Measuring quality of life and patient satisfaction in hand conditions

Main Article Content

Kyra L Sierakowski https://orcid.org/0000-0001-6938-2084
Kathleen A Evans Sanchez
Rachael A Damarell
Nicola R Dean https://orcid.org/0000-0003-2209-053X
Philip A Griffin
Gregory I Bain https://orcid.org/0000-0002-3258-996X

Keywords

hand, psychometrics, patient reported outcome measures, surveys and questionnaires, treatment outcome

Abstract

Background: Patient reported outcomes (PROs) are important for the assessment of the effectiveness of surgical interventions. If patient reported outcome measures (PROMs) are used to prioritise resources then it is important to ensure that the instruments are scientifically valid. This review aims to assess whether the currently available PROMs in hand surgery adhere to international development guidelines and whether they incorporate the use of item response theory (IRT) or Rasch Analysis (RA).


Methods: A systematic review was performed to identify all PROMs that are relevant to the field of hand surgery. An a priori protocol with strict inclusion and exclusion criteria was followed. Only instruments developed in the English language were included. A comprehensive search of nine databases was undertaken. The development methodology of the identified instruments was then analysed, followed by examination of the domain content and initial psychometric validation of each instrument.


Results: A total of 3,039 article citations were retrieved, 139 citations went on to a full text review. A total of 24 patient reported outcome instruments were identified. This consisted of 10 regional upper limb, six hand and/or wrist specific and a further eight condition specific instruments. Documentation of the details of PROM development was lacking for many instruments.


Conclusion: The field of hand surgery has many instruments available but few fulfil international development guidelines or use IRT or RA psychometric techniques. There are limitations in either the breadth of the domains explored or the developmental methodology used in all currently available instruments.

Downloads

Download data is not yet available.
Abstract 200 | PDF Downloads 89 HTML Downloads 44

