Nancy Downing, PhD, RN, SANE-A, SANE-P, FAAN

Representative Publications

• Carlozzi, N. E., Boileau, N. R., Paulsen, J. S., Perlmutter, J. S., Lai, J. S., Hahn, E. A., ...
  & Downing, N. R. (2019). End-of-life measures in Huntington disease:
  HDQLIFE Meaning and Purpose, Concern with Death and Dying, and End of
  Life Planning. Journal of Neurology, 1-17.
• Drake, S. A., Koetting, C., Thimsen, K., Downing, N., Porta, C., Hardy, P., Valentine, J.
  L., & Finn, C. (2018). Forensic nursing state of the science: Research and
  practice gaps and opportunities. Journal of Forensic Nursing, 14(1), 3-10. PMID
  29300235; doi: 10.1097/JFN.0000000000000181
• Hahn, E. A., Downing, N. R., Stout, J. C., Paulsen, J. S., Ready, B., Goodnight, S., Lai,
  J.-S., Miner, J. A., & Carlozzi, N. E. (2018). Understanding the need for
  assistance with survey completion in people with Huntington disease. Quality of
  Life Research 27(3),801-810. PMID 29214414; doi: 10.1007/s11136-017-1747-6
• Lai, J.-S., Goodnight, S., Downing, N. R., Ready, R. E., Paulsen, J. S., Kratz, A. L.,
  Stout, J. C., McCormack, M. K., Cella, D., Ross, C., Russell, J., & Carlozzi, N.
  E. (2018). Evaluating cognition in individuals with Huntington disease: Neuro-
  QoL cognitive functioning measures. Quality of Life Research, 27(3), 811-822.
  PMID 29222609; doi: 10.1007/s11136-017-1755-6
• Downing, N. R., Goodnight, S., **Chae, S., Perlmutter, J. S., McCormack, M., Hahn, E.,
  Barton, S. K., & Carlozzi, N. E. (2018). Factors associated with end of life
  planning in Huntington disease. American Journal of Hospice and Palliative
  Medicine, 35(3), 440-447. PMID 28655280; doi: 10.1177/1049909117708195
• Carlozzi, N. E., Hahn, E. A., Frank, S., Perlmutter, J. S., Downing, N. R., McCormack,
  M. K., Barton, S. K., Nance, M. A., & Schilling, S. G. (2017). A new measure
  for end of life planning, preparation, and preferences in Huntington disease:
  HDQLIFE End of Life Planning. Journal of Neurology, 265(1), 98-107. PMID
  29143208; doi: 10.1007/s00415-017-8677-7
• Downing, N. R., Lourens, S., De Soriano, I., Long, J. D., & Paulsen, J. S. (2016).
  Phenotype characterization of HD intermediate alleles in PREDICT-HD. Journal
  of Huntington’s Disease, 5(4), 357-368. PMID 27983559
• Carlozzi, N.E., Schilling, S.G., Lai, J.S., Paulsen, J.S., Hahn, E.A., Perlmutter, J.S., Ross,
  C.A., Downing, N.R., Kratz, A.L., McCormack, M.K. and Nance, M.A. (2016).
  HDQLIFE: Development and assessment of health-related quality of life in
  Huntington disease (HD). Quality of Life Research, 25 (10), 2441-2455. PMID
  27522213; doi: 10.1007/s11136-016-1386-3
• Carlozzi, N. E., Downing, N. R., McCormack, M. K., Schilling, S. G., Perlmutter, J. S.,
  Hahn, E. A., ... & Cella, D. (2016). New measures to capture end of life concerns
  in Huntington disease: Meaning and Purpose and Concern with Death and Dying
  from HDQLIFE (a patient-reported outcomes measurement system). Quality of
  Life Research, 25(10), 2403-2415. PMID 27393121; doi: 10.1007/s11136-016-
  1354-y
• Carlozzi, N. E., Downing, N. R., Schilling, S. G., Lai, J. S., Goodnight, S. M., Miner, J.
