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Evaluating the accuracy of self-report for the diagnosis of HIV-associated neurocognitive disorder (HAND): defining “symptomatic” versus “asymptomatic” HAND

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Abstract

The criteria for differentiating symptomatic from asymptomatic HIV-associated neurocognitive disorder require evaluation of (1) cognitive impairment, (2) daily functioning declines, and (3) whether the functional declines are attributable to cognitive versus physical problems. Many providers rely only on self-report to evaluate these latter criteria. However, the accuracy of patient-provided information may be limited. This study evaluated the validity of self-assessment for HIV-associated neurocognitive disorder (HAND) diagnoses by comparing objective findings with self-report of criteria 2 and 3 above. Self-reports were used to stratify 277 cognitively impaired HIV+ individuals into functionally dependent (n = 159) and independent (n = 118) groups, followed by group comparisons of objective functional problems. The dependent group was then divided into those who self-attributed their functional dependence to only cognitive (n = 80) versus only physical (n = 79) causes, for further comparisons on objective findings. The functionally dependent group was significantly worse than the independent group on all objective disability characteristics except severity of cognitive impairment, while those who attributed their dependence to physical (versus cognitive) factors were similar on all objective physical, cognitive, and functioning variables. Of note, 28 % of physical attributors showed no physical abnormalities on neuromedical examinations. Results suggest that patient report is consistently associated with objective measures of functional loss; in contrast, patient identification of physical versus cognitive causes is poorly associated with objective criteria. These findings caution against relying solely on patient self-report to determine whether functional disability in cognitively impaired HIV+ individuals can be attributed to strictly physical causes.

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Acknowledgments

The CNS HIV Anti-Retroviral Therapy Effects Research (CHARTER; https://www.charterresource.ucsd.edu) is supported by awards N01 MH22005, HHSN271201000036C, and HHSN271201000030C from the National Institutes of Health. The CNS HIV Anti-Retroviral Therapy Effects Research (CHARTER) group is affiliated with Johns Hopkins University; the Icahn School of Medicine at Mount Sinai; University of California, San Diego; University of Texas, Galveston; University of Washington, Seattle; and Washington University, St. Louis, and is headquartered at the University of California, San Diego, and includes Director Igor Grant, M.D.; Co-directors Scott L. Letendre, M.D., Ronald J. Ellis, M.D., Ph.D., and Thomas D. Marcotte, Ph.D.; Center Manager Donald Franklin, Jr.; Neuromedical Component: Ronald J. Ellis, M.D., Ph.D. (P.I.), and J. Allen McCutchan, M.D.; Laboratory and Virology Component: Scott Letendre, M.D. (Co-P.I.), and Davey M. Smith, M.D. (Co-P.I.).; Neurobehavioral Component: Robert K. Heaton, Ph.D. (P.I.), J. Hampton Atkinson, M.D., and Matthew Dawson; Imaging Component: Christine Fennema-Notestine, Ph.D. (P.I.), Michael J Taylor, Ph.D., and Rebecca Theilmann, Ph.D.; Data Management Component: Anthony C. Gamst, Ph.D. (P.I.), and Clint Cushman; Statistics Component: Ian Abramson, Ph.D. (P.I.), Florin Vaida, Ph.D., and Reena Deutsch, Ph.D.; Johns Hopkins University Site: Ned Sacktor (P.I.) and Vincent Rogalski; Icahn School of Medicine at Mount Sinai Site: Susan Morgello, M.D. (Co-P.I.), David Simpson, M.D. (Co-P.I.), and Letty Mintz, N.P.; University of California, San Diego Site: J. Allen McCutchan, M.D. (P.I.), and Kaori Phillips, B.S.N.; University of Washington, Seattle Site: Ann Collier, M.D. (Co-P.I.), Christina Marra, M.D. (Co-P.I.), and Sher Storey, PA-C.; University of Texas, Galveston Site: Benjamin Gelman, M.D., Ph.D. (P.I.), and Eleanor Head, R.N., B.S.N.; and Washington University, St. Louis Site: David Clifford, M.D. (P.I.), Muhammad Al-Lozi, M.D., and Mengesha Teshome, M.D. The views expressed in this article are those of the authors and do not reflect the official policy or position of the US Government.

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Authors and Affiliations

  1. Department of Psychiatry, University of California, San Diego, 9500 Gilman Drive, La Jolla, San Diego, CA, 92093, USA

    Lisa C. Obermeit, Jessica Beltran, Donald R. Franklin, Scott Letendre, Ronald Ellis, Christine Fennema-Notestine, Igor Grant & Robert K. Heaton

  2. SDSU/UCSD Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA

    Lisa C. Obermeit & Kaitlin B. Casaletto

  3. Department of Medicine, University of California, San Diego, 9500 Gilman Drive, La Jolla, San Diego, CA, 92093, USA

    Scott Letendre & J. Allen McCutchan

  4. Department of Neurosciences, University of California, San Diego, 9500 Gilman Drive, La Jolla, San Diego, CA, 92093, USA

    Ronald Ellis

  5. Department of Family Medicine & Public Health, University of California, San Diego, 9500 Gilman Drive, La Jolla, San Diego, CA, 92093, USA

    Florin Vaida

  6. Department of Medicine, Harborview Medical Center, University of Washington, 325 9th Avenue, Seattle, WA, 98104, USA

    Ann C. Collier

  7. Department of Neurology, University of Washington, Seattle, WA, USA

    Christina M. Marra

  8. Department of Neurology, Washington University in St. Louis, 660 South Euclid Avenue, Saint Louis, MO, 63110, USA

    David Clifford

  9. Department of Pathology, University of Texas Medical Branch, 3.118 Keiler Building, 301 University Boulevard, Galveston, TX, 77555-0609, USA

