The Relationship Between Visual Disability and Visual Scores in Patients With Retinitis Pigmentosa

Sumi, Izumi; Matsumoto, Shun; Okajima, Osamu; Shirato, Shiroaki

doi:10.1016/s0021-5155(99)00171-9

Cited by 28 publications

(19 citation statements)

References 6 publications

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“…There are currently nine RP-specific patient-reported outcome (PRO) instruments. 31,[34][35][36][37][38][39][40][41] The motive behind our endeavor to develop a comprehensive RP-specific PRO is that none of the existing PRO instrument has undergone comprehensive validation in this disease group and their content coverage is limited to measuring only a few QoL domains (predominantly mobility). [42][43][44] Lack of an appropriate RP-specific PRO measure restricts the understanding of the full impact of RP on QoL.…”

Section: Discussionmentioning

confidence: 99%

Seeing through their eyes: lived experiences of people with retinitis pigmentosa

Senthil

Khadka

Pesudovs

2017

Eye

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PurposeRetinitis pigmentosa (RP) is the most common retinal degeneration causing blindness. Although their clinical problems are amenable for the clinical diagnosis, their day-to-day problems for having to live with the disease are mostly unexplored. This study aims to explore and understand the issues and impact of people with RP on quality of life (QoL).MethodsA qualitative research methodology to facilitate the understanding of the experiences of people with RP was carried out. Data were collected through audio-recorded semi-structured interviews. Thematic analysis occurred through the process of line-by-line coding, aggregation, and theme development using the NVivo-10 software.ResultsTwenty-three interviews were conducted (mean age=56 years; females, 14). We identified five major QoL themes: (1) struggle to perform important day-to-day tasks; (2) concerns about disease progression, disease outcome and personal safety; (3) facing a lot of emotional and psychological challenges; (4) experiencing a myriad of visual symptoms; and (5) adopting different strategies to cope and manage stressful circumstances. Difficulty in performing important day-to-day tasks was the most prominent QoL issue among these people. Their major concerns were going blind and uncertainties about their future. They face a lot of emotional and psychological challenges to adapt to the physiological stress associated with the progressive vision loss. However, they adopt several coping strategies to manage the stressful circumstances.ConclusionsPeople with RP experience a myriad of QoL issues. Despite all the hardship, they remain optimistic and learn to accept their eye condition and move on in life.

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Section: Discussionmentioning

confidence: 99%

Seeing through their eyes: lived experiences of people with retinitis pigmentosa

Senthil

Khadka

Pesudovs

2017

Eye

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“…It is important to assess the vision-related quality of life (VRQOL) in RP patients because there is no cure for RP, and patients must function with visual impairment for their entire lives. Several studies evaluate the performance of daily activities of RP patients [1][2][3]. The National Eye Institute Visual Function Questionnaire-25 (NEI VFQ-25) was developed to test the general well-being of patients with diseases that cause vision loss, i.e., VRQOL [4,5].…”

Section: Introductionmentioning

confidence: 99%

Relationship between vision-related quality of life and microperimetry-determined macular sensitivity in patients with retinitis pigmentosa

et al. 2011

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“…Thus, there have been several studies that have evaluated the performance of daily activities by RP patients. [1][2][3] These studies, which used the investigators' questionnaire, found that the visual acuity and visual fields mostly influenced the patients' daily life.…”

Section: Introductionmentioning

confidence: 99%

Relationship between peripheral visual field loss and vision-related quality of life in patients with retinitis pigmentosa

Sugawara

Hagiwara

Hiramatsu

et al. 2009

Eye

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Purpose To determine the vision-related quality of life (VRQOL) with the National Eye Institute Visual Function Questionnaire-25 (NEI VFQ-25) in patients with retinitis pigmentosa (RP), and to examine the relationship between VRQOL and peripheral visual field defects. Design Prospective study. Methods The Japanese version of the NEI VFQ-25 was used to study 40 patients with typical RP whose visual acuity was X0.7 (better than 0.15 in log MAR). For control, 40 volunteers with normal vision were studied in the same way. The peripheral visual field was evaluated by Goldmann's perimetry, and the degree of field loss was classified into seven grades. The correlation between the mean of the total composite score of the NEI VFQ-25 and the degree of the visual field loss was determined.Results The mean NEI VFQ-25 score was 68.4 in RP patients and 90.1 in normal controls. This difference was highly significant (P ¼ 0.00004). Among RP patients, there was a significant negative correlation between the mean NEI VFQ-25 score and the degree of visual field loss (r ¼ À0.519, P ¼ 0.0006). Conclusion The significant correlation between the peripheral visual field loss and VRQOL score obtained with the NEI VFQ-25, indicates that a good estimate of the QOL can be determined by the degree of visual field loss in RP patients.

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The Relationship Between Visual Disability and Visual Scores in Patients With Retinitis Pigmentosa

Cited by 28 publications

References 6 publications

Seeing through their eyes: lived experiences of people with retinitis pigmentosa

Seeing through their eyes: lived experiences of people with retinitis pigmentosa

Relationship between vision-related quality of life and microperimetry-determined macular sensitivity in patients with retinitis pigmentosa

Relationship between peripheral visual field loss and vision-related quality of life in patients with retinitis pigmentosa

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