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Diagnostic Journeys of Patients
Evaluated for Lyme Disease and
Given Extended Antibiotic Therapy
Yi-Ju Tseng, PhD
Computat...
Research Target
2
Nelson CA. et al (2015). Incidence of Clinician-Diagnosed Lyme Disease,
United States, 2005–2010. Emergi...
Research Target
2
Nelson CA. et al (2015). Incidence of Clinician-Diagnosed Lyme Disease,
United States, 2005–2010. Emergi...
3
Standard treatment: 

2-4w antibiotic

↓

Persistent Symptom

↓

Post-treatment LD Syndrome
10~20%
4
Standard treatment: 

2-4w antibiotic

↓

Persistent Symptom

↓

Post-treatment LD Syndrome
10~20%
4
Narrative Matte
DOI: 10.1377/HLTHAFF.2011.0792
Chronic Lyme Disease:
It’s Time To Solve The
Medical Mystery Inside
An Enig...
What Happens before Lyme?
• Standard vs. extended courses of antibiotics for Lyme
• Hypothesis - 

Patients receiving exte...
LD Case Definition
7
Claims data

2011-2012
LD Case Definition
7
Lyme 1
<30d
Lyme 2
ICD-9: 088.81 Lyme Disease
Diagnosis
Claims data

2011-2012
LD Case Definition
7
Lyme 1
<30d
Lyme 2
ICD-9: 088.81 Lyme Disease
Diagnosis
30d 30d
1 Drug Era
NDC, from IDSA, 9 antibioti...
LD Case Definition
7
Lyme 1
<30d
Lyme 2
ICD-9: 088.81 Lyme Disease
Diagnosis
30d 30d
1 Drug Era
NDC, from IDSA, 9 antibioti...
LD Case Definition
8
Lyme 1
<30d
Lyme 2
ICD-9: 088.81 Lyme Disease
Diagnosis
30d 30d
1 Drug Era
NDC, from IDSA, 9 antibioti...
The Diagnosis Journey
Before LD - 1/2
Claims data

2011-2012
9
The Diagnosis Journey
Before LD - 1/2
Claims data

2011-2012
First Lyme

Diagnosis
Continuously enrolled for ≥180d
9
The Diagnosis Journey
Before LD - 1/2
Claims data

2011-2012
First Lyme

Diagnosis
Continuously enrolled for ≥180d
Days be...
The Diagnosis Journey
Before LD - 1/2
Claims data

2011-2012
First Lyme

Diagnosis
Continuously enrolled for ≥180d
Days be...
The Diagnosis Journey
Before LD - 1/2
Claims data

2011-2012
First Lyme

Diagnosis
Continuously enrolled for ≥180d
151-180...
The Diagnosis Journey
Before LD - 1/2
Claims data

