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Abstract

Objective:

Administrative health data are frequently used for large population-based studies. However, the validity of these data for identifying neurologic conditions is uncertain.

Methods:

This article systematically reviews the literature to assess the validity of administrative data for identifying patients with neurologic conditions. Two reviewers independently assessed for eligibility all abstracts and full-text articles identified through a systematic search of Medline and Embase. Study data were abstracted on a standardized abstraction form to identify ICD code–based case definitions and corresponding sensitivity, specificity, positive predictive values (PPVs), and negative predictive values (NPVs).

Results:

Thirty full-text articles met the eligibility criteria. These included 8 studies for Alzheimer disease/dementia (sensitivity: 8–86.5, specificity: 56.3–100, PPV: 60–97.9, NPV: 68.0–98.9), 2 for brain tumor (sensitivity: 54.0–100, specificity: 97.0–99.0, PPV: 91.0–98.0), 4 for epilepsy (sensitivity: 98.8, specificity: 69.6, PPV: 62.0–100, NPV: 89.5–99.1), 4 for motor neuron disease (sensitivity: 78.9–93.0, specificity: 99.0–99.9, PPV: 38.0–90.0, NPV: 99), 2 for multiple sclerosis (sensitivity: 85–92.4, specificity: 55.9–92.6, PPV: 74.5–92.7, NPV: 70.8–91.9), 4 for Parkinson disease/parkinsonism (sensitivity: 18.7–100, specificity: 0–99.9, PPV: 38.6–81.0, NPV: 46.0), 3 for spinal cord injury (sensitivity: 0.9–90.6, specificity: 31.9–100, PPV: 27.3–100), and 3 for traumatic brain injury (sensitivity: 45.9–78.0 specificity: 97.8, PPV: 23.7–98.0, NPV: 99.2). No studies met eligibility criteria for cerebral palsy, dystonia, Huntington disease, hydrocephalus, muscular dystrophy, spina bifida, or Tourette syndrome.

Conclusions:

To ensure the accurate interpretation of population-based studies with use of administrative health data, the accuracy of case definitions for neurologic conditions needs to be taken into consideration.

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Supplementary Material

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Information & Authors

Information

Published In

Neurology®
Volume 79Number 10September 4, 2012
Pages: 1049-1055
PubMed: 22914826

Publication History

Received: January 23, 2012
Accepted: April 19, 2012
Published online: August 22, 2012
Published in print: September 4, 2012

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Disclosure

C. St. Germaine-Smith reports no disclosures. A. Metcalfe holds a CIHR doctoral award in Genetics (Ethics, Law and Society) and a studentship award from the CIHR Strategic Training program in Genetics, Child Development, and Health. T. Pringsheim has received travel funding from Teva Neuroscience Canada and speaker honoraria from Shire Canada. She currently receives research support from the Canadian Institute of Health Research, the Public Health Agency of Canada, and the Tourette Syndrome Foundation of Canada. J.I. Roberts reports no disclosures. C. Beck currently holds grants/research support from the Canadian Institutes of Health Research, Alberta Health Services, the University of Calgary Department of Psychiatry, and the Carlos Ogilvie Memorial Foundation. Dr. Beck's spouse has received honoraria and support for travel for 14 international and national workshops and presentations in the field of Family Therapy. B. Hemmelgarn receives salary/research support from Alberta Innovates Health Solutions, Alberta Health and Wellness, and the University of Calgary. J. McChesney holds a studentship award from the Western Regional Training Center for Health Services Research. H. Quan has received salary support from an Alberta Innovates Health Solutions Health Scholar Award. N. Jette holds a salary award from Alberta Innovates Health Solutions and a Canada Research Chair (CRC) Tier 2 in Neuroscience Health Services Research. She previously held a Canadian Institutes of Health Research New Investigator Award (declined after 2010 due to CRC). She has received or currently holds grants/research support from the Canadian Institutes of Health Research, the Public Health Agency of Canada, Alberta Innovates Health Solutions, Alberta Health Services, the University of Calgary Faculty of Medicine and Hotchkiss Brain Institute, and Alberta Health and Wellness. She has no commercial financial disclosures. All grants and research support are paid directly to the University of Calgary. Go to Neurology.org for full disclosures.

