Helen Ashcroft

Intermittent daytime mouthpiece ventilation successfully augments nocturnal non-invasive ventilation, controlling ventilatory failure and maintaining patient independence

A 53-year-old woman with spinal muscular atrophy and a 7-year history of nocturnal non-invasive ventilation (NIV) use via nasal mask and chinstrap was admitted electively. Outpatient review suggested symptomatic hypercapnia and hypoxaemia. Use of her usual NIV resulted in early morning respiratory acidosis due to excess mouth leak, and continuous face mask NIV was instigated while in hospital. Once stabilised, she elected to return to nasal ventilation. At outpatient review, respiratory acidosis reoccurred despite diurnal use of NIV. Using the patients routine ventilator and a novel mouthpiece and trigger algorithm, intermittent daytime mouthpiece ventilation (MPV) was introduced alongside overnight NIV. Control of respiratory failure was achieved and, vitally, independent living maintained. Intermittent MPV was practicable and effective where the limits of ventilator tolerance had otherwise been reached. MPV may reduce the need for tracheostomy ventilation and this case serves as a reminder of the increasing options routinely available to NIV clinicians.

S57 Qualitative assessment of the experience of telemonitoring in ventilated patients with motor neurone disease

Background The National Institute for Health and care Excellence (NICE) has recently issued recommendations on the care of people with motor neurone disease (MND), promoting tailored care for each patient, Guideline 42, 2016. Previous studies suggest remote monitoring offers a facility to regularly monitor and interact with patients, providing timely interventions so it may facilitate delivery of the recommendations. The efficacy of this approach is dependent upon acceptability of telemonitoring to patients. Aim To understand the experiences of using telemonitoring in ventilated patients with MND. Methods Semi-structured interviews were conducted with seven patients (male = 5; mean age = 63 yrs). The median illness duration was 14 m (range = 7 m–13 yrs 7 m) and the median non-invasive ventilation (NIV) usage was 12 m (range = 0 m–3 yrs). Participants used a telemonitoring device (Docobo CAREPORTAL®) for six months, completed weekly nocturnal pulse oximetry and symptom-related questions. Five caregivers were present at the interviews and provided their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was conducted to find overarching themes. The interpretation was reviewed and supported by a multidisciplinary team examination. Findings Five themes were identified: Technical Challenges, Increased Self-Awareness, Taking Initiative, Benefits of Timely Intervention, and Reducing the Unnecessary. Whilst participants expressed general ease of Careportal® use, technical issues included; messaging system challenges, oximetry transmission, device fault, mobile signal loss. No other negative experience of using Careportal® was reported. Overall, participants expressed how telemonitoring enabled symptom awareness and interpretation. The device also enabled the participants to raise their concerns and/or requests to the healthcare professionals via the messaging system, and this was depicted as a sharp contrast to current communication with hospitals. Timely interventions were observed as a result of regular monitoring, contributing to both physical and psychological well-being of the participants. It was also suggested that using Careportal® could reduce unnecessary cost/time and hassles created by attending hospital appointments. Conclusions Telemonitoring enabled participants to be actively involved in their care and they felt that the interventions were timely delivered to meet their needs. The findings suggest potential benefits of utilising Careportal ® in routine care as a contact point to accommodate different individual’s needs. Supported by an SBRI Grant

Successful wireless monitoring and therapy alteration in home NIV: Proof of principle

Background: Wireless monitoring and titration of NIV (non-invasive ventilation) has been reported in one European centre (Pinto et al . J Neurol Neurosurg Psychiatry 2010); this is now available in a standard UK device. Aim: Pilot evaluation of the effectiveness of therapy, data transfer and remote modification. Methods: Eligible patients included those new to or already using NIV, excluding patients with likely ventilator dependency; 3 patients were issued Lumis 150 VPAP ST-A devices for trial (Resmed, UK). Results: Ventilator interaction data has been visible since initiation. Patient A: Leak was seen to exceed recommendations for this device and circuit (24LPM), with a median of 59.2LPM. Mask and setting change has been undertaken and monitored remotely, avoiding inpatient titration or 110km travel; median leak is now 5.2LPM. Patient B: Satisfactory compliance (all days >4hours), tidal volume (median 944ml) and minute ventilation (median 13.5LPM) seen; no modifications made. Patient C: Symptomatic sleep disordered breathing and poor compliance with CPAP led to trial of NIV. Remote data shows that NIV was used 19 times in 28 days (average 2.1h/night). Tidal volumes are satisfactory (median 697ml) but continued low compliance has guided input. Conclusion: Remote NIV titration and monitoring is available and effective, allowing targeted input and potential streamlining of initiation and follow-up.

