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DOI: 10.1055/s-0041-1731365
Clinical Use of PROMIS, Neuro-QoL, TBI-QoL, and Other Patient-Reported Outcome Measures for Individual Adult Clients with Cognitive and Language Disorders
Funding Gordon and Betty Moore Foundation 5299. U.S. Department of Health and Human Services. National Institutes of Health. National Institute of General Medical Sciences U54-GM104941.Abstract
Patient-reported outcome measures (PROMs) assess health outcomes from the patient's perspective. The National Institutes of Health has invested in the creation of numerous PROMs that comprise the PROMIS, Neuro-QoL, and TBI-QoL measurement systems. Some of these PROMs are potentially useful as primary or secondary outcome measures, or as contextual variables for the treatment of adults with cognitive/language disorders. These PROMs were primarily created for clinical research and interpretation of group means. They also have potential for use with individual clients; however, at present there is only sparse evidence and direction for this application of PROMs. Previous research by Cohen and Hula (2020) described how PROMs could support evidence-based practices in speech-language pathology. This companion article extends upon that work to present clinicians with implementation information about obtaining, administering, scoring, and interpreting PROMs for individual clients with cognitive/language disorders. This includes considerations of the type and extent of communication support that is appropriate, implications of the relatively large measurement error that accompanies individual scores and pairs of scores, and recommendations for applying minimal detectable change values depending on the clinician's desired level of measurement precision. However, more research is needed to guide the interpretation of PROM scores for an individual client.
Keywords
patient-reported outcome measures - speech-language pathology - evidence-based practice - communication disordersDisclosures
No author has a conflict of interest with the content of this manuscript.
Publikationsverlauf
Artikel online veröffentlicht:
14. Juli 2021
© 2021. Thieme. All rights reserved.
Thieme Medical Publishers, Inc.
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References
- 1 Patrick DL, Burke LB, Powers JH. et al. Patient-reported outcomes to support medical product labeling claims: FDA perspective. Value Health 2007; 10 (Suppl. 02) S125-S137
- 2 Baylor C, Yorkston K, Eadie T, Kim J, Chung H, Amtmann D. The Communicative Participation Item Bank (CPIB): item bank calibration and development of a disorder-generic short form. J Speech Lang Hear Res 2013; 56 (04) 1190-1208
- 3 Cohen ML, Hula WD. Patient-reported outcomes and evidence-based practice in speech-language pathology. Am J Speech Lang Pathol 2020; 29 (01) 357-370
- 4 Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academy Press; 2001
- 5 Sackett DL, Rosenberg WMC, Gray JAM, Haynes RB, Richardson WS. Evidence based medicine: what it is and what it isn't. BMJ 1996; 312 (7023): 71-72
- 6 Cella D, Riley W, Stone A. et al; PROMIS Cooperative Group. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol 2010; 63 (11) 1179-1194
- 7 Cella D, Lai J-S, Nowinski CJ. et al. Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurology 2012; 78 (23) 1860-1867
- 8 Gershon RC, Lai JS, Bode R. et al. Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Qual Life Res 2012; 21 (03) 475-486
- 9 Tulsky DS, Kisala PA, Victorson D. et al. TBI-QOL: development and calibration of item banks to measure patient reported outcomes following traumatic brain injury. J Head Trauma Rehabil 2016; 31 (01) 40-51
- 10 Hula WD, Doyle PJ, Stone CA. et al. The Aphasia Communication Outcome Measure (ACOM): dimensionality, item bank calibration, and initial validation. J Speech Lang Hear Res 2015; 58 (03) 906-919
- 11 Yorkston K, Baylor C. Patient-Reported Outcomes Measures: An Introduction for Clinicians. Perspectives of the ASHA Special Interest Groups. Published online January 11, 2019: 1-8 DOI: 10.1044/2018_PERS-ST-2018-0001