Authors

Affiliations & Disclosures

Christine St. Germaine-Smith, MSc
From the Departments of Clinical Neurosciences and Hotchkiss Brain Institute (C.S.G.-S., A.M., T.P., J.I.R., J.M., N.J.), Psychiatry and Hotchkiss Brain Institute (C.A.B.), Department of Medicine (B.R.H.), and Community Health Sciences and Calgary Institute of Public Health (C.S.G.-S., A.M., J.I.R., B.R.H., J.M., H.Q., N.J.), University of Calgary, Calgary, Canada.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers’ Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Amy Metcalfe, MSc
From the Departments of Clinical Neurosciences and Hotchkiss Brain Institute (C.S.G.-S., A.M., T.P., J.I.R., J.M., N.J.), Psychiatry and Hotchkiss Brain Institute (C.A.B.), Department of Medicine (B.R.H.), and Community Health Sciences and Calgary Institute of Public Health (C.S.G.-S., A.M., J.I.R., B.R.H., J.M., H.Q., N.J.), University of Calgary, Calgary, Canada.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers’ Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
CIHR doctoral research award (2008-2011); CIHR catalyst grant (co-investigator) (2009-2011)
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Tamara Pringsheim, MD
From the Departments of Clinical Neurosciences and Hotchkiss Brain Institute (C.S.G.-S., A.M., T.P., J.I.R., J.M., N.J.), Psychiatry and Hotchkiss Brain Institute (C.A.B.), Department of Medicine (B.R.H.), and Community Health Sciences and Calgary Institute of Public Health (C.S.G.-S., A.M., J.I.R., B.R.H., J.M., H.Q., N.J.), University of Calgary, Calgary, Canada.
Disclosure
Scientific Advisory Boards:
1.
Pfizer, advisory board member, 2009
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
Teva Neuroscience Canada, funding for travel; Shire Canada, speaker, 2009; Teva Neuroscience, speaker, 2009; Pfizer, speaker, 2008 and 2009
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers’ Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
Canadian Institutes of Health Research, Principal Investigator, 2010-2013; Public Health Agency of Canada, Principal Investigator, 2010-2013
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
Tourette Syndrome Foundation of Canada
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Jodie Irene Roberts, BSc
From the Departments of Clinical Neurosciences and Hotchkiss Brain Institute (C.S.G.-S., A.M., T.P., J.I.R., J.M., N.J.), Psychiatry and Hotchkiss Brain Institute (C.A.B.), Department of Medicine (B.R.H.), and Community Health Sciences and Calgary Institute of Public Health (C.S.G.-S., A.M., J.I.R., B.R.H., J.M., H.Q., N.J.), University of Calgary, Calgary, Canada.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers’ Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Cynthia A. Beck, MD
From the Departments of Clinical Neurosciences and Hotchkiss Brain Institute (C.S.G.-S., A.M., T.P., J.I.R., J.M., N.J.), Psychiatry and Hotchkiss Brain Institute (C.A.B.), Department of Medicine (B.R.H.), and Community Health Sciences and Calgary Institute of Public Health (C.S.G.-S., A.M., J.I.R., B.R.H., J.M., H.Q., N.J.), University of Calgary, Calgary, Canada.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
Dr Beck’s spouse has received speaker honoraria and support for travel for 15 international and national workshops and presentations in the field of Family Therapy.
Editorial Boards:
1.
Dr. Beck’s spouse serves as associate editor for one journal in the field of Family Therapy, and is a member of the editorial advisory board for 3 others in the same field.
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers’ Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
Dr. Beck receives grant/research support from:; Canadian Institutes of Health Research, Grant #KRS-111753, as Principal Investigator, 2011-present.; Alberta Health Services, as Principal Investigator, 2002-present
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
Dr. Beck has received grant/research support from:; Carlos Ogilvie Memorial Foundation
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Brenda R. Hemmelgarn, MD, PhD
