Use of nasal pillows in amiotrophic lateral sclerosis (ALS) patients with high non invasive ventilation (NIV) dependence

2018 ◽  
Author(s):  
Luana Focaraccio ◽  
Giulia Rovere ◽  
Roberta Di Tria ◽  
Renza Ambrosanio ◽  
Elisa Clivati ◽  
...  
Keyword(s):  
Invasive Ventilation ◽  
Non Invasive ◽  
Non Invasive Ventilation ◽  
Als Patients ◽  
Lateral Sclerosis

Continuing Non-Invasive Ventilation During Amyotrophic Lateral Sclerosis-Related Hospice Care Is Medically, Administratively, and Financially Feasible

2020 ◽  
pp. 104990912098229
Author(s):  
Philip J. Choi ◽  
Michael Murn ◽  
Roberta Turner ◽  
Richard Bedlack
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Length Of Stay ◽  
Cost Analysis ◽  
Rating Scale ◽  
Academic Medical Center ◽  
Invasive Ventilation ◽  
Non Invasive ◽  
Non Invasive Ventilation ◽  
Als Patients ◽  
Lateral Sclerosis

Background: Amyotrophic Lateral Sclerosis (ALS) is a terminal neuromuscular disease with patients dying within 3-5 years of diagnosis. Most patients choose to forego invasive life sustaining measures. Timing of hospice referral can be challenging given the advancement of non-invasive ventilation (NIV) technology. Objective: To describe the characteristics of patients enrolled in hospice from an ALS clinic at 1 academic medical center and to perform a cost analysis for patients who remained on ventilator support. Methods: Retrospective cross-sectional study of patients enrolled in hospice over a 2-year period. Clinical characteristics included ALS Functional Rating Scale Revised (ALSFRS-R) score, Forced Vital Capacity (FVC), use of NIV and mechanical insufflation-exsufflation (MIE), riluzole use, and length of stay in hospice. A cost analysis was performed for patients enrolled in Duke Home Care and Hospice. Results: 85 of 104 patients who died were enrolled in hospice. Median days enrolled in hospice was 84. Patients who continued on NIV had similar hospice length of stay as those on no respiratory support (88 versus 80 days, p = 0.83). Bulbar patients had a trend toward shorter length of stay in hospice than limb onset patients (71 versus 101 days, p = 0.49). Cost analysis showed that hospice maintained a mean net operating revenue of $3234.50 per patient who continued on NIV. Conclusions: Hospice referrals for ALS patients on NIV can be challenging. This study shows that even with continued NIV use, most ALS patients die within the expected 6 months on home hospice, and care remains cost effective for hospice agencies.

Randomized cross-over trial of ventilator modes during non-invasive ventilation titration in amyotrophic lateral sclerosis

Respirology ◽  
2017 ◽  
Vol 22 (6) ◽  
pp. 1212-1218 ◽  
Author(s):  
Bart Vrijsen ◽  
Bertien Buyse ◽  
Catharina Belge ◽  
Goele Vanpee ◽  
Philip Van Damme ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Invasive Ventilation ◽  
Non Invasive ◽  
Non Invasive Ventilation ◽  
Lateral Sclerosis

scholarly journals Patterns of Non-Invasive Ventilation in Amyotrophic Lateral Sclerosis

2018 ◽  
Vol 45 (4) ◽  
pp. 445-450
Author(s):  
Nevena Markovic ◽  
Marcus Povitz ◽  
Joanne Smith ◽  
David Leasa ◽  
Christen Shoesmith ◽  
...  
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
Invasive Ventilation ◽  
Non Invasive ◽  
Non Invasive Ventilation ◽  
End Of Life Decision ◽  
Life Decision ◽  
Lateral Sclerosis ◽  
Over Time

AbstractBackground: Non-invasive ventilation (NIV) improves quality of life and survival in patients with amyotrophic lateral sclerosis (ALS) and respiratory symptoms. Little is known about the patterns of NIV use over time and the impact of NIV on end-of-life decision-making in ALS. Objective: This study assessed the pattern of NIV use over the course of the disease and the timing of end-of-life discussions in people living with ALS. Method: A retrospective single-center cohort study was performed at London Health Sciences Centre. Daily NIV duration of use was evaluated at 3-month intervals. The timing of diagnosis, NIV initiation, discussions relating to do-not-attempt-resuscitation (DNAR) and death were examined. Results: In total, 48 patients were included in the analysis. Duration of NIV use increased over time, and tolerance to NIV was observed to be better than expected in patients with bulbar-onset ALS. There was a high degree of variability in the timing of end-of-life discussions in patients with ALS (356±451 days from diagnosis). In this cohort, there was a strong association between the timing of discussions regarding code status and establishment of a DNAR order (r2=0.93). Conclusion: This retrospective cohort study suggests that the use of NIV in ALS increases over time and that there remains a great deal of variability in the timing of end-of-life discussions in people living with ALS. Future prospective studies exploring the use NIV over the disease trajectory and how NIV affects end-of-life decision-making in people with ALS are needed.

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