Publications

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. Rehabilitation Psychology, 65(2), 113-121. https://www.ncbi.nlm.nih.gov/pubmed/31961169

Capella-Peris, C., Cosgrove, M. M., Chrismer, I. C., Emile-Backer, M., Razaqyar, M. S., Elliott, J. S., . . . Meilleur, K. G. (2020). Mixed methods analysis of Health-Related Quality of Life in ambulant individuals affected with RYR1-related myopathies pre-post-N-acetylcysteine therapy. Quality of Life Research, 29(6), 1641-1653. https://pubmed.ncbi.nlm.nih.gov/32040747/

Cassisi, J. E., Ross, E. J., Vivier, H., James, N., & Su, L.-C. (2020). The Impact of a Gluten-Free Diet on Celiac Disease: A Comprehensive Evaluation of Two Cases Using NIH Patient Reported Outcome Measures (PROMIS, NTCB, and Neuro-QoL). Journal of Clinical Psychology in Medical Settings, 1-10. https://www.ncbi.nlm.nih.gov/pubmed/31970587

De Marchi, F., Berry, J. D., Chan, J., Caldwell, S., Ellrodt, A., Scalia, J., . . . Paganoni, S. (2020). Patient reported outcome measures (PROMs) in amyotrophic lateral sclerosis. Journal of Neurology, 267(6), 1754-1759. https://pubmed.ncbi.nlm.nih.gov/32125520/

Fox, R. S., Peipert, J. D., Vera-Llonch, M., Phillips, G., & Cella, D. (2020). PROMIS® and Neuro-QoL(TM) measures are valid measures of health-related quality of life among patients with familial chylomicronemia syndrome. Expert Review of Cardiovascular Therapy, 18(4), 231-238. https://pubmed.ncbi.nlm.nih.gov/32223345/

Glanz, B. I., Zurawski, J., Gonzalez, C. T., Shamah, R., Ratajska, A., Chitnis, T., . . . Healy, B. C. (2020). Comparison of health-related quality of life across treatment groups in individuals with multiple sclerosis. Multiple sclerosis and related disorders, 40, 101944. https://pubmed.ncbi.nlm.nih.gov/32007653/

Hanmer, J., Jensen, R. E., Rothrock, N., & HealthMeasures, T. (2020). A reporting checklist for HealthMeasures' patient-reported outcomes: ASCQ-Me, Neuro-QoL, NIH Toolbox, and PROMIS. Journal of patient-reported outcomes, 4(1), 21-21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7096598/

Karaa, A., Haas, R., Goldstein, A., Vockley, J., & Cohen, B. H. (2020). A randomized crossover trial of elamipretide in adults with primary mitochondrial myopathy. J Cachexia Sarcopenia Muscle. https://pubmed.ncbi.nlm.nih.gov/32096613/

Knisely, M. R., Pugh, N., Kroner, B., Masese, R., Gordeuk, V., King, A. A., . . . Treadwell, M. (2020). Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium. American Journal of Hematology. https://pubmed.ncbi.nlm.nih.gov/32449965/

Mioton, L. M., Dumanian, G. A., Shah, N., Qiu, C. S., Ertl, W. J., Potter, B. K., . . . Jordan, S. W. (2020). Targeted Muscle Reinnervation Improves Residual Limb Pain, Phantom Limb Pain, and Limb Function: A Prospective Study of 33 Major Limb Amputees. Clinical Orthopaedics and Related Research. https://pubmed.ncbi.nlm.nih.gov/32452928/

Rhudy, L. M., Wells-Pittman, J., & Flemming, K. D. (2020). Psychosocial Sequelae of Stroke in Working-Age Adults: A Pilot Study. Journal of Neuroscience Nursing, 52(4), 192-199. https://pubmed.ncbi.nlm.nih.gov/32511173/

Schwartz, C. E., Stucky, B. D., Michael, W., & Rapkin, B. D. (2020). Does response shift impact interpretation of change even among scales developed using item response theory? Journal of patient-reported outcomes, 4(1), 8-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6977794/