P195 Demographics and outcomes of NIV in MND: a frontline perspective

Introduction Non-invasive ventilation (NIV) in motor neurone disease (MND) is an evidence-based therapy, recommended by NICE. A single centre randomised trial of 41 patients underpins much of current practice,1 it was suggested our patient cohort may differ from those in the original trial work. Methods Retrospective review of all patients offered NIV from 01.01.2013 to 30.06.2015. Data was taken from the initial neurology referral, and NIV set-up. Demographics were compared with the Newcastle study1 (Table 1). Twelve month survival, and/or death post NIV initiation were assessed.Abstract P195 Table 1 NIV trials for MND (January 2013–June 2015) Results Sixty-three patients were offered trial of NIV; 5 declined admission, and 7 declined NIV. Fifty-one patients were discharged with NIV, of whom 4 rapidly discontinued ventilation. Forty-seven patients were followed as NIV users, 35 for at least a year or to death. Fifty-seven percent were documented as having bulbar symptoms, the severity of which were not formally assessed. Twenty-nine percent received formal carer support at NIV initiation. Of the 35, 24 (68.6%) died within one year of NIV commencement, and median survival for all deaths was 177 days (range 4–630 days). Patients who died were significantly more likely to have bulbar dysfunction (18/24, p = 0.003) with a trend to reduced survival, median 149 vs. 239.5 days non-bulbar (p = 0.09). Twenty patients are alive at data collection, current median survival 292 days (range 7–793 days) and this data will affect results. Those with carers in place had a significantly lower ALSFRS-R (26.3 vs 32.4, p = 0.008) and shorter median survival (135 days). Of those dying or surviving at least a year, 22/35 (63%) were issued with cough-assist support (18/22 mechanical in/exsufflation). Conclusions Our cohort and outcomes are similar to those in the Bourke trial. Patients with bulbar disease, and/or pre-existing care input may have worse survival. Current users will be followed up to complete the dataset for survival. The impact of bulbar disease, cough augmentation2 and carer need remain uncertain. Ways to better assess and support these groups should be sought, and adequately powered randomised trials in these areas developed. References 1 Bourke SC, Tomlinson M, Williams TL. et al. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised controlled trial. Lancet Neurol. 2006;5:140–7 2 Rafiq MK, Bradburn M, Proctor AR. et al. A preliminary randomized trial of the mechanical insufflator-exsufflator versus breath-stacking technique in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. Published Online First: 3 Jul 2015. doi:10.3109/21678421.2015.1051992

P194 Inpatient adjustment of sub-optimal home mechanical ventilation (HMV) – an effective use of resources?

