A systematic review of head and neck cancer quality of life assessment instruments

Oral Oncology

Volumn 48, Issue 10, 2012, Pages 923-937

  Ojo, Bukola ^a   Genden, Eric M ^a   Teng, Marita S ^a   Milbury, Kathrin ^b   Misiukiewicz, Krzysztof J ^a   Badr, Hoda ^a  

^a MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^b UNIVERSITY OF TEXAS   (United States)

Author keywords

Assessment; Head and neck cancer; Instruments; Measures; Quality of Life; Questionnaire

Indexed keywords

CONCURRENT VALIDITY; DYSPHAGIA; FATIGUE; HEAD AND NECK CANCER; HUMAN; MUCOSA INFLAMMATION; PAIN; PATIENT SATISFACTION; PRIORITY JOURNAL; PSYCHOMETRY; QUALITY OF LIFE; REVIEW; SOCIAL PSYCHOLOGY; SWALLOWING; XEROSTOMIA;

HEAD AND NECK NEOPLASMS; HUMANS; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; RETROSPECTIVE STUDIES; TREATMENT OUTCOME;

EID: 84866418355     PISSN: 13688375     EISSN: 18790593     Source Type: Journal    
DOI: 10.1016/j.oraloncology.2012.03.025     Document Type: Review

References (112)

