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Ophthalmic Genetics Volume 28, 2007 - Issue 1
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RESEARCH REPORT

Psychosocial Adjustment to Visual Loss in Patients with Retinitis Pigmentosa

Dalbhir Jangra Department of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada
,
Anuradha Ganesh Department of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada; Dr. Anuradha Ganesh is currently with, Sultan Qaboos University, Muscat, Oman
,
Robin Thackray Department of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada; Department of Social Work, The Hospital for Sick Children, Toronto, Ontario, Canada
,
LaToya Austin Department of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada
,
Alissa Ulster Department of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada; Department of Social Work, The Hospital for Sick Children, Toronto, Ontario, Canada
,
Joanne Sutherland Department of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada
&
Alex V. Levin Department of Genetics, The Hospital for Sick Children, Toronto, Ontario, Canada
 show all
Pages 25-30 | Accepted 12 Oct 2006, Published online: 08 Jul 2009

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Nancy Cross, Cécile van Steen, Yasmina Zegaoui, Andrew Satherley & Luigi Angelillo. (2022) Retinitis Pigmentosa: Burden of Disease and Current Unmet Needs. Clinical Ophthalmology 16, pages 1993-2010.
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Marie Chivers, Nan Li, Feng Pan, Heather Wieffer, Rafal Slowik & Jittrakul Leartsakulpanitch. (2021) The Burden of X-Linked Retinitis Pigmentosa on Patients and Society: A Narrative Literature Review. ClinicoEconomics and Outcomes Research 13, pages 565-572.
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Sharon A Bentley, Fleur O’hare, Gregory C Murphy, Robert P Finger, Chi D Luu, Jill E Keeffe, Carla J Abbott, Robyn H Guymer & Lauren N Ayton. (2019) Psychosocial assessment of potential retinal prosthesis trial participants. Clinical and Experimental Optometry 102:5, pages 506-512.
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Georgia Yioti, Maria Stefaniotou, Ioulia Ziavrou, Konstantinos Kotsis & Thomas Hyphantis. (2017) Illness Perceptions, Psychiatric Manifestations, and Quality of Life in Patients with Inherited Retinal Dystrophies. Seminars in Ophthalmology 32:4, pages 428-437.
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Tali Spiegel, Vera De Bel & Nardi Steverink. (2016) Keeping up appearances: the role of identity concealment in the workplace among adults with degenerative eye conditions and its relationship with wellbeing and career outcomes. Disability and Rehabilitation 38:7, pages 627-636.
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Melanie P. Napier, Kavin Selvan, Robin Z. Hayeems, Cheryl Shuman, David Chitayat, Joanne E. Sutherland, Megan A. Day & Elise Héon. (2021) Gene therapy: perspectives from young adults with Leber’s congenital amaurosis. Eye 36:11, pages 2088-2093.
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Nancy Cross, Cécile van Steen, Yasmina Zegaoui, Andrew Satherley & Luigi Angelillo. (2022) Current and Future Treatment of Retinitis Pigmentosa. Clinical Ophthalmology Volume 16, pages 2909-2921.
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Celeste S. D'Amanda, Rosalie Nolen, Laryssa A. Huryn & Amy Turriff. (2020) Psychosocial impacts of Mendelian eye conditions: A systematic literature review. Survey of Ophthalmology 65:5, pages 562-580.
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Gulcan Garip & Atiya Kamal. (2019) Systematic review and meta-synthesis of coping with retinitis pigmentosa: implications for improving quality of life. BMC Ophthalmology 19:1.
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Ava Katherine Bittner, Jennifer A. Haythornthwaite, Chandni Patel & Michael T. Smith. (2018) Subjective and Objective Measures of Daytime Activity and Sleep Disturbance in Retinitis Pigmentosa. Optometry and Vision Science 95:9, pages 837-843.
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Anne Elisabeth Chaumet-Riffaud, Philippe Chaumet-Riffaud, Anaelle Cariou, Céline Devisme, Isabelle Audo, José-Alain Sahel & Saddek Mohand-Said. (2017) Impact of Retinitis Pigmentosa on Quality of Life, Mental Health, and Employment Among Young Adults. American Journal of Ophthalmology 177, pages 169-174.
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Keziah Latham, Mohammad Baranian, Matthew Timmis & Shahina Pardhan. (2015) Emotional Health of People with Visual Impairment Caused by Retinitis Pigmentosa. PLOS ONE 10:12, pages e0145866.
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E Clarke, R Combs, G Black & G Hall. (2014) Patient Expectations and Attitudes Towards Specialist Genetic Eye Services. Journal of Genetic Counseling 24:2, pages 349-357.
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Mette Bertelsen, Allan Linneberg & Thomas Rosenberg. (2015) Socio-economic characteristics of patients with generalized retinal dystrophy in Denmark. Acta Ophthalmologica 93:2, pages 134-140.
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Noe Garin, Beatriz Olaya, Elvira Lara, Maria Victoria Moneta, Marta Miret, Jose Luis Ayuso-Mateos & Josep Maria Haro. (2014) Visual impairment and multimorbidity in a representative sample of the Spanish population. BMC Public Health 14:1.
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Martin McKibbin, Mushtaq Ahmed, Matthew J Allsop, Louise Downey, Richard Gale, Hilary Louise Grant, Barbara Potrata, Thomas A Willis & Jenny Hewison. (2014) Current understanding of genetics and genetic testing and information needs and preferences of adults with inherited retinal disease. European Journal of Human Genetics 22:9, pages 1058-1062.
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Helena Chacón-López, Maria D. López-Justicia & Mathijs P.J. Vervloed. (2013) Psychological and educational recommendations for working with young people with Retinitis Pigmentosa. School Psychology International 35:4, pages 357-369.
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Rachel L Gillespie, Georgina Hall & Graeme C Black. (2014) Genetic testing for inherited ocular disease: delivering on the promise at last?. Clinical & Experimental Ophthalmology 42:1, pages 65-77.
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Ryan Combs, Marion McAllister, Katherine Payne, Jo Lowndes, Sophie Devery, Andrew R Webster, Susan M Downes, Anthony T Moore, Simon Ramsden, Graeme Black & Georgina Hall. (2013) Understanding the impact of genetic testing for inherited retinal dystrophy. European Journal of Human Genetics 21:11, pages 1209-1213.
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Ryan Combs, Georgina Hall, Katherine Payne, Jo Lowndes, Sophie Devery, Susan M Downes, Anthony T Moore, Simon Ramsden, Graeme C M Black & Marion McAllister. (2013) Understanding the expectations of patients with inherited retinal dystrophies. British Journal of Ophthalmology 97:8, pages 1057-1061.
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K Branham & B M Yashar. (2013) Providing comprehensive genetic-based ophthalmic care. Clinical Genetics 84:2, pages 183-189.
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Joanne E Sutherland & Megan A Day. (2009) Genetic counseling and genetic testing in ophthalmology. Current Opinion in Ophthalmology 20:5, pages 343-350.
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BB Biesecker & L Erby. (2008) Adaptation to living with a genetic condition or risk: a mini-review. Clinical Genetics 74:5, pages 401-407.
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