Publications

HDQLIFE™ -  Development 

Main Overview Paper

Carlozzi, N. E., Schilling, S. G., Lai, J. S., Paulsen, J. S., Hahn, E. A., Perlmutter, J. S., . . . Cella, D. (2016). HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD). Qual Life Res, 25(10), 2441-2455. doi:10.1007/s11136-016-1386-3

Primary Qualitative Paper

Carlozzi, N. E., & Tulsky, D. S. (2013). Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease. J Health Psychol, 18(2), 212-225. doi:10.1177/1359105312438109 

Measure Development

Carlozzi, N. E., & Tulsky, D. S. (2012). Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease. Journal of health psychology, 18(2), 212-25. doi:10.1177/1359105312438109 

Carlozzi, N. E., Downing, N. R., McCormack, M. K., Schilling, S. G., Perlmutter, J. S., Hahn, E. A., . . . Nance, M. A. (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). Qual Life Res, 25(10), 2403-2415. 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., & S, A. F. (2016). The development of a new computer adaptive test to evaluate chorea in Huntington disease: HDQLIFE Chorea. Qual Life Res, 25(10), 2429-2439. doi:10.1007/s11136-016-1307-5

Carlozzi, N. E., Hahn, E. A., Frank, S. A., Perlmutter, J. S., Downing, N. D., McCormack, M. K., . . . Schilling, S. G. (2018). A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning. J Neurol, 265(1), 98-107. doi:10.1007/s00415-017-8677-7

Carlozzi, N. E., Schilling, S. G., Lai, J. S., Perlmutter, J. S., Nance, M. A., Waljee, J. F., . . . Dayalu, P. (2016). HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties. Qual Life Res, 25(10), 2417-2427. doi:10.1007/s11136-016-1273-y.

Measure Validation

Carlozzi, N. E., Ready, R. E., Frank, S. , Cella, D. , Hahn, E. A., Goodnight, S. M., Schilling, S. G., Boileau, N. R. and Dayalu, P. (2017). Patient‐reported outcomes in Huntington's disease: Quality of life in neurological disorders (Neuro‐QoL) and Huntington's disease health‐related quality of life (HDQLIFE) physical function measures. Mov Disord., 32: 1096-1102. doi:10.1002/mds.27046 

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. J Neurol, 266(10), 2406-2422. doi:10.1007/s00415-019-09417-7

HDQLIFE  - Other Publications

Carlozzi, N. E., Ready, R. E., Frank, S., Cella, D., Hahn, E. A., Goodnight, S. M., . . . Dayalu, P. (2017). Patient-reported outcomes in Huntington's disease: Quality of life in neurological disorders (Neuro-QoL) and Huntington's disease health-related quality of life (HDQLIFE) physical function measures. Mov Disord, 32(7), 1096-1102. doi:10.1002/mds.27046 

Carlozzi, N. E., Boileau, N. R., Perlmutter, J. S., Chou, K. L., Stout, J. C., Paulsen, J. S., . . . Dayalu, P. (2018). Agreement between clinician-rated versus patient-reported outcomes in Huntington disease. J Neurol, 265(6), 1443-1453. doi:10.1007/s00415-018-8852-5 

Carlozzi, N. E., Hahn, E. A., Goodnight, S. M., Kratz, A. L., Paulsen, J. S., Stout, J. C., . . . Ready, R. E. (2018). Patient-reported outcome measures in Huntington disease: Quality of life in neurological disorders (Neuro-QoL) social functioning measures. Psychol Assess, 30(4), 450-458. doi:10.1037/pas0000479 

Carlozzi, N. E., Schilling, S., Kratz, A. L., Paulsen, J. S., Frank, S., & Stout, J. C. (2018). Understanding patient-reported outcome measures in Huntington disease: at what point is cognitive impairment related to poor measurement reliability? Qual Life Res. doi:10.1007/s11136-018-1912-6 

Downing, N. R., Goodnight, S., Chae, S., Perlmutter, J. S., McCormack, M., Hahn, E., . . . Carlozzi, N. (2018). Factors Associated With End-of-Life Planning in Huntington Disease. Am J Hosp Palliat Care, 35(3), 440-447. doi:10.1177/1049909117708195 