References

1. Black N. Patient reported outcome measures could help transform healthcare. BMJ. 2013 Clinical research edition;346:f167.
2. Porter ME, Larsson S, Lee TH. Standardizing patient outcomes measurement. New Engl J Med. 2016;374(6):504–06. https://doi.org/10.1056/NEJMp1511701 PMid:26863351
3. Noback PC, Lombardi JM, Seetharaman M, Lee DH, Strauch RJ, Rosenwasser MP. Development and validation of a disease-specific questionnaire for basal joint arthritis. J Wrist Surg. 2017;6(2):126.https://doi.org/10.1055/s-0036-1593612 PMid:28428914 PMCid:PMC5397310
4. Waljee JF, Kim HM, Burns PB, Chung KC. Development of a brief, 12-item version of the Michigan hand questionnaire. Plast Reconstr Surg. 2011;128(1):208–20. https://doi.org/10.1097/PRS.0b013e318218fc51 PMid:21701336 PMCid:PMC3124660
5. Chung BT, Morris SF. Confirmatory factor analysis of the Michigan hand questionnaire. Ann Plast Surg. 2015;74(2):176–81. https://doi.org/10.1097/SAP.0b013e3182956659 PMid:23797023
6. Cano SJ, Browne JP, Lamping DL, Roberts AH, McGrouther DA, Black NA. The patient outcomes of surgery-hand/arm (POS-HAnd/Arm): a new patient-based outcome measure. J Hand Surg-Brit Eur. 2004;29(5):477–85. https://doi.org/10.1016/J.JHSB.2004.06.002 PMid:15336754
7. Lohr KN. Assessing health status and quality-of-life instruments: attributes and review criteria. Qual Life Res 2002;11(3):193–205. https://doi.org/10.1023/A:1015291021312 PMid:12074258
8. Cano SJ, Hobart JC. The problem with health measurement. Patient Prefer Adher. 2011;5:279–90. https://doi.org/10.2147/PPA.S14399 PMid:21792300 PMCid:PMC3140310
9. Atroshi I, Lyrén P-E, Gummesson C. The 6-item CTS symptoms scale: a brief outcomes measure for carpal tunnel syndrome. Qual Life Res. 2009;18(3):347–58. https://doi.org/10.1007/s11136-009-9449-3 PMid:19229657
10. Tennant A, Conaghan PG. The Rasch measurement model in rheumatology: what is it and why use it? when should it be applied, and what should one look for in a Rasch paper? Arthrit Care Res. 2007;57(8):1358–362. https://doi.org/10.1002/art.23108 PMid:18050173
11. Hays RD, Morales LS, Reise SP. Item response theory and health outcomes measurement in the 21st century. Med Care. 2000 Suppl 9;38:II28. https://doi.org/10.1097/00005650-200009002-00007 PMid:10982088 PMCid:PMC1815384
12. Belvedere SL, de Morton NA. Application of Rasch analysis in health care is increasing and is applied for variable reasons in mobility instruments. J Clin Epidemiol. 2010;63(12):1287–297.https://doi.org/10.1016/j.jclinepi.2010.02.012 PMid:20971422
13. Hamilton CB, Chesworth BM. A Rasch-validated version of the upper extremity functional index for interval-level measurement of upper extremity function. Phys Ther. 2013;93(11):1507–519.https://doi.org/10.2522/ptj.20130041 PMid:23813086 PMCid:PMC3827714
14. Beaudreuil J, Allard A, Zerkak D, Gerber RA, Cappelleri JC, Quintero N, Lasbleiz S, Bernabe B, Orcel P, Bardin T. Unite rhumatologique des affections de la main (URAM) scale: development and validation of a tool to assess Dupuytren’s disease-specific disability. Arthrit Care Res. 2011;63(10):1448–455. https://doi.org/10.1002/acr.20564 PMid:21786431
15. US Department of Health and Human Services Food and Drug Administration Center for Drug Evaluation and Research (CDER) Center for Biologics Evaluation and Research (CBER) Center for Devices and Radiological Health (CDRH). Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims [PDF]. Washington, USA: Federal Government 2009. p 65132–33. Available from: https://www.fda.gov/downloads/drugs/guidances/ucm193282.pdf
16. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, Bouter LM, De Vet HC. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res. 2010;19(4):539–49. https://doi.org/10.1007/s11136-010-9606-8 PMid:20169472 PMCid:PMC2852520
17. Moher D, Liberati A, Tetzlaff J, Altman DG, Prisma G. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Plos Med. 2009;6(7):e1000097.https://doi.org/10.1371/journal.pmed.1000097 PMid:19621072 PMCid:PMC2707599
18. Hudak PL, Amadio PC, Bombardier C, Beaton D, Cole D, Davis A, Hawker G, Katz JN, Makela M, Marx RG. Development of an upper extremity outcome measure: The DASH (disabilities of the arm, shoulder, and hand). Am J Ind Med. 1996;29(6):602–08. https://doi.org/10.1002/(SICI)1097-0274(199606)29:6<602::AID-AJIM4>3.0.CO;2-L
19. Kennedy C, Beaton D, Solway S, McConnell S, Bombardier C. Disabilities of the arm, shoulder and hand (DASH). The DASH and QuickDASH outcome measure user’s manual. 3rd ed. Toronto, Ontario: Institute for Work and Health; 2011.
20. Beaton DE, Wright JG, Katz JN, Amadio P, Bombardier C, Cole D, Davis A, Hudak P, Marx R, Hawker G, Makela M, Punnett L. Development of the QuickDASH: comparison of three item-reduction approaches. J Bone Joint Surg. 2005 Series a;87(5):1038–046.
