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=63yrs). The median illness duration was 14m (range=7m-13yrs 7m) and the median non-invasive ventilation (NIV) usage was 12m (range=0m-3yrs). 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

The Effect of Race, Sex, and Insurance Status on Time-to-Listing Decisions for Liver Transplantation

Fair allocation of organs to candidates listed for transplantation is fundamental to organ-donation policies. Processes leading to listing decisions are neither regulated nor understood. We explored whether patient characteristics affected timeliness of listing using population-based data on 144,507 adults hospitalized with liver-related disease in Pennsylvania. We linked hospitalizations to other secondary data and found 3,071 listed for transplants, 1,537 received transplants, and 57,020 died. Among candidates, 61% (n = 1,879) and 85.5% (n = 2,626) were listed within 1 and 3 years of diagnosis; 26.7% (n = 1,130) and 95% (n = 1,468) of recipients were transplanted within 1 and 3 years of listing. Using competing-risks models, we found few overall differences by sex, but both black patients and those insured by Medicare and Medicaid (combined) waited longer before being listed. Patients with combined Medicare and Medicaid insurance, as well as those with Medicaid alone, were also more likely to die without ever being listed. Once listed, the time to transplant was slightly longer for women, but it did not differ by race/ethnicity or insurance. The early time period from diagnosis to listing for liver transplantation reveals unwanted variation related to demographics that jeopardizes overall fairness of organ allocation and needs to be further explored

Why don't they accept Non-Invasive Ventilation? : Insight into the interpersonal perspectives of patients with MND.

"Objectives. Although non-invasive ventilation (NIV) can benefit survival and quality of life, it is rejected by a substantial proportion of people with motor neurone disease (MND). The aim of this study was to understand why some MND patients decline or withdraw from NIV. Method. Nine patients withMND(male = 7, mean age = 67 years) participated in this study. These patients, from a cohort of 35 patients who were offered NIV treatment to support respiratory muscle weakness, did not participate in NIV treatment when it was clinically appropriate. Semi-structured interviews and interpretative phenomenological analysis (IPA) were employed to explore these patient’s experience of MND and their thoughts and understanding of NIV treatment. Results. Using IPA, four themes were identified: preservation of the self, negative perceptions of NIV, negative experience with health care services, and not needing NIV. Further analysis identified the fundamental issue to be the maintenance of perceived self, which was interpreted to consist of the sense of autonomy, dignity, and quality of life. Conclusions. The findings indicate psychological reasons for disengagement with NIV. The threat to the self, the sense of loss of control, and negative views of NIV resulting from anxiety were more important to these patients than prolonging life in its current form. These findings suggest the importance of understanding the psychological dimension involved in decision-making regarding uptake of NIV and a need for sensitive holistic evaluation if NIV is declined.

Variation in quality of acute stroke care by day and time of admission: prospective cohort study of weekday and weekend centralised hyperacute stroke unit care and non-centralised services.

OBJECTIVE: To investigate variations in quality of acute stroke care and outcomes by day and time of admission in London hyperacute stroke units compared with the rest of England. DESIGN: Prospective cohort study using anonymised patient-level data from the Sentinel Stroke National Audit Programme. SETTING: Acute stroke services in London hyperacute stroke units and the rest of England. PARTICIPANTS: 68 239 patients with a primary diagnosis of stroke admitted between January and December 2014. INTERVENTIONS: Hub-and-spoke model for care of suspected acute stroke patients in London with performance standards designed to deliver uniform access to high-quality hyperacute stroke unit care across the week. MAIN OUTCOME MEASURES: 16 indicators of quality of acute stroke care, mortality at 3 days after admission to the hospital, disability at the end of the inpatient spell, length of stay. RESULTS: There was no variation in quality of care by day and time of admission to the hospital across the week in terms of stroke nursing assessment, brain scanning and thrombolysis in London hyperacute stroke units, nor was there variation in 3-day mortality or disability at hospital discharge (all p values>0.05). Other quality of care measures significantly varied by day and time of admission across the week in London (all p values0.05). CONCLUSIONS: The London hyperacute stroke unit model achieved performance standards for 'front door' stroke care across the week. The same benefits were not achieved by other models of care in the rest of England. There was no weekend effect for mortality in London or the rest of the England. Other aspects of care were not constant across the week in London hyperacute stroke units, indicating some performance standards were perceived to be more important than others

Prehospital video triage of potential stroke patients in North Central London and East Kent: rapid mixed-methods service evaluation

