ALS Health care provider wellness.

BACKGROUND: Interest in health care provider (HCP) wellness and burnout is increasing; however, minimal literature explores HCP wellness in the context of Amyotrophic Lateral Sclerosis (ALS) care. OBJECTIVES: We sought to determine rates of burnout and resiliency, as well as challenges and rewards in the provision of ALS care. METHODS: A survey link was sent to physicians at all Canadian ALS centers for distribution to ALS HCPs in their network. The survey included demographics questions, and validated measures for resiliency and burnout; the Brief Resilient Coping Scale (BRCS) and the Single Item Burnout Score (SIBS). Participants were asked to describe challenges and rewards of ALS care, impact of COVID-19 pandemic, and how their workplace could better support them. RESULTS: There were 85 respondents across multiple disciplines. The rate of burnout was 47%. Burnout for female respondents was significantly higher (p = 0.007), but not for age, role, or years in ALS clinic. Most participants were medium resilient copers n = 48 (56.5%), but resiliency was not related to burnout. Challenges included feeling helpless while patients relentlessly progressed to death, and emotionally charged interactions. Participants found fulfillment in providing care, and through relationships with patients and colleagues. There was a strongly expressed desire for increased resources, team building/debriefing, and formal training in emotional exhaustion and burnout. CONCLUSIONS: The high rate of burnout and challenges of ALS care highlight the need for additional resources, team-building, and formal education around wellness.

Photovoice as a Participatory Research Tool in Amyotrophic Lateral Sclerosis.

BACKGROUND: Photovoice is a qualitative research tool increasingly utilized in the healthcare field to understand the illness experience from the patient and caregiver perspective. This is the first study to evaluate photovoice in the context of amyotrophic lateral sclerosis (ALS). OBJECTIVE: A patient and caregiver centered research tool was utilized to gain a greater understanding of challenges faced when living with ALS. METHODS: Eight patients and three corresponding caregivers participating by taking photographs, writing descriptive text, and participating in individual and group interviews. Inductive thematic analysis was employed to uncover recurring themes. RESULTS: Five main themes were identified; 1) facing the diagnosis, 2) loss of function, 3) isolation, 4) health system challenges, and 5) hope. Despite the devasting impact of ALS, the majority of participants reported a surprising amount of positivity in the face of receiving this difficult diagnosis, and demonstrated incredible creativity and adaptability to meet the ensuing loss of function. However, patients and caregivers discussed feelings of isolation and health care system challenges. The importance of hope was a strong and recurring theme. CONCLUSIONS: The photovoice research tool demonstrates the profound resilience of these participants, and challenges the medical community to find ways of fostering positivity and hope throughout the ALS disease course. Further clinic and community resources, education, and supports are needed to combat the sense of isolation and health care system challenges experienced by patients and their caregivers.

Rural Residence and Diagnostic Delay for Amyotrophic Lateral Sclerosis in Saskatchewan.

BACKGROUND: Diagnostic delay in amyotrophic lateral sclerosis (ALS) is common. In a recent Canadian study evaluating provincial differences in care, Saskatchewan had the longest delay at 27 months. Since Saskatchewan has a large rural population, this study sought to determine whether geographically determined access to a neurologist at tertiary centers could be contributing to this lengthy delay. METHODS: A retrospective chart review of 171 patients seen in the ALS clinic in Saskatoon, Saskatchewan was performed. Urban or rural location, distance from nearest tertiary center, and clinically relevant data were collected. RESULTS: There was no difference between urban and rural populations for delay in symptom onset to diagnosis. For rural patients, linear regression modeling did not uncover a significant relationship between distance from tertiary center and time to diagnosis. Additionally, there were no differences between urban and rural dwellers either for referral or utilization of feeding tube, noninvasive ventilation, riluzole, or communication devices. Contrary to the previous data showing a 27-month diagnostic delay in Saskatchewan, our study which included a larger provincial population found the mean diagnostic delay was 16.6 months. CONCLUSIONS: This study did not uncover differences in diagnostic delay or ALS care between urban and rural dwellers. Further study is required to determine reproducibility of results.

Patient perspectives on transitioning to amyotrophic lateral sclerosis multidisciplinary clinics.