21. Khan WS, Jain R, Dillon B, Clarke L, Fehily M, Ravenscroft M. The ‘M2 DASH Manchester-modified disabilities of arm shoulder and hand score. Hand. 2008;3(3):240–44. https://doi.org/10.1007/s11552-008-9090-6 PMid:18780103 PMCid:PMC2525880
22. Khan WS, Dillon B, Agarwal M, Fehily M, Ravenscroft M. The validity, reliability, responsiveness, and bias of the Manchester-modified disability of the arm, shoulder, and hand score in hand injuries. Hand. 2009;4(4):362–67. https://doi.org/10.1007/s11552-009-9191-x PMid:19381726 PMCid:PMC2787220
23. Cano S, Browne J, Lamping D, Roberts A, McGrouther D, Black N. The patient outcomes of surgery-hand/arm (POS-HAnd/arm): A new patient-based outcome measure. J Hand Surg-Brit Eur. 2004;29(5):477–85.https://doi.org/10.1016/J.JHSB.2004.06.002 PMid:15336754
24. Chen C, Granger C, Peimer C, Moy O, Wald S. Manual ability measure (MAM-16): a preliminary report on a new patient-centred and task-oriented outcome measure of hand function. J Hand Surg. 2005;30(2):207–16. https://doi.org/10.1016/J.JHSB.2004.12.005 PMid:15757777
25. Chen CC, Bode RK. Psychometric validation of the manual ability measure-36 (MAM-36) in patients with neurologic and musculoskeletal disorders. Arch Phys Med Rehab. 2010;91(3):414–20.https://doi.org/10.1016/j.apmr.2009.11.012 PMid:20298833
26. Gabel CP, Michener LA, Burkett B, Neller A. The upper limb functional index: development and determination of reliability, validity, and responsiveness. J Hand Ther. 2006;19(3):328–49.https://doi.org/10.1197/j.jht.2006.04.001 PMid:16861132
27. Stratford PW. Development and initial validation of the upper extremity functional index. Physioth Can. 2001;52:259–67.
28. Hays RD, Spritzer KL, Amtmann D, Lai J-S, DeWitt EM, Rothrock N, DeWalt DA, Riley WT, Fries JF, Krishnan E. Upper-extremity and mobility subdomains from the patient-reported outcomes measurement information system (PROMIS) adult physical functioning item bank. Arch Phys Med Rehab. 2013;94(11):2291–296. https://doi.org/10.1016/j.apmr.2013.05.014 PMid:23751290 PMCid:PMC3812258
29. Doring AC, Nota S, Hageman M, Ring DC. Measurement of upper extremity disability using the patient-reported outcomes measurement information system. J Hand Surg-Am. 2014;39(6):1160–165.https://doi.org/10.1016/j.jhsa.2014.03.013 PMid:24799143
30. Chung KC, Pillsbury MS, Walters MR, Hayward RA. Reliability and validity testing of the Michigan hand outcomes questionnaire. J Hand Surg-Am. 1998;23(4):575–87. https://doi.org/10.1016/S0363-5023(98)80042-7
31. MacDermid JC. Development of a scale for patient rating of wrist pain and disability. J Hand Ther. 1996;9(2):178–83. https://doi.org/10.1016/S0894-1130(96)80076-7
32. Naidu SH, Panchik D, Chinchilli VM. Development and validation of the hand assessment tool. J Hand Ther. 2009 quiz 7;22(3):250–56.
33. Macey AC, Burke FD. Outcomes of hand surgery. J Hand Surg.1995;20 B(6):841–55.
Alexander M, Franko OI, Makhni EC, Zurakowski D, Day CS. Validation of a modern activity hand survey with respect to reliability, construct and criterion validity. J Hand Surg-Eur Vol. 2008;33(5):653–60.https://doi.org/10.1177/1753193408093810 PMid:18977836
34. Mohan A, Vadher J, Ismail H, Warwick D. The Southampton Dupuytren’s scoring scheme. J Plas Surg Hand Su. 2014;48(1):28–33. https://doi.org/10.3109/2000656X.2013.794349 PMid:24428161
35. Levine DW, Simmons BP, Koris MJ, Daltroy LH, Hohl GG, Fossel AH, Katz JN. A self-administered questionnaire for the assessment of severity of symptoms and functional status in carpal tunnel syndrome. J Bone Joint Surg Am. 1993;75(11):1585–592. https://doi.org/10.2106/00004623-199311000-00002 PMid:8245050
36. Atroshi I, Lyren PE, Ornstein E, Gummesson C. The six-item CTS symptoms scale and palmar pain scale in carpal tunnel syndrome. J Hand Surg-Am. 2011;36(5):788–94. https://doi.org/10.1016/j.jhsa.2011.02.021 PMid:21527135
37. Massy-Westropp N, Ahern M, Krishnan J. A visual analogue scale for assessment of the impact of rheumatoid arthritis in the hand: validity and repeatability. J Hand Ther. 2005;18(1):30–33.https://doi.org/10.1197/j.jht.2004.10.003 PMid:15674784
38. Bellamy N, Campbell J, Haraoui B, Buchbinder R, Hobby K, Roth JH, MacDermid JC. Dimensionality and clinical importance of pain and disability in hand osteoarthritis: development of the Australian/Canadian (AUSCAN) osteoarthritis hand index. Osteoarthr Cartilage. 2002;10(11):855–62. https://doi.org/10.1053/joca.2002.0837
39. Bellamy N, Campbell J, Haraoui B, Gerecz-Simon E, Buchbinder R, Hobby K, MacDermid JC. Clinimetric properties of the AUSCAN osteoarthritis hand index: an evaluation of reliability, validity and responsiveness. Osteoarthr Cartilage. 2002;10(11):863–69. https://doi.org/10.1053/joca.2002.0838
