Patient-reported outcome measures in psoriasis: The good, the bad and the missing!

British Journal of Dermatology

Volumn 172, Issue 5, 2015, Pages 1210-1221

  Kitchen, H ^a   Cordingley, L ^a   Young, H ^a   Griffiths, C E M ^a   Bundy, C ^a  

^a UNIVERSITY OF MANCHESTER   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

CINAHL; CONTENT VALIDITY; HUMAN; KOO MENTER PSORIASIS INSTRUMENT; MEDLINE; NAIL PSORIASIS; OUTCOME ASSESSMENT; PRACTICE GUIDELINE; PRIORITY JOURNAL; PRURITUS; PSORIASIS; PSORIASIS AREA AND SEVERITY INDEX; PSORIASIS SYMPTOM INVENTORY; PSYCINFO; QUALITY OF LIFE; QUESTIONNAIRE; REVIEW; SKIN DISEASE ASSESSMENT; SYMPTOM ASSESSMENT; SYSTEMATIC REVIEW; WELLBEING; COST OF ILLNESS; DISABILITY; PATIENT SATISFACTION; PSYCHOLOGY; PSYCHOMETRY; SELF REPORT; SEVERITY OF ILLNESS INDEX;

COST OF ILLNESS; DISABILITY EVALUATION; HUMANS; PATIENT OUTCOME ASSESSMENT; PATIENT SATISFACTION; PSORIASIS; PSYCHOMETRICS; QUALITY OF LIFE; SELF REPORT; SEVERITY OF ILLNESS INDEX; SURVEYS AND QUESTIONNAIRES;

EID: 84929129586     PISSN: 00070963     EISSN: 13652133     Source Type: Journal    
DOI: 10.1111/bjd.13691     Document Type: Review

References (93)

