Are Patient-reported Outcome Measures in Orthopaedics Easily Read by Patients?

Clinical Orthopaedics and Related Research

Volumn 474, Issue 1, 2016, Pages 246-255

  El Daly, Ibraheim ^b   Ibraheim, Hajir ^a   Rajakulendran, Karthig ^a   Culpan, Paul ^b   Bates, Peter ^b  

^a BASILDON HOSPITAL   (United Kingdom)

^b ROYAL LONDON HOSPITAL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIBLIOGRAPHIC DATABASE; GENERAL HEALTH QUESTIONNAIRE; HEALTH INSURANCE; HEALTH LITERACY; HEALTH SURVEY; HUMAN; ORTHOPEDIC SURGEON; ORTHOPEDIC SURGERY; ORTHOPEDICS; OUTCOME ASSESSMENT; PATIENT EDUCATION; PATIENT REPORTED OUTCOME MEASURE; PRACTICE GUIDELINE; PRIORITY JOURNAL; QUALITY OF LIFE; ROLAND MORRIS DISABILITY QUESTIONNAIRE; SELF EVALUATION; SURGICAL PATIENT; ADOLESCENT; ADULT; CHILD; COMPREHENSION; HEALTH STATUS; MIDDLE AGED; MUSCULOSKELETAL DISEASES; QUESTIONNAIRE; READING; REPRODUCIBILITY; SELF REPORT; UNITED KINGDOM; YOUNG ADULT;

ADOLESCENT; ADULT; CHILD; COMPREHENSION; HEALTH STATUS; HUMANS; LITERACY; MIDDLE AGED; MUSCULOSKELETAL DISEASES; ORTHOPEDIC PROCEDURES; PATIENT OUTCOME ASSESSMENT; QUALITY OF LIFE; REPRODUCIBILITY OF RESULTS; SELF REPORT; SURVEYS AND QUESTIONNAIRES; UNITED KINGDOM; YOUNG ADULT;

EID: 84952873838     PISSN: 0009921X     EISSN: 15281132     Source Type: Journal    
DOI: 10.1007/s11999-015-4595-0     Document Type: Article

References (111)

1. Agel J, LaPrade RF. Assessment of differences between the modified Cincinnati and International Knee Documentation Committee patient outcome scores: a prospective study. Am J Sports Med. 2009;2151–2157.
2. Albright J, de Guzman C, Acebo, P, Paiva D, Faulkner M, Swanson J. Readability of patient education materials: implications for clinical practice. Appl Nurs Res. 1996;9:139–143.
3. Alvey J, Palmer S, Otter S. A comparison of the readability of two patient-reported outcome measures used to evaluate foot surgery. J Foot Ankle Surg. 2012;51:412–414.
4. Amadio PC, Berquist TH, Smith DK, Ilstrup DM, Cooney WP 3rd, Linscheid RL. Scaphoid malunion. J Hand Surg Am. 1989;14:679–687.
5. American Medical Association. Outcomes Research Resource Guide 1997: A Survey of Current Activities. Chicago, IL: American Medical Association; 1997.
6. Australian Bureau of Statistics. 4228.0 - Adult Literacy and Life Skills Survey, Summary Results, Australia, 2006 (Reissue). Available at: http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4228.0Main+Features12006%20(Reissue). Accessed August 19, 2015.
7. Baker DW, Wolf MS, Feinglass J, Thompson JA, Gazmararian JA, Huang J. Health literacy and mortality among elderly persons. Arch Intern Med. 2007;167:1503–1509.
8. Beaton DE, Katz JN, Fossel AH, Wright JG, Tarasuk V. Measuring the whole or the parts? Validity, reliability, and responsiveness of the disabilities of the arm, shoulder and hand outcome measure in different regions of the upper extremity. J Hand Ther. 2001;14:128–146.
9. Beaton DE, Wright JG, Katz JN. Development of the Quick-DASH: comparison of three item-reduction approaches. J Bone Joint Surg Am. 2005;87:1038–1046.
10. Beckman HB, Markakis KM, Suchman AL, Frankel RM. The doctor-patient relationship and malpractice: lessons from plaintiff depositions. Arch Intern Med. 1994;154:1365–1370.
11. Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011;155:97–107.
12. Binkley JM, Stratford PW, Lott SA, Riddle DL. The Lower Extremity Functional Scale (LEFS): scale development, measurement properties, and clinical application. North American Orthopaedic Rehabilitation Research Network. Phys Ther. 1999;79:371–383.
13. Bolton JE, Breen AC. The Bournemouth Questionnaire: a short-form comprehensive outcome measure: I. Psychometric properties in back pain patients. J Manipulative Physiol Ther. 1999;22:503–510.
14. Bolton JE, Humphreys BK. The Bournemouth Questionnaire: a short-form comprehensive outcome measure: II. Psychometric properties in neck pain patients. J Manipulative Physiol Ther. 2002;25:141–148.
15. Budiman-Mak E, Conrad KJ, Roach KE. The Foot Function Index: a measure of foot pain and disability. J Clin Epidemiol. 1991;44:561–570.
16. Burton S. A worldwide phenomenon. Intercom. 2007;54:3. Available at: http://intercom.stc.org/. Accessed September 01, 2015.
17. Calderón JL, Morales LS, Liu H, Hays RD. Variation in the readability of items within surveys. Am J Med Qual. 2006;21:49–56.
18. Chew LD, Bradley KA, Boyko EJ. Brief questions to identify patients with inadequate health literacy. Fam Med. 2004;36:588–594.
19. Chung KC, Pillsbury MS, Walters MR, Hayward RA. Reliability and validity testing of the Michigan Hand Outcomes Questionnaire. J Hand Surg Am. 1998;575–587.
20. Clancy C, Collins FS. Patient-Centered Outcomes Research Institute: the intersection of science and health care. Sci Transl Med. 2010;2:37cm18.
21. Cotugna N, Vickery CE, Carpenter-Haefele KM. Evaluation of literacy level of patient education pages in health-related journals. J Commun Health. 2005;30:213–219.
22. Davis AM, Perruccio AV, Canizares M, Tennant A, Hawker GA, Conaghan PG, Roos EM, Jordan JM, Maillefert JF, Dougados M, Lohmander LS. The development of a short measure of physical function for hip OA HOOS-Physical Function Shortform (HOOS-PS): an OARSI/OMERACT initiative. Osteoarthritis Cartilage. 2008;16:551–559.
23. Davis TC, Mayeaux EJ, Frederickson D, Bocchini JA Jr, Jackson RH, Murphy PW. Reading ability of parents compared with reading level of pediatric patient education materials. Pediatrics. 1994;93:460–468.
24. Dawson J, Doll H, Boller I, Fitzpatrick R, Little C, Rees J, Jenkinson C, Carr AJ. The development and validation of a patient-reported questionnaire to assess outcomes of elbow surgery. J Bone Joint Surg Br. 2008;90:466–473.
25. Dawson J, Fitzpatrick R, Carr A. Questionnaire on the perceptions of patients about shoulder surgery. J Bone Joint Surg Br. 1996;78:593–600.
26. Dawson J, Fitzpatrick R, Carr A. The assessment of shoulder instability. J Bone Joint Surg Br. 1999;81:420–426.
27. Dawson J, Fitzpatrick R, Carr A, Murray D. Questionnaire on the perceptions of patients about total hip replacement. J Bone Joint Surg Br. 1996;78:185–190.
28. Dawson J, Fitzpatrick R, Murray D, Carr A. Questionnaire on the perceptions of patients about total knee replacement. J Bone Joint Surg Br. 1998;80:63–69.
29. Department for Business Innovation & Skills, Gov.UK. Research and Analysis: 2011Skills For Life Survey. Available at: https://www.gov.uk/government/publications/2011-skills-for-life-survey. Accessed October 18, 2013.
30. Department of Health. Patient Reported Outcome Measures (PROMs) in England: A Methodology for Identifying Potential Outliers. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216651/dh_128447.pdf. Accessed November 2, 2013.
