期刊论文详细信息
Health and Quality of Life Outcomes
The relative impact of vision impairment and cardiovascular disease on quality of life: the example of pseudoxanthoma elasticum
Ecosse L Lamoureux3  Frank G Holz4  Hendrik PN Scholl1  Peter Charbel Issa2  Manjula Marella5  Eva Fenwick5  Robert P Finger5 
[1] Wilmer Eye Institute, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA;Nuffield Laboratory of Ophthalmology, University of Oxford, Level 5 and 6, West Wing, The John Radcliffe Hospital, Headley Way, OX3 9DU, Oxford, UK;Singapore Eye Research Institute, Singapore National Eye Centre, Singapore;Department of Ophthalmology, University of Bonn, Ernst-Abbe-Strasse 2. D-53127,Bonn, Germany;Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, Peter Howson WingLevel 1, 32 Gisborne Street, East Melbourne VIC, 3002 Australia, University of Melbourne, Melbourne, Australia
关键词: SF-36;    Impact of Vision Impairment Questionnaire (IVI);    Pseudoxanthoma elasticum (PXE);    cardiovascular disease;    visual impairment;    health-related quality of life (HRQoL);    Vision-related quality of life (VRQoL);   
Others  :  826155
DOI  :  10.1186/1477-7525-9-113
 received in 2011-05-13, accepted in 2011-12-12,  发布年份 2011
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【 摘 要 】

Objective

To investigate the impact of pseudoxanthoma elasticum (PXE), a rare hereditary disease of concurrent vision impairment (VI) and cardiovascular complications (CVCs), on vision-related (VRQoL) and health-related quality of life (HRQoL).

Methods

VRQoL and HRQoL were assessed using the Impact of Vision Impairment (IVI) questionnaire and the Short Form Health Survey (SF-36) in 107 PXE patients. Patients were stratified into four groups: A = no VI or CVC; B = CVCs only; C = VI only; and D = both VI and CVCs.

Results

Following Rasch analysis, the IVI was found to function as a vision-specific functioning and emotional well-being subscale, and the SF-36 as a health-related physical functioning and mental health subscale. The presence of VI and CVC were significant predictors of vision-specific functioning and emotional well-being (p < 0.001), with a clinically meaningful decrement in vision-specific functioning in patients with VI. No associations were found for the SF-36 Physical Functioning and Mental Health scores between any groups.

Conclusions

Vision impaired patients with PXE report significantly poorer vision-specific functioning than PXE patients without VI. In contrast, the relative impact of PXE on reported general HRQoL was much less. Our results suggest that vision impairment has the larger impact on QoL in this sample.