  A., & Frank, S. A. (2016). The development of a new computer adaptive test to
  evaluate chorea in Huntington disease: HDQLIFE Chorea. Quality of Life
  Research, 25(10), 2429-2439. PMID 27141833; doi: 10.1007/s11136-016-1307-5
• *Wallace, M. K., Downing, N. R., Lourens, S., Kim, J.-I., Mills, J. A., Long, J. D., &
  Paulsen, J. S. (2016). Is there an association of physical activity with brain
  volume, behavior, and day to day function? A cross sectional design in prodromal
  and early Huntington Disease. PLoS Currents HD, April. PMID 27818843
• Lai, J.-S., Goodnight, S., Downing, N. R., Ready, R. E., Paulsen, J. S., Kratz, A. L.,
  Stout, J. C., McCormack, M. K., Cella, D., Ross, C., Russell, J., & Carlozzi, N. E.
  (2018). Evaluating cognition in individuals with Huntington disease: Neuro-QoL
  cognitive functioning measures. Quality of Life Research, 27(3), 811-822. PMID
  29222609; doi: 10.1007/s11136-017-1755-6
• Downing, N. R., Goodnight, S., **Chae, S., Perlmutter, J. S., McCormack, M., Hahn, E.,
  Barton, S. K., & Carlozzi, N. E. (2018). Factors associated with end of life
  planning in Huntington disease. American Journal of Hospice and Palliative
  Medicine, 35(3), 440-447. PMID 28655280; doi: 10.1177/1049909117708195
• Carlozzi, N. E., Hahn, E. A., Frank, S., Perlmutter, J. S., Downing, N. R., McCormack,
  M. K., Barton, S. K., Nance, M. A., & Schilling, S. G. (2017). A new measure for
  end of life planning, preparation, and preferences in Huntington disease:
  HDQLIFE End of Life Planning. Journal of Neurology, 265(1), 98-107. PMID
  29143208; doi: 10.1007/s00415-017-8677-7
• Downing, N. R., Lourens, S., De Soriano, I., Long, J. D., & Paulsen, J. S. (2016).
  Phenotype characterization of HD intermediate alleles in PREDICT-HD. Journal
  of Huntington’s Disease, 5(4), 357-368. PMID 27983559
• Carlozzi, N.E., Schilling, S.G., Lai, J.S., Paulsen, J.S., Hahn, E.A., Perlmutter, J.S., Ross,
  C.A., Downing, N. R., Kratz, A.L., McCormack, M.K. and Nance, M.A. (2016).
  HDQLIFE: Development and assessment of health-related quality of life in
  Huntington disease (HD). Quality of Life Research, 25 (10), 2441-2455. PMID
  27522213; doi: 10.1007/s11136-016-1386-3
• Carlozzi, N. E., Downing, N. R., McCormack, M. K., Schilling, S. G., Perlmutter, J. S.,
  Hahn, E. A., & Cella, D. (2016). New measures to capture end of life concerns in
  Huntington disease: Meaning and Purpose and Concern with Death and Dying
  from HDQLIFE (a patient-reported outcomes measurement system). Quality of
  Life Research, 25(10), 2403-2415. PMID 27393121; doi: 10.1007/s11136-016-
  1354-y
• Carlozzi, N. E., Downing, N. R., Schilling, S. G., Lai, J. S., Goodnight, S. M., Miner, J.
  A., & Frank, S. A. (2016). The development of a new computer adaptive test to
  evaluate chorea in Huntington disease: HDQLIFE Chorea. Quality of Life
  Research, 25(10), 2429-2439. PMID 27141833; doi: 10.1007/s11136-016-1307-5
• *Wallace, M. K., Downing, N. R., Lourens, S., Kim, J.-I., Mills, J. A., Long, J. D.,
  & Paulsen, J. S. (2016). Is there an association of physical activity with
  brain volume, behavior, and day to day function? A cross sectional design
  in prodromal and early Huntington Disease. PLoS Currents HD, April.