31. Devlin N, Appleby J. Getting the Most Out of PROMs: Putting Health Outcomes at the Heart of NHS Decision-Making. London, UK: The King’s Fund; 2010. Available at: https://www.kingsfund.org.uk/sites/files/kf/Getting-the-most-out-of-PROMs-Nancy-Devlin-John-Appleby-Kings-Fund-March-2010.pdf. Accessed October 6, 2015.
32. Eltorai AE, Sharma P, Wang J, Daniels AH. Most American Academy of Orthopaedic Surgeons’ online patient education material exceeds average patient reading level. Clin Orthop Relat Res. 2015;473:1181–1186.
33. Estrada CA, Hryniewicz MM, Higgs VB, Collins C, Byrd JC. Anticoagulant patient information material is written at high readability levels. Stroke. 2000;31:2966–2970.
34. EuroQol Group. EuroQol: a new facility for the measurement of health-related quality-of-life. Health Policy. 1990;16:199–208.
35. Fairbank JC, Couper J, Davies JB, O’Brien JP. The Oswestry low back pain disability questionnaire. Physiotherapy. 1980;66:271–273.
36. Flandry F, Hunt JP, Terry GC, Hughston JC. Analysis of subjective knee complaints using visual analog scales. Am J Sports Med. 1991;19:112–118.
37. Flesch R. A new readability yardstick. J Appl Psychol. 1948;32:221–233.
38. Friedman DB, Hoffman-Goetz L. A systematic review of readability and comprehension instruments used for print and web-based cancer information. Health Educ Behav. 2006;33:352–373.
39. Glazer HR, Kirk LM, Bosler FE. Patient education pamphlets about prevention, detection, and treatment of breast cancer for low literacy women. Patient Educ Couns. 1996;27:185–189.
40. Goldstein AA, Sikali E, White SR. National assessment of adult literacy (NAAL). Washington, DC: National Center for Education Statistics; 2003. Available at: https://nces.ed.gov/pubs2007/2007064.pdf. Accessed October 2, 2015.
41. Griffin J, McKenna K, Tooth L. Discrepancy between older clients’ ability to read and comprehend and the reading level of written educational materials used by occupational therapists. Am J Occup Ther. 2006;60:70–80.
42. Hale S, Hertel J. Reliability and sensitivity of the Foot and Ankle Disability Index in subjects with chronic ankle instability. J Athl Train. 2005;40:35–40.
43. Health & Social Care Information Centre. Hospital Episode Statistics. Available at: http://www.hscic.gov.uk/hes. Accessed December 10, 2013.
44. Higgins LD, Taylor MK, Park D, Ghodadra N, Marchant M, Pietrobon R, Cook C; International Knee Documentation Committee. Reliability and validity of the International Knee Documentation Committee (IKDC) Subjective Knee Form. Joint Bone Spine. 2007;74:594–599.
45. Hochhauser M. Some overlooked aspects of consent form readability. IRB. 1997;19:5–9.
46. Hochhauser M. The informed consent form: document development and evaluation. Drug Information Journal. 2000;34:1309–1317.
47. Jester A, Harth A, Germann G. Measuring levels of upper-extremity disability in employed adults using the DASH Questionnaire. J Hand Surg Am. 2005;30:1074.e1–1074.e10.
48. Johanson NA, Liang MH, Daltroy L, Rudicel S, Richmond J. American Academy of Orthopaedic Surgeons lower limb outcomes assessment instruments: reliability, validity, and sensitivity to change. J Bone Joint Surg Am. 2004;86:902–909.
49. Jordan A, Manniche C, Mosdal C, Hindsberger C. The Copenhagen Neck Functional Disability Scale: a study of reliability and validity. J Manipulative Physiol Ther. 1998;21:520–527.
50. Kaikkonen A, Kannus P, Jarvinen M. A performance test protocol and scoring scale for the evaluation of ankle injuries. Am J Sports Med. 1994;22:462–469.
51. nd ed. Sudbury, MA: Jones and Bartlett Publishers; 2006:3–22.
52. Katz MG, Jacobson TA, Veledar E, Kripalani S. Patient literacy and question-asking behavior in the medical encounter: a mixed-methods analysis. J Gen Intern Med. 2007;22:782–786.
