patient-centred care, have implications for the care of patients requiring NIV and for advance care planning discussions.

The multidimensional nature of dyspnoea in amyotrophic lateral sclerosis patients with chronic respiratory failure: Air hunger, anxiety and fear.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder leading to chronic respiratory failure. Few studies have investigated ALS-related dyspnoea, and none have characterised the emotional distress it inflicts. We hypothesised that ALS-related dyspnoea has a strong affective component that relates to quality of life. METHODS: This prospective, observational study was conducted in 41 ALS patients >18 with chronic respiratory failure and an indication for noninvasive ventilation (NIV). Dyspnoea was assessed using the Multidimensional Dyspnea Profile (MDP) at baseline and 1 month after NIV initiation. Correlations between scores evaluating the sensory and affective dimensions of dyspnoea and other patient-reported outcomes and pulmonary function tests were analysed. RESULTS: Dyspnoea was described as intense (median [IQR] score on a 0-10 scale: 6.5 [4.0-7.5]). The sensory dimension of dyspnoea was polymorphic, but «air hunger¼ was the most common (48.8%) and the most intense (6 [4-8]) sensory descriptor. In the affective domain, most patients rated «anxious¼ (85.4%) and «afraid¼ (60.9%) above 0. The MDP affective dimension correlated significantly with other patient-reported outcomes, with the strongest correlation being between MDP «anxious¼ and the anxiety component of the Hospital Anxiety Depression Scale (Pearson's R = 0.70). One month after initiation of NIV, dyspnoea during unassisted breathing was described in virtually the same terms, particularly the affective dimension. DISCUSSION: ALS-related dyspnoea is intense and fear-provoking, persists during unassisted breathing between NIV sessions, and significantly impacts health-related quality of life. This study highlights the need for increased awareness of and research into ALS-related dyspnoea.

Remarkable improvement in a very severe chronic obstructive pulmonary disorder patient after use of noninvasive intermittent positive pressure ventilator: A case report.

RATIONAL: Chronic obstructive pulmonary disease (COPD) impairs lung function and induces systemic effects, resulting in impaired quality of life. Skeletal muscle dysfunction-characteristic of advanced COPD patients-limits a patient's ability to perform activities of daily living (ADL). In addition, dysphagia is commonly observed in COPD patients. PATIENT CONCERN: This case report documents a 42-year-old man with very severe COPD. He experienced aggravation of the symptoms during standard medical treatment and his ability to perform the ADL was significantly impaired. Furthermore, his dysphagia worsened despite oromotor training. DIAGNOSIS: He was diagnosed as very severe COPD have a problem with swallowing and respiratory function. INTERVENTION: Upon NIPPV treatment, the patient's ability to perform the ADL, as well as his dysphagia, showed improvement. OUTCOMES: Thus, we report the remarkable improvement of physical function, as well as dysphagia, in a very severe COPD patient after NIPPV treatment. LESSONS: NIPPV may be useful as a treatment option for such patients.

Older patients with late-stage COPD: Their illness experiences and involvement in decision-making regarding mechanical ventilation and noninvasive ventilation.

AIMS AND OBJECTIVES: To explore the illness experiences of older patients with late-stage chronic obstructive pulmonary disease and to develop knowledge about how patients perceive their preferences to be taken into account in decision-making processes concerning mechanical ventilation and/or noninvasive ventilation. BACKGROUND: Decisions about whether older patients with late-stage chronic obstructive pulmonary disease will benefit from noninvasive ventilation treatment or whether the time has come for palliative treatment are complicated, both medically and ethically. Knowledge regarding patients' values and preferences concerning ventilation support is crucial yet often lacking. DESIGN: Qualitative design with a hermeneutic-phenomenological approach. METHODS: The data consist of qualitative in-depth interviews with 12 patients from Norway diagnosed with late-stage chronic obstructive pulmonary disease. The data were analysed within the three interpretative contexts described by Kvale and Brinkmann. RESULTS: The participants described their lives as fragile and burdensome, frequently interrupted by unpredictable and frightening exacerbations. They lacked information about their diagnosis and prognosis and were often not included in decisions about noninvasive ventilation or mechanical ventilation. CONCLUSION: Findings indicate that these patients are highly vulnerable and have complex needs in terms of nursing care and medical treatment. Moreover, they need access to proactive advanced care planning and an opportunity to discuss their wishes for treatment and care. RELEVANCE TO CLINICAL PRACTICE: To provide competent care for these patients, healthcare personnel must be aware of how patients experience being seriously ill. Advanced care planning and shared decision-making should be initiated alongside the curative treatment.

