The use of non-invasive ventilation at end of life in patients with motor neurone disease: a qualitative exploration of family carer and health professional experiences.

BACKGROUND: Non-invasive ventilation improves quality and quantity of life in patients with motor neurone disease who have respiratory failure. Use of non-invasive ventilation may, however, result in complex clinical issues for end-of-life care, with concerns as to whether and how it should be withdrawn. AIM: This study aimed to describe carer and health professional experiences of end-of-life care of motor neurone disease patients using non-invasive ventilation. DESIGN/PARTICIPANTS: This article reports data from qualitative interviews with family carers and professionals following the death of patients with motor neurone disease who were using non-invasive ventilation in the final phase of the disease. RESULTS: Ten of the 20 patients initiated on non-invasive ventilation were using it in the end-of-life phase of their disease, with 5 using it for 24 h/day. Interviews were carried out with nine family carers and 15 professionals. Nine recurring themes were identified in the data. Both carers and health-care professionals perceived that the terminal phase of motor neurone disease was unexpectedly rapid and that this often led to unplanned interactions with the emergency services. Carers of patients who used non-invasive ventilation perceived non-invasive ventilation as aiding patient comfort and anxiety at the end of life. CONCLUSIONS: The use of non-invasive ventilation was described as beneficial and was not perceived by carers or most professionals to have adversely impacted patient's end-of-life experience. This study highlights variation in patient wishes regarding usage towards the end of life, uncertainty regarding appropriate management among professionals and the importance of disseminating end-of-life wishes.

Antecedents of fatal overdose in an adult cohort identified through administrative record linkage in Indiana, 2015-2022.

BACKGROUND: The United States continues to experience unprecedented rates of overdose mortality and need to identify effective policies or practices that can be implemented. This study aims to measure the prevalence, frequency, timing, and rate of touchpoints that occurred prior to a fatal overdose where communities might intervene. METHODS: In collaboration with Indiana state government, we conducted record-linkage of statewide administrative datasets to vital records (January 1, 2015, through August 26, 2022) to identify touchpoints (jail booking, prison release, prescription medication dispensation, emergency department visits, and emergency medical services). We examined touchpoints within 12-months prior to a fatal overdose among an adult cohort and explored variation over time and by demographic characteristics. RESULTS: Over the 92-month study period there were 13,882 overdose deaths (89.3% accidental poisonings, X40-X44) in our adult cohort that were record-linked to multiple administrative datasets and revealed nearly two-thirds (64.7%; n=8980) experienced an emergency department visit, the most prevalent touchpoint followed by prescription medication dispensation, emergency medical services responses, jail booking, and prison release. However, with approximately 1 out of every 100 returning citizens dying from drug overdose within 12-months of release, prison release had the highest touchpoint rate followed by emergency medical services responses, jail booking, emergency department visits, and prescription medication dispensation. CONCLUSION: Record-linking administrative data from routine practice to vital records from overdose mortality is a viable means of identifying where resources should be situated to reduce fatal overdose, with potential to evaluate the effectiveness of overdose prevention efforts.

Using transcutaneous carbon dioxide monitor (TOSCA 500) to detect respiratory failure in patients with amyotrophic lateral sclerosis: a validation study.

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative condition, respiratory failure being the commonest cause of death. Quality of life and survival can be improved by supporting respiratory function with non-invasive ventilation. Transcutaneous carbon dioxide monitoring is a non-invasive method of measuring arterial carbon dioxide levels enabling simple and efficient screening for respiratory failure. The aim of this study was to validate the accuracy of carbon dioxide level recorded transcutaneously with a TOSCA 500 monitor. It is a prospective, observational study of 40 consecutive patients with ALS, recruited from a specialist ALS clinic. The partial pressure of carbon dioxide (PCO(2)) in each patient was determined by both transcutaneous monitoring and by an arterialized ear lobe capillary blood sample. The carbon dioxide (CO(2)) levels obtained with these two methods were compared by Bland-Altman analysis. The results showed that the mean difference between arterialized and transcutaneous readings was - 0.083 kPa (SD 0.318). The Bland-Altman limits of agreement ranged from 0.553 to - 0.719 kPa. The difference was < 0.5 kPa in 90% of the recordings. Four of the 40 measurements had a difference of > 0.5 kPa, with a maximum recorded difference of 0.95 kPa. In conclusion, non-invasive carbon dioxide monitoring using a TOSCA monitor is a useful clinical tool in neurology practice. Users should be aware of the possibility of occasional inaccurate readings. A clinically unexpected or incompatible reading should be verified with a blood gas analysis, especially when a decision to provide ventilatory support is required.

