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Developing an item bank to measure the coping strategies of people with hereditary retinal diseases

  • Retinal Disorders
  • Published:
Graefe's Archive for Clinical and Experimental Ophthalmology Aims and scope Submit manuscript

Abstract

Purpose

Our understanding of the coping strategies used by people with visual impairment to manage stress related to visual loss is limited. This study aims to develop a sophisticated coping instrument in the form of an item bank implemented via Computerised adaptive testing (CAT) for hereditary retinal diseases.

Methods

Items on coping were extracted from qualitative interviews with patients which were supplemented by items from a literature review. A systematic multi-stage process of item refinement was carried out followed by expert panel discussion and cognitive interviews. The final coping item bank had 30 items. Rasch analysis was used to assess the psychometric properties. A CAT simulation was carried out to estimate an average number of items required to gain precise measurement of hereditary retinal disease-related coping.

Results

One hundred eighty-nine participants answered the coping item bank (median age = 58 years). The coping scale demonstrated good precision and targeting. The standardised residual loadings for items revealed six items grouped together. Removal of the six items reduced the precision of the main coping scale and worsened the variance explained by the measure. Therefore, the six items were retained within the main scale. Our CAT simulation indicated that, on average, less than 10 items are required to gain a precise measurement of coping.

Conclusions

This is the first study to develop a psychometrically robust coping instrument for hereditary retinal diseases. CAT simulation indicated that on an average, only four and nine items were required to gain measurement at moderate and high precision, respectively.

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References

  1. Nash BM, Wright DC, Grigg JR, Bennetts B, Jamieson RV (2015) Retinal dystrophies, genomic applications in diagnosis and prospects for therapy. Transl Pediatr 4(2):139–163

    PubMed  PubMed Central  Google Scholar 

  2. Hartong DT, Berson EL, Dryja TP (2006) Retinitis pigmentosa. Lancet 368(9549):1795–1809

    Article  PubMed  CAS  Google Scholar 

  3. Thumann G (2012) Prospectives for gene therapy of retinal degenerations. Curr Genomics 13(5):350–362

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  4. Bittner AK, Edwards L, George M (2010) Coping strategies to manage stress related to vision loss and fluctuations in retinitis pigmentosa. Optometry 81(9):461–468

    Article  PubMed  PubMed Central  Google Scholar 

  5. Hayeems RZ, Geller G, Finkelstein D, Faden RR (2005) How patients experience progressive loss of visual function: a model of adjustment using qualitative methods. Br J Ophthalmol 89(5):615–620

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  6. Prem Senthil M, Khadka J, Pesudovs K (2017) Seeing through their eyes: lived experiences of people with retinitis pigmentosa. Eye (Lond) 31(5):741–748

    Article  CAS  Google Scholar 

  7. Savelkoul M, de Witte LP, Candel MJ, van der Tempel H, van den Borne B (2001) Effects of a coping intervention on patients with rheumatic diseases: results of a randomized controlled trial. Arthritis Rheum 45(1):69–76

    Article  PubMed  CAS  Google Scholar 

  8. Savelkoul M, Post MW, de Witte LP, van den Borne HB (2000) Social support, coping and subjective well-being in patients with rheumatic diseases. Patient Educ Couns 39(2–3):205–218

    Article  PubMed  CAS  Google Scholar 

  9. Rinaldi S, Ghisi M, Iaccarino L, Zampieri S, Ghirardello A, Sarzi-Puttini P, Ronconi L, Perini G, Todesco S, Sanavio E, Doria A (2006) Influence of coping skills on health-related quality of life in patients with systemic lupus erythematosus. Arthritis Rheum 55(3):427–433

    Article  PubMed  Google Scholar 

  10. Khadka J, Fenwick E, Lamoureux E, Pesudovs K (2016) Methods to develop the Eye-tem Bank to measure ophthalmic quality of life. Optom Vis Sci 93(12):1485–1494

    Article  PubMed  Google Scholar 

  11. Pesudovs K (2010) Item banking: a generational change in patient-reported outcome measurement. Optom Vis Sci 87(4):285–293

    PubMed  Google Scholar 

  12. van Alphen A, Halfens R, Hasman A, Imbos T (1994) Likert or Rasch? Nothing is more applicable than good theory. J Adv Nurs 20(1):196–201

    Article  PubMed  Google Scholar 

  13. Pesudovs K, Gothwal VK, Wright T, Lamoureux EL (2010) Remediating serious flaws in the National Eye Institute Visual Function Questionnaire. J Cataract Refract Surg 36(5):718–732

    Article  PubMed  Google Scholar 

  14. Khadka J, Gothwal VK, McAlinden C, Lamoureux EL, Pesudovs K (2012) The importance of rating scales in measuring patient-reported outcomes. Health Qual Life Outcomes 10:80

    Article  PubMed  PubMed Central  Google Scholar 

  15. Wright BD, Linacre JM (1989) Observations are always ordinal; measurements, however, must be interval. Arch Phys Med Rehabil 70(12):857–860