1. American Cancer Society Cancer facts and figures 2005 Atlanta GA
2. S.N. Rogers, S.A. Ahad, and A.P. Murphy A structured review and theme analysis of papers published on 'quality of life' in head and neck cancer: 2000-2005 Oral Oncol 43 2007 843 868
3. B.A. Murphy, S. Ridner, N. Wells, and M. Dietrich Quality of life research in head and neck cancer: a review of the current state of the science Crit Rev Oncol Hematol 62 2007 251 267
4. W. Breitbart, and J. Holland Psychosocial aspects of head and neck cancer Semin Oncol 15 1988 61 69
5. E.R. Gritz, C.L. Carmack, and C. de Moor First year after head and neck cancer: quality of life J Clin Oncol 17 1999 352 360
6. F.J. Keefe, A. Brantley, G. Manuel, and J.E. Crisson Behavioral assessment of head and neck cancer pain Pain 23 1985 327 336
7. F.J. Keefe, R.H. Wilkins, and W.A. Cook Depression, pain, and pain behavior J Consult Clin Psychol 54 1986 665 669
8. M.A. List, C. Ritter-Sterr, and S.B. Lansky A performance status scale for head and neck cancer patients Cancer 66 1990 564 569
9. M.A. List, and J. Stracks Evaluation of quality of life in patients definitively treated for squamous carcinoma of the head and neck Curr Opin Oncol 12 2000 215 220
10. M.M. LoTempio, K.H. Wang, A. Sadeghi, M.D. Delacure, G.F. Juillard, and M.B. Wang Comparison of quality of life outcomes in laryngeal cancer patients following chemoradiation vs. total laryngectomy Otolaryngol Head Neck Surg 132 2005 948 953
11. R.L. Duke, B.H. Campbell, and A.T. Indresano Dental status and quality of life in long-term head and neck cancer survivors Laryngoscope 115 2005 678 683
12. R. Morton, D. Davies, J. Baker, G. Baker, and P. Stell Quality of life in treated head and neck cancer patients: a preliminary report Clin Otolaryngol Allied Sci 9 1984 181 185
13. J. Zabora, K. Brintzenhofeszoc, B. Curbow, C. Hooker, and S. Piantadosi The prevalence of psychological distress by cancer site Psycho Oncology 10 2001 19 28
14. N. Chiu, T. Sun, C. Wu, S. Leung, C. Wang, and J. Wen Clinical characteristics of outpatients at a psycho-oncology clinic in a radiation oncology department Chang Gung Med J 24 2001 181
15. S. Misono, N.S. Weiss, J.R. Fann, M. Redman, and B. Yueh Incidence of suicide in persons with cancer J Clin Oncol 26 2008 4731
16. J.H. Krouse, H.J. Krouse, and R.L. Fabian Adaptation to surgery for head and neck cancer Laryngoscope 99 1989 789 794
17. M.J. Dropkin Coping with disfigurement and dysfunction after head and neck cancer surgery: a conceptual framework Semin Oncol Nurs 5 1989 213 219
18. M.B. Howren, A.J. Christensen, L.H. Karnell, and G.F. Funk Health-related quality of life in head and neck cancer survivors: impact of pretreatment depressive symptoms Health Psychol 29 2010 65 71
19. F. Meyer, A. Fortin, and M. Gelinas Health-related quality of life as a survival predictor for patients with localized head and neck cancer treated with radiation therapy J Clin Oncol 27 2009 2970 2976
20. C.A. Karvonen-Gutierrez, D.L. Ronis, K.E. Fowler, J.E. Terrell, S.B. Gruber, and S.A. Duffy Quality of life scores predict survival among patients with head and neck cancer J Clin Oncol 26 2008 2754 2760
21. J. Scharpf, L.H. Karnell, A.J. Christensen, and G.F. Funk The role of pain in head and neck cancer recurrence and survivorship Arch Otolaryngol Head Neck Surg 135 2009 789 794
22. Induction chemotherapy plus radiation compared with surgery plus radiation in patients with advanced laryngeal cancer. The Department of Veterans Affairs Laryngeal Cancer Study Group. N Engl J Med 1991;324:1685-90.
23. J.E. Terrell, S.G. Fisher, and G.T. Wolf Long-term quality of life after treatment of laryngeal cancer. The Veterans Affairs Laryngeal Cancer Study Group Arch Otolaryngol Head Neck Surg 124 1998 964 971
24. P. Trask, M. Hsu, and R. McQuellon Other paradigms: health-related quality of life as a measure in cancer treatment: its importance and relevance Cancer J 15 2009 435
25. C.C. Gotay, and T.D. Moore Assessing quality of life in head and neck cancer Qual Life Res 1 1992 5 17
