Neuro-QoL Publications

Tran C, Bril V, Katzberg HD, Barnett C. Fatigue is a relevant outcome in patients with Myasthenia Gravis. Muscle Nerve. 2018. https://www.ncbi.nlm.nih.gov/pubmed/29342314.

 

 

 

Updated 1/23/18

Apple, A.C., Ryals, A.J., Alpert, K.I., Wagner, L.I., Shih, P.-A., Dokucu, M., . . . Wang, L. (2017). Subtle Hippocampal Deformities in Breast Cancer Survivors with Reduced Episodic Memory and Self-Reported Cognitive Concerns. NeuroImage.Clinical. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5369871/

Beckmann, N.B., Miller, W.P., Dietrich, M.S., & Orchard, P.J. (2017). Quality of Life among Boys with Adrenoleukodystrophy Following Hematopoietic Stem Cell Transplant. Child Neuropsychology, 1-13.  https://www.ncbi.nlm.nih.gov/pubmed/28934891

Bertisch, H., Rivara, F.P., Kisala, P.A., Wang, J., Yeates, K.O., Durbin, D., . . . Tulsky, D.S. (2017). Psychometric Evaluation of the Pediatric and Parent-Proxy Patient-Reported Outcomes Measurement Information System and the Neurology and Traumatic Brain Injury Quality of Life Measurement Item Banks in Pediatric Traumatic Brain Injury. Quality of Life Research, 1-13. https://www.ncbi.nlm.nih.gov/pubmed/28271316

Carlozzi, N.E., Hahn, E.A., Goodnight, S.M., Kratz, A.L., Paulsen, J.S., Stout, J.C., . . . Ready, R.E. (2017). Patient-Reported Outcome Measures in Huntington Disease: Quality of Life in Neurological Disorders (Neuro-Qol) Social Functioning Measures. Psychological Assessment. https://www.ncbi.nlm.nih.gov/pubmed/28557480

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. Movement Disorders. https://www.ncbi.nlm.nih.gov/pubmed/28556412

Cook, K.F., Kallen, M.A., Coon, C.D., Victorson, D., & Miller, D.M. (2017). Idio Scale Judgment: Evaluation of a New Method for Estimating Responder Thresholds. Quality of Life Research. https://www.ncbi.nlm.nih.gov/pubmed/28624901

Gauthier, L.V., Kane, C., Borstad, A., Strahl, N., Uswatte, G., Taub, E., . . . Mark, V. (2017). Video Game Rehabilitation for Outpatient Stroke (Vigorous): Protocol for a Multi-Center Comparative Effectiveness Trial of in-Home Gamified Constraint-Induced Movement Therapy for Rehabilitation of Chronic Upper Extremity Hemiparesis. BMC Neurology, 17, 109. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5465449/

Howland, M., Allan, K.C., Carlton, C.E., Tatsuoka, C., Smyth, K.A., & Sajatovic, M. (2017). Patient-Rated Versus Proxy-Rated Cognitive and Functional Measures in Older Adults. Patient Related Outcome Measures, 8, 33-42. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5358991/

Kellermann, T.S., Mueller, M., Carter, E.G., Brooks, B., Smith, G., Kopp, O.J., & Wagner, J.L. (2017). Prediction of Specific Depressive Symptom Clusters in Youth with Epilepsy: The Nddi-E-Y Versus Neuro-Qol Sf. Epilepsia. https://www.ncbi.nlm.nih.gov/pubmed/28597917

Kozlowski, A.J., Fabian, M., Lad, D., & Delgado, A. (2017). Feasibility and Safety of a Powered Exoskeleton for Assisted Walking for Persons with Multiple Sclerosis: A Single-Group Preliminary Study. Archives of Physical Medicine and Rehabilitation. https://www.ncbi.nlm.nih.gov/pubmed/28315666

Kratz, A.L., Braley, T.J., Foxen-Craft, E., Scott, E., Murphy Iii, J., & Murphy, S.L. (2017). How Do Pain, Fatigue, Depressive, and Cognitive Symptoms Relate to Well-Being and Social and Physical Functioning in the Daily Lives of Individuals with Multiple Sclerosis? Archives of Physical Medicine and Rehabilitation. https://www.ncbi.nlm.nih.gov/pubmed/28729170

Nowinski, C.J., Miller, D.M., & Cella, D. (2017). Evolution of Patient-Reported Outcomes and Their Role in Multiple Sclerosis Clinical Trials. Neurotherapeutics.  https://www.ncbi.nlm.nih.gov/pubmed/28913785

Reeves, M.J., Hughes, A.K., Woodward, A.T., Freddolino, P.P., Coursaris, C.K., Swierenga, S.J., . . . Fritz, M.C. (2017). Improving Transitions in Acute Stroke Patients Discharged to Home: The Michigan Stroke Transitions Trial (Mistt) Protocol. BMC Neurology, 17, 115. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474297/