  PMID 27818843
• Kim, J., Long, J. D., Mills, J. A., Downing, N., Williams, J. K., & Paulsen, J. S.
  (2015). Performance of the 12-item WHODAS 2.0 in prodromal Huntington
  disease. European Journal of Human Genetics, 23(11), 1584. PMID 25735480;
  doi: 10.1038/ejhg.2015.11
• Williams, J. K., Kim, J. I., Downing, N., Farias, S., Harrington, D. L., Long, J. D.
  Paulsen, J. S. (2015). Everyday cognition in prodromal Huntington disease.
  Neuropsychology, 29(2), 255-267. PMID: 25000321; doi: 10.1037/neu0000102
• Carlozzi, N. E., Kratz, A. L., Downing, N. R., Goodnight, S., Miner, J. A., Migliore,
  N., & Paulsen, J. S. (2015). Validity of the 12-item World Health Organization
  Disability Assessment Schedule 2.0 (WHODAS 2.0) in individuals with
  Huntington disease
• Downing, N. R., Kim, J. I., Williams, J. K., Long, J. D., Mills, J. A., & Paulsen, J. S.
  (2014). WHODAS 2.0 in prodromal Huntington disease: Measures of
  functioning in neuropsychiatric disease. European Journal of Human Genetics,
  22(8), 958-963. PMID: 24327189; doi: 10.1038/ejhg.2013.275.
• Driessnack, M., Daack-Hirsch, S., Downing, N., Hanish, A., Shah, L. L., Alasagheirin,
  M. Williams, J. K. (2013). The disclosure of incidental genomic findings: An
  "ethically important moment" in pediatric research and practice. Journal of
  Community Genetics, 4(4), 435-444. PMID: 23572417; doi: 10.1007/s12687-
  013-0145-1
• Epping, E. A., Mills, J. A., Beglinger, L. J., Fiedorowicz, J. G., Craufurd, D., Smith, M.
  M., Groves, M., Bijanki, K. R., Downing, N.,Paulsen, J. S. (2013).
  Characterization of depression in prodromal Huntington disease in the
  neurobiological predictors of HD (PREDICT-HD) study. Journal of Psychiatric
  Research, 47(10), 1423-1431. PMID: 23790259; doi:
  10.1016/j.jpsychires.2013.05.026
• Brandt, D. S., Shinkunas, L., Hillis, S. L., Daack-Hirsch, S. E., Driessnack, M.,
  Downing, N. R., . . ., & Simon, C. M. (2013). A closer look at the
  recommended criteria for disclosing genetic results: Perspectives of medical
  genetic specialists, genomic researchers, and institutional review board chairs.
  Journal of Genetic Counseling, 22(4), 544-553. PMID: 23547023; doi:
  10.1007/s10897-013-9583-5
• Downing, N. R., Williams, J. K., Daack-Hirsch, S., Driessnack, M., & Simon, C. M.
  (2013). Genetics specialists' perspectives on disclosure of genomic incidental
  findings in the clinical setting. Patient Education and Counseling, 90(1), 133-
  138. PMID: 23068909; doi: 10.1016/j.pec.2012.09.010
• Brossman, B., Williams, J. K., Downing, N., Mills, J. A., & Paulsen, J. S. Development
  of the Huntington Disease Work Function Scale (2012). Journal of
  Occupational and Environmental Medicine, 54(10), 1300-1308. PMID:
  22995807; doi: 10.1097/JOM.0b013e31825f30ab
• Downing, N. R., Williams, J. K., Leserman, A. L., & Paulsen, J. S. Couples' coping in
  prodromal Huntington disease: A mixed methods study (2012). Journal of
  Genetic Counseling, 21(5), 662-670. PMID: 22278219; doi: 10.1007/s10897-
  012-9480-3
• Downing, N. R., & Mackin, M. L. (2012). The perception of role conflict in sexual
  assault nursing and its effects on care delivery. Journal of Forensic Nursing,
  8(2), 53-60. PMID: 22621663; doi: 10.1111/j.1939-3938.2012.01135.x
• Williams, J. K., Daack-Hirsch, S., Driessnack, M., Downing, N., Shinkunas, L.,
  Brandt, D., & Simon, C. (2012). Researcher and institutional review board
  chair perspectives on incidental findings in genomic research. Genetic
  Testing and Molecular Biomarkers, 16(6), 508-513. PMID: 22352737; doi:
  10.1089/gtmb.2011.0248
• Ramey, S. L., Downing, N. R., Franke, W. D., Perkhounkova, Y., & Alasagheirin, M.