53. Kincaid JP, Fishburne RP Jr, Rogers RL, Chissom BS. Derivation of New Readability Formulas (Automated Readability Index, Fog Count, and Flesch Reading Ease Formula) for Navy Enlisted Personnel. Report no: 8-75, 1975. Available at: http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCMQFjAA&url=http%3A%2F%2Fwww.dtic.mil%2Fdtic%2Ftr%2Ffulltext%2Fu2%2Fa006655.pdf&ei=bOZuVdvdK4OssgH85IP4Bw&usg=AFQjCNGKH51CQphwObz77Cev6nTBm3ANPw&sig2=UMunFM75bl1D0qGok3vV-g. Accessed August 20, 2015.
54. King GJ, Richards RR, Zuckerman JD, Blasier R, Dillman C, Friedman RJ, Gartsman GM, Iannotti JP, Murnahan JP, Mow VC, Woo SL. A standardized method for assessment of elbow function: Research Committee, American Shoulder and Elbow Surgeons. J Shoulder Elbow Surg. 1999;8:351–354.
55. Kirkley A, Griffin S, Alvarez C. The development and evaluation of a disease-specific quality of life measurement tool for rotator cuff disease: The Western Ontario Rotator Cuff Index (WORC). Clin J Sport Med. 2003;13:84–92.
56. Kirkley A, Griffin S, McLintock H, Ng L. The development and evaluation of a disease-specific quality of life measurement tool for shoulder instability: The Western Ontario Shoulder instability Index (WOSI). Am J Sports Med. 1998;26:764–772.
57. Kirkley A, Griffin S, Whelan D. The development and validation of a quality of life-measurement tool for patients with meniscal pathology: the Western Ontario Meniscal Evaluation Tool (WOMET). Clin J Sport Med. 2007;17:349–356.
58. Kirshner B, Guyatt G. A methodological framework for assessing health indices. J Chron Dis. 1985;38:27–36.
59. Klassbo M, Larsson E, Mannevik E. Hip disability and osteoarthritis outcome score: an extension of the Western Ontario and McMaster Universities Osteoarthritis Index. Scand J Rheumatol. 2003;32:46–51.
60. Kopec JA, Esdaile JM, Abrahamowicz M, Abenhaim L, Wood-Dauphinee S, Lamping DL, Williams JI. The Quebec Back Pain Disability Scale: measurement properties. Spine (Phila Pa 1976). 1995;20:341–352.
61. Kuhn JE. The assessment of outcomes for the treatment of the overhead athlete. In: Krishnan SG, Hawkins RJ, Warren RF, eds. The Shoulder and the Overhead Athlete. Philadelphia, PA: Lippincott-Williams & Wilkins; 2004;33–48.
62. Kujala UM, Jaakkola LH, Koskinen SK, Taimela S, Hurme M, Nelimarkka O. Scoring of patellofemoral disorders. Arthroscopy. 1993;9:159–163.
63. Kutner M, Greenberg E, Jin Y, Paulsen C. The Health Literacy of America’s Adults: Results From the 2003 National Assessment of Adult Literacy. Washington DC: U.S. Department of Education, National Center for Education Statistics. 2006. Available at: https://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2006483. Accessed August 20, 2015.
64. Lawlis GF, Cuencas R, Selby D, McCoy CE. The development of Dallas pain questionnaire: an assessment of the impact of spinal pain on behavior. Spine (Phila Pa 1976). 1989;14:515–516.
65. Lequesne MG, Mery C, Samson M, Gerard P. Indexes of severity for osteoarthritis of the hip and knee: validation: value in comparison with other assessment tests. Scand J Rheumatol Suppl. 1987;65:85–89.
66. Lysholm J, Gillquist J. Evaluation of knee ligament surgery results with special emphasis on use of a scoring scale. Am J Sports Med. 1982;10:150–154.
67. MacDermid JC. Development of a scale for patient rating of wrist pain and disability. J Hand Ther. 1996;9:178–183.
68. Majeed SA. Grading the outcome of pelvic fractures. J Bone Joint Surg Br. 1989;71: 304–306.
69. Marx G. Patient-reported measure of knee function. J Bone Joint Surg Am. 2000;82:1199–1202.
70. McLaughlin GH. SMOG grading: a new readability formula. J Reading. 1969;12:639–646.
71. Melzack R. The McGill Pain Questionnaire: major properties and scoring methods. Pain. 1975;1:277–299.
72. ® Corporation, Office Support. Test your document’s readability. Available at: https://support.office.com/en-us/article/Test-your-document-s-readability-0adc0e9a-b3fb-4bde-85f4-c9e88926c6aa. Accessed August 20, 2015.