Involvement of patients' perspectives on treatment with noninvasive ventilation in patients with chronic obstructive pulmonary disease-A qualitative study.

AIMS AND OBJECTIVES: To clarify chronic obstructive pulmonary disease patients' perspectives on treatment with noninvasive ventilation and develop management strategies for the treatment based on these perspectives. BACKGROUND: The effect of treating chronic obstructive pulmonary disease patients with noninvasive ventilation is well-documented, as is the problem of patient difficulties in tolerating the treatment. Knowledge of how patients with chronic obstructive pulmonary disease experience and evaluate treatment with noninvasive ventilation is limited; therefore, more information of patient perspectives is needed to develop treatment practices in respiratory medicine. METHOD: This study is based on critical psychological practice research. DESIGN: A co-researcher group comprising diverse health professionals was set up and headed by the principal researcher. The group convened seven times over 12 months to develop new management strategies based on patients' perspectives on noninvasive ventilation. Health professionals contributed with experience-based perspectives, and the researcher contributed with data from participant observation in the department and semi-structured interviews with 16 patients and four relatives. RESULTS: Interviews revealed that patients with chronic obstructive pulmonary disease regarded noninvasive ventilation treatment positively even though they experienced discomfort and anxiety. Patients' perspectives revealed that patients with chronic obstructive pulmonary disease conduct their everyday lives with chronic obstructive pulmonary disease looking at chronic obstructive pulmonary disease as a basic life condition rather than an illness. This approach had a major impact on chronic obstructive pulmonary disease patients' attitudes to noninvasive ventilation treatment and hospitalisation. CONCLUSION: Investigation of patient perspectives generated results that were highly productive in facilitating multidisciplinary collaboration and in developing and sustaining new management strategies. Critical psychological practice research facilitated ongoing development of clinical practice related to noninvasive ventilation treatment. RELEVANCE TO CLINICAL PRACTICE: Focus on patients' perspectives in treatment with noninvasive ventilation resulted in the development of new management strategies regarding patient care, joint ward rounds, and in addition, one room at the ward, to which a nurse was assigned, was designated for chronic obstructive pulmonary disease patients treated with noninvasive ventilation.

Comparison of Different Disease-Specific Health-Related Quality of Life Measurements in Patients with Long-Term Noninvasive Ventilation.

BACKGROUND: Two disease-specific questionnaires have been developed to assess health-related quality of life (HRQL) in patients with chronic respiratory failure: the Severe Respiratory Insufficiency (SRI) Questionnaire and the Maugeri Respiratory Failure (MRF) Questionnaire. We aimed to compare the characteristics of the SRI, MRF-26, and St. George's Respiratory Questionnaire (SGRQ) for use in patients with home noninvasive ventilation (NIV). METHODS: Fifty-six outpatients receiving long-term NIV were recruited and underwent assessments of pulmonary function, arterial blood gas, HRQL, dyspnea, and psychological status. RESULTS: Correlations of the SRI and MRF-26 with the SGRQ were modest. While pulmonary function was weakly related to only some domains of the SRI and MRF-26, the modified Medical Research Council (mMRC) dyspnea scale and Hospital Anxiety and Depression Scale (HADS) were significantly related to all domains of the SRI and MRF-26. Multiple regression analyses showed that HADS depression and mMRC accounted for 34% and 27% of the variance in the SRI, 24% and 37% in the MRF-26, and 17% and 46% in the SGRQ, respectively. CONCLUSIONS: The SRI and MRF-26 were reliable questionnaires for patients receiving long-term NIV. Dyspnea and psychological status were their main common determinants. The SRI covers more psychological health impairments than the MRF. This trial is registered with ClinicalTrials.gov Identifier: NCT00905476.

Validation of the Japanese Severe Respiratory Insufficiency Questionnaire in hypercapnic patients with noninvasive ventilation.

