Not all roads lead to Rome - A review of quality of life measurement in adults with diabetes

Diabetic Medicine

Volumn 26, Issue 4, 2009, Pages 315-327

  Speight, J ^a,b   Reaney, M D ^b   Barnard, K D ^c  

^a BRUNEL UNIVERSITY   (United Kingdom)

^b AHP Research   (United Kingdom)

^c UNIVERSITY OF SOUTHAMPTON   (United Kingdom)

Author keywords

Diabetes; Measurement; Quality of life; Review

Indexed keywords

ACCURACY; BECK DEPRESSION INVENTORY; DIABETES MELLITUS; HEALTH STATUS; HOSPITAL ANXIETY AND DEPRESSION SCALE; HUMAN; NOMENCLATURE; OUTCOME ASSESSMENT; PATIENT SATISFACTION; PSYCHOLOGICAL WELL BEING; PSYCHOMETRY; QUALITY OF LIFE; QUESTIONNAIRE; REVIEW; SHORT FORM 36; SYSTEMATIC REVIEW; WORLD HEALTH ORGANIZATION;

ADULT; DIABETES MELLITUS, TYPE 1; DIABETES MELLITUS, TYPE 2; HUMANS; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; SELF CARE;

EID: 64249093502     PISSN: 07423071     EISSN: 14645491     Source Type: Journal    
DOI: 10.1111/j.1464-5491.2009.02682.x     Document Type: Review

References (90)