73. Mohtadi N. Development and validation of the quality of life outcome measure (questionnaire) for chronic anterior cruciate ligament deficiency. Am J Sports Med. 1998;26:350–359.
74. Morrey BF, Sanchez-Sotelo J, eds. The Elbow and its Disorders. 2nd ed. Philadelphia, PA: WB Saunders; 1993.
75. Morris NS, MacLean CD, Chew LD, Littenberg B. The Single Item Literacy Screener: evaluation of a brief instrument to identify limited reading ability. BMC Fam Prac. 2006;7:21.
76. MyFloridaHouse.gov. Flsenate.gov Archives. The Florida Senate. 2011 Florida Statutes. Title XXXVII. Chapter 627. Section 4145 (1a). Available at: http://www.flsenate.gov/laws/statutes/2011/627.4145. Accessed September 18, 2013.
77. National Academy on an Aging Society. Fact sheet: Low health literacy skills increase annual health care expenditures by $73 billion. Available at: http://www.agingsociety.org/agingsociety/publications/fact/fact_low.htmlhttp://www.agingsociety.org/agingsociety/publications/fact/fact_low.html. Accessed August 20, 2013.
78. National Literacy Trust. How can I assess the readability of my document or write more clearly? Available at: http://www.literacytrust.org.uk/about/faqs/710_how_can_i_assess_the_readability_of_my_document_or_write_more_clearly. Accessed August 20, 2015.
79. Nielsen-Bohlman L, Panzer AM, Kindig DA; Committee on Health Literacy. What is health literacy. Health Literacy: A Prescription to End Confusion. Washington, DC: National Academies Press; 2004:31–58.
80. Parikh NS, Parker RM, Nurss JR, Baker DW, Williams MV. Shame and health literacy: the unspoken connection. Patient Educ Couns. 1996;27:33-39.
81. Patsopoulos NA, Analatos AA, Ioannidis JP. Relative citation impact of various study designs in the health sciences. JAMA. 2005;293:2362–2366.
82. Pincus T, Summey JA, Soraci SA Jr, Wallston KA, Hummon NP. Assessment of patient satisfaction in activities of daily living using a modified Stanford Health Assessment Questionnaire. Arthritis Rheum. 1983;26:1346–53.
83. Plain Language.gov. Federal Plain Language Guidelines. Available at: http://www.plainlanguage.gov/howto/guidelines/FederalPLGuidelines/index.cfm?CFID=3423844&CFTOKEN=d992d224a813db35-C72A3F3D-0E69-0D80-F3B25F21585EC543&jsessionid=E59A53B53D843284822F9F35F5D165E7.chh. Accessed August 11, 2013.
84. Readability score. Available at: https://readability-score.com/. Accessed October 6, 2015.
85. Roach KE, Budiman-Mak E, Sangsiridej N, Lertrantanakul Y. Development of a shoulder pain and disability index. Arthritis Care Res. 1991;4:143–149.
86. Roddey TS, Olson SL, Cook KF, Gartsman GM, Hanten W. Comparisons of the University of California-Los Angeles Shoulder Scale and the Simple Shoulder Test with the shoulder pain and disability index: single-administration reliability and validity. Phys Ther. 2000;80:759–768.
87. Roland M, Morris R. A study of the natural history of back pain. Part I: development of a reliable and sensitive measure of disability in low-back pain. Spine (Phila Pa 1976). 1983;8:141–144.
88. Roos EM, Brandsson S, Karlsson J. Validation of the foot and ankle outcome score for ankle ligament reconstruction. Foot Ankle Int. 2001;22:788–794.
89. Roos EM, Roos HP, Lohmander LS, Ekdahl C, Beynnon BD. Knee Injury and Osteoarthritis Outcome Score (KOOS): development of a self-administered outcome measure. J Orthop Sports Phys Ther. 1998;28:88–96.