Schwartz, C.E., Michael, W., Zhang, J., Rapkin, B.D., & Sprangers, M.A.G. (2017). Assessing Reserve-Building Pursuits and Person Characteristics: Psychometric Validation of the Reserve-Building Measure. Quality of Life Research.  https://www.ncbi.nlm.nih.gov/pubmed/28879537

Stockdale, L., & Coyne, S.M. (2017). Video Game Addiction in Emerging Adulthood: Cross-Sectional Evidence of Pathology in Video Game Addicts as Compared to Matched Healthy Controls. Journal of Affective Disorders.  https://www.ncbi.nlm.nih.gov/pubmed/?term=PMID28841491

Yorkston, K., Baylor, C., & Mach, H. (2017). Factors Associated with Communicative Participation in Amyotrophic Lateral Sclerosis. Journal of Speech, Language, and Hearing Research, 60(6S), 1791-1797. https://www.ncbi.nlm.nih.gov/pubmed/28655040

 

 

Updated 9/25/2017

Bolt, S., Eadie, T., Yorkston, K., Baylor, C., & Amtmann, D. (2016). Variables Associated with Communicative Participation after Head and Neck Cancer. JAMA Otolaryngology--Head & Neck Surgery, 142(12), 1145-1151. http://dx.doi.org/10.1001/jamaoto.2016.1198

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). Quality of Life Research, 25(10), 2403-2415. https://www.ncbi.nlm.nih.gov/pubmed/27393121

Carlozzi, N.E., Downing, N.R., Schilling, S.G., Lai, J.S., Goodnight, S.M., Miner, J.A., & A. Frank, S. (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. http://dc.doi.org/10.1007/s11136-016-1307-5

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). Quality of Life Research, 25(10), 2441-2455. https://www.ncbi.nlm.nih.gov/pubmed/27522213

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. Quality of Life Research, 25(10), 2417-2427. https://www.ncbi.nlm.nih.gov/pubmed/27038054

Chang, K.W.C., Austin, A., Yeaman, J., Phillips, L., Kratz, A., Yang, L.J.S., & Carlozzi, N.E. (2016). Health-Related Quality of Life Components in Children with Neonatal Brachial Plexus Palsy: A Qualitative Study. PM&R. https://www.ncbi.nlm.nih.gov/pubmed/27519824

Fyffe, D., Kalpakjian, C., Z. , Slavin, M., Kisala, P., Ni, P., Kirshblum, S., C. , . . . Jette, A., M. . (2016). Clinical Interpretation of the Spinal Cord Injury Functional Index (Sci-Fi). Journal of Spinal Cord Medicine, 39(5), 527-534. http://www.maneyonline.com/doi/abs/10.1080/10790268.2015.1133483

Janssen, S.J., Pereira, N.R.P., Raskin, K.A., Ferrone, M.L., Hornicek, F.J., van Dijk, C.N., . . . Schwab, J.H. (2016). A Comparison of Questionnaires for Assessing Physical Function in Patients with Lower Extremity Bone Metastases. Journal of Surgical Oncology, 114(6), 691-696. https://www.ncbi.nlm.nih.gov/pubmed/27511611

Katzan, I.L., Thompson, N., & Uchino, K. (2016). Innovations in Stroke: The Use of PROMIS and Neuroqol Scales in Clinical Stroke Trials. Stroke, 47(2), e27-30. http://dx.doi.org/10.1161/strokeaha.115.011377

Kelly, V.E., Morgan, S.J., Amtmann, D., Salem, R., & Hafner, B.J. (2016). Association of Self-Reported Cognitive Concerns with Mobility in People with Lower Limb Loss. Disability and Rehabilitation, Epub ahead of print, 1-8. https://www.ncbi.nlm.nih.gov/pubmed/27756174

Kozlowski, A.J., Cella, D., Nitsch, K.P., & Heinemann, A.W. (2016). Evaluating Individual Change with the Quality of Life in Neurological Disorders (Neuro-Qol) Short Forms. Archives of Physical Medicine and Rehabilitation, 97(4), 650-654. http://dx.doi.org/10.1016/j.apmr.2015.12.010

Lai, J.-S., Beaumont, J.L., Jensen, S.E., Kaiser, K., Van Brunt, D.L., Kao, A.H., & Chen, S.-Y. (2016). An Evaluation of Health-Related Quality of Life in Patients with Systemic Lupus Erythematosus Using PROMIS and Neuro-Qol. Clinical Rheumatology, Epub ahead of print, 1-8. https://www.ncbi.nlm.nih.gov/pubmed/27848056

Lai, J.-S., Hammel, J., Jerousek, S., Goldsmith, A., Miskovic, A., Baum, C., . . . Heinemann, A.W. (2016). An Item Bank to Measure Systems, Services, and Policies: Environmental Factors Affecting People with Disabilities. Archives of Physical Medicine and Rehabilitation, Epub ahead of print. https://www.ncbi.nlm.nih.gov/pubmed/27422348