Last updated: 7/13/2020

Andersen, H., Mantegazza, R., Wang, J. J., O’Brien, F., Patra, K., Howard, J. F., . . . REGAIN Study Group. (2019). Eculizumab improves fatigue in refractory generalized myasthenia gravis. Quality of Life Research. https://www.ncbi.nlm.nih.gov/pubmed/30905021

Carlozzi, N. E., Boileau, N. R., Chou, K. L., Ready, R. E., Cella, D., McCormack, M. K., . . . Dayalu, P. (2019). HDQLIFE and Neuro-QoL Physical Function Measures: Responsiveness in Persons With Huntington's Disease. Movement Disorders. https://www.ncbi.nlm.nih.gov/pubmed/31724237

Carlozzi, N. E., Boileau, N. R., Paulsen, J. S., Downing, N. R., Ready, R., Perlmutter, J. S., . . . Lai, J.-S. (2019). Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD). Quality of Life Research. 10.1https://www.ncbi.nlm.nih.gov/pubmed/31853881

Carlozzi, N. E., Goodnight, S., Kratz, A. L., Stout, J. C., McCormack, M. K., Paulsen, J. S., . . . Ready, R. E. (2019). Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in Persons with Huntington Disease. Journal of Huntington's Disease. https://www.ncbi.nlm.nih.gov/pubmed/31424415

Coe, S., Cossington, J., Collett, J., Soundy, A., Izadi, H., Ovington, M., . . . Cavey, A. (2019). A randomised double-blind placebo-controlled feasibility trial of flavonoid-rich cocoa for fatigue in people with relapsing and remitting multiple sclerosis. Journal of Neurology, Neurosurgery and Psychiatry. https://www.ncbi.nlm.nih.gov/pubmed/30833449

Cohen, M. L., Weatherford, S., & Nandakumar, R. (2019). How Normal Are "Normal" Errors of Language and Cognition? Journal of Speech, Language, and Hearing Research. https://www.ncbi.nlm.nih.gov/pubmed/30986112

Donnelly, K. Z., Baker, K., Pierce, R., St. Ivany, A. R., Barr, P. J., & Bruce, M. L. (2019). A retrospective study on the acceptability, feasibility, and effectiveness of LoveYourBrain Yoga for people with traumatic brain injury and caregivers. Disability and Rehabilitation. https://www.ncbi.nlm.nih.gov/pubmed/31577456

Gabel, N., Altshuler, D. B., Brezzell, A., Briceño, E. M., Boileau, N. R., Miklja, Z., . . . Hervey-Jumper, S. L. (2019). Health Related Quality of Life in Adult Low and High-Grade Glioma Patients Using the National Institutes of Health Patient Reported Outcomes Measurement Information System (PROMIS) and Neuro-QOL Assessments. Frontiers in Neurology, 10, 212-212. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6428723/

Gibbons, S. W., Ross, A., Wehrlen, L., Klagholz, S., & Bevans, M. (2019). Enhancing the cancer caregiving experience: Building resilience through role adjustment and mutuality. European Journal of Oncology Nursing, 43, 101663. https://www.ncbi.nlm.nih.gov/pubmed/31606005

Harmon, K. A., Day, A. M., Hammill, A. M., Pinto, A. L., McCulloch, C. E., Comi, A. M., . . . Wilfong, A. A. (2019). Quality of Life in Children With Sturge-Weber Syndrome. Pediatric Neurology. https://www.ncbi.nlm.nih.gov/pubmed/31526690

Heinemann, A. W., Kisala, P. A., Boulton, A. J., Sherer, M., Sander, A. M., Chiaravalloti, N., . . . Tulsky, D. S. (2019). Development and Calibration of the TBI-QOL Ability to Participate in Social Roles and Activities and TBI-QOL Satisfaction with Social Roles and Activities Item Banks and Short Forms. Archives of Physical Medicine and Rehabilitation. https://www.ncbi.nlm.nih.gov/pubmed/31473208