26. J. Ringash, and A. Bezjak A structured review of quality of life instruments for head and neck cancer patients Head Neck 23 2001 201 213
27. A. Pusic, J.C. Liu, and C.M. Chen A systematic review of patient-reported outcome measures in head and neck cancer surgery Otolaryngol Head Neck Surg 136 2007 525 535
28. Patient-reported outcome and quality of life instruments database. MAPI Research Trust. < http://www.proqolid.org/ >; 2011.
29. K.N. Lohr Assessing health status and quality-of-life instruments: attributes and review criteria Qual Life Res 11 2002 193 205
30. S.I. Sayed, B. Elmiyeh, and P. Rhys-Evans Quality of life and outcomes research in head and neck cancer: a review of the state of the discipline and likely future directions Cancer Treat Rev 35 2009 397 402
31. C.B. Terwee, S.D.M. Bot, and M.R. de Boer Quality criteria were proposed for measurement properties of health status questionnaires J Clin Epidemiol 60 2007 34 42
32. F. Efficace, A. Bottomley, and D. Osoba Beyond the development of health-related quality-of-life (HRQOL) Measures: A checklist for evaluating HRQOL outcomes in cancer clinical trials - does HRQOL evaluation in prostate cancer research inform clinical decision making? J Clin Oncol 21 2003 3502
33. C.L. Kimberlin, and A.G. Winterstein Validity and reliability of measurement instruments used in research Am J Health Syst Pharm 65 2008 2276
34. D. Moher, A. Liberati, J. Tetzlaff, D.G. Altman Group tP Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement Ann Intern Med 151 2009 264 269
35. Thomas J, Brunton J, Graziosi S. EPPI-Reviewer 4.0: software for research synthesis. EPPI-Centre Software. London: Social Science Research Unit, Institute of Education; 2010.
36. L.B. Mokkink, C.B. Terwee, and D.L. Patrick 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 19 2010 539 549
37. K. Bjordal, E. Hammerlid, and M. Ahlner-Elmqvist Quality of life in head and neck cancer patients: validation of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-H&N35 J Clin Oncol 17 1999 1008 1019
38. S.J. Hassan, and E.A. Weymuller Jr. Assessment of quality of life in head and neck cancer patients Head Neck 15 1993 485 496
39. E.A. Weymuller Jr., R. Alsarraf, B. Yueh, F.W. Deleyiannis, and M.D. Coltrera Analysis of the performance characteristics of the University of Washington Quality of Life instrument and its modification (UW-QOL-R) Arch Otolaryngol Head Neck Surg 127 2001 489 493
40. M.A. List, L.L. Dantonio, and D.F. Cella The performance status scale for head and neck cancer patients and the functional assessment of cancer therapy head and neck scale - a study of utility and validity Cancer 77 1996 2294 2301
41. J.E. Terrell, K.A. Nanavati, R.M. Esclamado, J.K. Bishop, C.R. Bradford, and G.T. Wolf Head and neck cancer-specific quality of life: instrument validation Arch Otolaryngol Head Neck Surg 123 1997 1125 1132
42. D.I. Rosenthal, T.R. Mendoza, and M.S. Chambers Measuring head and neck cancer symptom burden: the development and validation of the M. D. Anderson symptom inventory, head and neck module Head Neck 29 2007 923 931
43. G.F. Funk, L.H. Karnell, A.J. Christensen, P.J. Moran, and J. Ricks Comprehensive head and neck oncology health status assessment Head Neck 25 2003 561 575
44. J.S. Rhee, B.A. Matthews, M. Neuburg, B.R. Logan, M. Burzynski, and A.B. Nattinger Validation of a quality-of-life instrument for patients with nonmelanoma skin cancer Arch Facial Plast Surg 8 2006 314 318
45. J.S. Rhee, B.A. Matthews, M. Neuburg, B.R. Logan, M. Burzynski, and A.B. Nattinger The skin cancer index: clinical responsiveness and predictors of quality of life Laryngoscope 117 2007 399 405
46. A.J. Rathmell, D.V. Ash, M. Howes, and J. Nicholls Assessing quality of life in patients treated for advanced head and neck cancer Clin Oncol (R Coll Radiol) 3 1991 10 16
47. M.F. Gu, Y.Z. Du, X.L. Chen, J.J. Li, H.M. Zhang, and Q. Tong Item selection in the development of quality of life scale for nasopharyngeal carcinoma patients Ai Zheng 28 2009 82 85