1. Rubin RR, Snoek FJ, Testa MA, Polonsky WH, Delamater AM, Hirsch A et al. Diabetes and quality of life. Diabetes Spectr 2000 13 : 1 29.
2. Wolpert HA, Anderson BJ. Management of diabetes: are doctors framing the benefits from the wrong perspective Br Med J 2001 323 : 994 996.
3. Speight J, Bradley C. DAFNE: improved quality of life as a result of intensified treatment is counter-intuitive to many clinicians. Br Med J 2002. Available at: http://bmj.com/cgi/eletters/325/7367/746#26769 Last accessed 1 March 2009.
4. Polonsky WH. Understanding and assessing diabetes-specific quality of life. Diabetes Spectr 2000 13 : 36.
5. Barnard KD, Lloyd CE, Skinner TC. Systematic literature review: quality of life associated with insulin pump use in Type 1 diabetes. Diabet Med 2007 24 : 607 617.
6. DCCT Research Group. The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. N Engl J Med 1993 329 : 977 986.
7. UK Prospective Diabetes Study Group. Quality of life in type 2 diabetic patients is affected by complications but not by intensive policies to improve blood glucose or blood pressure control (UKPDS 37). Diabetes Care 1999 22 : 1125 1136.
8. Bradley C. Importance of differentiating health status from quality of life. Lancet 2001 357 : 7 8.
9. Bradley C. Measuring quality of life in diabetes. Diabetes Annu 1996 10 : 207 224.
10. Garratt AM, Schmidt L, Fitzpatrick R. Patient-assessed health outcome measures for diabetes: a structured review. Diabet Med 2002 19 : 1 11.
11. Bradley C, Todd C, Gorton T, Symonds E, Martin A, Plowright R. The development of an individualized questionnaire measure of perceived impact of diabetes on quality of life: the ADDQoL. Qual Life Res 1999 8 : 79 91.
12. Schlundt D, Pichert JW, Gregory B, Davis D. Eating and diabetes: a patient-centred approach. In : Rubin RR, ed. Practical Psychology for Diabetes Clinicians: How to Deal with the Key Behavioural Issues Faced by Patients and Health Care Teams. Alexandria : American Diabetes Association, 1996 : 63 72.
13. The Food and Drug Administration (FDA). Guidance for industry: patient-reported outcomes: use in medical product development to support labelling claims: draft guidance. Health Qual Life Outcomes 2006 4 : 79.
14. Todd C, Bradley C. Evaluating the design and development of psychological scales (378). In : Bradley C, ed. Handbook of Psychology and Diabete. Chur, Switzerland : Harwood Academic Publishers, 1994 : 15 42.
15. Loewenthal KM. An Introduction to Psychological Tests and Scales. London : UCL Press Limited, 1996.
16. Nunnally JC. Psychometric theory, 3rd edn. New York : McGraw-Hill, 1994.
17. Hayry M. Measuring the quality of life: why, how and what? Theor Med Bioeth 1991 12 : 97 116.
18. Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. J Am Med Assoc 1994 272 : 619 626.
19. Joyce CRB. Requirements for the assessment of individual quality of life. In : McGee HM, Bradley C, eds. Quality of Life Following Renal Failure: Psychosocial Challenges Accompanying High Technology Medicine. Chur, Switzerland : Harwood Academic Publishers, 1994 : 43 54.
20. Barnard KD, Speight J, Skinner TC. Quality of life and the impact of CSII on children/adolescents with Type 1 diabetes and their parents. Pract Diabetes Int 2008 25 : 278 283.
21. Walker J, Bradley C. Assessing the quality of life of adolescents with diabetes: using the SEIQoL, DQoL, patient and diabetes specialist nurse ratings. Pract Diabetes Int 2002 19, 141 144.
22. Woodcock A, Bradley C, Plowright R, ffytche T, Kennedy-Martin T, Hirsch A. The influence of diabetic retinopathy on quality of life: interviews to guide the design of a condition-specific, individualised questionnaire: the RetDQoL. Patient Educ Couns 2004 53 : 365 383.
23. McGee HM, O'Boyle CA, Hickey A, O'Malley K, Joyce CR. Assessing the quality of life of the individual: the SEIQoL with a healthy and a gastroenterology unit population. Psychol Med 1991 21 : 749 759.
24. Jacobson AM, The DCCT Research Group. The diabetes quality of life measure. In : Bradley C, ed. Handbook of Psychology and Diabetes: A Guide to Psychological Measurement in Diabetes Research and Practice. Chur, Switzerland : Harwood Academic Publishers, 1994 : 65 88.