Miller, D.M., Bethoux, F., Victorson, D., Nowinski, C.J., Buono, S., Lai, J.-S., . . . Cella, D. (2016). Validating Neuro-QoL Short Forms and Targeted Scales with People Who Have Multiple Sclerosis. Multiple Sclerosis Journal, 22(6), 830-841. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4740288/

Morgan, S.J., Kelly, V.E., Salem, R., & Hafner, B.J. (2016). Self-Reported Cognitive Concerns in People with Lower Limb Loss. Archives of physical and medical rehabilitation, 97(6), 912–918. http://dx.doi.org/10.1016/j.apmr.2016.01.010

Nowinski, C.J., Siderowf, A., Simuni, T., Wortman, C., Moy, C., & Cella, D. (2016). Neuro‐Qol Health‐Related Quality of Life Measurement System: Validation in Parkinson's Disease. Movement Disorders, 31(5), 725-733. http://dx.doi.org/10.1002/mds.26546

Rosenthal, L.J., Francis, B.A., Beaumont, J.L., Cella, D., Berman, M.D., Maas, M.B., . . . Naidech, A.M. (2016). Agitation, Delirium and Cognitive Outcomes in Intracerebral Hemorrhage. Psychosomatics, 58(1), 19-27. https://www.ncbi.nlm.nih.gov/pubmed/27665997

Shulman, L.M., Armstrong, M., Ellis, T., Gruber-Baldini, A., Horak, F., Nieuwboer, A., . . . Martinez-Martin, P. (2016). Disability Rating Scales in Parkinson's Disease: Critique and Recommendations. Movement Disorders, 31(10), 1455-1465. http://dx.doi.org/10.1002/mds.26649

Tulsky, D.S., Kisala, P.A., Victorson, D., Carlozzi, N., Bushnik, T., Sherer, M., . . . Cella, D. (2016). Tbi-Qol: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury. Journal of Head Trauma Rehabilitation, 31(1), 40-51. 10.1097/htr.0000000000000131

van Wulfften Palthe, O.D.R., Janssen, S.J., Wunder, J.S., Ferguson, P.C., Wei, G., Rose, P.S., . . . Healey, J.H. (2016). What Questionnaires to Use When Measuring Quality of Life in Sacral Tumor Patients? The Updated Sacral Tumor Survey. Spine Journal, Epub ahead of print. https://www.ncbi.nlm.nih.gov/pubmed/27856381

Wilson, C.S., Forchheimer, M., Heinemann, A.W., Warren, A.M., & McCullumsmith, C. (2016). Assessment of the Relationship of Spiritual Well-Being to Depression and Quality of Life for Persons with Spinal Cord Injury. Disability and Rehabilitation, 39(5), 491-496. http://dx.doi.org/10.3109/09638288.2016.1152600

Updated 12/31/16

Beier, M., Amtmann, D., & Ehde, D.M. (2015). Beyond Depression: Predictors of Self-Reported Cognitive Function in Adults Living with Ms. Rehabilitation Psychology, 60(3), 254-262. http://dx.doi.org/10.1037/rep0000045

Bertisch, H., Kalpakjian, C.Z., Kisala, P.A., & Tulsky, D.S. (2015). Measuring Positive Affect and Well-Being after Spinal Cord Injury: Development and Psychometric Characteristics of the Sci-Qol Positive Affect and Well-Being Bank and Short Form. Journal of Spinal Cord Medicine, 38(3), 356-365. http://dx.doi.org/10.1179/2045772315Y.0000000024

Han, J.J., Kurillo, G., Abresch, R.T., de Bie, E., Nicorici Lewis, A., & Bajcsy, R. (2015). Upper Extremity 3d Reachable Workspace Analysis in Dystrophinopathy Using Kinect. Muscle and Nerve, 52(3), 344-355. http://dx.doi.org/10.1002/mus.24567

Heinemann, A.W., Kisala, P.A., Hahn, E.A., & Tulsky, D.S. (2015). Development and Psychometric Characteristics of the Sci-Qol Ability to Participate and Satisfaction with Social Roles and Activities Item Banks and Short Forms. Journal of Spinal Cord Medicine, 38(3), 397-408. http://dx.doi.org/10.1179/2045772315y.0000000028

Hughes, A.J., Beier, M., Hartoonian, N., Turner, A.P., Amtmann, D., & Ehde, D.M. (2015). Self-Efficacy as a Longitudinal Predictor of Perceived Cognitive Impairment in Individuals with Multiple Sclerosis. Archives of Physical Medicine and Rehabilitation, 96(5), 913–919. http://dx.doi.org/10.1016/j.apmr.2015.01.008

Kisala, P.A., Tulsky, D.S., Kalpakjian, C.Z., Heinemann, A.W., Pohlig, R.T., Carle, A., & Choi, S.W. (2015). Measuring Anxiety after Spinal Cord Injury: Development and Psychometric Characteristics of the Sci-Qol Anxiety Item Bank and Linkage with GAD-7. Journal of Spinal Cord Medicine, 38(3), 315-325. http://dx.doi.org/10.1179/2045772315Y.0000000029