48. G. Becker, F. Momm, and C. Xander Religious belief as a coping strategy: an explorative trial in patients irradiated for head-and-neck cancer Strahlenther Onkol 182 2006 270 276
49. P.E. Young, N.J. Beasley, and D.J. Houghton A new short practical quality of life questionnaire for use in head and neck oncology outpatient clinics Clin Otolaryngol Allied Sci 23 1998 528 532
50. N. Patel, G. Har-El, and R. Rosenfeld Quality of life after great auricular nerve sacrifice during parotidectomy Arch Otolaryngol Head Neck Surg 127 2001 884 888
51. Ferrell BR, Grant, Hassey Dow. Quality of Life - Thyroid Version. City of Hope Pain & Palliative Care Resource Center. < http://prc.coh.org/pdf/ Thyroid%20QOL.pdf >; 2000 [accessed 29.11.10].
52. K.H. Dow, B.R. Ferrell, and C. Anello Quality-of-life changes in patients with thyroid cancer after withdrawal of thyroid hormone therapy Thyroid 7 1997 613 619
53. A. Trotti, D.J. Johnson, and C. Gwede Development of a head and neck companion module for the quality of life-radiation therapy instrument (QOL-RTI) Int J Radiat Oncol Biol Phys 42 1998 257 261
54. R.J. Taylor, J.C. Chepeha, and T.N. Teknos Development and validation of the neck dissection impairment index: a quality of life measure Arch Otolaryngol Head Neck Surg 128 2002 44 49
55. K. Roach, E. Budiman-Mak, N. Songsiridej, and Y. Lertratanakul Development of a shoulder pain and disability index Arthritis Care Res 4 1991 143 149
56. G.P. Browman, M.N. Levine, and D.I. Hodson The Head and Neck Radiotherapy Questionnaire: a morbidity/quality-of-life instrument for clinical trials of radiation therapy in locally advanced head and neck cancer J Clin Oncol 11 1993 863 872
57. L.W. DeSanto, K.D. Olsen, W.C. Perry, D.E. Rohe, and R.L. Keith Quality of life after surgical treatment of cancer of the larynx Ann Otol Rhinol Laryngol 104 1995 763 769
58. G. Van der Heijden, P. Leffers, and L. Bouter Shoulder disability questionnaire design and responsiveness of a functional status measure J Clin Epidemiol 53 2000 29 38
59. H. Vernon, and S. Mior The Neck Disability Index: a study of reliability and validity J Manipulative Physiol Ther 14 1991 409 415
60. H. Inoue, K. Nibu, and M. Saito Quality of life after neck dissection Arch Otolaryngol Head Neck Surg 132 2006 662 666
61. S.J. Cano, J.P. Browne, D.L. Lamping, A.H. Roberts, D.A. McGrouther, and N.A. Black The Patient Outcomes of Surgery-Head/Neck (POS-head/neck): a new patient-based outcome measure J Plast Reconstr Aesthet Surg 59 2006 65 73
62. C.S. Stevens, B. Lemon, G.A. Lockwood, J.N. Waldron, A. Bezjak, and J. Ringash The development and validation of a quality-of-life questionnaire for head and neck cancer patients with enteral feeding tubes: the QOL-EF Support Care Cancer 2010
63. D. Johnson, L. Casey, and B. Noriega A pilot study of patient quality of life during radiation therapy treatment Qual Life Res 3 1994 267 272
64. A.Y. Chen, R. Frankowski, and J. Bishop-Leone The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: the M. D. Anderson dysphagia inventory Arch Otolaryngol Head Neck Surg 127 2001 870 876
65. A. Eisbruch, H.M. Kim, J.E. Terrell, L.H. Marsh, L.A. Dawson, and J.A. Ship Xerostomia and its predictors following parotid-sparing irradiation of head-and-neck cancer Int J Radiat Oncol Biol Phys 50 2001 695 704
66. G. Slade Derivation and validation of a short form oral health impact profile Community Dent Oral Epidemiol 25 1997 284 290
67. P.C. Belafsky, D.A. Mouadeb, and C.J. Rees Validity and reliability of the Eating Assessment Tool (EAT-10) Ann Otol Rhinol Laryngol 117 2008 919 924
68. S. Sonis, J. Eilers, and J. Epstein Validation of a new scoring system for the assessment of clinical trial research of oral mucositis induced by radiation or chemotherapy Cancer 85 1999 2103 2113
69. P. Stiff, H. Erder, and W. Bensinger Reliability and validity of a patient self-administered daily questionnaire to assess impact of oral mucositis (OM) on pain and daily functioning in patients undergoing autologous hematopoietic stem cell transplantation (HSCT) Bone Marrow Transplant 37 2006 393 401
