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Evaluation of item candidates for a diabetic retinopathy quality of life item bank

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Abstract

Purpose

We are developing an item bank assessing the impact of diabetic retinopathy (DR) on quality of life (QoL) using a rigorous multi-staged process combining qualitative and quantitative methods. We describe here the first two qualitative phases: content development and item evaluation.

Methods

After a comprehensive literature review, items were generated from four sources: (1) 34 previously validated patient-reported outcome measures; (2) five published qualitative articles; (3) eight focus groups and 18 semi-structured interviews with 57 DR patients; and (4) seven semi-structured interviews with diabetes or ophthalmic experts. Items were then evaluated during 3 stages, namely binning (grouping) and winnowing (reduction) based on key criteria and panel consensus; development of item stems and response options; and pre-testing of items via cognitive interviews with patients.

Results

The content development phase yielded 1,165 unique items across 7 QoL domains. After 3 sessions of binning and winnowing, items were reduced to a minimally representative set (n = 312) across 9 domains of QoL: visual symptoms; ocular surface symptoms; activity limitation; mobility; emotional; health concerns; social; convenience; and economic. After 8 cognitive interviews, 42 items were amended resulting in a final set of 314 items.

Conclusions

We have employed a systematic approach to develop items for a DR-specific QoL item bank. The psychometric properties of the nine QoL subscales will be assessed using Rasch analysis. The resulting validated item bank will allow clinicians and researchers to better understand the QoL impact of DR and DR therapies from the patient’s perspective.

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References

  1. Hobart, J., et al. (2007). Rating scales as outcome measures for clinical trials in neurology: Problems, solutions, and recommendations. Lancet Neurology, 6, 1094–1105.

    Article  PubMed  Google Scholar 

  2. Fenwick, E., et al. (2011). The impact of diabetic retinopathy: Understanding the patient’s perspective. British Journal of Ophthalmology, 95(6), 774–782.

    Article  CAS  PubMed  Google Scholar 

  3. Fenwick, E., et al. (2011). Social and emotional impact of diabetic retinopathy: A review. Clinical & Experimental Ophthalmology, 40(1), 27–38.

    Google Scholar 

  4. Steinberg, E. P., et al. (1994). The VF-14: An index of functional impairment in patients with cataract. Archives of Ophthalmology, 112(5), 630–638.

    Article  CAS  PubMed  Google Scholar 

  5. Pesudovs, K., & Coster, D. J. (1998). An instrument for assessment of subjective visual disability in cataract patients. British Journal of Ophthalmology, 82(6), 617–624.

    Article  CAS  PubMed  Google Scholar 

  6. Mangione, C. M., et al. (1992). Development of the ‘Activities of Daily Vision Scale’. A measure of visual functional status. Medical Care, 30(12), 1111–1126.

    Article  CAS  PubMed  Google Scholar 

  7. Lamoureux, E., et al. (2007). The impact of vision impairment questionnaire: An assessment of its domain structure using confirmatory factor analysis and Rasch analysis. Investigative Ophthalmology & Visual Science, 48, 1001–1006.

    Article  Google Scholar 

  8. Lamoureux, E., et al. (2006). The Impact of Vision Impairment Questionnaire: An evaluation of its measurement properties using Rasch analysis. Investigative Ophthalmology & Visual Science, 47, 4732–4741.

    Article  Google Scholar 

  9. Mangione, C. M., et al. (2001). Development of the 25-item National Eye Institute Visual Function Questionnaire. Archives of Ophthalmology, 119(7), 1050–1058.

    Article  CAS  PubMed  Google Scholar 

  10. Woodcock, A., et al. (2004). The influence of diabetic retinopathy on quality of life interviews to guide the design of a condition-specific, individualised questionnaire: The RetDQoL. Patient Education and Counseling, 53(3), 365–383.

    Article  PubMed  Google Scholar 

  11. Brose, L., & Bradley, C. (2009). Psychometric Development of the Individualized Retinopathy-Dependent Quality of Life Questionnaire (RetDQoL). Value Health, 14(6), 740–754.

