Status:

COMPLETED

Remote Pulmonary Function Testing and Nurse Coaching in ALS

Lead Sponsor:

Milton S. Hershey Medical Center

Collaborating Sponsors:

ALS Association

Conditions:

ALS

Eligibility:

All Genders

18+ years

Phase:

NA

Brief Summary

Comparison of respiratory outcomes in patients receiving telemedicine-guided remote pulmonary function testing (rPFT) with or without the additional support of nurse coaching. This is a randomized con...

Detailed Description

This is a two-arm, randomized study to determine 1) whether weekly monitoring of respiratory function can lead to timelier initiation of NIV and 2) whether structured nurse coaching leads to improved ...

Eligibility Criteria

Inclusion

  • Patients:
  • Possess a diagnosis of definite, probable, probable laboratory-supported, or possible ALS by revised El Escorial research criteria \[Brooks2000\].
  • Be 18 years of age or older.
  • Have a caregiver available to participate in the study
  • Symptom onset within the last three years.
  • Have a computer and home internet service sufficient for engaging in telemedicine sessions.
  • Have a second device capable of downloading the spirometer application from an app store (Android- or iOS-based smartphone or tablet).
  • Caregivers:
  • Be 18 years of age or older, of either gender.
  • Be able and willing to provide informed consent.

Exclusion

  • Patients:
  • Use of NIV or diaphragm pacer at time of obtaining informed consent.
  • FVC ≤50% predicted or MIP \> -60 cm of water.
  • ALS Functional Rating Scale (ALSFRS-R) \[Cedarbaum1999\] score on day of screening of ≥2 on items for speech, swallowing, and salivation. These items are indicators of bulbar dysfunction, which limits the reliability of PFT administration.
  • Cognitive impairment, as judged by the ALS clinic neurologist, that prevents participation in the study.
  • Caregivers: None

Key Trial Info

Start Date :

July 1 2020

Trial Type :

INTERVENTIONAL

Allocation :

ACTUAL

End Date :

June 30 2024

Estimated Enrollment :

34 Patients enrolled

Trial Details

Trial ID

NCT04490148

Start Date

July 1 2020

End Date

June 30 2024

Last Update

July 24 2024

Active Locations (1)

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1

Hershey Medical Center ALS Clinic

Hershey, Pennsylvania, United States, 17033