1. National Health Service. Psoriasis symptoms. Available at: http://www.nhs.uk/Conditions/Psoriasis/Pages/Symptoms.aspx (last acc-essed 18 February 2015).
2. Globe D, Bayliss MS, Harrison DJ,. The impact of itch symptoms in psoriasis: results from physician interviews and patient focus groups. Health Qual Life Outcomes 2009; 7: 62.
3. Sampogna F, Gisondi P, Melchi CF, et al,. Prevalence of symptoms experienced by patients with different clinical types of psoriasis. Br J Dermatol 2004; 151: 594-9.
4. Choi J, Koo JY,. Quality of life issues in psoriasis. J Am Acad Dermatol 2003; 49 (Suppl. 2): S57-61.
5. Ljosaa TM, Rustoen T, Mork C, et al,. Skin pain and discomfort in psoriasis: an exploratory study of symptom prevalence and characteristics. Acta Derm Venereol 2010; 90: 39-45.
6. Rapp SR, Feldman SR, Exum ML, et al,. Psoriasis causes as much disability as other major medical diseases. J Am Acad Dermatol 1999; 41: 401-7.
7. Sampogna F, Tabolli S, Abeni D, IDI Multipurpose Psoriasis Research on Vital Experiences (IMPROVE) investigators. Living with psoriasis: prevalence of shame, anger, worry, and problems in daily activities and social life. Acta Derm Venereol 2012; 92: 299-303.
8. Kirby B, Richards HL, Mason DL, et al,. Alcohol consumption and psychological distress in patients with psoriasis. Br J Dermatol 2008; 158: 138-40.
9. Renzi C, Picardi A, Abeni D, et al,. Association of dissatisfaction with care and psychiatric morbidity with poor treatment compliance. Arch Dermatol 2002; 138: 337-42.
10. Rapp SR, Cottrell CA, Leary MR,. Social coping strategies associated with quality of life decrements among psoriasis patients. Br J Dermatol 2001; 145: 610-16.
11. Ginsburg IH, Link BG,. Psychosocial consequences of rejection and stigma feelings in psoriasis patients. Int J Dermatol 1993; 32: 587-91.
12. Herron MD, Hinckley M, Hoffman MS, et al,. Impact of obesity and smoking on psoriasis presentation and management. Arch Dermatol 2005; 141: 1527-34.
13. Favato G,. High incidence of smoking habit in psoriatic patients. Am J Med 2008; 121: e17.
14. Gelfand JM, Azfar RS, Mehta NN,. Psoriasis and cardiovascular risk: strength in numbers. J Invest Dermatol 2010; 130: 919-22.
15. Stern RS, Nijsten T,. Going beyond associative studies of psoriasis and cardiovascular disease. J Invest Dermatol 2012; 132: 499-501.
16. Department of Health. The public health outcomes framework 2013 to 2016. Available at: https://www.gov.uk/government/publications/healthy-lives-healthy-people-improving-outcomes-and-supporting-transparency (last accessed 18 February 2015).
17. Department of Health. The NHS outcomes framework 2013 to 2014. Available at: https://www.gov.uk/government/publications/nhs-outcomes-framework-2013-to-2014 (last accessed 18 February 2015).
18. Snyder CF, Aaronson NK, Choucair AK, et al,. Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Qual Life Res 2012; 21: 1305-14.
19. Snyder CF, Aaronson NK,. Use of patient-reported outcomes in clinical practice. Lancet 2009; 374: 369-70.
20. Black N,. Patient reported outcome measures could help transform healthcare. BMJ 2013; 346: f167.
21. Fung CH, Hays RD,. Prospects and challenges in using patient-reported outcomes in clinical practice. Qual Life Res 2008; 17: 1297-302.
22. Ashcroft DM, Li Wan PA, Williams HC, Griffiths CE,. Quality of life measures in psoriasis: a critical appraisal of their quality. J Clin Pharm Ther 1998; 23: 391-8.
23. Bronsard V, Paul C, Prey S, et al,. What are the best outcome measures for assessing quality of life in plaque type psoriasis? A systematic review of the literature. J Eur Acad Dermatol Venereol 2010; 24 (Suppl. 2): 17-22.
24. National Institute for Health and Care Excellence (NICE). Psoriasis: the assessment and management of psoriasis. NICE clinical guideline 153. Available at: https://www.nice.org.uk/guidance/cg153 (last accessed 18 February 2015).
25. Finlay AY, Khan GK,. Dermatology Life Quality Index (DLQI)-a simple practical measure for routine clinical use. Clin Exp Dermatol 1994; 19: 210-16.