【 授权许可】

   
2011 Finger et al; licensee BioMed Central Ltd.

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【 参考文献 】
  • [1]Finger RP, Charbel Issa P, Ladewig MS, Gotting C, Szliska C, Scholl HP, Holz FG: Pseudoxanthoma elasticum: genetics, clinical manifestations and therapeutic approaches. Surv Ophthalmol 2009, 54:272-285.
  • [2]Challenor VF, Conway N, Monro JL: The surgical treatment of restrictive cardiomyopathy in pseudoxanthoma elasticum. Br Heart J 1988, 59:266-269.
  • [3]Fukuda K, Uno K, Fujii T, Mukai M, Handa S: Mitral stenosis in pseudoxanthoma elasticum. Chest 1992, 101:1706-1707.
  • [4]Lebwohl M, Halperin J, Phelps RG: Brief report: occult pseudoxanthoma elasticum in patients with premature cardiovascular disease. N Engl J Med 1993, 329:1237-1239.
  • [5]Lebwohl MG, Distefano D, Prioleau PG, Uram M, Yannuzzi LA, Fleischmajer R: Pseudoxanthoma elasticum and mitral-valve prolapse. N Engl J Med 1982, 307:228-231.
  • [6]Scheie HG, Hogan TF Jr: Angioid streaks and generalized arterial disease. AMA Arch Ophthalmol 1957, 57:855-868.
  • [7]Cailleux N, Hachulla E, Perez-Cousin M, Labalette P, Lecomte-Houcke M: Pseudoxanthoma elasticum: a rare cause of leg artery diseases in young adults. J Mal Vasc 1997, 22:51-55.
  • [8]Charbel Issa P, Finger RP, Gotting C, Hendig D, Holz FG, Scholl HP: Centrifugal fundus abnormalities in pseudoxanthoma elasticum. Ophthalmology 2010, 117:1406-1414.
  • [9]Charbel Issa P, Finger RP, Holz FG, Scholl HP: Multimodal imaging including spectral domain OCT and confocal near infrared reflectance for characterisation of outer retinal pathology in pseudoxanthoma elasticum. Invest Ophthalmol Vis Sci 2009.
  • [10]West SK, Munoz B, Rubin GS, Schein OD, Bandeen-Roche K, Zeger S, German S, Fried LP: Function and visual impairment in a population-based study of older adults. The SEE project. Salisbury Eye Evaluation. Invest Ophthalmol Vis Sci 1997, 38:72-82.
  • [11]Mangione CM, Gutierrez PR, Lowe G, Orav EJ, Seddon JM: Influence of age-related maculopathy on visual functioning and health-related quality of life. Am J Ophthalmol 1999, 128:45-53.
  • [12]Bach JP, Riedel O, Pieper L, Klotsche J, Dodel R, Wittchen HU: Health-Related Quality of Life in Patients with a History of Myocardial Infarction and Stroke. Cerebrovasc Dis 31:68-76.
  • [13]Borowiak E, Kostka T: Influence of chronic cardiovascular disease and hospitalisation due to this disease on quality of life of community-dwelling elderly. Qual Life Res 2006, 15:1281-1289.
  • [14]Sprengers RW, Teraa M, Moll FL, de Wit GA, van der Graaf Y, Verhaar MC: Quality of life in patients with no-option critical limb ischemia underlines the need for new effective treatment. J Vasc Surg 52:843-849. 849 e841
  • [15]Lamoureux EL, Pallant JF, Pesudovs K, Hassell JB, Keeffe JE: The Impact of Vision Impairment Questionnaire: an evaluation of its measurement properties using Rasch analysis. Invest Ophthalmol Vis Sci 2006, 47:4732-4741.
  • [16]Lamoureux EL, Pallant JF, Pesudovs K, Rees G, Hassell JB, Keeffe JE: The impact of vision impairment questionnaire: an assessment of its domain structure using confirmatory factor analysis and rasch analysis. Invest Ophthalmol Vis Sci 2007, 48:1001-1006.
  • [17]Ware JE Jr, Sherbourne CD: The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992, 30:473-483.
  • [18]Bullinger M: German translation and psychometric testing of the SF-36 Health Survey: preliminary results from the IQOLA Project. International Quality of Life Assessment. Soc Sci Med 1995, 41:1359-1366.
  • [19]Keeffe JE, McCarty CA, Hassell JB, Gilbert AG: Description and measurement of handicap caused by vision impairment. Aust N Z J Ophthalmol 1999, 27:184-186.
  • [20]Weih LM, Hassell JB, Keeffe J: Assessment of the impact of vision impairment. Invest Ophthalmol Vis Sci 2002, 43:927-935.
  • [21]Lamoureux EL, Hassell JB, Keeffe JE: The determinants of participation in activities of daily living in people with impaired vision. Am J Ophthalmol 2004, 137:265-270.
  • [22]Finger R, Fenwick E, Marella M, Petrak M, Holz F, Chiang P, Lamoureux E: The impact of vision impairment on vision-specific quality of life in Germany. under review 2011.
  • [23]Ware JE Jr, Kosinski M, Gandek B, Aaronson NK, Apolone G, Bech P, Brazier J, Bullinger M, Kaasa S, Leplege A, et al.: The factor structure of the SF-36 Health Survey in 10 countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol 1998, 51:1159-1165.
  • [24]Gandek B, Ware JE Jr, Aaronson NK, Alonso J, Apolone G, Bjorner J, Brazier J, Bullinger M, Fukuhara S, Kaasa S, et al.: Tests of data quality, scaling assumptions, and reliability of the SF-36 in eleven countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol 1998, 51:1149-1158.
  • [25]Wagner AK, Gandek B, Aaronson NK, Acquadro C, Alonso J, Apolone G, Bullinger M, Bjorner J, Fukuhara S, Kaasa S, et al.: Cross-cultural comparisons of the content of SF-36 translations across 10 countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol 1998, 51:925-932.