25. The DCCT Research Group. Reliability and validity of a diabetes quality of life measure for the Diabetes Control and Complications Trial (DCCT). Diabetes Care 1988 11 : 725 732.
26. Bott U, Muhlhauser I, Overmann H, Berger M. Validation of a diabetes-specific quality-of-life scale for patients with type 1 diabetes. Diabetes Care 1998 21 : 757 769.
27. Nathan DM, Fogel H, Norman D, Russell P, Tolkoff-Rubin N, Delmonico F et al. Long-term metabolic and quality of life results with pancreatic/renal transplantation in insulin-dependent diabetes mellitus. Transplantation 1991 52 : 85 91.
28. Tsui E, Parkes R, Barnie A, Zinman B, Ross S. Intensive insulin therapy with insulin lispro: a randomised controlled trial of continuous subcutaneous insulin infusion versus multiple daily insulin injection. Diabetes Care 2001 24 : 1722 1727.
29. Joyce CR, Hickey A, McGee HM, O'Boyle CA. A theory-based method for the evaluation of individual quality of life: the SEIQoL. Qual Life Res 2003 12 : 275 280.
30. The DAFNE Study Group. Training in flexible, intensive insulin management to enable dietary freedom in people with type 1 diabetes: dose adjustment for normal eating (DAFNE) randomised controlled trial. Br Med J 2002 325 : 746 749.
31. Speight J, Woodcock A, Plowright R, Bradley C. Design of an individualised measure of the impact of diabetes on the quality of life of elderly people: the ADDQoL Senior. Qual Life Res 2003 12 : 1509.
32. The WHOQOL Group. The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc Sci Med 1998 46 : 1569 1585.
33. The WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med 1998 28 : 551 558.
34. Rose M, Burkert U, Scholler G, Schirop T, Danzer G, Klapp BF. Determinants of the quality of life of patients with diabetes under intensified insulin therapy. Diabetes Care 1998 21 : 1876 1885.
35. Davies MJ, Heller SR, Skinner TC, Campbell MJ, Carey ME, Cradock S et al. Effectiveness of the diabetes education and self-management for ongoing and newly diagnosed (DESMOND) programme for people with newly diagnosed type 2 diabetes: cluster randomised controlled trial. Br Med J 2008 25 : 35 42.
36. Prutkin JM, Feinstein AR. Quality-of-life measurements: origin and pathogenesis. Yale J Biol Med 2002 75 : 79 93.
37. Edelman D, Olsen MK, Dudley TK, Harris AC, Oddone EZ. Impact of diabetes screening on quality of life. Diabetes Care 2002 25 : 1022 1026.
38. Redekop WK, Rutten GEHM, Koopmanschap MA, Wolffenbuttel BHR, Stolk RP, Niessen LW. Health-related quality of life and treatment satisfaction in Dutch patients with type 2 diabetes. Diabetes Care 2002 25 : 458 463.
39. Ware JE, Sherbourne CD. The MOS 36-Item Short-Form Health Survey (SF-36). 1. Conceptual framework and item selection. Med Care 1992 30 : 473 483.
40. Woodcock AJ, Julious SA, Kinmonth AL, Campbell MJ. Problems with the performance of the SF-36 among people with type 2 diabetes in general practice. Qual Life Res 2001 10 : 661 670.
41. EuroQoLGroup. EuroQol - a new facility for the measurement of health-related quality of life. Health Policy 1990 16 : 199 208.
42. Kinmonth AL, Woodcock A, Griffin S, Spiegal N, Campbell MJ. Randomised controlled trial of patient centred care of diabetes in general practice: impact on current wellbeing and future disease risk. Br Med J 1998 317 : 1202 1208.
43. Renard E, Apostol D, Lauton D, Boulet F, Bringer J. Quality of life in diabetic patients treated by insulin pumps. Qual Life Newsl 2002 28 : 11 13. Available at http://www.mapi-research.fr/pdf/newsletter/qol28.pdf Last accessed 1 March 2009.
44. Bradley C, Speight J. Patient perceptions of diabetes and diabetes therapy: assessing quality of life. Diabetes Metab Res Rev 2002 18 : S64 S69.
45. Wredling R, Stalhammar J, Adamson U, Berne C, Larsson Y, Ostman J. Well-being and treatment satisfaction in adults with diabetes: a Swedish population-based study. Qual Life Res 1995 4 : 515 522.