Karşıdağ, S., Çınar, N., Şahin, Ş., Kotevoğlu, N., & Ateş, M. F. (2019). Validation and reliability study of the Turkish version of the Neuroquality of Life (Neuro-QoL)-Stigma Scale for neurological disorders. Turkish journal of medical sciences, 49(3). https://www.ncbi.nlm.nih.gov/pubmed/31023004

Kisala, P. A., Bushnik, T., Boulton, A. J., Hanks, R. A., Kolakowsky-Hayner, S. A., & Tulsky, D. S. (2019). Measuring fatigue in TBI: development of the TBI-QOL fatigue item bank and short form. Journal of Head Trauma Rehabilitation, 34(5), 289-297. https://www.ncbi.nlm.nih.gov/pubmed/31498228

Kletenik, I., Alvarez, E., Honce, J. M., Valdez, B., Vollmer, T. L., & Medina, L. D. (2019). Subjective cognitive concern in multiple sclerosis is associated with reduced thalamic and cortical gray matter volumes. Multiple sclerosis journal - experimental, translational and clinical, 5(1). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6378429/

Marshall, R. D., Collins, A., Escolar, M. L., Jinnah, H., Klopstock, T., Kruer, M. C., . . . Revicki, D. A. (2019). A Scale to Assess Activities of Daily Living in Pantothenate Kinase‐Associated Neurodegeneration. Movement Disorders Clinical Practice, 6(2), 139–149. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6384181/

Medina, L. D., Torres, S., Alvarez, E., Valdez, B., & Nair, K. V. (2019). Patient-reported outcomes in multiple sclerosis: Validation of the Quality of Life in Neurological Disorders (Neuro-QoL™) short forms. Multiple sclerosis journal - experimental, translational and clinical, 5(4). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6882038/

Morris, T. P., Tormos Muñoz, J.-M., Cattaneo, G., Solana-Sánchez, J., Bartrés-Faz, D., & Pascual-Leone, A. (2019). Traumatic Brain Injury Modifies the Relationship Between Physical Activity and Global and Cognitive Health: Results From the Barcelona Brain Health Initiative. Frontiers in Behavioral Neuroscience, 13, 135-135. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6593392/

Padilla, A. H., Palmer, P. M., & Rodríguez, B. L. (2019). The Relationship Between Culture, Quality of Life, and Stigma in Hispanic New Mexicans With Dysphagia: A Preliminary Investigation Using Quantitative and Qualitative Analysis. American Journal of Speech-Language Pathology, 28(2), 485-500. https://www.ncbi.nlm.nih.gov/pubmed/31136241

Plessow, F., Pascual-Leone, A., McCracken, C. M., Baker, J., Krishnan, S., Baggish, A., . . . Meehan, W. (2019). Self-reported cognitive function and mental health diagnoses among former professional American-style football players. Journal of Neurotrauma. https://www.ncbi.nlm.nih.gov/pubmed/31672091

Rhodes, J. K., Schindler, D., Rao, S. M., Venegas, F., Bruzik, E. T., Gabel, W., . . . Rudick, R. A. (2019). Multiple Sclerosis Performance Test: Technical Development and Usability. Advances in Therapy. https://www.ncbi.nlm.nih.gov/pubmed/31054035

Thangarajh, M., Kaat, A. J., Bibat, G., Mansour, J., Summerton, K., Gioia, A., . . . Wagner, K. R. (2019). The NIH Toolbox for cognitive surveillance in Duchenne muscular dystrophy. Annals of Clinical and Translational Neurology. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6764624/

Turk, S. P., Lumbard, K., Liepshutz, K., Williams, C., Hu, L., Dardick, K., . . . Marques, A. (2019). Post-treatment Lyme disease symptoms score: Developing a new tool for research. PLoS ONE, 14(11), e0225012-e0225012. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6844481/