  • [26]Bullinger M: [Assessment of health related quality of life with the SF-36 Health Survey]. Rehabilitation (Stuttg) 1996, 35:XVII-XXVII. quiz XXVII-XXIX
  • [27]Wang HM, Beyer M, Gensichen J, Gerlach FM: Health-related quality of life among general practice patients with differing chronic diseases in Germany: cross sectional survey. BMC Public Health 2008, 8:246. BioMed Central Full Text
  • [28]Linacre JM: A user's guide to Winsteps/Ministeps Rasch-Model Pograms. Chicago, IL: MESA Press; 2005.
  • [29]Linacre JM: Winsteps Rasch measurement computer program. Book Winsteps Rasch measurement computer program 2008. (Editor ed.^eds.). City: http://www.winsteps.com/index.htm webcite
  • [30]Bond TG, Fox CM: Applying the Rasch model: Fundamental Measurement in the Human Sciences. London: Lawrence Erlbaum Associates; 2001.
  • [31]Pesudovs K, Burr JM, Harley C, Elliott DB: The development, assessment, and selection of questionnaires. Optom Vis Sci 2007, 84:663-674.
  • [32]Pierce CA, Block RA, Aguinis H: Cautionary Note on Reporting Eta-Squared Values from Multifactor ANOVA Designs. Educational and Psychological Measurement 2004, 64:916-924.
  • [33]Linacre JM: Sample Size and Item Calibration Stability. Rasch Measurement Transactions 1994, 7:328.
  • [34]Sloan J: Assessing the minimally clinically significant difference: scientific considerations, challenges and solutions. COPD 2005, 2:57-62.
  • [35]Norman G, Sloan J, Wyrwich K: Interpreation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Med Care 2003, 41:582-592.
  • [36]Lamoureux EL, Chong E, Wang JJ, Saw SM, Aung T, Mitchell P, Wong TY: Visual impairment, causes of vision loss, and falls: the singapore malay eye study. Invest Ophthalmol Vis Sci 2008, 49:528-533.
  • [37]Williams RA, Brody BL, Thomas RG, Kaplan RM, Brown SI: The psychosocial impact of macular degeneration. Arch Ophthalmol 1998, 116:514-520.
  • [38]Wynia K, Middel B, van Dijk JP, De Keyser JH, Reijneveld SA: The impact of disabilities on quality of life in people with multiple sclerosis. Mult Scler 2008, 14:972-980.
  • [39]Evenhuis HM, Sjoukes L, Koot HM, Kooijman AC: Does visual impairment lead to additional disability in adults with intellectual disabilities? J Intellect Disabil Res 2009, 53:19-28.
  • [40]Lamoureux EL, Tai ES, Thumboo J, Kawasaki R, Saw SM, Mitchell P, Wong TY: Impact of diabetic retinopathy on vision-specific function. Ophthalmology 117:757-765.
  • [41]Gall C, Mueller I, Gudlin J, Lindig A, Schlueter D, Jobke S, Franke GH, Sabel BA: Vision- and health-related quality of life before and after vision restoration training in cerebrally damaged patients. Restor Neurol Neurosci 2008, 26:341-353.
  • [42]Evenhuis HM: Medical aspects of ageing in a population with intellectual disability: I. Visual impairment. J Intellect Disabil Res 1995, 39(Pt 1):19-25.
  • [43]Finger RP, Charbel Issa P, Ladewig M, Holz FG, Scholl HP: Intravitreal bevacizumab for choroidal neovascularisation associated with pseudoxanthoma elasticum. Br J Ophthalmol 2008, 92:483-487.
  • [44]Jacobson AM, Rand LI, Hauser ST: Psychologic stress and glycemic control - a comparison of patients with and without proliferative diabetic retinopathy. Psychosomatic Medicine 1985, 47:372-381.
  • [45]Bernbaum M, Albert SG, Duckro PN: Psychosocial profiles in patients with visual impairment due to diabetic-retinopathy. Diabetes Care 1988, 11:551-557.
  • [46]Lamoureux EL, Pallant JF, Pesudovs K, Rees G, Hassell JB, Keeffe JE: The effectiveness of low-vision rehabilitation on participation in daily living and quality of life. Invest Ophthalmol Vis Sci 2007, 48:1476-1482.
  • [47]Hinds A, Sinclair A, Park J, Suttie A, Paterson H, Macdonald M: Impact of an interdisciplinary low vision service on the quality of life of low vision patients. Br J Ophthalmol 2003, 87:1391-1396.
  • [48]Reeves BC, Harper RA, Russell WB: Enhanced low vision rehabilitation for people with age related macular degeneration: a randomised controlled trial. Br J Ophthalmol 2004, 88:1443-1449.
  • [49]Castori M, Camerota F, Celletti C, Grammatico P, Padua L: Quality of life in the classic and hypermobility types of Ehlers-Danlos syndrome [corrected]. Ann Neurol 67:145-146. author reply 146-147
  • [50]Swamy BN, Chia EM, Wang JJ, Rochtchina E, Mitchell P: Correlation between vision- and health-related quality of life scores. Acta Ophthalmol 2009, 87:335-339.
  • [51]Mangione CM, Lee PP, Pitts J, Gutierrez P, Berry S, Hays RD: Psychometric properties of the National Eye Institute Visual Function Questionnaire (NEI-VFQ). NEI-VFQ Field Test Investigators. Arch Ophthalmol 1998, 116:1496-1504.
  • [52]Bradley C: Importance of differentiating health status from quality of life. Lancet 2001, 357:7-8.
  • [53]Cohen J: Statistical power analysis for the behavior sciences. 2nd edition. London: Taylor & Francis; 1988.
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