Kisala, P.A., Tulsky, D.S., Pace, N., Victorson, D., Choi, S.W., & Heinemann, A.W. (2015). Measuring Stigma after Spinal Cord Injury: Development and Psychometric Characteristics of the Sci-Qol Stigma Item Bank and Short Form. Journal of Spinal Cord Medicine, 38(3), 386-396. http://dx.doi.org/10.1179/1079026815Z.000000000410

Kisala, P.A., Victorson, D., Pace, N., Heinemann, A.W., Choi, S.W., & Tulsky, D.S. (2015). Measuring Psychological Trauma after Spinal Cord Injury: Development and Psychometric Characteristics of the Sci-Qol Psychological Trauma Item Bank and Short Form. Journal of Spinal Cord Medicine, 38(3), 326-334. http://dx.doi.org/10.1179/2045772315Y.0000000022

Kozlowski, A.J., Singh, R., Victorson, D., Miskovic, A., Lai, J.-S., Harvey, R.L., . . . Heinemann, A.W. (2015). Agreement between Responses from Community-Dwelling Persons with Stroke and Their Proxies on the NIH Neurological Quality of Life (Neuro-Qol) Short Forms. Archives of Physical Medicine and Rehabilitation, 96(11), 1986–1992. http://dx.doi.org/10.1016/j.apmr.2015.07.005

Lai, J.-S., Nowinski, C.J., Zelko, F., Wortman, K., Burns, J., Nordli, D.R., & Cella, D. (2015). Validation of the Neuro-Qol Measurement System in Children with Epilepsy. Epilepsy and Behavior, 46, 209–214. http://dx.doi.org/10.1016/j.yebeh.2015.02.038

Meehan, W., Taylor, A., Berkner, P., Sandstrom, N., Peluso, W.M., Kurtz, M., . . . Mannix, R. (2015). Division III Collision Sports Are Not Associated with Neurobehavioral Quality-of-Life. Journal of Neurotrauma, 33(2), 254-259. http://dx.doi.org/10.1089/neu.2015.3930

Naidech, A., Polnaszek, K., Berman, M., & Voss, J. (2015). Hematoma Locations Predicting Delirium Symptoms after Intracerebral Hemorrhage. Neurocritical Care, 1-7. http://dx.doi.org/10.1007/s12028-015-0210-1

Naidech, A.M., Beaumont, J.L., Berman, M., Francis, B., Liotta, E., Maas, M.B., . . . Cella, D. (2015). Dichotomous "Good Outcome" Indicates Mobility More Than Cognitive or Social Quality of Life. Critical Care Medicine, 43(8), 1654-1659. http://dx.doi.org/10.1097/CCM.0000000000001082

Sangha, R.S., Caprio, F.Z., Askew, R., Corado, C., Bernstein, R., Curran, Y., . . . Prabhakaran, S. (2015). Quality of Life in Patients with Tia and Minor Ischemic Stroke. Neurology, 85(22), 1957-1963. http://www.neurology.org/content/85/22/1957

Tulsky, D.S., Kisala, P.A., Kalpakjian, C.Z., Bombardier, C.H., Pohlig, R.T., Heinemann, A.W., . . . Choi, S.W. (2015). Measuring Depression after Spinal Cord Injury: Development and Psychometric Characteristics of the Sci-Qol Depression Item Bank and Linkage with PHQ-9. Journal of Spinal Cord Medicine, 38(3), 335-346. http://dx.doi.org/10.1179/2045772315y.0000000020

Tulsky, D.S., Kisala, P.A., Lai, J.-S., Carlozzi, N., Hammel, J., & Heinemann, A.W. (2015). Developing an Item Bank to Measure Economic Quality of Life for Individuals with Disabilities. Archives of Physical Medicine and Rehabilitation, 96(4), 604-613. http://dx.doi.org/10.1016/j.apmr.2014.02.030

Tulsky, D.S., Kisala, P.A., Victorson, D., Carlozzi, N., Bushnik, T., Sherer, M., . . . Cella, D. (2015). Tbi-Qol: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury. Journal of Head Trauma Rehabilitation, 31(1):.(1), 40-51. 10.1097/htr.0000000000000131

Tulsky, D.S., Kisala, P.A., Victorson, D., Choi, S.W., Gershon, R., Heinemann, A.W., & Cella, D. (2015). Methodology for the Development and Calibration of the Sci-Qol Item Banks. Journal of Spinal Cord Medicine, 38(3), 270-287. http://dx.doi.org/10.1179/2045772315Y.0000000034

Tulsky, D.S., Kisala, P.A., Victorson, D., Tate, D.G., Heinemann, A.W., Charlifue, S., . . . Cella, D. (2015). Overview of the Spinal Cord Injury – Quality of Life (Sci-Qol) Measurement System. Journal of Spinal Cord Medicine, 38(3), 257-269. http://dx.doi.org/10.1179/2045772315Y.0000000023