Background In response to COVID-19, alongside other service changes, North Central London and East Kent implemented prehospital video triage: this involved stroke and ambulance clinicians communicating over FaceTime (Apple Inc., Cupertino, CA, USA) to assess suspected stroke patients while still on scene. Objective To evaluate the implementation, experience and impact of prehospital video triage in North Central London and East Kent. Design A rapid mixed-methods service evaluation (July 2020 to September 2021) using the following methods. (1) Evidence reviews: scoping review (15 reviews included) and rapid systematic review (47 papers included) on prehospital video triage for stroke, covering usability (audio-visual and signal quality); acceptability (whether or not clinicians want to use it); impact (on outcomes, safety, experience and cost-effectiveness); and factors influencing implementation. (2) Clinician views of prehospital video triage in North Central London and East Kent, covering usability, acceptability, patient safety and implementation: qualitative analysis of interviews with ambulance and stroke clinicians (n = 27), observations (n = 12) and documents (n = 23); a survey of ambulance clinicians (n = 233). (3) Impact on safety and quality: analysis of local ambulance conveyance times (n = 1400; April to September 2020). Analysis of national stroke audit data on ambulance conveyance and stroke unit delivery of clinical interventions in North Central London, East Kent and the rest of England (n = 137,650; July 2018 to December 2020). Results (1) Evidence: limited but growing, and sparse in UK settings. Prehospital video triage can be usable and acceptable, requiring clear network connection and audio-visual signal, clinician training and communication. Key knowledge gaps included impact on patient conveyance, patient outcomes and cost-effectiveness. (2) Clinician views. Usability – relied on stable Wi-Fi and audio-visual signals, and back-up processes for when signals failed. Clinicians described training as important for confidence in using prehospital video triage services, noting potential for ‘refresher’ courses and joint training events. Ambulance clinicians preferred more active training, as used in North Central London. Acceptability – most clinicians felt that prehospital video triage improved on previous processes and wanted it to continue or expand. Ambulance clinicians reported increased confidence in decisions. Stroke clinicians found doing assessments alongside their standard duties a source of pressure. Safety – clinical leaders monitored and managed potential patient safety issues; clinicians felt strongly that services were safe. Implementation – several factors enabled prehospital video triage at a system level (e.g. COVID-19) and more locally (e.g. facilitative governance, receptive clinicians). Clinical leaders reached across and beyond their organisations to engage clinicians, senior managers and the wider system. (3) Impact on safety and quality: we found no evidence of increased times from symptom onset to arrival at services or of stroke clinical interventions reducing in studied areas. We found several significant improvements relative to the rest of England (possibly resulting from other service changes). Limitations We could not interview patients and carers. Ambulance data had no historic or regional comparators. Stroke audit data were not at patient level. Several safety issues were not collected routinely. Our survey used a convenience sample. Conclusions Prehospital video triage was perceived as usable, acceptable and safe in both areas. Future research Qualitative research with patients, carers and other stakeholders and quantitative analysis of patient-level data on care delivery, outcomes and cost-effectiveness, using national controls. Focus on sustainability and roll-out of services. Study registration This study is registered as PROSPERO CRD42021254209. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 26. See the NIHR Journals Library website for further project information

What does it take to provide clinical interventions with temporal consistency? A qualitative study of London hyperacute stroke units.

OBJECTIVES: Seven-day working in hospitals is a current priority of international health research and policy. Previous research has shown variability in delivering evidence-based clinical interventions across different times of day and week. We aimed to identify factors influencing such variations in London hyperacute stroke units (HASUs). DESIGN: Interview and observation study to explain patterns of variation in delivery and outcomes of care described in a quantitative partner paper (Melnychuk et al). SETTING: Eight HASUs in London. PARTICIPANTS: We interviewed HASU staff (n=76), including doctors, nurses, therapists and administrators. We also conducted non-participant observations of delivery of care at different times of the day and week (n=45; ~102 hours). We analysed the data for thematic content relating to the ability of staff to provide evidence-based interventions consistently at different times of the day and week. RESULTS: Staff were able to deliver 'front door' interventions consistently by taking on additional responsibilities out of hours (eg, deciding eligibility for thrombolysis); creating continuities between day and night (through, eg, governance processes and staggering rotas); building trusting relationships with, eg, Radiology and Emergency Departments and staff prioritisation of 'front door' interventions. Variations by time of day resulted from reduced staffing in HASUs and elsewhere in hospitals in the evenings and at the weekend. Variations by day of week (eg, weekend effect) resulted from lack of therapy input and difficulties repatriating patients at weekends, and associated increases in pressure on Fridays and Mondays. CONCLUSIONS: Evidence-based service standards can facilitate 7-day working in acute stroke services. Standards should ensure that the capacity and capabilities required for 'front door' interventions are available 24/7, while other services, for example, therapies are available every day of the week. The impact of standards is influenced by interdependencies between HASUs, other hospital services and social services

Multinational, observational study of procalcitonin in ICU patients with pneumonia requiring mechanical ventilation: a multicenter observational study

The intent of this study was to determine whether serum procalcitonin (PCT) levels are associated with prognosis, measured as organ dysfunctions and 28-day mortality, in patients with severe pneumonia.Journal ArticleMulticenter StudyResearch Support, Non-U.S. Gov'tSCOPUS: ar.jinfo:eu-repo/semantics/publishe