46. Taylor R, Foster B, Kyne-Grzebalski D, Vanderpump M. Insulin regimens for the non-insulin dependent: impact on diurnal metabolic state and quality of life. Diabet Med 1994 11 : 551 557.
47. Lewis KS, Bradley C, Knight G, Boulton AJ, Ward JD. A measure of treatment satisfaction designed specifically for people with insulin-dependent diabetes. Diabet Med 1988 5 : 235 242.
48. Bradley C. Diabetes Treatment Satisfaction Questionnaire (DTSQ). In : Bradley C, ed. Handbook of Psychology and Diabetes: A Guide to Psychological Measurement in Diabetes Research and Practice. Chur, Switzerland : Harwood Academic Publishers, 1994 : 111 132.
49. Secnik Boye K, Matza L, Oglesby A, Malley K, Kim S, Hayes R et al. Patient-reported outcomes in a trial of exenatide and insulin glargine for the treatment of type 2 diabetes. Health Qual Life Outcomes 2006 4 : 80.
50. Witthaus E, Stewart J, Bradley C. Treatment satisfaction and psychological well-being with insulin glargine compared with NPH in patients with Type 1 diabetes. Diabet Med 2001 18 : 619 625.
51. Pouwer F, Snoek FJ, Heine RJ. Ceiling effect reduces the validity of the diabetes treatment satisfaction questionnaire. Diabetes Care 1998 21 : 2039.
52. Bradley C. Diabetes treatment satisfaction questionnaire. Change version for use alongside status version provides appropriate solution where ceiling effects occur. Diabetes Care 1999 22 : 530 532.
53. Lin EHB, Katon W, Von Korff M, Rutter C, Simon GE, Oliver M et al. Relationship of depression and diabetes self-care, medication adherence, and preventive care. Diabetes Care 2004 27 : 2154 2160.
54. Anderson RJ, Freedland KE, Clouse RE, Lustman PJ. The Prevalence of co-morbid depression in adults with diabetes: a meta-analysis. Diabetes Care 2001 24 : 1069 1078.
55. Speight J, Barendse S, Bradley C. Further development of the Well-Being Questionnaire to include diabetes-specific as well as generic subscales and new stress subscales. Proc Br Psychol Soc 2000 8 : 21.
56. Tankova T, Dakovska G, Koev D. Education of diabetic patients - a one-year experience. Patient Educ Couns 2001 43 : 139 145.
57. Beck A, Ward C, Mendelson M, Mock J, Erbaugh J. An inventory for measuring depression. Arch Gen Psychiatry 1961 4 : 561 571.
58. Lustman P, Clouse R, Carney R. Depression and the reporting of diabetes symptoms. Int J Psychiatry Med 1988 18 : 295 303.
59. Lustman P, Clouse R, Griffith L, Carney R. Screening for depression in diabetes using the Beck Depression Inventory. Psychosom Med 1997 59 : 24 31.
60. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983 67 : 361 370.
61. Bradley C. The well-being questionnaire. In : Bradley C, ed. Handbook of Psychology and Diabetes. Chur, Switzerland : Harwood Academic Publishers, 1994 : 89 109.
62. Bradley C. The 12-Item Well-Being Questionnaire: origins, current stage of development, and availability. Diabetes Care 2000 23 : 875.
63. Speight J, Bradley C. The W-BQ28 measure of generic and diabetes-specific well-being is shown to be reliable, valid and sensitive to change in DIABQoL+ and DAFNE studies. Diabet Med 2002 19 : 10.
64. Polonsky WH, Anderson BJ, Lohrer PA, Welch G, Jacobson AM, Aponte JE et al. Assessment of diabetes-related distress. Diabetes Care 1995 18 : 754 760.
65. Welch G, Jacobson AM, Polonsky WH. The Problem Areas in Diabetes Scale: an evaluation of its clinical utility. Diabetes Care 1997 20 : 760 766.
66. Welch G, Weinger K, Anderson B, Polonsky WH. Responsiveness of the Problem Areas In Diabetes (PAID) questionnaire. Diabet Med 2003 20 : 69 72.
67. Snoek FJ, Pouwer F, Welch GW, Polonsky WH. Diabetes-related emotional distress in Dutch and US diabetic patients: cross-cultural validity of the problem areas in diabetes scale. Diabetes Care 2000 23 : 1305 1309.
68. Bharmal M, Thomas J. Comparing the EQ-5D and the SF-6D descriptive systems to assess their ceiling effects in the US general population. Value Health 2006 9 : 267 271.
69. Matza LS, Boye KS, Yurgin N. Validation of two generic patient-reported outcome measures in patients with type 2 diabetes. Health Qual Life Outcomes 2007 5 : 47.