From the Departments of Clinical Neurosciences and Hotchkiss Brain Institute (C.S.G.-S., A.M., T.P., J.I.R., J.M., N.J.), Psychiatry and Hotchkiss Brain Institute (C.A.B.), Department of Medicine (B.R.H.), and Community Health Sciences and Calgary Institute of Public Health (C.S.G.-S., A.M., J.I.R., B.R.H., J.M., H.Q., N.J.), University of Calgary, Calgary, Canada.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
1) American Journal of Kidney Disease, Editorial Board, current 2) Clinical Journal of the American Society of Nephrology, Editorial Board, current
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers’ Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Jane McChesney, BSc
From the Departments of Clinical Neurosciences and Hotchkiss Brain Institute (C.S.G.-S., A.M., T.P., J.I.R., J.M., N.J.), Psychiatry and Hotchkiss Brain Institute (C.A.B.), Department of Medicine (B.R.H.), and Community Health Sciences and Calgary Institute of Public Health (C.S.G.-S., A.M., J.I.R., B.R.H., J.M., H.Q., N.J.), University of Calgary, Calgary, Canada.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers’ Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
Studentship award from the Western Regional Training Center for Health Services Research
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Hude Quan, MD
From the Departments of Clinical Neurosciences and Hotchkiss Brain Institute (C.S.G.-S., A.M., T.P., J.I.R., J.M., N.J.), Psychiatry and Hotchkiss Brain Institute (C.A.B.), Department of Medicine (B.R.H.), and Community Health Sciences and Calgary Institute of Public Health (C.S.G.-S., A.M., J.I.R., B.R.H., J.M., H.Q., N.J.), University of Calgary, Calgary, Canada.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers’ Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
My Salary was supported by Alberta Innovation Health Solutions Health Scholar Award.
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Nathalie Jette, MD
From the Departments of Clinical Neurosciences and Hotchkiss Brain Institute (C.S.G.-S., A.M., T.P., J.I.R., J.M., N.J.), Psychiatry and Hotchkiss Brain Institute (C.A.B.), Department of Medicine (B.R.H.), and Community Health Sciences and Calgary Institute of Public Health (C.S.G.-S., A.M., J.I.R., B.R.H., J.M., H.Q., N.J.), University of Calgary, Calgary, Canada.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Epilepsia, editorial board, 2010 to present
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers’ Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
Canada Research Chair Tier 2 in Neuroscience Health Services Research, salary support (2010-present); Alberta Health and Wellness, grant support, PI (2010-present); Public Health Agency of Canada (several population health and health services research grants) PI, co-PI, co- investigator (2010-present); Canadian Institutes of Health Research, salary support and grant support (2008- present); Alberta Innovates Health Solutions, salary support and operating grant (2008-present); University of Calgary (Hotchkiss Brain Institute), grant support (2011- present); Alberta Health Services, grant support (2011- present).
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE

Notes

Study funding: Supported by the Public Health Agency of Canada, Alberta Health and Wellness, Alberta Innovates Health Solutions, and the Canadian Institutes of Health Research.
The opinions expressed in this publication are those of the authors/researchers and do not necessarily reflect the official views of the Public Health Agency of Canada.
Correspondence & reprint requests to Dr. Jette: [email protected]

Author Contributions

All authors made a significant contribution to this study. N. Jette, H. Quan, A. Metcalfe, and C. St. Germaine-Smith conceived of and designed the study; N. Jette obtained the funding for the study; all authors (except B. Hemmelgarn and H. Quan) were involved in data collection; C. St. Germaine-Smith conducted the statistical analysis and drafted the manuscript; C. St. Germaine-Smith, A. Metcalfe, and N. Jette were involved in figure design; and all authors participated in the interpretation of the data and in editing of the manuscript.

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