Victorson, D., Peterman, A., Bode, R., Buono, S., Mueller, A., & Cella, D. (2015). Development and Clinical Validation of a New Item Bank and Short Form of Emotional and Behavioral Dyscontrol for Major Neurological Disorders: Results from the Neuro-Qol Study. Journal of Neurological Disorders and Stroke, 3(2), 1098. http://www.jscimedcentral.com/NeurologicalDisorders/neurologicaldisorders-3-1098.pdf

Victorson, D., Tulsky, D.S., Kisala, P.A., Kalpakjian, C.Z., Weiland, B., & Choi, S.W. (2015). Measuring Resilience after Spinal Cord Injury: Development, Validation and Psychometric Characteristics of the Sci-Qol Resilience Item Bank and Short Form. Journal of Spinal Cord Medicine, 38(3), 366-376. http://dx.doi.org/10.1179/2045772315Y.0000000016

Updated 8/25/16

Carlozzi, N.E., Victorson, D., Sung, V., Beaumont, J.L., Cheng, W., Gorin, B., . . . Frank, S. (2014). Hd-PRO-Triad™ Validation: A Patient-Reported Instrument for the Symptom Triad of Huntington Disease. Tremor and other Hyperkinetic Movements, 4(223), 1-2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3990832/

Cook, K.F., Victorson, D.E., Cella, D., Schalet, B.D., & Miller, D. (2014). Creating Meaningful Cut-Scores for Neuro-Qol Measures of Fatigue, Physical Functioning, and Sleep Disturbance Using Standard Setting with Patients and Providers. Quality of Life Research, 24(3), 1-15. http://dx.doi.org/10.1007/s11136-014-0790-9

Correia, H., Pérez, B., Arnold, B., Wong, A.W.K., Lai, J.S., Kallen, M., & Cella, D. (2014). Spanish Translation and Linguistic Validation of the Quality of Life in Neurological Disorders (Neuro-Qol) Measurement System. Quality of Life Research, 24(3), 753-756. http://dx.doi.org/10.1007/s11136-014-0786-5

Kraft, G.H., Amtmann, D., Bennett, S.E., Finlayson, M., Sutliff, M.H., Tullman, M., . . . Rabinowicz, A.L. (2014). Assessment of Upper Extremity Function in Multiple Sclerosis: Review and Opinion. Postgraduate Medicine, 126(5), 102-108. http://dx.doi.org/10.3810/pgm.2014.09.2803

Lai, J.-S., Cella, D., Yanez, B., & Stone, A. (2014). Linking Fatigue Measures on a Common Reporting Metric. Journal of Pain and Symptom Management, 48(4), 639-648. http://dx.doi.org/10.1016/j.jpainsymman.2013.12.236

Naidech, A.M., Beaumont, J.L., Berman, M., Liotta, E., Maas, M., Prabhakaran, S., . . . Cella, D. (2014). Web-Based Assessment of Outcomes after Subarachnoid and Intracerebral Hemorrhage: A New Patient Centered Option for Outcomes Assessment. Neurocritical Care, 23(1), 22-27. http://dx.doi.org/10.1007/s12028-014-0098-1

Theeke, L., Horstman, P., Mallow, J., Lucke-Wold, N., Culp, S., Domico, J., & Barr, T. (2014). Quality of Life and Loneliness in Stroke Survivors Living in Appalachia. Journal of Neuroscience Nursing, 46(6), E3-E15 http://dx.doi.org/10.1097/JNN.0000000000000097

Tickle-Degnen, L., Saint-Hilaire, M., Thomas, C.A., Habermann, B., Sprague Martinez, L.S., Terrin, N., . . . Naumova, E.N. (2014). Emergence and Evolution of Social Self-Management of Parkinsons Disease: Study Protocol for a 3-Year Prospective Cohort Study. BMC Neurology, 14(1). http://www.biomedcentral.com/1471-2377/14/95

Toyinbo, P.A., Vanderploeg, R.D., Donnell, A.J., Mutolo, S.A., Cook, K.F., Kisala, P.A., & Tulsky, D.S. (2016). Development and Initial Validation of Military Deployment-Related Tbi Quality-of-Life Item Banks. Journal of Head Trauma Rehabilitation, 31(1), 52–61. http://dx.doi.org/10.1097/HTR.0000000000000089

Victorson, D., Cavazos, J.E., Holmes, G.L., Reder, A.T., Wojna, V., Nowinski, C., . . . Cella, D. (2014). Validity of the Neurology Quality-of-Life (Neuro-Qol) Measurement System in Adult Epilepsy. Epilepsy and Behavior, 31(0), 77-84. http://dx.doi.org/10.1016/j.yebeh.2013.11.008

updated 8/25/16

Carlozzi, N.E., & Tulsky, D.S. (2013). Identification of Health-Related Quality of Life (HRQOL) Issues Relevant to Individuals with Huntington Disease. Journal of Health Psychology, 18(2), 212-225. http://dx.doi.org/10.1177/1359105312438109