Wang, J. H.-y., Gomez, S. L., Brown, R. L., Davis, K., Allen, L., Huang, E., . . . Schwartz, M. D. (2019). Factors associated with Chinese American and White cancer survivors’ physical and psychological functioning. Health Psychology, 38(5), 455-465. https://www.ncbi.nlm.nih.gov/pubmed/31045429

Zurawski, J., Glanz, B. I., Healy, B. C., Tauhid, S., Khalid, F., Chitnis, T., . . . Bakshi, R. (2019). The impact of cervical spinal cord atrophy on quality of life in multiple sclerosis. Journal of the Neurological Sciences, 403, 38-43. https://www.ncbi.nlm.nih.gov/pubmed/31207364

Last updated: 1/23/2020

Apple, A.C., Schroeder, M.P., Ryals, A.J., Wagner, L.I., Cella, D., Shih, P.-A., . . . Wang, L. (2018). Hippocampal Functional Connectivity Is Related to Self-Reported Cognitive Concerns in Breast Cancer Patients Undergoing Adjuvant Therapy. NeuroImage : Clinical, 20, 110-118. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6077172/

Bakshi, N., Ross, D., & Krishnamurti, L. (2018). Presence of Pain on Three or More Days of the Week Is Associated with Worse Patient Reported Outcomes in Adults with Sickle Cell Disease. Journal of Pain Research, 11, 313-318. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5810514/

Barnett, C., Bril, V., & Bayoumi, A.M. (2018). EQ-5d-5l and SF-6d Health Utility Index Scores in Patients with Myasthenia Gravis. European Journal of Neurology. https://www.ncbi.nlm.nih.gov/pubmed/30315714

Bush, R.A., Beaumont, J.L., Liotta, E.M., Maas, M.B., & Naidech, A.M. (2018). Fever Burden and Health-Related Quality of Life after Intracerebral Hemorrhage. Neurocritical Care. https://www.ncbi.nlm.nih.gov/pubmed/29600341

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. Journal of Neuropsychiatry and Clinical Neurosciences. https://www.ncbi.nlm.nih.gov/pubmed/29558861

Healy, B.C., Zurawski, J., Gonzalez, C.T., Chitnis, T., Weiner, H.L., & Glanz, B.I. (2018). Assessment of Computer Adaptive Testing Version of the Neuro-QOL for People with Multiple Sclerosis. Multiple Sclerosis Journal. https://www.ncbi.nlm.nih.gov/pubmed/30381985

Kasturi, S., Szymonifka, J., Burket, J.C., Berman, J.R., Kirou, K.A., Levine, A.B., . . . Mandl, L.A. (2018). Feasibility, Validity, and Reliability of the 10-Item Patient Reported Outcomes Measurement Information System Global Health Short Form in Outpatients with Systemic Lupus Erythematosus. Journal of Rheumatology. https://www.ncbi.nlm.nih.gov/pubmed/29419473

Katzan, I.L., Schuster, A., Newey, C., Uchino, K., & Lapin, B. (2018). Patient-Reported Outcomes across Cerebrovascular Event Types. Neurology. https://doi.org/10.1212/WNL.0000000000006626

Katzan, I.L., Thompson, N.R., Uchino, K., & Lapin, B. (2018). The Most Affected Health Domains after Ischemic Stroke. Neurology. https://www.ncbi.nlm.nih.gov/pubmed/29592886

Lai, J.-S., Jensen, S.E., Charrow, J., & Listernick, R. (2018). Patient Reported Outcomes Measurement Information System and Quality of Life in Neurological Disorders Measurement System to Evaluate Quality of Life for Children and Adolescents with Neurofibromatosis Type 1 Associated Plexiform Neurofibroma. Journal of Pediatrics. https://www.ncbi.nlm.nih.gov/pubmed/30413310

Lapin, B., Udeh, B., Bautista, J.F., & Katzan, I.L. (2018). Patient Experience with Patient-Reported Outcome Measures in Neurologic Practice. Neurology. https://www.ncbi.nlm.nih.gov/pubmed/30135254