PURPOSE: Multidisciplinary clinics (MDC) have become the standard of care for management of amyotrophic lateral sclerosis (ALS). No studies however, have captured patients' perspectives during a transition to ALS MDCs. Recently, an ALS MDC emerged from a single-physician clinic in Saskatoon, Canada, providing patients with a unique exposure to two different models of care. PATIENTS AND METHODS: Fifteen patients with ALS participated in semi-structured interviews that were digitally recorded and transcribed. Two independent researchers performed an inductive thematic analysis. Information was coded based on emerging and a priori themes. An iterative process followed involving discussion and reexamination of the themes until consensus was reached. RESULTS: All patients cited the convenience of integrated care as an advantage. Other advantages included clinical expertise and advocacy potential. Travel and reduced mobility were the most commonly discussed barriers/disadvantages of MDC attendance. The impact of geography and weather appeared to augment both the appreciation of an integrated approach and the impediment of travel, compared to the existing literature. The need for individualized care was demonstrated by the conflicting viewpoints obtained from participants. Most patients felt additional practitioners and supports for both patients and caregivers were required. CONCLUSION: ALS patients transitioned to MDCs reported many of the advantages and disadvantages reported elsewhere. A novel perspective of a MDC's advocacy potential was recognized, and the need for an innovative approach to meet demands for individualized care was highlighted.

Hospital utilization for patients with amyotrophic lateral sclerosis in saskatoon, Canada.

OBJECTIVE: This retrospective study reviewed hospital and intensive care unit (ICU) admissions for patients with amyotrophic lateral sclerosis (ALS) in Saskatoon, Canada, between 2005 and 2017. The purpose was to understand hospital utilization and admission patterns for patients with ALS in the absence of coordinated multidisciplinary care. METHODS: Hospital/ICU admissions were detected at two hospitals in Saskatoon using the International Classification of Diseases (ICD-10) coding for ALS. Patient demographic data, hospitalization and pre-hospitalization information were recorded, and descriptive statistics were generated. RESULTS: Of the 83 patients identified, 52% were male with a mean age of 66.8 years. Fifty-two percent were undiagnosed prior to hospitalization, with significantly longer ICU stays compared to those diagnosed prior to admission (49.4 ± 46.6 vs. 21.9 ± 32.0 days; p = 0.0003). Eighty-nine percent of all admissions (n = 118) were non-elective. Although respiratory dysfunction was the most common reason for admission (n = 41, 49%), and all ICU admissions were for respiratory dysfunction, only 2% were on non-invasive ventilation prior to ICU admission. All tracheostomies (n =10, 12%) were placed non-electively, and 50% were in previously undiagnosed patients. Thirty-four percent (n = 28) of patients died in hospital in an ICU (n = 8, 29%) and hospital wards (n = 20, 71%). CONCLUSION: ALS patients in Saskatoon had high non-elective admission rates, with over half undiagnosed prior to hospitalization, and high rates of emergent tracheostomy. This study highlights the need for early diagnosis and coordinated multidisciplinary care for improved outpatient management of ALS to reduce lengthy and complicated hospitalizations.

Prehospital Management of Acute Stroke in Rural versus Urban Responders.

OBJECTIVE: Stroke guideline compliance of rural Canadian prehospital emergency medical services (EMS) care in acute stroke is unknown. In this quality assurance study, we sought to compare rural and urban care by prehospital EMS evaluation/management indicators from patients assessed at an urban Canadian stroke center. MATERIALS AND METHODS: One hundred adult patients were randomly selected from the stroke registry. Patients were transported through Rural EMS bypass protocols or urban EMS protocols (both bypass and direct) to our stroke center between January and December 2013. Patients were excluded if they were first evaluated at any other health center. Prehospital care was assessed using ten indicators for EMS evaluation/management, as recommended by acute stroke guidelines. RESULTS: Compliance with acute stroke EMS evaluation/management indicators were statistically similar for both groups, except administrating a prehospital diagnostic tool (rural 31.8 vs. urban 70.3%; P = 0.002). Unlike urban EMS, rural EMS did not routinely document scene time. CONCLUSION: Rural EMS responders' compliance to prehospital stroke evaluation/management was similar to urban EMS responders. Growth areas for both groups may be with prehospital stroke diagnostic tool utilization, whereas rural EMS responders may also improve with scene time documentation.