Introduction HMV can be initiated and monitored as either inpatient or outpatient. There is little evidence for best practice in this field and inpatient ventilation beds are a scarce resource. We evaluated patients, with sub-optimal HMV, admitted to our tertiary unit for adjustments to consider whether these admissions were successful, and hence an effective use of resources. Methods Patients were identified from our ventilation unit’s database. Notes, oximetry and ventilator download from pre-admission, pre-discharge and post-discharge were retrospectively analysed. Results In a 6-month period (June–December 2013) 30 patients were admitted to our unit for adjustments of HMV. 43% were female. Obesity related sleep disorder formed the majority of underlying conditions (53%), with musculoskeletal deformities (20%) and neuromuscular conditions (10%) also frequently seen. Median length of stay was 2 days. HMV was discontinued during admission in 2 cases in line with patient wishes. 19 (63%) were deemed to have had successful admissions, defined as normalisation of at least one abnormal ventilation parameter (pCO2 >6.0, desaturations >14/hr, time below 90% of >30 min, mean saturations of <88%, usage >6 hrs, leak <50 L/min). Of the 19 successful admissions, 6 showed sustained improvement post-discharge. 11 (37%) admissions were deemed unsuccessful, poor baseline usage and missed outpatient appointments were observed in this group. Noteworthy improvements were made to oximetry parameters during admission, although not all of these were maintained post-discharge (Table 1).Abstract P194 Table 1 N = 30 Oximetry Desaturations >14/hr >30 mins <90% Mean saturations <88% Pre admission 8 (27%) 23 (77%) 9 (30%) Pre discharge 2 (7%) 6 (20%) 3 (10%) Post discharge 4 (13%) 18 (60%) 2 (7%) Ventilator leak and usage information was available for 22 (73%) patients. Excess leak (50 >L/min) was seen in 10 patients pre-admission, only 1 patient had excess leak post-discharge. Pre-admission usage of <2 h/night was seen in 6 patients, only 1 showed sustained improvement in usage. 8 patients were admitted with usage of 2– 4 h, 4 improved post discharge usage to >6 h and only 1 showed deterioration in usage. Conclusion Admitting patients for adjustments to HMV can improve ventilation parameters yet only some of these improvements are maintained after discharge. There appears to be a subset of patients who do not benefit from inpatient admissions, particularly patients with poor baseline usage. We suggest careful selection of patients to ensure effective use of limited resources.

P190 Development of a respiratory question set for remote monitoring in motor neurone disease (MND)

Background Benefits of tele-monitoring (TM) of home non-invasive ventilation (NIV) in MND have been reported. Question sets for other respiratory conditions may not be transferrable. This work sought to develop questions transmitted via tablet device (Docobo Careportal®) allowing patients to inform clinicians of respiratory status, illness progression and NIV issues. Methods Modified Delphi methodology was used involving 4 stages: initial expert panel with clinicians (EP1), trial of questions and feedback sessions (FS) with patients, second panel with professionals (EP2). 21 questions were developed at EP1 and trialled with 9 patients (male = 7; mean = 58 years; mean illness duration = 52 months) for 8 weeks. FS were conducted after the trial to examine face validity, clarity and relevance. Each question was deemed clear if at least there was 80% agreement.18 questions were retained, 3 modified, 2 deleted and 5 added. EP2 repeated the process, the resulting final question set contained 26 items of which 17 generate a notification. Patients completed questions weekly, appropriateness of alerts was checked by phone call; the panel specified some notifications to be of greater clinical importance requiring intervention or further observation. It was possible to review reported issues against overnight oximetry and patient ventilation interaction data. Results For 12 weeks, 10 patients using NIV male = 7; mean (SD) age = 62 (8) years; median illness duration = 16.5 months, completed the final question set weekly. 210 alerts (geometric mean 15.3, IQ range 11–24.) were generated for; sleep quality, alertness, tiredness, NIV compliance, secretion clearance difficulty, increased secretions, and increased dyspnoea. 34 interventions resulted as described in the bar chart: the median number of interventions per patient was 2 (range = 0–9). Discussion To date the questions appear valid with no misunderstanding revealed. Appropriate and timely treatment adjustment and clinical review was facilitated. Prompt interventions may reduce psychological distress for patients and caregivers. This patient group are normally followed up three-monthly under the current NICE guidance; this question validation work suggests value in more frequent contact. Tele-monitoring, including symptom monitoring with a validated question set, may offer an alternative approach to following these complex patients.Abstract P190 Figure 1 Bar chart showing total number and type of interventions per participant

S85 Initiation of long-term non-invasive ventilation enables successful weaning from prolonged mechanical ventilation