70. J.B. Epstein, J.L. Beaumont, and C.K. Gwede Longitudinal evaluation of the oral mucositis weekly questionnaire-head and neck cancer, a patient-reported outcomes questionnaire Cancer 109 2007 1914 1922
71. W. Thomson, and S. Williams Further testing of the xerostomia inventory Oral Surg Oral Med Oral Pathol Oral Radiol Endod 89 2000 46 50
72. K. Wallace, S. Middleton, and I. Cook Development and validation of a self-report symptom inventory to assess the severity of oral-pharyngeal dysphagia Gastroenterology 118 2000 678 687
73. P. Garcia-Peris, L. Paron, and C. Velasco Long-term prevalence of oropharyngeal dysphagia in head and neck cancer patients: impact on quality of life Clin Nutr 26 2007 710 717
74. R.C. Dwivedi, S. St Rose, and J. Roe Validation of the Sydney Swallow Questionnaire (SSQ) in a cohort of head and neck cancer patients Oral Oncol 46 2010 e10 e14
75. A. Pace-Balzan, J.I. Cawood, R. Howell, C.J. Butterworth, D. Lowe, and S.N. Rogers The further development and validation of the Liverpool Oral Rehabilitation Questionnaire: a cross-sectional survey of patients attending for oral rehabilitation and general dental practice Int J Oral Maxillofac Surg 35 2006 72 78
76. O. Ekberg, S. Hamdy, V. Woisard, A. Wuttge-Hannig, and P. Ortega Social and psychological burden of dysphagia: its impact on diagnosis and treatment Dysphagia 17 2002 139 146
77. O.B. Wijers, P.C. Levendag, M.M. Braaksma, M. Boonzaaijer, L.L. Visch, and P.I. Schmitz Patients with head and neck cancer cured by radiation therapy: a survey of the dry mouth syndrome in long-term survivors Head Neck 24 2002 737 747
78. P. Dirix, S. Nuyts, V. Vander Poorten, P. Delaere, and W. Van den Bogaert Efficacy of the BioXtra dry mouth care system in the treatment of radiotherapy-induced xerostomia Support Care Cancer 15 2007 1429 1436
79. B.S. Henson, M.R. Inglehart, A. Eisbruch, and J.A. Ship Preserved salivary output and xerostomia-related quality of life in head and neck cancer patients receiving parotid-sparing radiotherapy Oral Oncol 37 2001 84 93
80. C. McHorney, J. Robbins, and K. Lomax The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity Dysphagia 17 2002 97 114
81. B. Jacobson, A. Johnson, and C. Grywalski The voice handicap index (VHI): development and validation Am J Speech Lang Pathol 6 1997 66
82. C. Rosen, A. Lee, J. Osborne, T. Zullo, and T. Murry Development and validation of the Voice Handicap Index 10 Laryngoscope 114 2004 1549 1556
83. R. Gliklich, R. Glovsky, and W. Montgomery Validation of a voice outcome survey for unilateral vocal cord paralysis Otolaryngol Head Neck Surg 120 1999 153 158
84. N. Hogikyan, and G. Sethuraman Validation of an instrument to measure voice-related quality of life (V-RQOL) J Voice 13 1999 557 569
85. C.D. van Gogh, I.M. Verdonck-de Leeuw, B.A. Boon-Kamma, J.A. Langendijk, D.J. Kuik, and H.F. Mahieu A screening questionnaire for voice problems after treatment of early glottic cancer Int J Radiat Oncol Biol Phys 62 2005 700 705
86. R.C. Dwivedi, S. St Rose, and J.W. Roe First report on the reliability and validity of speech handicap index in native English-speaking patients with head and neck cancer Head Neck 33 2011 341 348
87. R. Kazi, A. Singh, and J. De Cordova Validation of a voice prosthesis questionnaire to assess valved speech and its related issues in patients following total laryngectomy Clin Otolaryngol 31 2006 404 410
88. J.B. Kahn, R.E. Gliklich, K.P. Boyev, M.G. Stewart, R.B. Metson, and M.J. McKenna Validation of a patient-graded instrument for facial nerve paralysis: The FaCE Scale Laryngoscope 111 2001 387 398
89. T. Carr, T. Moss, and D. Harris The DAS24: a short form of the Derriford Appearance Scale DAS59 to measure individual responses to living with problems of appearance Br J Health Psychol 10 2005 285 298
90. S. Moolenburgh, M. Mureau, H. Duivenvoorden, and S. Hofer Validation of a questionnaire assessing patient's aesthetic and functional outcome after nasal reconstruction: the patient NAFEQ-score J Plast Reconstr Aesthet Surg 62 2009 656 662