    Benjamin Gelman

  10. Department of Neurology, Johns Hopkins University, 600 North Wolfe Street, Sheikh Zayed Tower, Baltimore, MD, 21287, USA

    Ned Sacktor

  11. Department of Pathology, Icahn School of Medicine at Mount Sinai, New York, NY, 21287, USA

    Susan Morgello

  12. Department of Neurology, Icahn School of Medicine at Mount Sinai, 1428 Madison Avenue, New York, NY, 21287, USA

    David Simpson

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  1. Lisa C. Obermeit
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  2. Jessica Beltran
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  3. Kaitlin B. Casaletto
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The CNS HIV Anti-Retroviral Therapy Effects Research (CHARTER) Group

Corresponding author

Correspondence to Robert K. Heaton.

Ethics declarations

Study procedures were approved by the Human Subjects Protection Committees of each participating university. All participants provided written informed consent prior to study participation.

Conflict of interest

Ms. Obermeit is funded by a National Institute on Drug Abuse training grant DA031098. Ms. Casaletto is funded by a National Institute of Health grant F31DA035708. Mr. Franklin receives support from National Institute of Health grants HHSN271201000030C and HHSN271201000036C. Dr. Letendre receives support from National Institute of Health grants HHSN271201000036C, R01MH58076, R01MH92225, P50DA26306, and P30MH62512 and has received support for research projects from Abbott, Merck, Tibotec, and GlaxoSmithKline; has consulted for Gilead Sciences, GlaxoSmithKline, Merck, and Tibotec; and has received lecture honoraria from Abbott and Boehringer-Ingelheim. Dr. Ellis received National Institute of Health grants R01MH058076, U01MH83506, P30MH62512, R01MH83552, P50DA26306, R01MH095621, 2U01NS32228, and HHSN271201000036C and consultant fees from NeurogesX. Dr. Fennema-Notestine has received research support from National Institute of Health grants R01NS080655, R21DA037667, R01DA039775, R01AG048650, R03MH103995, and R01MH107345; R01 AG022381, P30 MH062512, and P50 DA026306; R01MH084796; and HHSN271201000036C. Dr. Vaida receives research support from National Institute of Health grants P30 MH62512, P50 DA26306, R01 MH083552, R01 AI47033, U01 AI74521, R01 MH085608, HHSN271201000030C, and HHSN271201000036C and Precision Photonics Corporation grant AI068543 and has served on a data safety and management board for Ardea Biosciences, Inc. Dr. Collier is supported by National Institute of Health grants MH22005, MH107345, AI069481, AI068636, AI120176, AI111806, NS082120, AI057005, DA037979, AI27757, and AI27767; had past research support from Bristol-Myers Squibb, Merck & Company, and Roche Molecular Systems; and is a member of a Data, Safety, and Monitoring Board for Merck-sponsored studies. Dr. Marra receives research support from National Institute of Health grants R01NS082120, R01NS34235, and R01MH107345 and receives royalties from Lippincott Williams and Wilkins and from UptoDate. Dr. Clifford is supported by National Institute of Health and Alzheimer Association grants NS077384, AI69495, NR012907, NR014449, NR012657, and UL1 TR000448; receives research support from Lilly and Roche; and has provided scientific advisory or consulting to Amgen, Biogen, Inhibikase, Genzyme/Sanofi, Takeda/Millennium, Roche/Genentech, Novartis, GSK, BMS, Pfizer, Quintiles, and Drinker Biddle & Reath (PML Consortium Scientific Advisory Board). Dr. Gelman receives support for National Institute of Health grants R01MH101017, R01MH107345, R01MH104134, R01NS072005, R01NS079166, R01DA036165, R56HL129881, and U24MH10093001. Dr. Sacktor receives support from National Institute of Health grants U01AI035042, RO1AG034852, HHSN271201000036C, RO1NS081196, RO1AG042165, P30MH075673, and RO1MH099733. Dr. Morgello receives support from National Institute of Health grants U24MH100931, R25MH080663, RO1MH107345, R21NR015009, R21DK105917, and RO1DA037611. Dr. Simpson receives research support from National Institute of Health grants U01MH083501, HHSN271201000027C, and UL1TR000067 and provided consultancy to GlaxoSmithKline and Gilead. Dr. McCutchan receives support from National Institute of Health grants P30MH62512, U01MH83506, U01AI69432, HHSN271201000036C, K30 RR22681, R01MH58076, and U13MH81676 and National Institute of Health/Centers for Disease Control and Prevention (CDC) grant U2G PS00623 and authors chapters on HIV for the Merck Manual. Dr. Grant receives support from National Institute of Health grants P30MH62512, P50DA26306, R01MH107345, 2RF1AG15301, R21DA036608, and R01MH094159. Dr. Heaton receives ongoing research support from National Institute of Health grants R01MH92225, P50DA26306, P30MH62512, R01MH60720, R01MH58076, R01MH78737, U01MH83506, R01MH83552, R01MH80150, and HHSN271201000036C.

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Obermeit, L.C., Beltran, J., Casaletto, K.B. et al. Evaluating the accuracy of self-report for the diagnosis of HIV-associated neurocognitive disorder (HAND): defining “symptomatic” versus “asymptomatic” HAND. J. Neurovirol. 23, 67–78 (2017). https://doi.org/10.1007/s13365-016-0474-z

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