Marfeo, E.E., Ni, P., Haley, S.M., Jette, A.M., Bogusz, K., Meterko, M., . . . Rasch, E.K. (2013). Development of an Instrument to Measure Behavioral Health Function for Work Disability: Item Pool Construction and Factor analysis. Archives of Physical Medicine and Rehabilitation, 94(9), 1670-1678. http://dx.doi.org/10.1016/j.apmr.2013.03.013

Molina, Y., Choi, S.W., Cella, D., & Rao, D. (2013). The Stigma Scale for Chronic Illnesses 8-Item Version (SSCI-8): Development, Validation and Use across Neurological Conditions. International Journal of Behavioral Medicine, 20(3), 450-460. http://dx.doi.org/10.1007/s12529-012-9243-4.

Naidech, A.M., Beaumont, J.L., Rosenberg, N.F., Maas, M.B., Kosteva, A.R., Ault, M.L., . . . Wesley, E. (2013). Intracerebral Hemorrhage and Delirium Symptoms: Length of Stay, Function and Quality of Life in a 114-Patient Cohort. American Journal of Respiratory and Critical Care Medicine, 188(11), 1331-1337. http://dx.doi.org/10.1164/rccm.201307-1256OC

Salsman, J., Victorson, D., Choi, S., Peterman, A., Heinemann, A., Nowinski, C., & Cella, D. (2013). Development and Validation of the Positive Affect and Well-Being Scale for the Neurology Quality of Life (Neuro-Qol) Measurement System. Quality of Life Research, 22(9), 2569-2580. http://dx.doi.org/10.1007/s11136-013-0382-0

van der Beek, K.M., Bos, I., Middel, B., & Wynia, K. (2013). Experienced Stigmatization Reduced Quality of Life of Patients with a Neuromuscular Disease: A Cross-Sectional Study. Clinical Rehabilitation, 27(11), 1029-1038. http://dx.doi.org/10.1177/0269215513487234

 

Updated 8/26/16

Bode, R.K., Heinemann, A.W., Butt, Z., Stallings, J., Taylor, C., Rowe, M., & Roth, E.J. (2010). Development and Validation of Participation and Positive Psychologic Function Measures for Stroke Survivors. Archives of Physical Medicine and Rehabilitation, 91(9), 1347-1356. http://dx.doi.org/10.1016/j.apmr.2010.06.020

Carlozzi, N.E., Tulsky, D.S., & Kisala, P.A. (2011). Traumatic Brain Injury Patient-Reported Outcome Measure: Identification of Health-Related Quality-of-Life Issues Relevant to Individuals with Traumatic Brain Injury. Archives of Physical Medicine and Rehabilitation, 92(10, Supplement), S52-S60. http://dx.doi.org/10.1016/j.apmr.2010.12.046

Cella, D., Lai, J.S., Nowinski, C., Victorson, D., Peterman, A., Miller, D., . . . Moy, C. (2012). Neuro-Qol: Brief Measures of Health-Related Quality of Life for Clinical Research in Neurology. Neurology, 78, 1860-1867. http://dx.doi.org/10.1212/WNL.0b013e318258f744

Cella, D., Nowinski, C., Peterman, A., Victorson, D., Miller, D., Lai, J.-S., & Moy, C. (2011). The Neurology Quality-of-Life Measurement Initiative. Archives of Physical Medicine and Rehabilitation, 92(10 Suppl), S28-36. http://dx.doi.org/10.1016/j.apmr.2011.01.025

Gershon, R., Lai, J., Bode, R., Choi, S., Moy, C., Bleck, T., . . . Cella, D. (2012). Neuro-Qol: Quality of Life Item Banks for Adults with Neurological Disorders: Item Development and Calibrations Based Upon Clinical and General Population Testing. Quality of Life Research, 21(3), 475-486. http://dx.doi.org/10.1007/s11136-011-9958-8

Haley, S.M., Ni, P., Lai, J.-S., Tian, F., Coster, W.J., Jette, A.M., . . . Cella, D. (2011). Linking the Activity Measure for Post Acute Care and the Quality of Life Outcomes in Neurological Disorders. Archives of Physical Medicine and Rehabilitation, 92(10, Supplement), S37-S43. http://dx.doi.org/10.1016/j.apmr.2011.01.026

Heinemann, A.W., Tulsky, D., Dijkers, M., Brown, M., Magasi, S., Gordon, W., & DeMark, H. (2010). Issues in Participation Measurement in Research and Clinical Applications. Archives of Physical Medicine and Rehabilitation, 91(9, Supplement 1), S72-S76. http://dx.doi.org/10.1016/j.apmr.2009.11.031

