Shared Decision Making in Ophthalmology: A Scoping Review

Bouaziz, Michael; Cheng, Tiffany; Minuti, Aurelia; Denisova, Ksenia; Barmettler, Anne

doi:10.1016/j.ajo.2021.12.005

Cited by 11 publications

(6 citation statements)

References 35 publications

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“…Listening to our study’s participants, it is vital that patients are effectively counselled on the natural history of GA and accurate expectations of treatment effects; including the fact that they are unlikely to perceive treatment benefits directly, and can expect their GA to continue to progress, albeit at a slower pace. Treatment initiation should follow a shared decision-making process involving the patient and their eye care team [ 37 , 38 ]. Since participants also noted that their stance on treatment may change over time, counselling on treatment expectations will need to take place regularly to support adherence [ 10 ].…”

Section: Discussionmentioning

confidence: 99%

Exploring patient acceptability of emerging intravitreal therapies for geographic atrophy: A mixed-methods study

Enoch

Ghulakhszian

Sekhon

et al. 2023

Eye

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Background/Objectives The acceptability of emerging intravitreal therapies for patients with Geographic Atrophy (GA) is currently unknown. This study therefore aimed to investigate the extent to which regular intravitreal injections may be acceptable to GA patients. Subjects/Methods Thirty UK-based individuals with GA secondary to age-related macular degeneration (AMD), recruited from two London-based hospitals, were interviewed in April-October 2021 regarding acceptability of new GA treatments. Participants responded to a structured questionnaire, as well as open-ended questions in a semi-structured interview. The Theoretical Framework of Acceptability (TFA) informed framework analysis of the qualitative data. Results Twenty participants (67%) were female, and median (interquartile range (IQR)) age was 83 (78, 87) years. 37% of participants had foveal centre-involving GA, and better eye median (IQR) logMAR visual acuity was 0.30 (0.17, 0.58). Data suggested that 18 participants (60% (95% CI: 41–79%)) would accept the treatment, despite awareness of potential drawbacks. Eight participants (27% (95% CI: 10–43%) were ambivalent or undecided about treatment, and four (13%) (95% CI: 0–26%) would be unlikely to accept treatment. Reducing the frequency of injections from monthly to every other month increased the proportion of participants who considered the treatments acceptable. Conversely, factors limiting acceptability clustered around: the limited magnitude of treatment efficacy; concerns about side effects or the increased risk of neovascular AMD; and the logistical burden of regular clinic visits for intravitreal injections. Misunderstandings of potential benefits indicate the need for appropriately-designed patient education tools to support decision-making. Conclusions Our study suggests a majority of participants would be positive about intravitreal treatment for GA, in spite of potential burdens.

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Section: Discussionmentioning

confidence: 99%

Exploring patient acceptability of emerging intravitreal therapies for geographic atrophy: A mixed-methods study

Enoch

Ghulakhszian

Sekhon

et al. 2023

Eye

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“…Treatment initiation should follow a shared decision-making process involving the patient and their eye care team. 46,47 Since participants also noted that their stance on treatment may change over time, counselling on treatment expectations should take place regularly to support adherence, 21 rather than simply being a one-off event.…”

Section: Discussionmentioning

confidence: 99%

Exploring patient acceptability of emerging intravitreal therapies for Geographic Atrophy: a mixed-methods study