Respiratory management of motor neurone disease: a review of current practice and new developments.

Motor neurone disease is a neurodegenerative condition with a significant morbidity and shortened life expectancy. Hypoventilatory respiratory failure is the most common cause of death and respiratory function significantly predicts both survival and quality of life in patients with motor neurone disease. Accordingly, supporting and maintaining respiratory function is important in caring for these patients. The most significant advance in motor neurone disease care of recent years has been the domiciliary provision of non-invasive ventilation for treating respiratory failure. Neuromuscular respiratory weakness also leads to ineffective cough and retained airways secretions, predisposing to recurrent chest infections. In this review, we discuss current practice and recent developments in the respiratory management of motor neurone disease, in terms of ventilatory support and cough augmentation.

Sensitization to wheat flour and enzymes and associated respiratory symptoms in British bakers.

RATIONALE: Current literature suggests that flour exposed workers continue to be at risk of allergic sensitization to flour dust and respiratory ill health. OBJECTIVES: A cross-sectional study of 225 workers currently potentially exposed to flour dust in British bakeries was performed to identify predictors of sensitization to wheat flour and enzymes. RESULTS: Work-related nasal irritation was the most commonly reported symptom (28.9%) followed by eye irritation (13.3%) and work-related cough or chest tightness (both 10.2%). Work-related chest tightness was significantly associated (OR 7.9, 1.3-46.0) with co-sensitization to wheat flour and any added enzyme. Working at a bakery with inadequate control measures was not a risk factor for reporting work-related respiratory symptoms (OR 1.3, 0.4-3.7). Fifty-one workers were atopic and 23 (14%) were sensitized to workplace allergens. Atopy was the strongest predictive factor (OR 18.4, 5.3-64.3) determining sensitization. Current versus never smoking (OR 4.7, 1.1-20.8) was a significant risk factor for sensitization to wheat flour or enzymes in atopic workers only, corrected for current level and duration of exposure. This effect was not seen in non-atopic workers (OR 1.9, 0.2-17.9). Evidence of sensitization to less commonly encountered allergens was also seen to Aspergillus niger derived cellulase, hemicellulase and xylanase mix, in addition to glucose oxidase and amyloglucosidase mix. CONCLUSIONS: The combination of health surveillance and exposure control in this population has been insufficient to prevent clinically significant workplace sensitization. Smoking may pose an additional risk factor for sensitization in atopic workers. Am. J. Ind. Med. 52:133-140, 2009.

Hierarchical Model Predictive Image-Based Visual Servoing of Underwater Vehicles With Adaptive Neural Network Dynamic Control.

This paper proposes a hierarchical image-based visual servoing (IBVS) strategy for dynamic positioning of a fully actuated underwater vehicle. In the kinematic loop, the desired velocity is generated by a nonlinear model predictive controller, which optimizes a cost function of the predicted image trajectories under the constraints of visibility and velocity. A velocity reference model, representing the desired closed-loop vehicle dynamics, is integrated with an IBVS kinematic model to predict the future trajectories. In the dynamic velocity tracking loop, a neural-network-based model reference adaptive controller is designed to ensure the convergence of the velocity tracking error in the presence of uncertainties associated with vehicle dynamic parameters, water velocity, and thrust forces. Comparative simulations with different control and system configurations are performed to verify the effectiveness of the proposed scheme and to illustrate the influences of the prediction horizon, cost function, closed-loop vehicle dynamics, and predictive velocity reference model on the IBVS system performance.

A preliminary randomized trial of the mechanical insufflator-exsufflator versus breath-stacking technique in patients with amyotrophic lateral sclerosis.

