The Clinical Application of Tele-health in the care of people with ALS

1. Stephen M. Selkirk, MD,PhD
Neurologist, Cleveland VA Medical Center, SCI Division.
Director, Cleveland ALS Center of Excellence
Assistant Professor, Department of Neurology,
Case Western Reserve School of Medicine.
Francis McClellan, RN, MSN
Cleveland VA Medical Center, SCI Division.
SCI Rehab Program Coordinator
Monique Washington, RN, MS, APHN-BC
Cleveland VA Medical Center, SCI Division.
SCI Management of Information & Outcomes Coordinator

2. A study released by the Institute of Medicine (IOM) on November 10,
2006, Amyotrophic Lateral Sclerosis in Veterans: Review of the Scientific
Literature, concluded that "there is limited and suggestive evidence of
an association between military service and later development of ALS."
Based upon this IOM study, and because ALS is a disease that progresses
rapidly once diagnosed, VA designated ALS as a presumptively-compensable
illness for all Veterans with 90 days of continuously active
service in the military. 38 CFR 3.318.
The annual incidence of ALS among adults over 18 years is between 2.5
to 3.0 per 100,000. The IOM report added that the likelihood of a person
dying of ALS is increased 1.5 fold if that individual is a Veteran. The IOM
report did not report on factors that underlie the increased incidence of
ALS. Specifically, locality of service and history of combat exposure did
not show an influence on the incidence of ALS among Veterans.

3. 2000
1500
1000
500
0
1985 1995 2006 2008
Number of Patients
Fiscal Year
The IOM study noted a 1.5 fold increased ALS incidence in Veterans suggesting an annual
incidence rate of 4.5 per 100,000 Veterans, yielding an estimated annual incidence of 1,055
Veterans with new onset ALS and a possible Veteran prevalence of 4,220 given current life
expectancy exceeding 3 years.

6. ALS Association Certified Treatment Center of Excellence.

7. Referral process
-Majority of patients have been diagnosed
-CCF
-VA Neurology
-ALSA
-Spoke sites (Erie, Columbus, Dayton)

8. Patients are seen either in person or via
telemedicine every three months
Interdisciplinary meeting (IDT) occurs prior to the
actual clinic visit. Multidisciplinary team.
Phone call to patient by nurse, prior to IDT
meeting.
Planned inpatient admissions for PEG/sleep studies
and respite care.
Unplanned admissions to SCI service

9. Comprehensive management at an ALS center improves
outcome measures in patients.
-Improved survival
-Increased utilization of Riluzole
-Increased PEG tube placement
-Increased utilization of NIPPV
-Fewer hospital admissions
-Higher quality of life measure.
Chio et al. 2006. Positive effects of tertiary centers for amyotrophic lateral sclerosis on Outcome and use of hospital facilities.
JNNP 2006; 77: 948-950.
Van den Berg et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 2005; 65: 1264-1267.

10. AAN Practice Parameters
Quality of Life
Joint decision making
Every patient in the VA system should have access to
ALS Center care.

11. Use of Tele-health- CVT
Provide specialty consultation closer to home
with the veteran’s primary care team
Use of MOVI
Follow patient at home
Secure “Skype like” system
Allows us to follow when coming to hospital for
tests are no longer needed
Keeps us in touch with family and patient
Reduces travel costs

12. Retrospective analysis of a variety of data including
quality of life, care giver burden, functional rating
scale, access to care, survival, weight loss.
Quality of life- McGill QOL Scale
Care Giver Burden- Zarit’s Questionnaire
ALSFR- functional rating scale.

13. Process Measures- “…assess the activities carried out
by health care professionals to deliver services…often
guided by evidence-based clinical guidelines”
Outcome Measures- “Measuring health outcomes is
central to assessing the quality of care…..”

