Socio‐economic characteristics of patients with generalized retinal dystrophy in <scp>D</scp>enmark

Bertelsen, Mette; Linneberg, Allan; Rosenberg, Thomas

doi:10.1111/aos.12467

Cited by 17 publications

(17 citation statements)

References 22 publications

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“…Bittner and colleagues [12*] state that improving health and quality of life in patients with chronic, disabling conditions, such as RP, involves more than identifying treatments and cures. Therefore, there is a need for a holistic and multidisciplinary approach to understand and provide support for people with RP, that does not only focus on the medical and physiological aspects related to the condition, but also takes into consideration, psychosocial and organizational factors as well [13, 14].…”

Section: Introductionmentioning

confidence: 99%

Systematic review and meta-synthesis of coping with retinitis pigmentosa: implications for improving quality of life

Garip

Kamal

2019

BMC Ophthalmol

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Background Retinitis pigmentosa (RP) are a group of incurable and inherited eye conditions, and the leading cause of inherited blindness in people under the age of 60. The aim of this systematic review and meta-synthesis was to present a comprehensive overview of qualitative papers on experiences and coping strategies of adults living with RP, and how these influence quality of life. Methods A pre-registered search strategy was applied in nine databases and 12 articles met eligibility criteria. Studies included were from Australia, Brazil, Ireland, Netherlands, Republic of Korea, United Kingdom, and USA. The overall sample was based on 126 people with RP (ages ranging from 18 to 85; at least 65 female). Principles of meta-ethnography were used to synthesise the articles revealing five higher-level meta-themes. Results The five higher-level meta-themes were, 1) managing identity: making sense of RP, managing autonomy and independence; 2) living with RP: practical and emotional issues; 3) experiences with healthcare professionals and other social support; 4) adaptive and maladaptive coping strategies; and 5) impact of RP on work and career. A conceptual model was developed by grouping higher-level meta-themes as intra- and inter-individual factors and how they may be implicated with coping strategies and quality of life. Conclusions This review established factors that can be explored as potential psychosocial influences in the relationship between coping strategies and quality of life in people with RP. Further understanding of these factors and mechanisms can help inform intervention development to support adaptive coping in living with RP and positively impact quality of life.

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Section: Introductionmentioning

confidence: 99%

Systematic review and meta-synthesis of coping with retinitis pigmentosa: implications for improving quality of life

Garip

Kamal

2019

BMC Ophthalmol

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“…Visual impairments are also strongly associated with social issues such as employment and education. It has been reported that patients with RP have lower educational levels, lower employment rates, and lower income levels [ 17 ]. A recent report from France supported the idea that RP was closely related to social difficulties which can then lead further mental health problems especially in younger patients [ 16 ].…”

Section: Introductionmentioning

confidence: 99%

Quantitative analyses of factors related to anxiety and depression in patients with retinitis pigmentosa

et al. 2018

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The purpose of this study is to determine the factors related to anxiety and depression in patients with retinitis pigmentosa (RP). The status of anxiety and depression was determined in RP patients with the Hospital Anxiety and Depression Scale (HADS) questionnaire which consisted of subscales for HADS-anxiety (HADS-A) and HADS-depression (HADS-D). The vision-specific quality of life (VSQOL) was assessed with the National Eye Institute Visual Function Questionnaire 25 (NEI-VFQ25). The correlations between the HADS-A or HADS-D scores and vision-related clinical parameters such as the best-corrected visual acuity (BCVA), Functional Acuity Score, Functional Field Score, Functional Vision Score, the NEI- VFQ25 subscale score were determined. The socioeconomic status, such as the work status and membership in the RP society, was investigated to determine the factors related to the HADS-A and HADS-D scores. One hundred and twelve RP patients (46 men and 66 women) with mean age of 60.7±15.4 (standard deviation) years were studied. The HADS-A score was not significantly correlated with any visual functions but was significantly correlated with the general health condition (r = -0.34, P<0.001) and the role limitation (r = -0.20, P = 0.03) of the NEI-VFQ25 subscale. The HADS-D score was significantly correlated with all the visual functions (r = -0.38 to 0.29, P<0.001), the NEI-VFQ25 subscale score (r = - 0.58 to -0.33, P<0.001) by Spearman’s correlations. The HADS-A score was significantly higher in the members of the RP society than in non-members (P = 0.013). The mean HADS-D score of employed individuals was significantly lower than that of unemployed ones (P = 0.001) by the Mann-Whitney U test. The results indicate that visual function impairments and vision-related quality of life are associated with a depressive state, and the general health condition is related to anxiety in RP patients. Being employed may be strongly correlated with the degree of depression in RP patients.

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“…Studies of patients with visual impairments, including patients with RP, have reported significant economic and social disadvantage in affected individuals, their families, and society generally. 39,[44][45][46] Patients with visual deficiencies have more frequent medical visits, may need assistance to perform everyday activities, and may have difficulties maintaining employment. Studies have reported that there are significant differences between patients with RP and the general population in terms of education level and income 44 and that patients with RP use more inpatient, outpatient, and emergency department services and prescription drugs.…”

Section: Choroideremia and Associated Vision Loss Have A Significant mentioning

confidence: 99%

“…39,[44][45][46] Patients with visual deficiencies have more frequent medical visits, may need assistance to perform everyday activities, and may have difficulties maintaining employment. Studies have reported that there are significant differences between patients with RP and the general population in terms of education level and income 44 and that patients with RP use more inpatient, outpatient, and emergency department services and prescription drugs. 45 A systematic review of the literature regarding the economic burden of visual impairment and blindness reported high indirect costs primarily related to lost productivity, changes in employment, loss of income, premature mortality, and excess financial burden on society.…”

Section: Choroideremia and Associated Vision Loss Have A Significant mentioning

confidence: 99%

Choroideremia

Pennesi

Birch

Duncan

et al. 2019

Retina

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Purpose: Choroideremia is an incurable, X-linked, recessive retinal dystrophy caused by loss of function mutations in the CHM gene. It is estimated to affect approximately 1 in 50,000 male patients. It is characterized by progressive degeneration of the retinal pigment epithelium, choroid, and photoreceptors, resulting in visual impairment and blindness. There is an unmet need in choroideremia, because currently, there are no approved treatments available for patients with the disease. Methods: We review the patient journey, societal impact, and emerging treatments for patients with choroideremia. Results: Its relative rarity and similarities with other retinal diseases in early years mean that diagnosis of choroideremia can often be delayed. Furthermore, its impact on affected individuals, and wider society, is also likely underestimated. AAV2-mediated gene therapy is an investigational treatment that aims to replace the faulty CHM gene. Early-phase studies reported potentially important visual acuity gains and maintenance of vision in some patients, and a large Phase 3 program is now underway. Conclusion: Choroideremia is a disease with a significant unmet need. Interventions that can treat progression of the disease and improve visual and functional outcomes have the potential to reduce health care costs and enhance patient quality of life.

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Socio‐economic characteristics of patients with generalized retinal dystrophy in Denmark

Cited by 17 publications

References 22 publications

Systematic review and meta-synthesis of coping with retinitis pigmentosa: implications for improving quality of life

Systematic review and meta-synthesis of coping with retinitis pigmentosa: implications for improving quality of life

Quantitative analyses of factors related to anxiety and depression in patients with retinitis pigmentosa

Choroideremia

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