Introduction Prolonged mechanical ventilation is an increasing workload for intensive care units (ICU). Units distinct from ICU can provide step-down care for stable slow-to-wean patients and facilitate weaning by the use of long-term non-invasive ventilation (NIV). Development has been limited in the UK despite being recommended by the NHS Modernisation Agency in 2002 and reiterated by the NHS Commissioning Board in 2013. A unit opened at our hospital in September 2010 as part of a comprehensive complex home ventilation service. Methods Review of completed in-patient episodes of transfers for weaning from invasive mechanical ventilation (IMV) from September 2010 to December 2012. Transfers following neurosurgery were compared with allcomers. Results Thirty-nine patients were identified, mean age 54.2 (17.9) years, 24 male. Average length of stay (LOS) on the referring ICU was 49 days. Six had neuromuscular disease, nine COPD, 7 were obese or had chest wall disease, 14 ICU-acquired weakness and 3 used NIV prior to ICU admission. Thirty-five patients survived to hospital discharge. Thirty-one patients were successfully decannulated and weaned from IMV, including the use of nocturnal NIV. Twelve required no ventilatory support, 19 were discharged using nocturnal NIV and 5 continued nocturnal IMV (one of own choice). Twenty-two were discharged directly home, 7 to rehabilitation or the referring hospital and 6 to long-term nursing care. Thirty-four patients were alive 6 months after hospital discharge. Seven transfers had undergone neurosurgery, five having posterior fossa surgery. Compared with allcomers they were significantly more likely to have permanent bulbar dysfunction, require feeding gastrostomy, tracheostomy on discharge, have a longer LOS (106 vs 51 days) and were less likely to be discharged home. Long-term NIV was used in two neurosurgical patients compared with 17 allcomers. Conclusions Patients with weaning failure can be effectively managed outside ICU. NIV enabled weaning in 50% of cases; consistent with published experience1. Six month survival is good and most are discharged directly home. Patients after neurosurgery present a specific challenge. NIV may not possible, and ongoing bulbar dysfunction may necessitate the retention of a tracheostomy for ventilation, airway protection and suction. References Pilcher et al. Thorax 2005:187–192.

P172 Acute NIV and mortality - failure of delivery or patient selection?

Background Non-invasive ventilation (NIV) is an established treatment for patients with acute ventilatory failure. It can be successfully provided on a specialist ward, rather than intensive care (ICU) when certain criteria are met. It is frequently delivered outside ICU when a patient is deemed not suitable for invasive ventilation. Methods Deaths in 2012 on our dedicated ventilation unit were analysed as part of ongoing clinical governance. Information on demographics, admission diagnosis, respiratory and metabolic acidosis, consolidation or pulmonary oedema on chest radiograph reports, Glasgow Coma Score (GCS), serum creatinine and hospital length of stay prior to NIV were recorded. Escalation of care and resuscitation decisions were noted. Results There were 228 admissions for acute NIV, with 31 recorded deaths (13.6%), 22 case notes were available for review. Mean age was 79 years, 77.3% had known COPD, admission median MRC score of 4, and 18.2% had been in hospital for >7 days before NIV. All had acute hypercapnic respiratory failure. Not for resuscitation decisions had been made for 95.5% prior to NIV, and 100% had NIV as a ‘ceiling of care’. Mean pH was 7.25 (SD 0.06), similar to previous reports of admissions to our unit1, 22% had mixed acidosis (BE <-2.0 mmol/l). GCS was <8 in 9% and 36.4% had serum creatinine >100 µmol/l, all triggering alerts for acute kidney injury. Admission diagnoses are shown in figure 1. Radiographic consolidation was reported in 59.1% and pulmonary oedema in 18.2%. Abstract P172 Figure 1. Admitting diagnoses based on initial clinician assessment. Conclusion The mortality of patients receiving acute NIV is low2. Most deaths had an underlying diagnosis of COPD, they were an elderly frail group, deemed inappropriate for escalation to critical care. There were multiple risk factors for NIV failure on initiation of therapy. Whilst a trial of NIV may have been appropriate based purely on blood gases, it was at high risk of failure and discussion about end of life care may have offered an alternative approach. References Chakrabarti et al. Thorax 2009;857–62. Roberts et al. Thorax 2010;43–8.