90. Roos EM, Toksvig-Larsen S. Knee injury and Osteoarthritis Outcome Score (KOOS): validation and comparison to the WOMAC in total knee replacement. Health Qual Life Outcomes. 2003;1:17.
91. Stockmeyer NO. Using Microsoft Word’s readability program. Michigan Bar J. 2009;88:46–47.
92. Streiner DL, Norman GR, eds. Health Measurement Scales: A Practical Guide to Their Development and Use. New York, NY: Oxford University Press; 1995.
93. Sudore RL, Yaffe K, Satterfield S, Harris TB, Mehta KM, Simonsick EM, Newman AB, Rosano C, Rooks R, Rubin SM, Ayonayon HN, Schillinger D. Limited literacy and mortality in the elderly: the health, aging, and body composition study. J Gen Intern Med. 2006;21:806–812.
94. Suk M, Hanson BP, Norvell DC, Helfet DL. Musculoskeletal Outcomes Measures and Instruments. New York, NY: Thieme Medical Publishers; 2005.
95. Swiontkowski MF, Engelberg R, Martin DP, Agel J. Short musculoskeletal function assessment questionnaire: validity, reliability, and responsiveness. J Bone Joint SurgAm. 1999;81:1245–1260.
96. Tegner Y, Lysholm J. Rating systems in the evaluation of knee ligament injuries. Clin Orthop Relat Res. 1985;198:43–49.
97. Templeman D, Goulet J, Duwelius PJ, Olson S, Davidson M. Internal fixation of displaced fractures of the sacrum. Clin Orthop Relat Res. 1996;329:180–185.
98. Thorborg K, Hölmich P, Christensen R, Petersen J, Roos EM. The Copenhagen Hip and Groin Outcome Score (HAGOS): development and validation according to the COSMIN checklist. Br J Sports Med. 2011;45:478–491.
99. Tinker MA. Introduction. Legibility of Print. Ames, IA: Iowa State University Press; 1963:1–8.
100. U.S. National Library of Medicine. How to write easy-to-read health materials. Available at: https://www.nlm.nih.gov/medlineplus/etr.html. Accessed November 2, 2013.
101. Vernon H, Mior S. The Neck Disability Index: a study of reliability and validity. J Manipulative Physiol Ther. 1991;14:409–415.
102. Wallace LS, Rogers E, Turner L, Keenum A, Weiss BD. Suitability of written supplemental materials available on the Internet for non-prescription medications. Am J Health System Pharm. 2006;63:71–78.
103. Wallace LS, Rogers ES, Roskos SE, Holiday DB, Weiss BD. Brief report: screening items to identify patients with limited health literacy skills. J Gen Intern Med. 2006;21:874–877.
104. Wallace LS, Roskos SE, Weiss BD. Readability characteristics of consumer medication information for asthma inhalation devices. J Asthma. 2006;43:375–378.
105. Wallace LS, Turner LW, Ballard JE, Keenum AJ, Weiss BD. Evaluation of web-based osteoporosis educational materials. J Womens Health (Larchmt). 2005;14:936–945.
106. Walsh TM, Volsko TA. Readability assessment of internet-based consumer health information. Respir Care. 2008;53:1310–1315.
107. Ware J Jr, Kosinski M, Keller SD. A 12-item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34:220–233.
108. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): I. Conceptual framework and item selection. Med Care. 1992;30:473–483.
109. Washburn RA, Smith KW, Jette AM, Janney CA. The Physical Activity Scale for the Elderly (PASE): development and evaluation. J Clin Epidemiol. 1993;46:153–162.
110. Weiss BD. Health Literacy and Patient Safety: Help Patients Understand: Manual for Clinicians. 2nd ed. Chicago, IL: AMA Foundation; 2007. Available at: http://med.fsu.edu/userFiles/file/ahec_health_clinicians_manual.pdf. Accessed August 19, 2015.
111. Zahiri CA, Schmalzried TP, Szuszczewicz ES, Amstutz HC. Assessing activity in joint replacement patients. J Arthroplasty. 1998;13:890–895.