  H. (2012). Relationships among stress measures, risk factors, and inflammatory
  biomarkers in law enforcement officers. Biological Research for Nursing,
  14(1), 16- 26. PMID: 21362637; doi: 10.1177/1099800410396356
• Downing, N., Smith, M. M., Beglinger, L. J., Mills, J., Duff, K., Rowe, K. C., Predict-
  HD Investigators of Huntington Study Group (2012). Perceived stress in
  prodromal Huntington disease. Psychology & Health, 27(2), 196-209. PMID:
  21623544; doi: 10.1080/08870446.2010.529141
• Williams, J., Downing, N., Vaccarino, A. L., Guttman, M., & Paulsen, J. S. (2011).
  Self reports of day-to-day function in a small cohort of people with
  prodromal and early HD. PLoS Currents HD, 11(3), RRN1254. PMID:
  21901173; doi: 10.1371/currents.RRN1254
• Ramey, S. L., Perkhounkova, Y., Downing, N. R., & Culp, K. R. (2011). Relationship
  of cardiovascular disease to stress and vital exhaustion in an urban, Midwestern
  police department. AAOHN journal, 59(5), 221-227. PMID: 21534494; doi:
  10.3928/08910162-20110418-02
• Downing, N. R., Williams, J. K., & Paulsen, J. S. (2010). Couples' attributions for work
  function changes in prodromal Huntington disease. Journal of Genetic
  Counseling,19(4), 343-352. PMID: 20309619; doi:10.1007/s10897-010-9294-0
  Ramey, S. L., Downing, N. R., & Franke, W. D. (2009). Milwaukee Police Department
  retirees: Cardiovascular disease risk and morbidity among aging law
  enforcement officers. AAOHN Journal, 57(11), 448-453. PMID: 19873941;
  doi: 10.3928/08910162-20091019-02
• Ramey, S. L., Downing, N. R., & Knoblauch, A. (2008). Developing strategic
  interventions to reduce cardiovascular disease risk among law enforcement
  officers: The art and science of data triangulation. AAOHN Journal, 56(2),
  54-62. PMID: 18306648

Book Chapters

• Bogue, R. J. & Downing, N. R. (2019). Research on physician burnout and wellbeing:
  A solutions-oriented perspective. In T. Hamilton, D. McCallister & D.
  Thorpe (Eds). Transforming the heart of practice: An organizational and
  personal approach to physician well-being. New York, NY: Springer
  Publishing.
• Downing, N. R., Valentine, J. L., & Gaffney, D. A. (2019). The neurobiology of
  traumatic stress responses after sexual assault. In Ledray, L. E., Burgess, A.W., & Giardino, A. P. (Eds.), Medical response to adult sexual assault, 2nd
  Ed. St. Louis: STM Learning
• Linda E. Ledray, L. E., Valentine, J. L., Downing, N. R., & Frazier, P. A. (2019).
  Impact and recovery. In Ledray, L. E., Burgess, A. W., & Giardino, A. P.
  (Eds.), Medical response to adult sexual assault, 2nd Ed. St. Louis: STM
  Learning
• Downing, N. R. (2016). Interacting with healthcare providers. In A. Leserman,
  Editor, & D. Lovecky, Editor. A caregiver guide for HD families (pp.109-
  116). New York, NY: Huntington's Disease Society of America.
  Leserman, A. (Ed.) (2013). Talking with kids about HD. New York, New York:
  Huntington's Disease Society of America, contributing author.