Lai, J.S., Nowinski, C., Victorson, D., Bode, R., Podrabsky, T., McKinney, N., . . . Cella, D. (2012). Quality-of-Life Measures in Children with Neurological Conditions: Pediatric Neuro-Qol. Neurorehabilitation and Neural Repair, 26(1), 36-47. http://dx.doi.org/10.1177/1545968311412054

Lynch, E.B., Butt, Z., Heinemann, A., Victorson, D., Nowinski, C.J., Perez, L., & Cella, D. (2008). A Qualitative Study of Quality of Life after Stroke: The Importance of Social Relationships. Journal of Rehabilitation Medicine, 40(7), 518-523. http://dx.doi.org/10.2340/16501977-0203

Nowinski, C.J., Victorson, D., Cavazos, J.E., Gershon, R., & Cella, D. (2010). Neuro-Qol and the NIH Toolbox: Implications for Epilepsy. Therapy, 7(5), 533-540. http://dx.doi.org/10.2217/thy.10.55

Perez, L., Huang, J., Jansky, L., Nowinski, C., Victorson, D., Peterman, A., & Cella, D. (2007). Using Focus Groups to Inform the Neuro-Qol Measurement Tool: Exploring Patient-Centered, Health-Related Quality of Life Concepts across Neurological Conditions. Journal of Neuroscience Nursing, 39(6), 342-353. http://journals.lww.com/jnnonline/Fulltext/2007/12000/Using_Focus_Groups_To_Inform_the_Neuro_QOL.5.aspx

Quatrano, L.A., & Cruz, T.H. (2011). Future of Outcomes Measurement: Impact on Research in Medical Rehabilitation and Neurologic Populations. Archives of Physical Medicine and Rehabilitation, 92(10, Supplement), S7-S11. http://dx.doi.org/10.1016/j.apmr.2010.08.032

Rao, D., Choi, S.W., Victorson, D., Bode, R., Peterman, A., Heinemann, A., & Cella, D. (2009). Measuring Stigma across Neurological Conditions: The Development of the Stigma Scale for Chronic Illness (SSCI). Quality of Life Research, 18(5), 585-595. http://dx.doi.org/10.1007/s11136-009-9475-1

Tulsky, D.S., Carlozzi, N.E., & Cella, D. (2011). Advances in Outcomes Measurement in Rehabilitation Medicine: Current Initiatives from the National Institutes of Health and the National Institute on Disability and Rehabilitation Research. Archives of Physical Medicine and Rehabilitation, 92(10, Supplement), S1-S6. http://dx.doi.org/10.1016/j.apmr.2011.07.202

Tulsky, D.S., Jette, A.M., Kisala, P.A., Kalpakjian, C., Dijkers, M.P., Whiteneck, G., . . . Zanca, J. (2012). Spinal Cord Injury-Functional Index: Item Banks to Measure Physical Functioning in Individuals with Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation, 93(10), 1722-1732. http://dx.doi.org/10.1016/j.apmr.2012.05.007

Tulsky, D.S., Kisala, P.A., Victorson, D., Tate, D., Heinemann, A.W., Amtmann, D., & Cella, D. (2011). Developing a Contemporary Patient-Reported Outcomes Measure for Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation, 92(10, Supplement), S44-S51. http://dx.doi.org/10.1016/j.apmr.2011.04.024

Wilde, E.A., Whiteneck, G.G., Bogner, J., Bushnik, T., Cifu, D.X., Dikmen, S., . . . von Steinbuechel, N. (2010). Recommendations for the Use of Common Outcome Measures in Traumatic Brain Injury Research. Archives of Physical Medicine and Rehabilitation, 91(11), 1650-1660.e1617. http://dx.doi.org/10.1016/j.apmr.2010.06.033

Updated 8/25/16

Abel H, Kephart G, Packer T, Warner G. Discordance in Utility Measurement in Persons with Neurological Conditions: A Comparison of the SF-6D and the HUI3. Value Health. 2017. https://www.ncbi.nlm.nih.gov/pubmed/28964449.

Apple AC, Ryals AJ, Alpert KI, et al. Subtle hippocampal deformities in breast cancer survivors with reduced episodic memory and self-reported cognitive concerns. Neuroimage Clin. 2017. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5369871/.

Beckmann NB, Miller WP, Dietrich MS, Orchard PJ. Quality of life among boys with adrenoleukodystrophy following hematopoietic stem cell transplant. Child Neuropsychology. 2017:1-13. https://www.ncbi.nlm.nih.gov/pubmed/28934891.

Bertisch H, Rivara FP, Kisala PA, et al. Psychometric evaluation of the pediatric and parent-proxy Patient-Reported Outcomes Measurement Information System and the Neurology and Traumatic Brain Injury Quality of Life measurement item banks in pediatric traumatic brain injury. Qual. Life Res. 2017:1-13. https://www.ncbi.nlm.nih.gov/pubmed/28271316.

Carlozzi NE, Hahn EA, Goodnight SM, et al. Patient-Reported Outcome Measures in Huntington Disease: Quality of Life in Neurological Disorders (Neuro-QoL) Social Functioning Measures. Psychol. Assess. 2017. https://www.ncbi.nlm.nih.gov/pubmed/28557480.