26. Twiss J, Meads DM, Preston EP, et al,. Can we rely on the Dermatology Life Quality Index as a measure of the impact of psoriasis or atopic dermatitis? J Invest Dermatol 2012; 132: 76-84.
27. De Korte J, Mombers FM, Sprangers MA, Bos JD,. The suitability of quality-of-life questionnaires for psoriasis research: a systematic literature review. Arch Dermatol 2002; 138: 1221-7.
28. Nijsten T,. Dermatology life quality index: time to move forward. J Invest Dermatol 2012; 132: 11-13.
29. Finlay AY, Basra MK, Piguet V, Salek MS,. Dermatology life quality index (DLQI): a paradigm shift to patient-centered outcomes. J Invest Dermatol 2012; 132: 2464-5.
30. U.S. 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. Available at: http://www.fda.gov/downloads/Drugs/Guidances/UCM193282.pdf (last accessed 18 February 2015).
31. International Society for Quality of Life Research. User's guide to implementing patient-reported outcomes assessment in clinical practice. Available at: http://www.isoqol.org/research/isoqol-publications (last accessed 18 February 2015).
32. Chularojanamontri L, Griffiths CE, Chalmers RJ,. The Simplified Psoriasis Index (SPI): a practical tool for assessing psoriasis. J Invest Dermatol 2013; 133: 1956-62.
33. Feldman SR, Fleischer AB Jr, Reboussin DM, et al,. The self-administered psoriasis area and severity index is valid and reliable. J Invest Dermatol 1996; 106: 183-6.
34. Gottlieb A, Feng J, Harrison DJ, Globe D,. Validation and response to treatment of a pruritus self-assessment tool in patients with moderate to severe psoriasis. J Am Acad Dermatol 2010; 63: 580-6.
35. Gottlieb AB, Chaudhari U, Baker DG, et al,. The National Psoriasis Foundation Psoriasis Score (NPF-PS) system versus the Psoriasis Area Severity Index (PASI) and Physician's Global Assessment (PGA): a comparison. J Drugs Dermatol 2003; 2: 260-6.
36. Martin ML, McCarrier KP, Chiou CF, et al,. Early development and qualitative evidence of content validity for the Psoriasis Symptom Inventory (PSI), a patient-reported outcome measure of psoriasis symptom severity. J Dermatolog Treat 2013; 24: 255-60.
37. Feldman SR, Clark AR, Venkat AP, et al,. The Self-Administered Psoriasis Area and Severity Index provides an objective measure of psoriasis severity. Br J Dermatol 2005; 152: 382-3.
38. Fleischer AB Jr, Feldman SR, Dekle CL,. The SAPASI is valid and responsive to psoriasis disease severity changes in a multi-center clinical trial. J Dermatol 1999; 26: 210-15.
39. Bushnell DM, Martin ML, McCarrier K, et al,. Validation of the Psoriasis Symptom Inventory (PSI), a patient-reported outcome measure to assess psoriasis symptom severity. J Dermatolog Treat 2013; 24: 356-60.
40. Kirby B, Fortune DG, Bhushan M, et al,. The Salford Psoriasis Index: an holistic measure of psoriasis severity. Br J Dermatol 2000; 142: 728-32.
41. Chularojanamontri L, Griffiths CE, Chalmers RJ,. Responsiveness to change and interpretability of the simplified psoriasis index. J Invest Dermatol 2014; 134: 351-8.
42. Reich K, Griffiths CE,. The relationship between quality of life and skin clearance in moderate-to-severe psoriasis: lessons learnt from clinical trials with infliximab. Arch Dermatol Res 2008; 300: 537-44.
43. Dommasch ED, Shin DB, Troxel AB, et al,. Reliability, validity and responsiveness to change of the Patient Report of Extent of Psoriasis Involvement (PREPI) for measuring body surface area affected by psoriasis. Br J Dermatol 2010; 162: 835-42.
44. Nijsten T, Unaeze J, Stern RS,. Refinement and reduction of the Impact of Psoriasis Questionnaire: classical test theory vs. Rasch analysis. Br J Dermatol 2006; 154: 692-700.
45. McKenna SP, Cook SA, Whalley D, et al,. Development of the PSORIQoL, a psoriasis-specific measure of quality of life designed for use in clinical practice and trials. Br J Dermatol 2003; 149: 323-31.
46. Tennant A, McKenna SP, Hagell P,. Application of Rasch analysis in the development and application of quality of life instruments. Value Health 2004; 7 (Suppl. 1): S22-6.