BACKGROUND: The Severe Respiratory Insufficiency (SRI) Questionnaire was originally developed in German to assess health-related quality of life (HRQL) and was validated as a multidimensional instrument with high psychometric properties in chronic hypercapnic respiratory failure (CHRF) patients receiving noninvasive ventilation (NIV). We aimed to investigate the intercultural adaptation of the Japanese SRI Questionnaire and whether it is a reliable and valid HRQL questionnaire to administer to those patients. METHODS: The SRI Questionnaire was adapted to Japanese using a translation and back-translation procedure, followed by equivalency assessment. It was validated in 56 stable outpatients receiving NIV for CHRF, primarily due to chronic obstructive pulmonary disease (COPD) and/or pulmonary tuberculosis sequelae. RESULTS: Examination of the frequency distribution of the Japanese SRI Questionnaire showed that the subscales and summary were approximately normally distributed and well balanced. There were no significant differences in SRI scores between patients with COPD and pulmonary tuberculosis sequelae. Cronbach׳s α values representing internal consistency of seven SRI subscales ranged from 0.56 to 0.80; attendant symptoms and sleep had the lowest values. Cronbach׳s α value was 0.92 for the SRI summary. The SRI summary score was significantly related to all eight subscales of the Medical Outcomes Study 36-item short form, with correlation coefficients of 0.41-0.66. CONCLUSIONS: The Japanese SRI Questionnaire was produced using a standardized procedure and an equivalency study. It has high psychometric properties with internal consistency and concurrent validity. The Japanese SRI Questionnaire can be used to assess HRQL in patients on NIV for CHRF.

A psychological intervention to promote acceptance and adherence to non-invasive ventilation in people with chronic obstructive pulmonary disease: study protocol of a randomised controlled trial.

BACKGROUND: People with chronic obstructive pulmonary disease (COPD) sometimes experience anxiety, depression and comorbid cognitive deficits. Rather than being merely a consequence of symptom-related physical impairments these additional problems may be part of the clinical course of the condition. The relationship between the physical and psychological aspects of the condition is illustrated by the patterns of use of non-invasive ventilation (NIV); NIV is often rejected or used inappropriately, resulting in clinical deterioration and an increase in health care costs. The study aims to analyse the effects of psychological support on the acceptance of, and adherence to, NIV. The primary outcome will be a latent variable related to indices of use of NIV equipment and adherence to treatment regime; while survival rates and psychological variables will constitute the secondary outcomes. METHODS: A two-arm randomised controlled trial will be conducted. We aim to recruit 150 COPD patients for whom NIV is indicated. The experimental group will receive a brief course of psychological support that will include counselling, relaxation and mindfulness-based exercises. In some cases, it will also include neuropsychological rehabilitation exercises. Support will be delivered via four to eight meetings at the HD Respiratory Rehabilitation Unit, at home or via telemedicine. Controls will receive standard care and watch educational videos related to the management of their disease. DISCUSSION: This investigation will gain insight about the role of a psychological intervention as part of a treatment plan during the process of adaptation to NIV in COPD patients. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT02499653 . Registered on 14 July 2015.

Is chronic ventilatory support really effective in patients with amyotrophic lateral sclerosis?

Most patients with amyotrophic lateral sclerosis (ALS) develop respiratory insufficiency in the advanced stage of their disease. Non-invasive ventilation (NIV) is commonly regarded to be a treatment that is effective in reducing these complaints. To assess whether the effect of NIV on gas exchange and quality of life (QOL) is different in patients with ALS versus without ALS. A post hoc analysis was done with data from a previously published trial, in which all patients were instituted on NIV. Arterial blood gasses were assessed next to QOL by generic as well as disease-specific questionnaires. 77 patients started NIV: 30 with ALS and 47 without. Both groups showed significant improvements in blood gasses after 2 and 6 months. Compared to the non-ALS group, the ALS group had significantly worse scores after 6 months in MRF-28, SRI, HADS and SF-36 than the non-ALS group. This study shows that NIV improves gas exchange, both in patients with and without ALS. QOL improves markedly more in patients without ALS than in those with ALS, in whom only some domains improve. Our observation of little or no effect in ALS patients warrants a large study limited to ALS patients only.

Differential Perceptions of Noninvasive Ventilation in Intensive Care among Medical Caregivers, Patients, and Their Relatives: A Multicenter Prospective Study-The PARVENIR Study.

