Özden O Dalgıç1,2, F Safa Erenay3, Kalyan S Pasupathy4,5, Osman Y Özaltın6, Brian A Crum7, Mustafa Y Sir8,9,10. 1. Harvard Medical School, Boston, 25 Shattuck St, Boston, MA, 02115, USA. 2. Institute for Technology Assessment, Massachusetts General Hospital, 101 Merrimac Street, Boston, MA, 02114, USA. 3. Department of Managements Sciences, University of Waterloo, 200 University Ave., Waterloo, ON, N2L3G1, Canada. 4. Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. 5. Mayo Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. 6. Edward P. Fitts Department of Industrial and Systems Engineering, North Carolina State University, 400 Daniels Hall, Raleigh, NC, 27695, USA. 7. Department of Neurology, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. 8. Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. sir.mustafa@mayo.edu. 9. Mayo Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. sir.mustafa@mayo.edu. 10. Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, 200 First Street SW, Rochester, MN, 55905, USA. sir.mustafa@mayo.edu.
Abstract
OBJECTIVE: To capture ALS progression in arm, leg, speech, swallowing, and breathing segments using a disease-specific staging system, namely tollgate-based ALS staging system (TASS), where tollgates refer to a set of critical clinical events including having slight weakness in arms, needing a wheelchair, needing a feeding tube, etc. METHODS: We compiled a longitudinal dataset from medical records including free-text clinical notes of 514 ALS patients from Mayo Clinic, Rochester-MN. We derived tollgate-based progression pathways of patients up to a 1-year period starting from the first clinic visit. We conducted Kaplan-Meier analyses to estimate the probability of passing each tollgate over time for each functional segment. RESULTS: At their first clinic visit, 93%, 77%, and 60% of patients displayed some level of limb, bulbar, and breathing weakness, respectively. The proportion of patients at milder tollgate levels (tollgate level < 2) was smaller for arm and leg segments (38% and 46%, respectively) compared to others (> 65%). Patients showed non-uniform TASS pathways, i.e., the likelihood of passing a tollgate differed based on the affected segments at the initial visit. For instance, stratified by impaired segments at the initial visit, patients with limb and breathing impairment were more likely (62%) to use bi-level positive airway pressure device in a year compared to those with bulbar and breathing impairment (26%). CONCLUSION: Using TASS, clinicians can inform ALS patients about their individualized likelihood of having critical disabilities and assistive-device needs (e.g., being dependent on wheelchair/ventilation, needing walker/wheelchair or communication devices), and help them better prepare for future.
OBJECTIVE: To capture ALS progression in arm, leg, speech, swallowing, and breathing segments using a disease-specific staging system, namely tollgate-based ALS staging system (TASS), where tollgates refer to a set of critical clinical events including having slight weakness in arms, needing a wheelchair, needing a feeding tube, etc. METHODS: We compiled a longitudinal dataset from medical records including free-text clinical notes of 514 ALSpatients from Mayo Clinic, Rochester-MN. We derived tollgate-based progression pathways of patients up to a 1-year period starting from the first clinic visit. We conducted Kaplan-Meier analyses to estimate the probability of passing each tollgate over time for each functional segment. RESULTS: At their first clinic visit, 93%, 77%, and 60% of patients displayed some level of limb, bulbar, and breathing weakness, respectively. The proportion of patients at milder tollgate levels (tollgate level < 2) was smaller for arm and leg segments (38% and 46%, respectively) compared to others (> 65%). Patients showed non-uniform TASS pathways, i.e., the likelihood of passing a tollgate differed based on the affected segments at the initial visit. For instance, stratified by impaired segments at the initial visit, patients with limb and breathing impairment were more likely (62%) to use bi-level positive airway pressure device in a year compared to those with bulbar and breathing impairment (26%). CONCLUSION: Using TASS, clinicians can inform ALSpatients about their individualized likelihood of having critical disabilities and assistive-device needs (e.g., being dependent on wheelchair/ventilation, needing walker/wheelchair or communication devices), and help them better prepare for future.
Entities:
Keywords:
ALS progression; Kaplan–Meier analysis; Phenotypes; Tollgate-based staging system
Authors: M Muddasir Qureshi; Douglas Hayden; Leo Urbinelli; Kimberly Ferrante; Kristyn Newhall; Daniela Myers; Sarah Hilgenberg; Ryan Smart; Robert H Brown; Merit E Cudkowicz Journal: Amyotroph Lateral Scler Date: 2006-09
Authors: F Kimura; C Fujimura; S Ishida; H Nakajima; D Furutama; H Uehara; K Shinoda; M Sugino; T Hanafusa Journal: Neurology Date: 2006-01-24 Impact factor: 9.910