47. Finlay AY, Kelly SE,. Psoriasis-an index of disability. Clin Exp Dermatol 1987; 12: 8-11.
48. Feldman SR, Koo JY, Menter A, Bagel J,. Decision points for the initiation of systemic treatment for psoriasis. J Am Acad Dermatol 2005; 53: 101-7.
49. Koo J, Menter A, Lebwohl M, et al,. The relationship between quality of life and disease severity: results from a large cohort of mild, moderate and severe psoriasis patients. Br J Dermatol 2002; 147: 1077-9.
50. Gupta MA, Gupta AK,. The Psoriasis Life Stress Inventory: a preliminary index of psoriasis-related stress. Acta Derm Venereol 1995; 75: 240-3.
51. Ortonne JP, Baran R, Corvest M, et al,. Development and validation of nail psoriasis quality of life scale (NPQ10). J Eur Acad Dermatol Venereol 2010; 24: 22-7.
52. Pagliarello C, Di PC, Paradisi A, et al,. Measuring empowerment in patients with psoriasis: the Psoriasis Empowerment Enquiry in the Routine Practice (PEER) questionnaire. Eur J Dermatol 2010; 20: 200-4.
53. Safikhani S, Sundaram M, Bao Y, et al,. Qualitative assessment of the content validity of the Dermatology Life Quality Index in patients with moderate to severe psoriasis. J Dermatolog Treat 2013; 24: 50-9.
54. Thorneloe RJ, Bundy C, Griffiths CE, et al,. Adherence to medication in patients with psoriasis: a systematic literature review. Br J Dermatol 2013; 168: 20-31.
55. Smith SC, Cano S, Lamping DL, et al,. Patient-reported outcome measures (PROMs) for routine use in treatment centres: recommendations based on a review of the scientific evidence. 2005. Available at: https://www.lshtm.ac.uk/php/departmentofhealthservicesresearchandpolicy/assets/promsnickblack2005.pdf (last accessed 18 February 2015).
56. 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? Arthritis Rheum 2007; 57: 1358-62.
57. Guyatt GH, Osoba D, Wu AW, et al,. Methods to explain the clinical significance of health status measures. Mayo Clin Proc 2002; 77: 371-83.
58. Sampogna F, Styles I, Tabolli S, Abeni D,. Measuring quality of life in psoriasis: the CALIPSO questionnaire. Eur J Dermatol 2011; 21: 67-78.
59. McKenna KE, Stern RS,. The impact of psoriasis on the quality of life of patients from the 16-center PUVA follow-up cohort. J Am Acad Dermatol 1997; 36: 388-94.
60. Inanir I, Aydemir O, Gunduz K, et al,. Developing a quality of life instrument in patients with psoriasis: the Psoriasis Quality of Life Questionnaire (PQLQ). Int J Dermatol 2006; 45: 234-8.
61. Mühleisen B, Buchi S, Schmidhauser S, et al,. Pictorial Representation of Illness and Self Measure (PRISM): a novel visual instrument to measure quality of life in dermatological inpatients. Arch Dermatol 2009; 145: 774-80.
62. McKenna SP, Doward LC, Whalley D, et al,. Development of the PsAQoL: a quality of life instrument specific to psoriatic arthritis. Ann Rheum Dis 2004; 63: 162-9.
63. Ruiz MA, Heras F, Alomar A, et al,. Development and validation of a questionnaire on 'Satisfaction with dermatological treatment of hand eczema' (DermaSat). Health Qual Life Outcomes 2010; 8: 127.
64. Augustin M, Radtke MA, Zschocke I, et al,. The patient benefit index: a novel approach in patient-defined outcomes measurement for skin diseases. Arch Dermatol Res 2009; 301: 561-71.
65. Chren MM, Lasek RJ, Quinn LM, Covinsky KE,. Convergent and discriminant validity of a generic and a disease-specific instrument to measure quality of life in patients with skin disease. J Invest Dermatol 1997; 108: 103-7.
66. Chren M,. Improved discriminative and evaluative capability of a refined version of Skindex, a quality-of-life instrument for patients with skin diseases. Arch Dermatol 1997; 133: 1433-40.
67. Chren MM,. The Skindex instruments to measure the effects of skin disease on quality of life. Dermatol Clin 2012; 30: 231-6, xiii.
68. Morgan M, McCreedy R, Simpson J, Hay RJ,. Dermatology quality of life scales-a measure of the impact of skin diseases. Br J Dermatol 1997; 136: 202-6.