Maass, K.L., Smith, A.R., Tucker, E.L., Schapiro, H., Cottrell, S.M., Gendron, E., . . . Leichtman, A.B. (2018). Comparison of Patient and Provider Goals, Expectations, and Experiences Following Kidney Transplantation. Patient Education and Counseling. https://www.ncbi.nlm.nih.gov/pubmed/30591284

Mastboom, M.J., Planje, R., & van de Sande, M.A. (2018). The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life. Interactive Journal of Medical Research, 7(1), e4. http://www.i-jmr.org/2018/1/e4/

Naidech, A., Beaumont, J., Muldoon, K., Maas, M., Potts, M., Jahromi, B., . . . Holl, J. (2018). Prophylactic Seizure Medication and Health-Related Quality of Life after Intracerebral Hemorrhage. Critical Care Medicine, 46(1), 356. https://www.ncbi.nlm.nih.gov/pubmed/29923930

Poritz, J.M.P., Sherer, M., Kisala, P.A., Tulsky, D., Leon-Novelo, L., & Ngan, E. (2018). Responsiveness of the Traumatic Brain Injury – Quality of Life (TBI-QOL) Measurement System. Archives of Physical Medicine and Rehabilitation. https://www.ncbi.nlm.nih.gov/pubmed/29407517

Santiago, C., María Isabel, V., Alejandra, D., Juan Darío, O.-E., Mariana, A., Jordi, M., . . . Belén, P.-D. (2018). Frameless Robot-Assisted Pallidal Deep Brain Stimulation Surgery in Pediatric Patients with Movement Disorders: Precision and Short-Term Clinical Results. Journal of Neurosurgery. Pediatrics. https://www.ncbi.nlm.nih.gov/pubmed/30028274

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. https://www.ncbi.nlm.nih.gov/pubmed/29750428

Tran, C., Bril, V., Katzberg, H.D., & Barnett, C. (2018). Fatigue Is a Relevant Outcome in Patients with Myasthenia Gravis. Muscle and Nerve. https://www.ncbi.nlm.nih.gov/pubmed/29342314

Tyner, C.E., Boulton, A.J., Sherer, M., Kisala, P.A., Glutting, J.J., & Tulsky, D.S. (2018). Development of Composite Scores for the Traumatic Brain Injury Quality of Life Measurement System (TBI-QOL). Archives of Physical Medicine and Rehabilitation. https://www.archives-pmr.org/article/S0003-9993(18)30432-5/fulltext

Watson, E.J.R., Nenadlová, K., Clancy, O.H., Farag, M., Nordin, N.A., Nilsen, A., . . . Vizcaychipi, M.P. (2018). Perioperative Research into Memory (Prime): Cognitive Impairment Following a Severe Burn Injury and Critical Care Admission, Part 1. Burns. https://www.ncbi.nlm.nih.gov/pubmed/29752016

Weinkle, L., Domen, C.H., Shelton, I., Sillau, S., Nair, K., & Alvarez, E. (2018). Exploring Cannabis Use by Patients with Multiple Sclerosis in a State Where Cannabis Is Legal. Multiple sclerosis and related disorders. https://www.ncbi.nlm.nih.gov/pubmed/30502644

Wong, A.W.K., Lau, S.C.L., Fong, M.W.M., Cella, D., Lai, J.-S., & Heinemann, A.W. (2018). Conceptual Underpinnings of the Quality of Life in Neurological Disorders (Neuro-QoL): Comparisons of Core Sets for Stroke, Multiple Sclerosis, Spinal Cord Injury, and Traumatic Brain Injury. Archives of Physical Medicine and Rehabilitation. https://www.ncbi.nlm.nih.gov/pubmed/29625094

Xie, G., Chen, L., Yang, S., Tao, J., Chan, C.C.H., Heinemann, A.W., . . . Wong, A.W.K. (2018). Simplified Chinese Translation of 13 Adult Item Banks from the Quality of Life in Neurological Disorders (Neuro-QoL). BMC Health Services Research, 18(1), 825. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6208024/

