Mental health support across the sight loss pathway: a qualitative exploration of eye care patients, optometrists, and ECLOs

Trott, Mike; Driscoll, Robin; Bourne, Rupert; Slade, John; Ingleton, H; Farrell, Sarah; Bowen, Michael A.; Lovell-Patel, Rupal; Kidd, John; Pardhan, Shahina

doi:10.1038/s41433-022-02373-z

Cited by 3 publications

(1 citation statement)

References 20 publications

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“…1C ). A recent study looking at mental health and support services for those diagnosed with eye disease similarly found a lack of signposting for patients [ 4 ]. There could be many factors involved, including patients forgetting, or not being able to take in all the information provided.…”

Section: Discussionmentioning

confidence: 99%

Comparing views of patients and eye care professionals on the information provided on age-related macular degeneration and diabetic macular oedema

Clinton,

Hoad,

Bloomfield

et al. 2024

Eye

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Section: Discussionmentioning

confidence: 99%

Comparing views of patients and eye care professionals on the information provided on age-related macular degeneration and diabetic macular oedema

Clinton,

Hoad,

Bloomfield

et al. 2024

Eye

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Economic Burden of Late-Stage Age-Related Macular Degeneration in Bulgaria, Germany, and the US

Paudel,

Brady,

Stratieva

et al. 2024

JAMA Ophthalmol

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ImportanceAge-related macular degeneration (AMD) is a highly prevalent and debilitating retinal condition that affects more than 200 million people globally, with the severe late-stage forms—neovascular AMD (nAMD) and geographic atrophy (GA)—affecting more than 11 million people globally. However, much is unknown about the economic burden of the disease.ObjectiveTo estimate the economic burden associated with late-stage AMD in Bulgaria, Germany, and the US at the societal level.Design, Setting, and ParticipantsThis study used the prevalence approach cost-of-illness economic modeling to estimate costs attributable to late-stage AMD. Data on health care resource utilization, well-being, and productivity were obtained via primary data collection. Additional data required for the model were sourced from available published literature. Data were collected from January 2021 to March 2022, and analyzed from April to July 2022. Participants older than 50 years residing in Bulgaria, Germany, and the US who were diagnosed with late-stage AMD (nAMD or any form of GA) in 1 or both eyes and caregivers who care for people diagnosed with late-stage AMD were recruited through ophthalmological clinics in Bulgaria and Germany and via online newsletters and social media in the US.Main Outcomes and MeasuresThe main outcomes were direct medical costs (disease-related health care expenditures), indirect medical costs (care support and assistive technology), well-being cost (loss of well-being), and productivity cost (loss in productivity due to the diseases for both patient and caregivers).ResultsOf the 128 individuals with late-stage AMD in this study, 80 (62%) were female, and 120 (94%) were aged 60 years or older. Of the 61 caregivers, 43 (70%) were female and 55 (91%) were aged 45 years or older. Estimated per-annum total costs attributable to late-stage AMD were €449.5 million ($512.5 million) in Bulgaria, €7.6 billion ($8.6 billion) in Germany, and €43.2 billion ($49.4 billion) in the US. Across all countries, 10% to 13% of the total cost incurred was attributed to direct medical costs. In Germany and Bulgaria, the biggest contributor to the total economic burden was reduced well-being (67% and 76%, respectively), whereas in the US, loss of productivity (42%) was the biggest contributor.Conclusions and RelevanceThe findings of this study indicate a substantial burden of late-stage AMD on patients and caregivers in the US, Germany, and Bulgaria. Across the 3 countries, reduced well-being and loss of productivity were relatively large contributors to the total economic burden. Implementing measures to reduce AMD incidence, delay disease progression, and alleviate humanistic burden may help reduce the economic burden of late-stage AMD.

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A patient perspective of supporting mental wellbeing in ophthalmology through Five Stages of Sight Loss

Thurston

2024

British Journal of Visual Impairment

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In this autoethnography, the experience of being a patient in an ophthalmology clinic is explored, within the context of the Five Stages of Sight Loss Model. The author describes her lived experience of diagnosis and critically examines her experience of receiving treatment and care within an ophthalmology clinic. The literature focusing on supporting patient mental wellbeing in an ophthalmology clinic is considered, and a patient perspective on improving support for mental wellbeing is proposed. Consistent care, clinical skills, the interpersonal skills of the ophthalmologist, and shared decision-making with patients emerge as important factors. The concept of ‘embedded counselling’ is considered.

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Mental health support across the sight loss pathway: a qualitative exploration of eye care patients, optometrists, and ECLOs

Cited by 3 publications

References 20 publications

Comparing views of patients and eye care professionals on the information provided on age-related macular degeneration and diabetic macular oedema

Comparing views of patients and eye care professionals on the information provided on age-related macular degeneration and diabetic macular oedema

Economic Burden of Late-Stage Age-Related Macular Degeneration in Bulgaria, Germany, and the US

A patient perspective of supporting mental wellbeing in ophthalmology through Five Stages of Sight Loss

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