2011-2012
First Lyme

Diagnosis
Continuously enrolled for ≥180d
151-180...
The Diagnosis Journey
Before LD - 2/2
10
151-18
0
121-15
-
91-120 61-90 31-60 1-30
151-18
0
121-15
-
91-120 61-90 31-60 1-...
The Diagnosis Journey
Before LD - 2/2
10
151-18
0
121-15
-
91-120 61-90 31-60 1-30
151-18
0
121-15
-
91-120 61-90 31-60 1-...
The Diagnosis Journey
Before LD - 2/2
10
151-18
0
121-15
-
91-120 61-90 31-60 1-30
151-18
0
121-15
-
91-120 61-90 31-60 1-...
Demographic Characteristics and
Antibiotic Therapy of PLDSA & PLDEA
N (%)
Characteristic PLDEA PLDSA P value
Patients 600 ...
Diagnostic Journeys of
PLDEA
8.5
7.8
9.7
9
11
9
5.2
9
5.5
9.2
6.7
14
10.2
10.2
13
10.8
13.8
20.8
18.8
13.5
10.3
23.7
9.5
S...
Diagnostic Journeys of
PLDEA
8.5
7.8
9.7
9
11
9
5.2
9
5.5
9.2
6.7
14
10.2
10.2
13
10.8
13.8
20.8
18.8
13.5
10.3
23.7
9.5
S...
Diagnostic Journeys of
PLDEA
8.5
7.8
9.7
9
11
9
5.2
9
5.5
9.2
6.7
14
10.2
10.2
13
10.8
13.8
20.8
18.8
13.5
10.3
23.7
9.5
S...
Diagnostic Journeys of
PLDEA
8.5
7.8
9.7
9
11
9
5.2
9
5.5
9.2
6.7
14
10.2
10.2
13
10.8
13.8
20.8
18.8
13.5
10.3
23.7
9.5
S...
Diagnostic Journeys of
PLDEA
8.5
7.8
9.7
9
11
9
5.2
9
5.5
9.2
6.7
14
10.2
10.2
13
10.8
13.8
20.8
18.8
13.5
10.3
23.7
9.5
S...
Diagnostic Journeys of
PLDEA
8.5
7.8
9.7
9
11
9
5.2
9
5.5
9.2
6.7
14
10.2
10.2
13
10.8
13.8
20.8
18.8
13.5
10.3
23.7
9.5
S...
Diagnostic Journeys of
PLDEA
8.5
7.8
9.7
9
11
9
5.2
9
5.5
9.2
6.7
14
10.2
10.2
13
10.8
13.8
20.8
18.8
13.5
10.3
23.7
9.5
S...
Summary
• Among PLDEA, 15.8% of them were symptomatic
and seeking care for several months prior to their
first LD diagnosis...
@YiJuTseng http://yijutseng.github.io/
yjtseng@mail.cgu.edu.tw
YJ Tseng, et al. Claims-based Diagnostic Patterns of Patien...
Diagnostic Journeys of Patients Evaluated for Lyme Disease and Given Extended Antibiotic Therapy
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Diagnostic Journeys of Patients Evaluated for Lyme Disease and Given Extended Antibiotic Therapy

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AMIA 2016
S59: Podium Presentations
Using Data Science to address Clinical Problems
Full-length paper:
YJ Tseng, et al. Claims-based Diagnostic Patterns of Patients Evaluated for Lyme Disease and Given Extended Antibiotic Therapy. Vector-Borne and Zoonotic Diseases. 2016 (In Press)

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Diagnostic Journeys of Patients Evaluated for Lyme Disease and Given Extended Antibiotic Therapy