Fritz, N. E., Boileau, N. R., Stout, J. C., Ready, R., Perlmutter, J. S., Paulsen, J. S., . . . Carlozzi, N. E. (2018). Relationships Among Apathy, Health-Related Quality of Life, and Function in Huntington's Disease. J Neuropsychiatry Clin Neurosci, 30(3), 194-201. doi:10.1176/appi.neuropsych.17080173 

Hahn, E. A., Downing, N. R., Stout, J. C., Paulsen, J. S., Ready, B., Goodnight, S., . . . Carlozzi, N. E. (2018). Understanding the need for assistance with survey completion in people with Huntington disease. Qual Life Res, 27(3), 801-810. doi:10.1007/s11136-017-1747-6 

Lai, J. S., Goodnight, S., Downing, N. R., Ready, R. E., Paulsen, J. S., Kratz, A. L., . . . Carlozzi, N. E. (2018). Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures. Qual Life Res, 27(3), 811-822. doi:10.1007/s11136-017-1755-6 

Thorley, E. M., Iyer, R. G., Wicks, P., Curran, C., Gandhi, S. K., Abler, V., . . . Carlozzi, N. E. (2018). Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States. Patient, 11(5), 547-559. doi:10.1007/s40271-018-0312-x

Wesson, M., Boileau, N. R., Perlmutter, J. S., Paulsen, J. S., Barton, S. K., McCormack, M. K., & Carlozzi, N. E. (2018). Suicidal Ideation Assessment in Individuals with Premanifest and Manifest Huntington Disease. J Huntingtons Dis, 7(3), 239-249. doi:10.3233/jhd-180299

Carlozzi, N. E., Schilling, S. G., Boileau, N. R., Chou, K. L., Perlmutter, J. S., Frank, S., . . . Dayalu, P. (2019). How different aspects of motor dysfunction influence day-to-day function in huntington's disease. Mov Disord, 34(12), 1910-1914. doi:10.1002/mds.27866

Boileau, N. R., Paulsen, J. S., Ready, R. E., Hahn, E. A., Lai, J. S., & Carlozzi, N. E. (2020). Understanding domains that influence perceived stigma in individuals with Huntington disease. Rehabil Psychol, 65(2), 113-121. doi:10.1037/rep0000311

Carlozzi, N. E., Boileau, N. R., Chou, K. L., Ready, R. E., Cella, D., McCormack, M. K., . . . Dayalu, P. (2020). HDQLIFE and neuro-QoL physical function measures: Responsiveness in persons with huntington's disease. Mov Disord, 35(2), 326-336. doi:10.1002/mds.27908

Carlozzi, N. E., Boileau, N. R., Paulsen, J. S., Downing, N. R., Ready, R., Perlmutter, J. S., . . . Lai, J. S. (2020). Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD). Qual Life Res, 29(5), 1393-1403. doi:10.1007/s11136-019-02391-7

HD-PRO-TRIAD™ Publications

Carlozzi, N. E., Victorson, D., Sung, V., Beaumont, J. L., Cheng, W., Gorin, B., Duh, M. S., Samuelson, D., Tulsky, D., Gutierrez, S., Nowinski, C. J., Mueller, A., Shen, V., … Frank, S. (2014). HD-PRO-TRIAD™ Validation: A Patient-reported Instrument for the Symptom Triad of Huntington's Disease. Tremor and other hyperkinetic movements (New York, N.Y.), 4, 223. doi:10.7916/D8PN93NZ 

Boileau, N. R., Stout, J. C., Paulsen, J. S., Cella, D., McCormack, M. K., Nance, M. A., . . . Carlozzi, N. E. (2017). Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington's Disease. J Huntingtons Dis, 6(3), 201-215. doi:10.3233/JHD-170238  

Victorson, D., Carlozzi, N. E., Frank, S., Beaumont, J. L., Cheng, W., Gorin, B., . . . Sung, V. (2014). Identifying Motor, Emotional-Behavioral, and Cognitive Deficits that Comprise the Triad of HD Symptoms from Patient, Caregiver, and Provider Perspectives. Tremor Other Hyperkinet Mov (N Y), 4, 224. doi:10.7916/d8jw8bws

IMPORTANT: Please include a citation for any HDQLIFE measures used in publications. If using a short form, please cite the publication describing the development of the full item bank. Citation information can be found HERE.