    PubMed  CAS  Google Scholar 

  16. Velozo CA, Kielhofner G, Lai JS (1999) The use of Rasch analysis to produce scale-free measurement of functional ability. Am J Occup Ther 53(1):83–90

    Article  PubMed  CAS  Google Scholar 

  17. Duncan PW, Bode RK, Min Lai S, Perera S (2003) Rasch analysis of a new stroke-specific outcome scale: the Stroke Impact Scale. Arch Phys Med Rehabil 84(7):950–963

    Article  PubMed  Google Scholar 

  18. Pesudovs K, Burr JM, Harley C, Elliott DB (2007) The development, assessment, and selection of questionnaires. Optom Vis Sci 84(8):663–674

    Article  PubMed  Google Scholar 

  19. Khadka J, Fenwick EK, Lamoureux EL, Pesudovs K (2016) Item banking enables stand-alone measurement of driving ability. Optom Vis Sci 93(12):1502–1512

    Article  PubMed  Google Scholar 

  20. Boone J, Staver JR, Yale MS (2014) Rasch analysis in the human sciences. Springer, Dordrecht

    Book  Google Scholar 

  21. Pesudovs K, Wright TA, Gothwal VK (2010) Visual disability assessment: valid measurement of activity limitation and mobility in cataract patients. Br J Ophthalmol 94(6):777–781

    Article  PubMed  Google Scholar 

  22. McCloud C, Khadka J, Gilhotra JS, Pesudovs K (2014) Divergence in the lived experience of people with macular degeneration. Optom Vis Sci 91(8):966–974

    Article  PubMed  Google Scholar 

  23. Devenney R, O'Neill S (2011) The experience of diabetic retinopathy: a qualitative study. Br J Health Psychol 16(4):707–721

    Article  PubMed  Google Scholar 

  24. Prem Senthil M, Khadka J, Gilhotra JS, Simon S, Pesudovs K (2017) Exploring the quality of life issues in people with retinal disease: a qualitative study. J Patient-reported Outcomes. https://doi.org/10.1186/s41687-017-0023-4

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Acknowledgments

We would like to thank all the members of The Royal Society for the Blind, Adelaide, Retina Australia (South Australia, Western Australia, New South Wales, Queensland, Canberra, Victoria and Northern Territory), Retina New Zealand, Australian Inherited Retinal Diseases Registry and DNA bank, the Guide Dogs and Vision 2020 Australia. We also thank the staff of Flinders Vision. Our special thanks to Ms. Susan Aldhous.

Funding

This study is funded by National Health and Medical Research Council (grant no.1031838). Mallika Prem Senthil is supported by Australian Government Research Training Program (RTP) scholarship.

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Authors and Affiliations

  1. NHMRC Centre for Clinical Eye Research, Flinders University of South Australia, Adelaide, South Australia, 5001, Australia

    Mallika Prem Senthil, Jyoti Khadka & Konrad Pesudovs

  2. Optometry and Vision Science, Flinders University of South Australia, Bedford Park, South Australia, 5001, Australia

    Mallika Prem Senthil, Jyoti Khadka & Konrad Pesudovs

  3. Department of Medical Technology and Physics, Australian Inherited Retinal Disease Register and DNA Bank (AIRDR), Sir Charles Gairdner Hospital, Nedlands, Western Australia, 6009, Australia

    John De Roach, Tina Lamey, Terri McLaren & Isabella Campbell

  4. Centre for Ophthalmology and Visual Science, Faculty of Medicine, Dentistry and Health Science, University of Western Australia, Perth, Western Australia, 6009, Australia

    John De Roach & Tina Lamey

  5. Centre for Eye Research Australia, the Royal Victorian Eye, and Ear Hospital, University of Melbourne, Melbourne, Australia

    Eva K Fenwick & Ecosse L. Lamoureux

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

    Eva K Fenwick & Ecosse L. Lamoureux

  7. Duke–National University of Singapore Medical School, Singapore, Singapore

    Eva K Fenwick & Ecosse L. Lamoureux

Authors
  1. Mallika Prem Senthil
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  2. Jyoti Khadka
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  3. John De Roach
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  4. Tina Lamey
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  5. Terri McLaren
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  6. Isabella Campbell
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  7. Eva K Fenwick
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  8. Ecosse L. Lamoureux
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  9. Konrad Pesudovs
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Corresponding author

Correspondence to Mallika Prem Senthil.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

Ethical approval was obtained from the Southern Adelaide Clinical Human Research Ethics Committee and the corresponding ethics committees at health care facilities (469.11) and the study adheres to the Tenets of Declaration of Helsinki. Informed consent was obtained from all individual participants included in the study.

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Prem Senthil, M., Khadka, J., De Roach, J. et al. Developing an item bank to measure the coping strategies of people with hereditary retinal diseases. Graefes Arch Clin Exp Ophthalmol 256, 1291–1298 (2018). https://doi.org/10.1007/s00417-018-3998-5

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  • DOI: https://doi.org/10.1007/s00417-018-3998-5

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