Enoch

Ghulakhszian

Sekhon

et al. 2022

Preprint

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Purpose: The acceptability of emerging intravitreal therapies for GA (that can slow down, but not stop or reverse, GA progression) is currently unknown. This study therefore aimed to: investigate whether regular intravitreal injections will be acceptable as treatment for GA patients; identify which attributes of current treatments in late stage development patients find less acceptable; and explore whether patient-related factors influence GA treatment acceptability. Design: Exploratory, cross-sectional, mixed-methods study. Participants: 30 UK-based individuals with GA secondary to AMD, recruited from two London-based hospitals, interviewed in April-October 2021. Methods: Participants responded to a structured questionnaire, as well as open-ended questions in a semi-structured interview. Quantitative data were analysed using descriptive statistics and non-parametric measures of correlation. Qualitative data were analysed using the Framework Method of analysis, using the Theoretical Framework of Acceptability to guide deductive analysis. Main outcome measures: Main quantitative measures were Likert-type scale responses about acceptability of GA treatments. Qualitative outcomes of interest related to participants' hopes, concerns and understanding of the proposed new intravitreal treatments for GA. Results: Twenty participants (67%) were female, and median (interquartile range (IQR)) age was 83 (78, 87) years. 37% of participants had centre-involving GA, and better eye median (IQR) logMAR visual acuity was 0.30 (0.17, 0.58). Data suggested that 18 participants (60% (95% CI: 41-79%)) would accept the treatment at any cost, despite their awareness of the drawbacks. Eight participants (27% (95% CI: 10-43%) were ambivalent or undecided about treatment, and four (13%) (95% CI: 0-26%)) would be unlikely to accept treatment. Qualitative data indicated that participants' prioritisation of continuation with vision-specific activities influenced treatment acceptability. Conversely, factors limiting acceptability clustered around: the limited magnitude of treatment efficacy; concerns about side effects or the increased risk of neovascular AMD; and the logistical burden of regular clinic visits for intravitreal injections. There were common misunderstandings regarding the likely effects of GA treatment. Conclusions: This exploratory study suggests that a majority of participants would be positive about intravitreal treatment for GA, even in spite of manifold burdens and inconveniences. Insights from this study will inform the development of a larger, UK-wide quantitative study on GA treatment acceptability.

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“…(Quote 12) Quotes 11 and 12 suggest that Chanel was well informed and given space to ask questions, but still approached the procedure with uncertainty and anxiety. There are indications that patient decision aids, informational tools that help clinicians and patients decide together on how to treat chronic or surgical conditions, can support patients' decision-making and help them avoid decisional regret [36].…”

Section: Surgical Managementmentioning

confidence: 99%

“…Quotes 11 and 12 suggest that Chanel was well informed and given space to ask questions, but still approached the procedure with uncertainty and anxiety. There are indications that patient decision aids, informational tools that help clinicians and patients decide together on how to treat chronic or surgical conditions, can support patients’ decision-making and help them avoid decisional regret [ 36 ]. “Once I reached the theatre room, my body froze although I was present, everything went numb, I kept telling myself to pay attention and to listen to the instructions given and to focus … The surgeon was so attentive and making sure he was communicating with me and asking how I felt and if I could feel any pain, at one point I remember raising my hand to indicate that I could feel some discomfort.…”

Section: Introductionmentioning

confidence: 99%

Proliferative Sickle Cell Retinopathy: A Patient and a Physician’s Perspective on Quality of Life and Quality of Eye Care

Taylor,

Awadzi,

Enoch

et al. 2024

Ophthalmol Ther

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The impact of visual impairment in the context of sickle cell disease is poorly understood. Despite the significant advancements over the past three decades in retinal imaging and in the understanding of molecular mechanisms that drive retinal neovascularization, there has been little improvement in the management of proliferative sickle cell retinopathy. This article is co-authored by a patient impacted by proliferative sickle cell retinopathy. She highlights her personal experience of sight loss from proliferative sickle cell retinopathy and the impact on her daily life and mental health. Subsequent to diagnosis and management of proliferative sickle cell retinopathy, she continues to live with irreversible sight loss and provides crucial insight from a patient’s perspective into the broad lack of high-quality educational materials online and lack of understanding of the disease within the clinical community. This article aims to provide a strong narrative to emphasize the need for further qualitative and quantitative research in this area, to bring about the holistic step-change required to improve visual outcomes and eyecare for people with sickle cell disease.

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Shared Decision Making in Ophthalmology: A Scoping Review

Cited by 11 publications

References 35 publications

Exploring patient acceptability of emerging intravitreal therapies for geographic atrophy: A mixed-methods study

Exploring patient acceptability of emerging intravitreal therapies for geographic atrophy: A mixed-methods study

Exploring patient acceptability of emerging intravitreal therapies for Geographic Atrophy: a mixed-methods study

Proliferative Sickle Cell Retinopathy: A Patient and a Physician’s Perspective on Quality of Life and Quality of Eye Care

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