  1. 1. Diagnostic Journeys of Patients Evaluated for Lyme Disease and Given Extended Antibiotic Therapy Yi-Ju Tseng, PhD Computational Health Informatics Program (CHIP) Boston Children’s Hospital, MA, USA
 Dept. of Information Management, Chang Gung University, Taiwan Co-authors: 
 Alfred DeMaria Jr, Donald Goldmann, Kenneth Mandl* AMIA 2016 S59: Podium Presentations Using Data Science to address Clinical Problems
  2. 2. Research Target 2 Nelson CA. et al (2015). Incidence of Clinician-Diagnosed Lyme Disease, United States, 2005–2010. Emerging Infectious Diseases, 21(9), 1625–1631
  3. 3. Research Target 2 Nelson CA. et al (2015). Incidence of Clinician-Diagnosed Lyme Disease, United States, 2005–2010. Emerging Infectious Diseases, 21(9), 1625–1631 Only 25,000 reported cases in 2014
  4. 4. 3
  5. 5. Standard treatment: 
 2-4w antibiotic
 ↓
 Persistent Symptom
 ↓
 Post-treatment LD Syndrome 10~20% 4
  6. 6. Standard treatment: 
 2-4w antibiotic
 ↓
 Persistent Symptom
 ↓
 Post-treatment LD Syndrome 10~20% 4
  7. 7. Narrative Matte DOI: 10.1377/HLTHAFF.2011.0792 Chronic Lyme Disease: It’s Time To Solve The Medical Mystery Inside An Enigma Scientists and doctors disagree about whether there is such a condition as “chronic” Lyme disease or “post–Lyme disease syndrome.” Americans need the National Institutes of Health and basic science research to help determine the answer. BY LAURIE MCCLELLAN acc dis A Pat gra wa bac for pac pli har ma isti his car I mi he wa nap got the kep un G ho tim an six aro to fre wa wa T lat ing Nu it h wh Pat Jul Standard treatment: 
 2-4w antibiotic
 ↓
 Persistent Symptom
 ↓
 Post-treatment LD Syndrome 10~20% 4
  8. 8. What Happens before Lyme? • Standard vs. extended courses of antibiotics for Lyme • Hypothesis - 
 Patients receiving extended treatment for Lyme: • Symptomatic • Seeking diagnosis for symptoms
 Prior to the first Lyme diagnosis…. • To know the diagnostic journey towards a diagnosis of Lyme disease 6
  9. 9. LD Case Definition 7 Claims data
 2011-2012
  10. 10. LD Case Definition 7 Lyme 1 <30d Lyme 2 ICD-9: 088.81 Lyme Disease Diagnosis Claims data
 2011-2012
  11. 11. LD Case Definition 7 Lyme 1 <30d Lyme 2 ICD-9: 088.81 Lyme Disease Diagnosis 30d 30d 1 Drug Era NDC, from IDSA, 9 antibiotics,
 LD recorded date ± 30 d + Treatment Claims data
 2011-2012
  12. 12. LD Case Definition 7 Lyme 1 <30d Lyme 2 ICD-9: 088.81 Lyme Disease Diagnosis 30d 30d 1 Drug Era NDC, from IDSA, 9 antibiotics,
 LD recorded date ± 30 d + Treatment CPT codes, 
 LD recorded date ± 90 d + Lab orders Claims data
 2011-2012
  13. 13. LD Case Definition 8 Lyme 1 <30d Lyme 2 ICD-9: 088.81 Lyme Disease Diagnosis 30d 30d 1 Drug Era NDC, from IDSA, 9 antibiotics,
 LD recorded date ± 30 d + Treatment CPT codes, 
 LD recorded date ± 90 d + Lab orders Claims data
 2011-2012 Patients diagnosed with LD and given extended antibiotic therapy 
 (PLDEA, Abx ≥5w) Patients diagnosed with LD and given standard antibiotic therapy 
 (PLDSA, Abx ≥2w and <5w)
  14. 14. The Diagnosis Journey Before LD - 1/2 Claims data
 2011-2012 9
  15. 15. The Diagnosis Journey Before LD - 1/2 Claims data
 2011-2012 First Lyme
 Diagnosis Continuously enrolled for ≥180d 9
  16. 16. The Diagnosis Journey Before LD - 1/2 Claims data
 2011-2012 First Lyme
 Diagnosis Continuously enrolled for ≥180d Days before 
 LD diagnosis 9 151-180 121-150 91-120 61-90 31-60 1-30
  17. 17. The Diagnosis Journey Before LD - 1/2 Claims data
 2011-2012 First Lyme
 Diagnosis Continuously enrolled for ≥180d Days before 
 LD diagnosis Diagnosis categories 
 (grouped by CCS) Malaise Joint pain … … 9 151-180 121-150 91-120 61-90 31-60 1-30
  18. 18. The Diagnosis Journey Before LD - 1/2 Claims data
 2011-2012 First Lyme