40. Becker SJE, Teunis T, Ring D, Vranceanu AM. The trapeziometacarpal arthrosis symptoms and disability questionnaire: development and preliminary validation. Hand. 2016;11(2):197–205.https://doi.org/10.1177/1558944715627239 PMid:27390563 PMCid:PMC4920530
41. Citron N, Hulme CE, Wardle N. A self-administered questionnaire for basal osteoarthritis of the thumb. J Hand Surg-Eur Vol. 2007;32(5):524–28. https://doi.org/10.1016/J.JHSE.2007.03.015 PMid:17950214
42. Dowrick AS, Gabbe BJ, Williamson OD, Cameron PA. Does the disabilities of the arm, shoulder and hand (DASH) scoring system only measure disability due to injuries to the upper limb? J Bone Joint Surg. 2006 Series B;88(4):524–27.
43. Huisstede BMA, Feleus A, Bierma-Zeinstra SM, Verhaar JA, Koes BW. Is the disability of arm, shoulder, and hand questionnaire (DASH) also valid and responsive in patients with neck complaints. Spine. 2009;34(4):E130–E8. https://doi.org/10.1097/BRS.0b013e318195a28b PMid:19182703
44. Gabel CP, Michener LA, Melloh M, Burkett B. Modification of the upper limb functional index to a three-point response improves clinimetric properties. J Hand Ther. 2010;23(1):41–52.https://doi.org/10.1016/j.jht.2009.09.007 PMid:19963344
45. Chung BT, Morris SF. Reliability and internal validity of the Michigan hand questionnaire. Ann Plast Surg. 2014;73(4):385–89. https://doi.org/10.1097/SAP.0b013e31827fb3db PMid:23728243
Wehrli M, Hensler S, Schindele S, Herren DB, Marks M. Measurement properties of the brief michigan hand outcomes questionnaire in patients with Dupuytren contracture. J Hand Surg-Am. 2016;41(9):896–902.https://doi.org/10.1016/j.jhsa.2016.06.009 PMid:27469936
46. MacDermid JC, Tottenham V. Responsiveness of the disability of the arm, shoulder, and hand (DASH) and patient-rated wrist/hand evaluation (PRWHE) in evaluating change after hand therapy. J Hand Ther. 2004;17(1):18–23. https://doi.org/10.1197/j.jht.2003.10.003 PMid:14770134
47. Macey AC, Burke FD, Abbott K, Barton NJ, Bradbury E, Bradley A, Bradley MJ, Brady O, Burt A, Brown P. Outcomes of hand surgery. J Hand Surg-Brit Eur. 1995;20(6):841–55. https://doi.org/10.1016/S0266-7681(95)80059-X
48. Sambandam SN, Priyanka P, Gul A, Ilango B. Critical analysis of outcome measures used in the assessment of carpal tunnel syndrome. Int Orthop. 2008;32(4):497–504. https://doi.org/10.1007/s00264-007-0344-7 PMid:17370071 PMCid:PMC2532277
49. Cano SJ, Browne JP, Lamping DL, Roberts AHN, McGrouther DA, Black NA. The patient outcomes of surgery-hand/arm (POS-Hand/Arm): A new patient-based outcome measure. J Hand Surg-Brit Eur. 2004;29B(5):477–85. https://doi.org/10.1016/J.JHSB.2004.06.002 PMid:15336754
50. Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, Ring L. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1—eliciting concepts for a new PRO instrument. Value Health. 2011;14(8):967–77. https://doi.org/10.1016/j.jval.2011.06.014 PMid:22152165
51. Franchignoni F, Ferriero G, Giordano A, Sartorio F, Vercelli S, Brigatti E. Psychometric properties of QuickDASH-A classical test theory and Rasch analysis study. Manual Ther. 2011;16(2):177–82.https://doi.org/10.1016/j.math.2010.10.004 PMid:21044859
52. Braitmayer K, Dereskewitz C, Oberhauser C, Rudolf KD, Coenen M. Examination of the applicability of the disabilities of the arm, shoulder and hand (DASH) questionnaire to patients with hand injuries and diseases using rasch analysis. Patient. 2017;10(3):367–76. https://doi.org/10.1007/s40271-016-0212-x PMid:28005235
53. Kamal RN, Hand Surgery Quality Consortium. Quality and value in an evolving health care landscape. J Hand Surg. 2016;41(7):794–99. https://doi.org/10.1016/j.jhsa.2016.05.016 PMid:27374791
54. Packham T, MacDermid JC. Measurement properties of the patient-rated wrist and hand evaluation: rasch analysis of responses from a traumatic hand injury population. J Hand Ther. 2013 quiz 24;26(3):216–23.
55. Johnson SP, Sebastin SJ, Rehim SA, Chung KC. The importance of hand appearance as a patient-reported outcome in hand surgery. Plast Reconst Surg. 2015;3(11):e552.
56. Bogoch ER, Escott BG, Ronald K. Hand appearance as a patient motivation for surgery and a determinant of satisfaction with metacarpophalangeal joint arthroplasty for rheumatoid arthritis. J Hand Surg. 2011;36(6):1007–014. https://doi.org/10.1016/j.jhsa.2011.02.002 PMid:21530103
57. Graham B. Defining and measuring patient satisfaction. J Hand Surg. 2016;41(9):929–31. https://doi.org/10.1016/j.jhsa.2016.07.109 PMid:27570227
58. Penta M, Thonnard JL, Tesio L.ABILHAND: a Rasch-built measure of manual ability. Arch Phys Med Rehab. 1998;79(9):1038–042 https://doi.org/10.1016/S0003-9993(98)90167-8

Most read articles by the same author(s)