    Google Scholar 

  12. Vanalphen, A., et al. (1994). Likert or Rasch—Nothing is more applicable than good theory. Journal of Advanced Nursing, 20(1), 196–201.

    Article  CAS  Google Scholar 

  13. Finger, R. P., Fenwick, E., Pesudovs, K., Marella, M., Lamoureux, E. L., & Holz, F. G. (2012). Rasch analysis reveals problems with multiplicative scoring in the macular disease quality of life questionnaire. Ophthalmology, 119(11), 2351–2357.

    Google Scholar 

  14. Gothwal, V. K., et al. (2011). Multiplicative rating scales do not enable measurement of vision-related quality of life. Clinical and Experimental Optometry, 94(1), 52–62.

    Article  PubMed  Google Scholar 

  15. Simo, R., & Hernandez, C. (2008). Intravitreous anti-VEGF for diabetic retinopathy: Hopes and fears for a new therapeutic strategy. Diabetologia, 51(9), 1574–1580.

    Article  CAS  PubMed  Google Scholar 

  16. Wirostko, B., Wong, T. Y., & Simo, R. (2008). Vascular endothelial growth factor and diabetic complications. Progress in Retinal and Eye Research, 27(6), 608–621.

    Article  CAS  PubMed  Google Scholar 

  17. Lai, J. S., et al. (2005). An item bank was created to improve the measurement of cancer-related fatigue. Journal of Clinical Epidemiology, 58(2), 190–197.

    Article  PubMed  Google Scholar 

  18. Forkmann, T., et al. (2009). Development of an item bank for the assessment of depression in persons with mental illnesses and physical diseases using Rasch analysis. Rehabilitation Psychology, 54(2), 186–197.

    Article  PubMed  Google Scholar 

  19. Pesudovs, K. (2010). Item banking: A generational change in patient-reported outcome measurement. Optometry and Vision Science, 87(4), 1–9.

    Article  Google Scholar 

  20. Cella, D., et al. (2007). The future of outcomes measurement: Item banking, tailored short-forms, and computerized adaptive assessment. Quality of Life Research, 16(Suppl 1), 133–141.

    Article  PubMed  Google Scholar 

  21. Lai, J. S., et al. (2003). Item banking to improve, shorten and computerize self-reported fatigue: An illustration of steps to create a core item bank from the FACIT-Fatigue Scale. Quality of Life Research, 12(5), 485–501.

    Article  PubMed  Google Scholar 

  22. Gershon, R. C. (2005). Computer adaptive testing. Journal of Applied Measurement, 6(1), 109–127.

    PubMed  Google Scholar 

  23. DeWalt, D. A., et al. (2007). Evaluation of item candidates—The PROMIS qualitative item review. Medical Care, 45(5), S12–S21.

    Article  PubMed  Google Scholar 

  24. Giesinger, J. M., et al. (2011). Cross-cultural development of an item list for computer-adaptive testing of fatigue in oncological patients. Health and Quality of Life Outcomes, 9, 19–29.

    Google Scholar 

  25. Bruce, B., et al. (2009). Better assessment of physical function: Item improvement is neglected but essential. Arthritis Research & Therapy, 11(6), R191.

    Article  Google Scholar 

  26. WHOQOL Group. (1997). Measuring quality of life (pp. 1–13). Geneva: The World Health Organisation.

    Google Scholar 

  27. Pesudovs, K., et al. (2010). Remediating serious flaws in the National Eye Institute Visual Function Questionnaire. Journal of Cataract and Refractive Surgery, 36(5), 718–732.

    Article  PubMed  Google Scholar 

  28. Finger, R. P., et al. (2011). The impact of the severity of vision loss on vision-related quality of life in India: An evaluation of the IND-VFQ-33. Investigative Ophthalmology & Visual Science, 52(9), 6081–6088.

    Article  Google Scholar 

  29. Massof, R. W., & Rubin, G. S. (2001). Visual function assessment questionnaires. Survey of Ophthalmology, 45(6), 531–548.

    Article  CAS  PubMed  Google Scholar 

  30. Margolis, M. K., et al. (2002). Vision-specific instruments for the assessment of health-related quality of life and visual functioning—A literature review. Pharmacoeconomics, 20(12), 791–812.