91. M. Kurihara, H. Shimizu, and K. Tsuboi Development of quality of life questionnaire in Japan: quality of life assessment of cancer patients receiving chemotherapy Psychooncology 8 1999 355 363
92. A. Cieza, and G. Stucki Content comparison of health-related quality of life (HRQOL) instruments based on the international classification of functioning, disability and health (ICF) Qual Life Res 14 2005 1225 1237
93. U. Tschiesner, S.N. Rogers, U. Harreus, A. Berghaus, and A. Cieza Content comparison of quality of life questionnaires used in head and neck cancer based on the international classification of functioning, disability and health: a systematic review Eur Arch Otorhinolaryngol 265 2008 627 637
94. M.Y. Kim, A. Dahlberg, and P. Hagell Respondent burden and patient perceived validity of the PDQ 39 Acta Neurol Scand 113 2006 132 137
95. H.M. Mehanna, and R.P. Morton Patients' views on the utility of quality of life questionnaires in head and neck cancer: a randomised trial Clin Otolaryngol 31 2006 310 316
96. A. Zigmond, and R. Snaith The hospital anxiety and depression scale Acta Psychiatr Scand 67 1983 361 370
97. R.P. Morton, and M.E. Izzard Quality-of-life outcomes in head and neck cancer patients World J Surg 27 2003 884 889
98. N.K. Aaronson Quality of life assessment in clinical trials: methodologic issues Control Clin Trials 10 1989 195 208
99. M.A. Sprangers, A. Cull, K. Bjordal, M. Groenvold, and N.K. Aaronson The European Organization for Research and Treatment of Cancer. Approach to quality of life assessment: guidelines for developing questionnaire modules. EORTC Study Group on Quality of Life Qual Life Res 2 1993 287 295
100. S.F. Garcia, D. Cella, and S.B. Clauser Standardizing patient-reported outcomes assessment in cancer clinical trials: a patient-reported outcomes measurement information system initiative J Clin Oncol 25 2007 5106 5112
101. B.B. Reeve, R.D. Hays, and J.B. Bjorner Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS) Med Care 45 2007 S22 31
102. R.P. Morton, and I.J. Witterick Rationale and development of a quality-of-life instrument for head-and-neck cancer patients Am J Otolaryngol 16 1995 284 293
103. M.C. Tong, P.S. Lo, and K.H. Wong Development and validation of the functional assessment of cancer therapy nasopharyngeal cancer subscale Head Neck 31 2009 738 747
104. C. Baker, and D.E. Schuller A functional status scale for measuring quality of life outcomes in head and neck cancer patients Cancer Nurs 18 1995 452 457
105. R.E. Gliklich, T.A. Goldsmith, and G.F. Funk Are head and neck specific quality of life measures necessary? Head Neck 19 1997 474 480
106. C. Hopkins, S. Gillett, R. Slack, V.J. Lund, and J.P. Browne Psychometric validity of the 22-item Sinonasal Outcome Test Clin Otolaryngol 34 2009 447 454
107. B.A. Murphy, M.S. Dietrich, and N. Wells Reliability and validity of the Vanderbilt Head and Neck Symptom Survey: a tool to assess symptom burden in patients treated with chemoradiation Head Neck 32 2010 26 37
108. D. van der Windt, G. van der Heijden, A. de Winter, B. Koes, W. Deville, and L. Bouter The responsiveness of the shoulder disability questionnaire Ann Rheum Dis 57 1998 82 87
109. K. Cheng, S. Leung, R. Liang, J. Tai, R. Yeung, and D. Thompson Oropharyngeal mucositis-specific quality-of-life measure in patients with cancer therapy Hong Kong Med J 16 2010 42 46
110. G. Blood Development and assessment of a scale addressing communication needs of patients with laryngectomies Am J Speech Lang Pathol 2 1993 82
111. C. Finizia, B. Bergman, and J. Lindstrom A cross-sectional validation study of self-evaluation of communication experiences after laryngeal cancer - a questionnaire for use in the voice rehabilitation of laryngeal cancer patients Acta Oncol 38 1999 573 580
112. M. Johansson, A. Ryden, and C. Finizia Self evaluation of communication experiences after laryngeal cancer - a longitudinal questionnaire study in patients with laryngeal cancer BMC Cancer 8 2008 80