 Diagnosis Continuously enrolled for ≥180d 151-180 121-150 91-120 61-90 31-60 1-30 1 0 1 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 1 1 0 0 1 0 Days before 
 LD diagnosis Diagnosis categories 
 (grouped by CCS) Malaise Joint pain … … 1: diagnosed with at least 1 ICD-9 code in the group 9
  19. 19. The Diagnosis Journey Before LD - 1/2 Claims data
 2011-2012 First Lyme
 Diagnosis Continuously enrolled for ≥180d 151-180 121-15- 91-120 61-90 31-60 1-30 151-180 121-15- 91-120 61-90 31-60 1-30 151-180 121-150 91-120 61-90 31-60 1-30 1 0 1 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 1 1 0 0 1 0 Every patients with LD Days before 
 LD diagnosis Diagnosis categories 
 (grouped by CCS) Malaise Joint pain … … 1: diagnosed with at least 1 ICD-9 code in the group 9
  20. 20. The Diagnosis Journey Before LD - 2/2 10 151-18 0 121-15 - 91-120 61-90 31-60 1-30 151-18 0 121-15 - 91-120 61-90 31-60 1-30 151-180 121-150 91-120 61-90 31-60 1-30 1 0 1 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 1 1 0 0 1 0 Days before 
 LD diagnosis Every patients with PLDEA Malaise Joint pain … … Patients diagnosed with LD and 
 given extended antibiotic therapy 
 (PLDEA, Abx ≥5w)
  21. 21. The Diagnosis Journey Before LD - 2/2 10 151-18 0 121-15 - 91-120 61-90 31-60 1-30 151-18 0 121-15 - 91-120 61-90 31-60 1-30 151-180 121-150 91-120 61-90 31-60 1-30 1 0 1 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 1 1 0 0 1 0 Days before 
 LD diagnosis Every patients with PLDEA Malaise Joint pain … … 151-18 0 121-15 - 91-120 61-90 31-60 1-30 151-18 0 121-15 - 91-120 61-90 31-60 1-30 151-180 121-150 91-120 61-90 31-60 1-30 1 0 1 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 1 1 0 0 1 0 Days before 
 LD diagnosis Every patients with PLDSA Malaise Joint pain … … Patients diagnosed with LD and 
 given extended antibiotic therapy 
 (PLDEA, Abx ≥5w) Patients diagnosed with LD and
 given standard antibiotic therapy 
 (PLDSA, Abx ≥2w and <5w) compared with
  22. 22. The Diagnosis Journey Before LD - 2/2 10 151-18 0 121-15 - 91-120 61-90 31-60 1-30 151-18 0 121-15 - 91-120 61-90 31-60 1-30 151-180 121-150 91-120 61-90 31-60 1-30 1 0 1 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 1 1 0 0 1 0 Days before 
 LD diagnosis Every patients with PLDEA Malaise Joint pain … … 151-18 0 121-15 - 91-120 61-90 31-60 1-30 151-18 0 121-15 - 91-120 61-90 31-60 1-30 151-180 121-150 91-120 61-90 31-60 1-30 1 0 1 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 1 1 0 0 1 0 Days before 
 LD diagnosis Every patients with PLDSA Malaise Joint pain … … Patients diagnosed with LD and 
 given extended antibiotic therapy 
 (PLDEA, Abx ≥5w) Patients diagnosed with LD and
 given standard antibiotic therapy 
 (PLDSA, Abx ≥2w and <5w) compared with Logistic Regression ORs
  23. 23. Demographic Characteristics and Antibiotic Therapy of PLDSA & PLDEA N (%) Characteristic PLDEA PLDSA P value Patients 600 3,207 Female 367 (61.2) 1,556 (48.5) <0.001 Age (years) 42.5 (17.9) 40.7 (19.9) <0.05 Diagnosed outside of summer months 302 (50.3) 1,284 (40.0) <0.001 Most common antibiotic Doxycycline 367 (61.2) Doxycycline 
 2497 (77.9) Exposure days of antibiotic Mean (SD) 73.9 (38.3) 23.0 (5.5) Range (Min–Max) 35-315 14-34 Number of refills 2.7 (1.2) 1.2 (0.4) <0.001 11
  24. 24. Diagnostic Journeys of PLDEA 8.5 7.8 9.7 9 11 9 5.2 9 5.5 9.2 6.7 14 10.2 10.2 13 10.8 13.8 20.8 18.8 13.5 10.3 23.7 9.5 Spondylosis, intervertebral disc disorders, and other back problems Other connective tissue disease Other nervous system disorders Malaise and fatigue Non−traumatic joint disorders Mental Illness Headache, including migraine Diseases of the skin and subcutaneous tissue 151−180 121−150 91−120 61−90 31−60 1−30 Before Lyme disease diagnosis, days Diagnosticlabels 1.0 1.5 2.0 Adjusted OR 12