70. Jacobson AM, de Groot M, Samson JA. The evaluation of two measures of quality of life in patients with type I and type II diabetes. Diabetes Care 1994 17 : 267 274.
71. Ahroni JH, Boyko EJ. Responsiveness of the SF-36 among veterans with diabetes mellitus. J Diabetes Complications 2000 14 : 31 39.
72. Riazi A, Bradley C, Barendse S, Ishii H. Development of the well-being questionnaire short-form in Japanese: the W-BQ12. Health Qual Life Outcomes 2006 4 : 40.
73. Pouwer F, van der Ploeg HM, Ader HJ, Heine RJ, Snoek FJ. The 12-item well-being questionnaire. An evaluation of its validity and reliability in Dutch people with diabetes. Diabetes Care 1999 22 : 2004 2010.
74. Pouwer F, Snoek FJ, van der Ploeg HM, Heine RJ, Brand AN. A comparison of the standard and the computerized versions of the Well-being Questionnaire (WBQ) and the Diabetes Treatment Satisfaction Questionnaire (DTSQ). Qual Life Res 1998 7 : 33 38.
75. 1c, and the patient's evaluation of the quality of diabetes care: a randomized controlled trial. Diabetes Care 2001 24 : 1929 1935.
76. Bradley C, Lewis KS. Measures of psychological well-being and treatment satisfaction developed from the responses of people with tablet-treated diabetes. Diabet Med 1990 7 : 445 451.
77. Speight J, Bradley C Measuring the Impact of Diabetes and its Complications on Quality of Life: Psychometric Properties and Data From a Diabetes-Specific Individualised Measure, the ADDQoL. PsychoSocial Aspects of Diabetes (PSAD) Annual Spring Meeting, 7-9 April 2000, Dubrovnik, Croatia.
78. Bradley C, Plowright R, Stewart J, Valentine J, Witthaus E. The Diabetes Treatment Satisfaction Questionnaire change version (DTSQc) evaluated in insulin glargine trials shows greater responsiveness to improvements than the original DTSQ. Health Qual Life Outcomes 2007 5 : 57.
79. Witthaus E, Ashwell SG, Johnston P, Stephens J, Home PD, Bradley C. Quality of life is improved with insulin glargine + lispro compared with NPH insulin + regular human insulin in patients with Type 1 diabetes. Diabetologia 2004 47 : A306.
80. Rankin SH, Galbraith ME, Huang P. Quality of life and social environment as reported by Chinese immigrants with non-insulin-dependent diabetes mellitus. Diabetes Educ 1997 23 : 171 177.
81. Mannucci E, Ricca V, Bardini G, Rotella CM. Well-being enquiry for diabetics: a new measure of diabetes-related quality of life. Diabetes Nutr Metab Clin Exp 1996 9 : 89 102.
82. Pibernik O. Psychometric properties of the World Health Organisation quality of life questionnaire (WHOQOL-100) in diabetic patients in Croatia. Diabetes Res Clin Pract 2001 51 : 133 143.
83. Peyrot M, Rubin RR. Living with diabetes: the patient-centered perspective. Diabetes Spectr 1994 7 : 204 205.
84. Speight J, Woodcock AJ, Reaney MD, Amiel SA, Johnson P, Parrott N, Senior P, Shaw JAM (2009) Expectations and experiences of transplant: a qualitative study of people with Type 1 diabetes undergoing pancreatic islet transplantation. Diabet Med (in press).
85. Speight J (2009) Assessing patient satisfaction: concepts, applications and measurement. Value in Health, 8 (Suppl 1) : S6 S8.
86. Calman KC. Quality of life in cancer patients: an hypothesis. J Med Ethics 1984 10 : 124 127.
87. Cella DF, Tulsky DS. Measuring quality of life today: methodological aspects. Oncology (Switzerland) 1990 4 : 29 38.
88. Walker J, Bradley C. Assessing the quality of life of adolescents with diabetes: using the SEIQoL, DQoL, patient and diabetes specialist nurse ratings. Practical Diabetes International 2002 19 : 141 144.
89. The Food and Drug Administration (FDA). Guidance for industry: patient-reported outcomes: use in medical product development to support labelling claims: draft guidance. Health and Quality of Life Outcomes 2006 4 : 79.
90. Joyce CRB. Requirements for the assessment of individual quality of life. In : McGee HM, Bradley C, eds. Quality of life following renal failure: psychosocial challenges accompanying high technology medicine. Chur, Switzerland : Harwood Academic Publishers, 1994 : 43 54.