BACKGROUND: Noninvasive ventilation (NIV) requires a close "partnership" between a conscious patient and the patient's caregivers. Specific perceptions of NIV stakeholders and their impact have been poorly described to date. The objectives of this study were to compare the perceptions of NIV by intensive care unit (ICU) physicians, nurses, patients, and their relatives and to explore factors associated with caregivers' willingness to administer NIV and patients' and relatives' anxiety in relation to NIV. METHODS: This is a prospective, multicenter questionnaire-based study. RESULTS: Three hundred and eleven ICU physicians, 752 nurses, 396 patients, and 145 relatives from 32 ICUs answered the questionnaire. Nurses generally reported more negative feelings and more frequent regrets about providing NIV (median score, 3; interquartile range, [1 to 5] vs. 1 [1 to 5]; P < 0.0001) compared to ICU physicians. Sixty-four percent of ICU physicians and only 32% of nurses reported a high level of willingness to administer NIV, which was independently associated with NIV case-volume and workload. A high NIV session-related level of anxiety was observed in 37% of patients and 45% of relatives. "Dyspnea during NIV," "long NIV session," and "the need to have someone at the bedside" were identified as independent risk factors of high anxiety in patients. CONCLUSIONS: Lack of willingness of caregivers to administer NIV and a high level of anxiety of patients and relatives in relation to NIV are frequent in the ICU. Most factors associated with low willingness to administer NIV by nurses or anxiety in patients and relatives may be amenable to change. Interventional studies are now warranted to evaluate how to reduce these risk factors and therefore contribute to better management of a potentially traumatic experience. (Anesthesiology 2016; 124:1347-59).

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients' perspectives.

The objective was to identify factors associated with decisions made by patients with amyotrophic lateral sclerosis (ALS) to accept or decline non-invasive ventilation (NIV) and/or gastrostomy in a prospective population-based study. Twenty-one people with ALS, recruited from the South-East ALS Register who made an intervention decision during the study timeframe underwent a face-to-face in-depth interview, with or without their informal caregiver present. Sixteen had accepted an intervention (11 accepted gastrostomy, four accepted NIV and one accepted both interventions). Five patients had declined gastrostomy. Thematic analysis revealed three main themes: (1) patient-centric factors (including perceptions of control, acceptance and need, and aspects of fear); (2) external factors (including roles played by healthcare professionals, family, and information provision); and (3) the concept of time (including living in the moment and the notion of 'right thing, right time'). Many aspects of these factors were inter-related. Decision-making processes for the patients were found to be complex and multifaceted and reinforce arguments for individualised (rather than 'algorithm-based') approaches to facilitating decision-making by people with ALS who require palliative interventions.

An international survey on noninvasive ventilation use for acute respiratory failure in general non-monitored wards.

BACKGROUND: Use of noninvasive ventilation (NIV) for the treatment of patients with acute respiratory failure (ARF) has greatly increased in the last decades. In contrast, the increasing knowledge of its effectiveness and physician confidence in managing this technique have been accompanied by a declining number of available ICU beds. As a consequence, the application of NIV outside the ICU has been reported as a growing phenomenon. Previously published surveys highlighted a great heterogeneity in NIV use, clinical indications, settings, and efficacy. Moreover, they revealed a marked heterogeneity with regard to staff training and technical and organizational aspects. We performed the first worldwide web-based survey focused on NIV use in general wards for ARF. METHODS: A questionnaire to obtain data regarding hospital and ICU characteristics, settings and modalities of NIV application and monitoring, estimated outcomes, technical and organizational aspects, and observed complications was developed. The multiple-choice anonymous questionnaire to be filled out online was distributed worldwide by mail, LinkedIn, and Facebook professional groups. RESULTS: One-hundred fifty-seven questionnaires were filled out and analyzed. Respondents were from 51 countries from all 5 continents. NIV application in general wards was reported by 66% of respondents. Treatments were reported as increasing in 57% of cases. Limited training and human resources were the most common reasons for not using NIV in general wards. Overall, most respondents perceived that NIV avoids tracheal intubation in most cases; worsening of ARF, intolerance, and inability to manage secretions were the most commonly reported causes of NIV failure. CONCLUSIONS: Use of NIV in general wards was reported as effective, common, and gradually increasing. Improvement in staff training and introduction of protocols could help to make this technique safer and more common when applied in general wards setting.