69. Evers AW, Duller P, van de Kerkhof PC, et al,. The Impact of Chronic Skin Disease on Daily Life (ISDL): a generic and dermatology-specific health instrument. Br J Dermatol 2008; 158: 101-8.
70. Pawin H, Beylot C, Chivot M, et al,. Creation of a tool to assess adherence to treatments for acne. Dermatology 2009; 218: 26-32.
71. Nicholson K, Abramova L, Chren MM, et al,. A pilot quality-of-life instrument for acne rosacea. J Am Acad Dermatol 2007; 57: 213-21.
72. Ando T, Hashiro M, Noda K, et al,. Development and validation of the psychosomatic scale for atopic dermatitis in adults. J Dermatol 2006; 33: 439-50.
73. Rapp SR, Feldman SR, Graham G, et al,. The Acne Quality of Life Index (Acne-QOLI): development and validation of a brief instrument. Am J Clin Dermatol 2006; 7: 185-92.
74. Augustin M, Lange S, Wenninger K, et al,. Validation of a comprehensive Freiburg Life Quality Assessment (FLQA) core questionnaire and development of a threshold system. Eur J Dermatol 2004; 14: 107-13.
75. Whalley D, McKenna SP, Dewar AL, et al,. A new instrument for assessing quality of life in atopic dermatitis: international development of the Quality of Life Index for Atopic Dermatitis (QoLIAD). Br J Dermatol 2004; 150: 274-83.
76. Martin AR, Lookingbill DP, Botek A, et al,. Health-related quality of life among patients with facial acne-assessment of a new acne-specific questionnaire. Clin Exp Dermatol 2001; 26: 380-5.
77. Chen SC, Yeung J, Chren MM,. Scalpdex: a quality-of-life instrument for scalp dermatitis. Arch Dermatol 2002; 138: 803-7.
78. Schmid-Ott G, Jaeger B, Kuensebeck HW, et al,. Dimensions of stigmatization in patients with psoriasis in a 'Questionnaire on Experience with Skin Complaints'. Dermatology 1996; 193: 304-10.
79. Anderson R, Rajagopalan R,. Responsiveness of the Dermatology-specific Quality of Life (DSQL) instrument to treatment for acne vulgaris in a placebo-controlled clinical trial. Qual Life Res 1998; 7: 723-34.
80. Stangier U, Ehlers A, Gieler U,. Measuring adjustment to chronic skin disorders: validation of a self-report measure. Psychol Assess 2003; 15: 532-49.
81. 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: 473-83.
82. Ware JE Jr,. SF-36 health survey update. Spine (Phila Pa 1976) 2000; 25: 3130-9.
83. Fries JF, Spitz PW, Young DY,. The dimensions of health outcomes: the health assessment questionnaire, disability and pain scales. J Rheumatol 1982; 9: 789-93.
84. Rabin R, de Charro F,. EQ-5D: a measure of health status from the EuroQol Group. Ann Med 2001; 33: 337-43.
85. The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc Sci Med 1998; 46: 1569-85.
86. Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychol Med 1998; 28: 551-8.
87. Atkinson MJ, Sinha A, Hass SL, et al,. Validation of a general measure of treatment satisfaction, the Treatment Satisfaction Questionnaire for Medication (TSQM), using a national panel study of chronic disease. Health Qual Life Outcomes 2004; 2: 12.
88. Bergner M, Bobbitt RA, Carter WB, Gilson BS,. The Sickness Impact Profile: development and final revision of a health status measure. Med Care 1981; 19: 787-805.
89. Broadbent E, Petrie KJ, Main J, Weinman J,. The brief illness perception questionnaire. J Psychosom Res 2006; 60: 631-7.
90. Meyer TJ, Miller ML, Metzger RL, Borkovec TD,. Development and validation of the Penn State Worry Questionnaire. Behav Res Ther 1990; 28: 487-95.
91. Sampogna F, Sera F, Abeni D, IDI Multipurpose Psoriasis Research on Vital Experiences (IMPROVE) Investigators. Measures of clinical severity, quality of life, and psychological distress in patients with psoriasis: a cluster analysis. J Invest Dermatol 2004; 122: 602-7.
92. McKenna SP, Doward LC, Niero M, Erdman R,. Development of needs-based quality of life instruments. Value Health 2004; 7 (Suppl. 1): S17-21.
93. Nijsten T, Whalley D, Gelfand J, et al,. The psychometric properties of the psoriasis disability index in United States patients. J Invest Dermatol 2005; 125: 665-72.