- 12 Amtmann D, Cook KF, Johnson KL, Cella D. The PROMIS initiative: involvement of rehabilitation stakeholders in development and examples of applications in rehabilitation research. Arch Phys Med Rehabil 2011; 92 (10, Suppl): S12-S19
- 13 Cella D, Yount S, Rothrock N. et al; PROMIS Cooperative Group. The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med Care 2007; 45 (05, Suppl 1): S3-S11
- 14 National Institutes of Health. A Decade of Discovery: The NIH Roadmap and Common Fund. 2014 Accessed May 31, 2021 at: https://commonfund.nih.gov/sites/default/files/ADecadeofDiscoveryNIHRoadmapCF.pdf
- 15 PROsetta Stone. Linking Patient-Reported Outcome Measures. Accessed December 13, 2020 at: http://www.prosettastone.org
- 16 Tyner CE, Boulton AJ, Sherer M, Kisala PA, Glutting JJ, Tulsky DS. Development of composite scores for the TBI-QOL. Arch Phys Med Rehabil 2020; 101 (01) 43-53
- 17 Cohen ML, Kisala PA, Boulton AJ, Carlozzi NE, Cook CV, Tulsky DS. Development and psychometric characteristics of the TBI-QOL communication item bank. J Head Trauma Rehabil 2019; 34 (05) 326-339
- 18 Cohen ML, Tulsky DS, Boulton AJ. et al. Reliability and construct validity of the TBI-QOL Communication Short Form as a parent-report instrument for children with traumatic brain injury. J Speech Lang Hear Res 62 (01) 84-92
- 19 Carlozzi NE, Tyner CE, Kisala PA. et al. Measuring self-reported cognitive function following TBI: development of the TBI-QOL executive function and cognition-general concerns item banks. J Head Trauma Rehabil 2019; 34 (05) 308-325
- 20 Heinemann AW, Kisala PA, Boulton AJ. et al. 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. Arch Phys Med Rehabil 2020; 101 (01) 20-32
- 21 Kisala PA, Tulsky DS. Opportunities for CAT applications in medical rehabilitation: development of targeted item banks. J Appl Meas 2010; 11 (03) 315-330
- 22 PROMIS Health Organization. PROMIS Instrument Development and Psychometric Evaluation Scientific Standards, Version 2.0. 2013 Accessed May 31, 2021 at: http://www.healthmeasures.net/images/PROMIS/PROMISStandards_Vers2.0_Final.pdf
- 23 Revicki DA, Cella DF. Health status assessment for the twenty-first century: item response theory, item banking and computer adaptive testing. Qual Life Res 1997; 6 (06) 595-600
- 24 Fergadiotis G, Casilio M, Hula WD. Computer adaptive testing for the assessment of anomia severity. Semin Speech Lang 2021; 42 (03) 180-191
- 25 Baylor C, Hula W, Donovan NJ, Doyle PJ, Kendall D, Yorkston K. An introduction to item response theory and Rasch models for speech-language pathologists. Am J Speech Lang Pathol 2011; 20 (03) 243-259
- 26 HealthMeasures. Administration Platforms. Published October 10, 2020. Accessed May 31, 2021 at: https://www.healthmeasures.net/
- 27 Rose TA, Worrall LE, Hickson LM, Hoffmann TC. Guiding principles for printed education materials: design preferences of people with aphasia. Int J Speech Lang Pathol 2012; 14 (01) 11-23
- 28 Rose T, Worrall L, Hickson L, Hoffmann T. Do people with aphasia want written stroke and aphasia information? A verbal survey exploring preferences for when and how to provide stroke and aphasia information. Top Stroke Rehabil 2010; 17 (02) 79-98
- 29 Rose TA, Worrall LE, Hickson LM, Hoffmann TC. Aphasia friendly written health information: content and design characteristics. Int J Speech Lang Pathol 2011; 13 (04) 335-347
- 30 Tucker FM, Edwards DF, Mathews LK, Baum CM, Connor LT. Modifying health outcome measures for people with aphasia. Am J Occup Ther 2012; 66 (01) 42-50
- 31 Kisala PA, Boulton AJ, Cohen ML. et al. Interviewer- versus self-administration of PROMIS® measures for adults with traumatic injury. Health Psychol 2019; 38 (05) 435-444
- 32 Rutherford C, Costa D, Mercieca-Bebber R, Rice H, Gabb L, King M. Mode of administration does not cause bias in patient-reported outcome results: a meta-analysis. Qual Life Res 2016; 25 (03) 559-574
- 33 Brennan A, Worrall L, McKenna K. The relationship between specific features of aphasia-friendly written material and comprehension of written material for people with aphasia: an exploratory study. Aphasiology 2005; 19 (08) 693-711
