Evaluation of vision-related quality of life in retinitis pigmentosa patients with low vision

Altınbay, Deniz; Taşkın, İbrahim

doi:10.1007/s10384-021-00875-z

Cited by 8 publications

(13 citation statements)

References 31 publications

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“…The level of anxiety in RP patients was significantly related to the limitation of the NEI-VFQ25 questionnaire 9 . Quality of life can be significantly increased by improving the reading speed of RP patients 10 , as was evident in the comparison of pre-rehabilitation and post-rehabilitation questionnaires of our patient. As his reading quality improved, we also noticed a positive impact on his overall wellbeing and mental health, as this significantly impacted his career and professional life.…”

Section: Discussionsupporting

confidence: 68%

A Journey towards Improved Quality of Life of a Typist with Retinitis Pigmintosa

Balouch¹,

Shahbaz²,

Balouch

2022

ashkmdc

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Retinitis pigmentosa (RP) is a group of inherited rod-cone degenerative pathologies that present clinically with similar signs and symptoms. Common fundus findings include bone-spicule pigment formation, attenuated blood vessels in the posterior pole and waxy optic nerve pallor. Symptoms mostly start with progressive night blindness, mid-peripheral visual field defects, and eventual tunnel vision. A 42 year old male patient, typist by profession presented to our clinic with complaints of decreased vision and reduced dark adaptation affecting his quality of life a lot. On examination, he was diagnosed as an advanced case of retinitis pigmentosa bilaterally and there was bilateral posterior sub capsular cataract. His quality of life was assessed by using a simplified version of the VFQ-25 questionnaire. After successful cataract surgery and low vision rehabilitation his quality of life was reassessed by using same questionnaire. He had a much more positive outlook towards his eyesight. Our case report reviews the life changing personalized low vision rehabilitation of a typist with retinitis pigmentosa. Key words: retinitis pigmentosa, quality of life, low vision rehabilitation

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Section: Discussionsupporting

confidence: 68%

A Journey towards Improved Quality of Life of a Typist with Retinitis Pigmintosa

Balouch¹,

Shahbaz²,

Balouch

2022

ashkmdc

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“…More specifically, BCVA and macular sensitivity were found to be closely related to quality of life score for ‘near activities’ (V NA ). Interestingly, some earlier reports did not find a correlation between NEI VFQ‐25 scores and visual acuity in RP, and visual field loss has been proposed as a better estimate of quality of life (Altinbay & Taskin, 2021; Sugawara et al, 2010). Instead of visual field loss, we investigated macular sensitivity on microperimetry as an even more sensitive outcome measure in the present CRB1‐ IRD cohort.…”

Section: Discussionmentioning

confidence: 95%

Quality of life in patients with CRB1‐associated retinal dystrophies: A longitudinal study

Karuntu,

Nguyen,

Talib

et al. 2023

Acta Ophthalmologica

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PurposeTo assess the longitudinal vision‐related quality of life among patients with CRB1‐associated inherited retinal dystrophies.MethodsA longitudinal questionnaire study included 22 patients with pathogenic CRB1 variants. The National Eye Institute Visual Function Questionnaire (39 items, NEI VFQ‐39) was applied at baseline, two‐year follow‐up, and 4‐year follow‐up. Classical test theory was performed to obtain subdomain scores and in particular ‘near activities’ and ‘total composite’ scores. The Rasch analysis based on previous calibrations of the NEI VFQ‐25 was applied to create visual functioning and socio‐emotional subscales.ResultsIn total, 22 patients with pathogenic CRB1 variants were included, with a median age of 25.0 years (IQR: 13–31 years) at baseline and mean follow‐up of 4.0 ± 0.3 years. A significant decline at 4 years was observed for ‘near activities’ (51.0 ± 23.8 vs 35.4 ± 14.7, p = 0.004) and ‘total composite’ (63.0 ± 13.1 vs 52.0 ± 12.1, p = 0.001) subdomain scores. For the Rasch‐scaled scores, the ‘visual functioning’ scale significantly decreased after 4 years (−0.89 logits; p = 0.012), but not at 4‐year follow‐up (+0.01 logits; p = 0.975). The ‘socio‐emotional’ scale also showed a significant decline after 2 years (−0.78 logits, p = 0.033) and 4 years (−0.83 logits, p = 0.021).ConclusionIn the absence of an intervention, a decline in vision‐related quality of life is present in patients with pathogenic CRB1 variants at 4‐year follow‐up. Patient‐reported outcome measures should be included in future clinical trials, as they can be a potential indicator of disease progression and treatment efficacy.

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“…The results showed that certain chronic ocular diseases had significant long-term effects on the quality of life, such as reading speed and education, due to impaired vision [ 25 – 27 ]. A recent clinical study showed that increased reading speed could improve QoL of patients with retinitis pigmentosa, and reading speed was the only modifiable factor affecting VR-QoL [ 28 ]. Another study indicated that patients with retinitis pigmentosa who had higher education levels showed better reading ability, and reduced visual acuity was a strong negative predictor of reading performance [ 29 ].…”

Section: Discussionmentioning

confidence: 99%

Comprehensive evaluation of functional vision, quality of life, and cognitive ability in pediatric uveitis

Wan,

Chen,

Xun

et al. 2023

BMC Ophthalmol

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Background Pediatric uveitis may cause severe impairment of vision in children and affect their quality of life as well as cognitive ability. This study aims to evaluate the functional vision, visual-related and health-related quality of life, and cognitive ability in pediatric uveitis. Methods Children with uveitis aged 5–16 years old completed six validated instruments to assess functional visual ability with Cardiff Visual Ability Questionnaire for Children (CVAQC), vision-related quality of life with Impact of Vision Impairment for Children (IVI-C), health-related quality of life with Pediatric Quality of Life Inventory (PedsQL), cognitive ability with Chinese Wechsler Intelligence Scale for Children (C-WISC), and depression and anxiety evaluation with Hospital Anxiety and Depression Scale (HAD). Results The CVAQC, IVI-C, and PedsQL scores of pediatric uveitis were significantly lower than that of normal levels. Full-scale intelligence quotient (IQ) and performance IQ were significantly lower in pediatric uveitis patients with impaired vision in their best eye (visual acuity < 0.3) compared to those with a vision equal to or better than 0.3. Verbal IQ was significantly lower in male pediatric uveitis patients with impaired vision compared to those with a vision equal to or better than 0.3. Additionally, parents of pediatric uveitis patients with impaired vision generally had lower educational levels than parents of those with a vision equal to or better than 0.3. Conclusions Impaired vision caused by pediatric uveitis has a significant impact on children’s functional visual ability and quality of life. The development of cognitive function in pediatric uveitis is also significantly hindered.

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Evaluation of vision-related quality of life in retinitis pigmentosa patients with low vision

Cited by 8 publications

References 31 publications

A Journey towards Improved Quality of Life of a Typist with Retinitis Pigmintosa

A Journey towards Improved Quality of Life of a Typist with Retinitis Pigmintosa

Quality of life in patients with CRB1‐associated retinal dystrophies: A longitudinal study

Comprehensive evaluation of functional vision, quality of life, and cognitive ability in pediatric uveitis

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