14. Process Measures
Riluzole
NIPPV
Dietician
Weight Monitoring
Nutrition Supplements
Home Health Care
Hospice Referral
Communication Device
Outcome Measures
PEG Placement
Quality of Life (McGill’s
Quality of Life)
Caregiver Burden (Zarit’s
Short Form Survey)
ALS Functional Rating Scale-
Revised
Survival
Weight
Patient Satisfaction

15. *Baseline Respiratory Status= (ALSFRS Orthopnea score + ALSFRS Dyspnea score)/2 at baseline, range 0-4

16. n=48 n=23 n=25

17. n=91

18. n=48

19. Total Clinic Telemedicine p-value
Distance from SCI Center (miles) 62.3 37.8 85.0 0.002
Baseline ALSFRS (mean ± SD) 34.02 ± 9.21 33.65 ± 10.59 35.12 ± 7.48 0.635

20. p=NS
n=91

22. p=NS

23. p=NS

24. p=NS

25. p=NS

26. p=NS

27. p=NS

28. p=NS

29. p=NS

30. p=NS

32. zarit
Setting % Mean Δ SD p-value
Clinic 1% 0.09
0.54
Telemedicine 2% 0.08
Total 2% 0.19
SIGNIFICANT AT 0.04- TELEHEALTH HAS LESS CAREGIVER STRAIN
% Mean Δ=(Last/Current weight-Baseline weight)/ Baseline weight

33. Event:
Malnutrition-Defined as BMI <18.5 kg/m2
Eligibility for analysis:
• ≥ 2 BMI assessments, including baseline
assessment
• BMI ≥ 18.5 kg/m2 at baseline
• Followed for at least one year
Results:
• Only one event between the two groups,
one patient in the group receiving clinic
visits. The incidence of malnutrition was
nearly 0 in this cohort.
• The Log-Rank Test for these two survival
curves was non-significant (p=.309)
indicating that there is no difference in
the occurrence of malnutrition between
the two groups.
• There was no significant difference in the
mean or the median BMI between the
two groups.

34. Setting % Mean Δ SD p-value
Clinic -0.22%
.28
0.795
Telemedicine -0.24% .26
Total -0.21% .2265
% Mean Δ=(Last/Curren ALSFRS-Baseline ALSFRS)/ Baseline ALSFRS

35. Event:
30% Decline in Baseline ALSFRS Score
Eligibility for analysis:
• ≥ 2 ALSFRS, including baseline assessment
• Followed at least one year
Results:
• The results suggest that there is a positive
trend for patients receiving Telemedicine-it
appears it takes longer for their ALSFRS
to decline by at least 30%.
• The Log-Rank Test was non-significant
(p=.309) indicating that there is no
difference between the two survival
curves.
• Again, there was no significant difference
in the mean ALSFRS scores at baseline
between the two groups.

36. 22-item questionnaire
Assess level of burden experienced by the principal caregivers; health,
psychological well-being, finances, social life and the relationship between the
caregiver and the impaired person.
Used validated 4-item screening
5-point Likert scale, higher scores reflect higher caregiver
burden

37. Valid
Widely used in neuromuscular and neurological
disorders
ALS population
Reliability
Cronbach’s  = > 0.80
Administration
interviewer-administered, self-administered

38. zarit

39. Measure QOL with life-threatening illnesses
16 items and a single-item global scale
Valid (Initially cancer patients), Reliable
interviewer-administered, self-administered
Total score and 4 domains of QOL:
physical well being/symptoms
existential well being (assign meaning to life)
psychological symptoms
support

41. Setting Mean 95% CI
Clinic (n= 41)
49.8 months 35-62 months
Telemedicine(n= 48) 54.2 months
NON-SIGNIFICANT GROUP DIFFERENCE
43-65 months

42. Event:
Death
Eligibility for analysis:
• Alive at Time 1
• Followed for at least one year
Results:
• The results suggest that the
probability of survival may be higher
in patients receiving Telemedicine.
• The Log-Rank Test was non-significant
(p=.297), indicating no
difference.
• The median survival time for care in
the clinic setting is 33.1 months.
• Telemedicine could not be calculated
because 50% have not died.

43. There was no significant difference between groups
for delivery of services to patients.
There was no significant difference between groups
for outcome measures including:
Survival
Quality of life
Weight loss
*** Caregiver burden was less in telemedicine group.
This suggests that telemedicine can be utilized to provide all ALS
patients access to ALS Center Care

44. Francis McClellan, RN, MSN
Cleveland VA Medical Center, SCI
SCI Rehab Program Coordinator
Monique Washington, RN,
MS, APHN-BC
Cleveland VA Medical Center, SCI.
SCI Management of Information &
Outcomes Coordinator
Robert Ruff, MD,PhD
Former Chief of Neurology, VA.
Neurology Chair, Cleveland VA
Richard Strozewski
ALS Association