Updated 1/29/19

Amtmann, D., McMullen, K., Bamer, A., Fauerbach, J.A., Gibran, N.S., Herndon, D., . . . Miller, A.C. (2017). National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System: Review of Program and Database. Archives of Physical Medicine and Rehabilitation. https://www.ncbi.nlm.nih.gov/pubmed/28989076

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. (2017). Discordance in Utility Measurement in Persons with Neurological Conditions: A Comparison of the SF-6d and the HUI3. Value in Health. https://www.ncbi.nlm.nih.gov/pubmed/28964449

Amtmann, D., McMullen, K., Bamer, A., Fauerbach, J.A., Gibran, N.S., Herndon, D., . . . Miller, A.C. (2018). National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System: Review of Program and Database. Archives of Physical Medicine and Rehabilitation. https://www.ncbi.nlm.nih.gov/pubmed/28989076

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/

Baldassari, L. E., Nakamura, K., Moss, B. P., Macaron, G., Li, H., Weber, M., . . . McGinley, M. P. (2020). Technology-enabled comprehensive characterization of multiple sclerosis in clinical practice. Multiple sclerosis and related disorders, 38, 101525. https://www.ncbi.nlm.nih.gov/pubmed/31759186

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

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

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

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

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

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/

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

Hahn, E.A., Downing, N.R., Stout, J.C., Paulsen, J.S., Ready, B., Goodnight, S., . . . Carlozzi, N.E. (2017). Understanding the Need for Assistance with Survey Completion in People with Huntington Disease. Quality of Life Research. https://www.ncbi.nlm.nih.gov/pubmed/29214414

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

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/

Katzan, I.L., Schuster, A., Newey, C., Uchino, K., & Lapin, B. (2018). Patient-Reported Outcomes across Cerebrovascular Event Types. Neurology. https://doi.org/10.1212/WNL.0000000000006626

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

Katzan, I.L., Thompson, N.R., Uchino, K., & Lapin, B. (2018). The Most Affected Health Domains after Ischemic Stroke. Neurology. https://www.ncbi.nlm.nih.gov/pubmed/29592886

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

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., 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., 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

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

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

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

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

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, 36(3), 555-562. https://www.ncbi.nlm.nih.gov/pubmed/27848056

Lai, J.-S., Goodnight, S., Downing, N.R., Ready, R.E., Paulsen, J.S., Kratz, A.L., . . . Carlozzi, N.E. (2017). Evaluating Cognition in Individuals with Huntington Disease: Neuro-QoL Cognitive Functioning Measures. Quality of Life Research. https://www.ncbi.nlm.nih.gov/pubmed/29222609

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

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

Lapin, B., Udeh, B., Bautista, J.F., & Katzan, I.L. (2018). Patient Experience with Patient-Reported Outcome Measures in Neurologic Practice. Neurology. https://www.ncbi.nlm.nih.gov/pubmed/30135254

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. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3088483/

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

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/

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

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

Tran, C., Bril, V., Katzberg, H.D., & Barnett, C. (2018). Fatigue Is a Relevant Outcome in Patients with Myasthenia Gravis. Muscle and Nerve. https://www.ncbi.nlm.nih.gov/pubmed/29342314

Tran, T.A., Williams, L.M., Bui, D., Anthonisen, C., Poltavskiy, E., & Szabo, R.M. (2017). Prospective Pilot Study Comparing Pre- and Postsurgical Ctsaq and Neuro-QoL Questionnaire with Median Nerve High-Resolution Ultrasound Cross-Sectional Areas. Journal of Hand Surgery. https://www.ncbi.nlm.nih.gov/pubmed/28951102

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., 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. http://dx.doi.org/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., 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

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

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

Last updated: 7/13/2020

Neuro-QoLTM Publications

Neuro-QoL^TM Publications