- 34 Kagan A. Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology 1998; 12 (09) 816-830
- 35 Purdy M, Van Dyke J. Multimodal communication training in aphasia: a pilot study. 2011; 19 (03) 45-53
- 36 Baylor C, Oelke M, Bamer A. et al. Validating the Communicative Participation Item Bank (CPIB) for use with people with aphasia: an analysis of differential item function (DIF). Aphasiology 2017; 31 (08) 861-878
- 37 Hunting Pompon R, Amtmann D, Bombardier C, Kendall D. Modifying and validating a measure of chronic stress for people with aphasia. J Speech Lang Hear Res 2018; 61 (12) 2934-2949
- 38 HealthMeasures. Obtain and Administer Measures. Accessed May 31, 2021 at: https://www.healthmeasures.net/explore-measurement-systems/promis/obtain-administer-measures
- 39 Cohen ML, Boulton AJ, Lanzi AM, Sutherland E, Hunting Pompon R. Psycholinguistic features, design attributes, and respondent-reported cognition predict response time to patient-reported outcome measure items. Qual Life Res 2021
- 40 Cella D, Choi S, Garcia S. et al. Setting standards for severity of common symptoms in oncology using the PROMIS item banks and expert judgment. Qual Life Res 2014; 23 (10) 2651-2661
- 41 Cook KF, Victorson DE, Cella D, Schalet BD, Miller D. Creating meaningful cut-scores for Neuro-QOL measures of fatigue, physical functioning, and sleep disturbance using standard setting with patients and providers. Qual Life Res 2015; 24 (03) 575-589
- 42 Cook KF, Cella D, Reeve BB. PRO-Bookmarking to estimate clinical thresholds for patient-reported symptoms and function. Med Care 2019; 57 (05, Suppl 1): S13-S17
- 43 Rothrock NE, Cook KF, O'Connor M, Cella D, Smith AW, Yount SE. Establishing clinically-relevant terms and severity thresholds for Patient-Reported Outcomes Measurement Information System® (PROMIS®) measures of physical function, cognitive function, and sleep disturbance in people with cancer using standard setting. Qual Life Res 2019; 28 (12) 3355-3362
- 44 Mann CM. Identifying clinically meaningful severity categories for PROMIS pediatric measures of anxiety, mobility, fatigue, and depressive symptoms in juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus. Qual Life Res 2020; 29 (09) 2573-2584
- 45 Nagaraja V, Mara C, Khanna PP. et al. Establishing clinical severity for PROMIS® measures in adult patients with rheumatic diseases. Qual Life Res 2018; 27 (03) 755-764
- 46 Kisala PA, Victorson D, Nandakumar R. et al. Applying a bookmarking approach to setting clinically relevant interpretive standards for the spinal cord injury – functional index/capacity (SCI-FI/C) basic mobility and self-care item bank scores. Arch Phys Med Rehabil 2020; DOI: 10.1016/j.apmr.2020.08.026.
- 47 Kvien TK, Heiberg T, Hagen KB. Minimal clinically important improvement/difference (MCII/MCID) and patient acceptable symptom state (PASS): what do these concepts mean?. Ann Rheum Dis 2007; 66 (Suppl. 03) iii40-iii41
- 48 Lehman LA, Velozo CA. Ability to detect change in patient function: responsiveness designs and methods of calculation. J Hand Ther 2010; 23 (04) 361-370 , quiz 371
- 49 Portney LG, Watkins MP. Foundations of Clinical Research: Applications to Practice. 3rd ed.. F.A. Davis Company; 2015
- 50 Kozlowski AJ, Cella D, Nitsch KP, Heinemann AW. Evaluating individual change with the Quality of Life in Neurological Disorders (Neuro-QoL) short forms. Arch Phys Med Rehabil 2016; 97 (04) 650-654.e8
- 51 Hays RD, Brodsky M, Johnston MF, Spritzer KL, Hui K-K. Evaluating the statistical significance of health-related quality-of-life change in individual patients. Eval Health Prof 2005; 28 (02) 160-171
- 52 Brady MC, Kelly H, Godwin J, Enderby P, Campbell P. Speech and language therapy for aphasia following stroke. Cochrane Database Syst Rev 2016; (06) CD000425
- 53 Nair RD, Cogger H, Worthington E, Lincoln NB. Cognitive rehabilitation for memory deficits after stroke. Cochrane Database Syst Rev (Published online September 1, 2016). DOI: 10.1002/14651858.CD002293.pub3.