    Article  PubMed  Google Scholar 

  31. de Boer, M. R., et al. (2004). Psychometric properties of vision-related quality of life questionnaires: A systematic review. Ophthalmic and Physiological Optics, 24(4), 257–273.

    Article  PubMed  Google Scholar 

  32. Devenney, R., & O’Neil, S. (2010). The experience of diabetic retinopathy: A qualitative study. British Journal of Health Psychology, 16(4), 707–721.

    Article  Google Scholar 

  33. Coyne, K. S., et al. (2004). The impact of diabetic retinopathy: Perspectives from patient focus groups. Family Practice, 21(4), 447–453.

    Article  PubMed  Google Scholar 

  34. Oehlergiarratana, J., & Fitzgerald, R. G. (1980). Group-therapy with blind diabetics. Archives of General Psychiatry, 37(4), 463–467.

    Article  CAS  Google Scholar 

  35. Scanlon, P. H., et al. (2006). Reported symptoms and quality-of-life impacts in patients having laser treatment for sight-threatening diabetic retinopathy. Diabetic Medicine, 23(1), 60–66.

    Article  CAS  PubMed  Google Scholar 

  36. Fenwick, E. K., Pesudovs, K., Khadka, J., Dirani, M., Rees, G., Wong, T. Y., & Lamoureux, E. L. (2012). The impact of diabetic retinopathy on quality of life: Qualitative findings from an item bank development project. Quality of Life Research. doi:10.1007/s11136-012-0110-1.

  37. Rice, P., & Ezzy, D. (1999). Qualitative research methods: A health focus. Oxford: Oxford University Press.

  38. Maykut, P., & Morehouse, R. (Eds.). (1994). Beginning qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage.

    Google Scholar 

  39. Gothwal, V. K., et al. (2009). Visual Activities Questionnaire: Assessment of subscale validity for cataract surgery outcomes. Journal of Cataract and Refractive Surgery, 35(11), 1961–1969.

    Article  PubMed  Google Scholar 

  40. Pesudovs, K., Wright, T. A., & Gothwal, V. K. (2010). Visual disability assessment: Valid measurement of activity limitation and mobility in cataract patients. British Journal of Ophthalmology, 94(6), 777–781.

    Article  PubMed  Google Scholar 

  41. Jobe, J., & Mingay, D. (1989). Cognitive research improves questionnaires. American Journal of Public Health, 79(8), 1053–1055.

    Article  CAS  PubMed  Google Scholar 

  42. Willis, G. (2005). Cognitive interviewing: A tool for improving questionnaire design. Thousand Oaks, CA: Sage Publications.

    Google Scholar 

Download references

Acknowledgments

National Health and Medical Research Council Centre for Clinical Research Excellence (CCRE) #529923—Translational Clinical Research in Major Eye Diseases; CCRE Diabetes; Novartis Pharmaceuticals Australia #CRFB002DAU09T; Royal Victorian Eye and Ear Hospital; CERA receives Operational Infrastructure Support from the Victorian Government.

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Authors and Affiliations

  1. Department of Ophthalmology, Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne St, East Melbourne, VIC, 3002, Australia

    Eva K. Fenwick, Gwyn Rees, Tien Y. Wong & Ecosse L. Lamoureux

  2. Department of Optometry and Vision Science, NH&MRC Centre for Clinical Eye Research, Flinders Medical Centre and Flinders University of South Australia, Adelaide, SA, Australia

    Konrad Pesudovs & Jyoti Khadka

  3. Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore

    Tien Y. Wong & Ecosse L. Lamoureux

Authors
  1. Eva K. Fenwick
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  2. Konrad Pesudovs
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  3. Jyoti Khadka
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  4. Gwyn Rees
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  5. Tien Y. Wong
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  6. Ecosse L. Lamoureux
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Correspondence to Ecosse L. Lamoureux.

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Fenwick, E.K., Pesudovs, K., Khadka, J. et al. Evaluation of item candidates for a diabetic retinopathy quality of life item bank. Qual Life Res 22, 1851–1858 (2013). https://doi.org/10.1007/s11136-012-0307-3

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