A major problem faced by patients with amyotrophic lateral sclerosis (ALS) in respiratory failure is the inability to cough effectively. Forty eligible ALS patients were randomized to the breath-stacking technique using a lung volume recruitment bag (n = 21) or mechanical insufflator-exsufflator MI-E (n = 19) and followed up at three-monthly intervals for at least 12 months or until death. Results showed that there were 13 episodes of chest infection in the breath-stacking group and 19 episodes in the MI-E group (p = 0.92), requiring 90 and 95 days of antibiotics, respectively (p = 0.34). The mean duration of symptoms per chest infection was 6.9 days in the breath-stacking group and 3.9 days in MI-E group (p = 0.16). There were six episodes of hospitalization in each group (p = 0.64). The chance of hospitalization, in the event of a chest infection, was 0.46 in the breath-stacking group and 0.31 in MI-E group (p = 0.47). Median survival in the breath-stacking group was 535 days and 266 days in the MI-E group (p = 0.34). The QoL was maintained above 75% of baseline for a median of 329 days in the breath-stacking group and 205 days in the MI-E group (p = 0.41). In conclusion, lack of statistically significant differences due to sub-optimal power and confounders precludes a definitive conclusion with respect to the relative efficacy of one cough augmentation technique over the other. This study however, provides useful lessons and informative data, needed to strengthen the power calculation, inclusion criteria and randomization factors for a large scale definitive trial. Until such a definitive trial can be undertaken, we recommend the breath-stacking technique as a low-cost, first-line intervention for volume recruitment and cough augmentation in patients with ALS who meet the criteria for intervention with non-invasive ventilation.

The impact on the family carer of motor neurone disease and intervention with noninvasive ventilation.

BACKGROUND: The diagnosis of motor neurone disease (MND) has a profound effect on the functioning and well-being of both the patient and their family, with studies describing an increase in carer burden and depression as the disease progresses. AIM: This study aimed to assess whether patient use of noninvasive ventilation (NIV) impacted on their family carer, and to explore other sources of carer burden. DESIGN: The study used qualitative interviews and scaled measures of carer health and well-being completed at three monthly intervals until patient end of life. PARTICIPANTS: Sixteen family carers were followed up over a period ranging from one month to two years. RESULTS: NIV was perceived as having little impact on carer burden. The data however highlighted a range of sources of other burdens relating to the physical strain of caring. The Medical Outcomes Study Short Form (SF-36 Health Survey) Physical Component Summary (PCS) scores were considerably below that of the Mental Component Summary (MCS) score at baseline and at all following time points. Carers described the physical effort associated with patient care and role change; the challenge inherent in having time away; and problems relating to the timing of equipment and service delivery. CONCLUSIONS: NIV can be recommended to patients without concerns regarding increasing carer burden. The predominant source of burden described related to the physical impact of caring for a patient with MND. Services face challenges if this physical burden is to be reduced by providing equipment at an optimal time and successfully coordinating their input.

The initiation of non-invasive ventilation for patients with motor neuron disease: patient and carer perceptions of obstacles and outcomes.

This study aimed to examine the experiences of patients with motor neuron disease and their carers following the recommendation to use non-invasive ventilation (NIV). Qualitative interviews were carried out with 20 patients and 17 carers within one month of NIV being initiated. The study identified a range of potential barriers to usage including: adverse impressions of the technology; sleep disturbance; the sensation of pressure and pulsing; dry mouth; and mask design issues. Patients/carers perceived benefits related to: increased energy; improved sleeping; enhanced carer well-being; improved breathing and increased speech clarity. A key factor described by patients and carers was the need to persevere to overcome the challenges associated with early NIV use. The study highlights the importance of patient perceptions of gains as a factor in their NIV usage decisions. While recognizing that older individuals with limb-onset disease were over-represented in the sample, key recommendations from the study are: availability of easily accessible in-person support for patients; for clinicians to pre-empt potential obstacles by discussing options such as humidification or alternative mask interfaces; the importance of discussing potential benefits in detail with patients; and optimization of secretion management prior to NIV trial.