- 54 Lin KC, Hsieh YW, Wu CY, Chen CL, Jang Y, Liu JS. Minimal detectable change and clinically important difference of the Wolf Motor Function Test in stroke patients. Neurorehabil Neural Repair 2009; 23 (05) 429-434
- 55 Wu CY, Chuang LL, Lin KC, Lee SD, Hong WH. Responsiveness, minimal detectable change, and minimal clinically important difference of the Nottingham Extended Activities of Daily Living Scale in patients with improved performance after stroke rehabilitation. Arch Phys Med Rehabil 2011; 92 (08) 1281-1287
- 56 Chen CL, Shen IH, Chen CY, Wu CY, Liu W-Y, Chung CY. Validity, responsiveness, minimal detectable change, and minimal clinically important change of Pediatric Balance Scale in children with cerebral palsy. Res Dev Disabil 2013; 34 (03) 916-922
- 57 King MT. A point of minimal important difference (MID): a critique of terminology and methods. Expert Rev Pharmacoecon Outcomes Res 2011; 11 (02) 171-184
- 58 Revicki D, Hays RD, Cella D, Sloan J. Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes. J Clin Epidemiol 2008; 61 (02) 102-109
- 59 Baumhauer JF. Patient-reported outcomes - Are they living up to their potential?. N Engl J Med 2017; 377 (01) 6-9
- 60 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; 26 (11) 2961-2971
- 61 Kamper SJ, Ostelo RWJG, Knol DL, Maher CG, de Vet HCW, Hancock MJ. Global Perceived Effect scales provided reliable assessments of health transition in people with musculoskeletal disorders, but ratings are strongly influenced by current status. J Clin Epidemiol 2010; 63 (07) 760-766.e1
- 62 Schwartz CE, Powell VE, Rapkin BD. When global rating of change contradicts observed change: examining appraisal processes underlying paradoxical responses over time. Qual Life Res 2017; 26 (04) 847-857
- 63 Zeppieri Jr G, George SZ. Patient-defined desired outcome, success criteria, and expectation in outpatient physical therapy: a longitudinal assessment. Health Qual Life Outcomes 2017; 15 (01) 29
- 64 Krasny-Pacini A, Evans J, Sohlberg MM, Chevignard M. Proposed criteria for appraising goal attainment scales used as outcome measures in rehabilitation research. Arch Phys Med Rehabil 2016; 97 (01) 157-170
- 65 Koo TK, Li MY. A guideline of selecting and reporting intraclass correlation coefficients for reliability research. J Chiropr Med 2016; 15 (02) 155-163
- 66 Embretson S, Reise S. Item Response Theory for Psychologists. Lawrence Erlbaum Associates; 2000
- 67 Lapin B, Thompson NR, Schuster A, Katzan IL. Clinical utility of patient-reported outcome measurement information system domain scales. Circ Cardiovasc Qual Outcomes 2019; 12 (01) e004753
- 68 Haley SM, Fragala-Pinkham MA. Interpreting change scores of tests and measures used in physical therapy. Phys Ther 2006; 86 (05) 735-743
- 69 Schwartz CE, Rapkin BD. Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health Qual Life Outcomes 2004; 2: 16
- 70 Jobe JB. Cognitive psychology and self-reports: models and methods. Qual Life Res 2003; 12 (03) 219-227
- 71 Rapkin BD, Schwartz CE. Toward a theoretical model of quality-of-life appraisal: Implications of findings from studies of response shift. Health Qual Life Outcomes 2004; 2: 14
- 72 Tourangeau R, Rips LJ, Rasinski KA. The Psychology of Survey Response. Cambridge University Press; 2000
- 73 Aaronson NK, Elliot TR, Greenhalgh J. et al. User's Guide to Implementing Patient-Reported Outcomes Assessment in Clinical Practice, Version 2. International Society for Quality of Life Research; 2015 Accessed May 31, 2021 at: http://www.isoqol.org/UserFiles/file/UsersGuide.pdf
- 74 Ayers DC, Zheng H, Franklin PD. Integrating patient-reported outcomes into orthopaedic clinical practice: proof of concept from FORCE-TJR. Clin Orthop Relat Res 2013; 471 (11) 3419-3425
- 75 Bingham III CO, Bartlett SJ, Merkel PA. et al. Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects. Qual Life Res 2016; 25 (08) 2109-2116
- 76 Chan EKH, Edwards TC, Haywood K, Mikles SP, Newton L. Implementing patient-reported outcome measures in clinical practice: a companion guide to the ISOQOL user's guide. Qual Life Res 2019; 28 (03) 621-627
- 77 Hsiao C-J, Dymek C, Kim B, Russell B. Advancing the use of patient-reported outcomes in practice: understanding challenges, opportunities, and the potential of health information technology. Qual Life Res 2019; 28 (06) 1575-1583
- 78 Santana MJ, Haverman L, Absolom K. et al. Training clinicians in how to use patient-reported outcome measures in routine clinical practice. Qual Life Res 2015; 24 (07) 1707-1718
- 79 Wagner LI, Schink J, Bass M. et al. Bringing PROMIS to practice: brief and precise symptom screening in ambulatory cancer care. Cancer 2015; 121 (06) 927-934
- 80 Malec JF. Goal attainment scaling in rehabilitation. Neuropsychol Rehabil 1999; 9 (3–4); 253-275