  25. 25. Diagnostic Journeys of PLDEA 8.5 7.8 9.7 9 11 9 5.2 9 5.5 9.2 6.7 14 10.2 10.2 13 10.8 13.8 20.8 18.8 13.5 10.3 23.7 9.5 Spondylosis, intervertebral disc disorders, and other back problems Other connective tissue disease Other nervous system disorders Malaise and fatigue Non−traumatic joint disorders Mental Illness Headache, including migraine Diseases of the skin and subcutaneous tissue 151−180 121−150 91−120 61−90 31−60 1−30 Before Lyme disease diagnosis, days Diagnosticlabels 1.0 1.5 2.0 Adjusted OR 12 Odds of mental illness in 
 PLDEA compared with PLDSA
  26. 26. Diagnostic Journeys of PLDEA 8.5 7.8 9.7 9 11 9 5.2 9 5.5 9.2 6.7 14 10.2 10.2 13 10.8 13.8 20.8 18.8 13.5 10.3 23.7 9.5 Spondylosis, intervertebral disc disorders, and other back problems Other connective tissue disease Other nervous system disorders Malaise and fatigue Non−traumatic joint disorders Mental Illness Headache, including migraine Diseases of the skin and subcutaneous tissue 151−180 121−150 91−120 61−90 31−60 1−30 Before Lyme disease diagnosis, days Diagnosticlabels 1.0 1.5 2.0 Adjusted OR 12 % of PLDEA patients with mental illness
  27. 27. Diagnostic Journeys of PLDEA 8.5 7.8 9.7 9 11 9 5.2 9 5.5 9.2 6.7 14 10.2 10.2 13 10.8 13.8 20.8 18.8 13.5 10.3 23.7 9.5 Spondylosis, intervertebral disc disorders, and other back problems Other connective tissue disease Other nervous system disorders Malaise and fatigue Non−traumatic joint disorders Mental Illness Headache, including migraine Diseases of the skin and subcutaneous tissue 151−180 121−150 91−120 61−90 31−60 1−30 Before Lyme disease diagnosis, days Diagnosticlabels 1.0 1.5 2.0 Adjusted OR 13
  28. 28. Diagnostic Journeys of PLDEA 8.5 7.8 9.7 9 11 9 5.2 9 5.5 9.2 6.7 14 10.2 10.2 13 10.8 13.8 20.8 18.8 13.5 10.3 23.7 9.5 Spondylosis, intervertebral disc disorders, and other back problems Other connective tissue disease Other nervous system disorders Malaise and fatigue Non−traumatic joint disorders Mental Illness Headache, including migraine Diseases of the skin and subcutaneous tissue 151−180 121−150 91−120 61−90 31−60 1−30 Before Lyme disease diagnosis, days Diagnosticlabels 1.0 1.5 2.0 Adjusted OR 13
  29. 29. Diagnostic Journeys of PLDEA 8.5 7.8 9.7 9 11 9 5.2 9 5.5 9.2 6.7 14 10.2 10.2 13 10.8 13.8 20.8 18.8 13.5 10.3 23.7 9.5 Spondylosis, intervertebral disc disorders, and other back problems Other connective tissue disease Other nervous system disorders Malaise and fatigue Non−traumatic joint disorders Mental Illness Headache, including migraine Diseases of the skin and subcutaneous tissue 151−180 121−150 91−120 61−90 31−60 1−30 Before Lyme disease diagnosis, days Diagnosticlabels 1.0 1.5 2.0 Adjusted OR 13
  30. 30. Diagnostic Journeys of PLDEA 8.5 7.8 9.7 9 11 9 5.2 9 5.5 9.2 6.7 14 10.2 10.2 13 10.8 13.8 20.8 18.8 13.5 10.3 23.7 9.5 Spondylosis, intervertebral disc disorders, and other back problems Other connective tissue disease Other nervous system disorders Malaise and fatigue Non−traumatic joint disorders Mental Illness Headache, including migraine Diseases of the skin and subcutaneous tissue 151−180 121−150 91−120 61−90 31−60 1−30 Before Lyme disease diagnosis, days Diagnosticlabels 1.0 1.5 2.0 Adjusted OR 14
  31. 31. Summary • Among PLDEA, 15.8% of them were symptomatic and seeking care for several months prior to their first LD diagnosis. • These findings could be used to prospectively identify and target patients likely to receive a LD diagnosis several months hence. 15
  32. 32. @YiJuTseng http://yijutseng.github.io/ yjtseng@mail.cgu.edu.tw YJ Tseng, et al. Claims-based Diagnostic Patterns of Patients Evaluated for Lyme Disease and Given Extended Antibiotic Therapy. Vector-Borne and Zoonotic Diseases. 2016 (In Press)

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