Carlozzi NE, Ready RE, Frank S, et al. 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. 2017. https://www.ncbi.nlm.nih.gov/pubmed/28556412.

Cook KF, Kallen MA, Coon CD, Victorson D, Miller DM. Idio Scale Judgment: evaluation of a new method for estimating responder thresholds. Qual. Life Res. 2017. https://www.ncbi.nlm.nih.gov/pubmed/28624901.

Gauthier LV, Kane C, Borstad A, et al. Video Game Rehabilitation for Outpatient Stroke (VIGoROUS): protocol for a multi-center comparative effectiveness trial of in-home gamified constraint-induced movement therapy for rehabilitation of chronic upper extremity hemiparesis. BMC Neurol. 2017;17:109. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5465449/.

Hahn EA, Downing NR, Stout JC, et al. Understanding the need for assistance with survey completion in people with Huntington disease. Qual. Life Res. 2017. https://www.ncbi.nlm.nih.gov/pubmed/29214414.

Howland M, Allan KC, Carlton CE, Tatsuoka C, Smyth KA, Sajatovic M. Patient-rated versus proxy-rated cognitive and functional measures in older adults. Patient Relat Outcome Meas. 2017;8:33-42. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5358991/.

Kellermann TS, Mueller M, Carter EG, et al. Prediction of specific depressive symptom clusters in youth with epilepsy: The NDDI-E-Y versus Neuro-QOL SF. Epilepsia. 2017. https://www.ncbi.nlm.nih.gov/pubmed/28597917.

Kozlowski AJ, Fabian M, Lad D, Delgado A. Feasibility and safety of a powered exoskeleton for assisted walking for persons with multiple sclerosis: a single-group preliminary study. Arch. Phys. Med. Rehabil. 2017. https://www.ncbi.nlm.nih.gov/pubmed/28315666.

Kratz AL, Braley TJ, Foxen-Craft E, Scott E, Murphy Iii J, Murphy SL. How do pain, fatigue, depressive, and cognitive symptoms relate to well-being and social and physical functioning in the daily lives of individuals with multiple sclerosis? Arch. Phys. Med. Rehabil. 2017. https://www.ncbi.nlm.nih.gov/pubmed/28729170.

Lai J, Beaumont JL, Jensen S. Quality of Life for Patients with Neurofibromatosis Type 1 Associated Plexiform Neurofibromas (PNF). Value Health. 2017;20(9):A727. http://dx.doi.org/10.1016/j.jval.2017.08.1970.

Lai J-S, Goodnight S, Downing NR, et al. Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures. Qual. Life Res. 2017. https://www.ncbi.nlm.nih.gov/pubmed/29222609.

Miller, D.M., Bethoux, F., Victorson, D., Nowinski, C.J., Buono, S., Lai, J.-S., . . . Cella, D. (2016). Validating Neuro-QoL Short Forms and Targeted Scales with People Who Have Multiple Sclerosis. Multiple Sclerosis Journal, 22(6), 830-841. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4740288/

Nowinski CJ, Miller DM, Cella D. Evolution of Patient-Reported Outcomes and Their Role in Multiple Sclerosis Clinical Trials. Neurotherapeutics. 2017. https://www.ncbi.nlm.nih.gov/pubmed/28913785.

Reeves MJ, Hughes AK, Woodward AT, et al. Improving transitions in acute stroke patients discharged to home: the Michigan stroke transitions trial (MISTT) protocol. BMC Neurol. 2017;17:115. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474297/.

Schwartz CE, Michael W, Zhang J, Rapkin BD, Sprangers MAG. Assessing reserve-building pursuits and person characteristics: psychometric validation of the Reserve-Building Measure. Qual. Life Res. 2017. https://www.ncbi.nlm.nih.gov/pubmed/28879537.

Stockdale L, Coyne SM. Video Game Addiction in Emerging Adulthood: Cross-Sectional Evidence of Pathology in Video Game Addicts as Compared to Matched Healthy Controls. J. Affect. Disord. 2017. https://www.ncbi.nlm.nih.gov/pubmed/?term=PMID28841491.

Tran TA, Williams LM, Bui D, Anthonisen C, Poltavskiy E, Szabo RM. Prospective Pilot Study Comparing Pre- and Postsurgical CTSAQ and Neuro-QoL Questionnaire with Median Nerve High-Resolution Ultrasound Cross-Sectional Areas. J. Hand Surg. 2017. https://www.ncbi.nlm.nih.gov/pubmed/28951102.

Yorkston K, Baylor C, Mach H. Factors Associated With Communicative Participation in Amyotrophic Lateral Sclerosis. J. Speech Lang. Hear. Res. 2017;60(6S):1791-1797. https://www.ncbi.nlm.nih.gov/pubmed/28655040.

 

 

Updated 1/23/18