Patients' and health professionals' views on shared decision‐making in age‐related macular degeneration care: A qualitative study

Scheffer, Mariska; Menting, Juliane; Roodbeen, Ruud; Dulmen, Sandra van; Hecke, Manon Van; Schlingemann, Reinier O.; Nispen, Ruth M. A. van; Boeije, Hennie

doi:10.1111/opo.13016

Cited by 11 publications

(8 citation statements)

References 29 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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“…47 Overall, the results of this study align with the view that verbal communication contextualised for both the individual's circumstances and AMD seems to be more conducive to patient satisfaction and therefore preferable over 'assembly-line style consultations'. 48 In addition to addressing these issues of contextualisation (as per Themes 3 and 4, as discussed above), there may be other verbal communication issues to resolve. For instance, multiple optometrists used the term 'oldies' in focus groups (Quote #22, #25, #59) to refer to older patients.…”

Section: Chairside Verbal Communication Techniquesmentioning

confidence: 99%

“…The coherency of patients' experience of care coordination has previously appeared lacking; patients sometimes had no recollection of being offered important context-specific guidance regarding diet, nutrition or smoking cessation. 30,56 To address this issue and also to provide a greater degree of overall patient support, there have been multiple proposals for an optometrist or other professional-for example, a nurse, 48 a general medical practitioner 57 or even a dedicated 'AMD case manager' 58 -to take on a coordination role to 'ensure adequate and timely access to services focusing on education delivery and smoking cessation, nutrition, physical activity, orientation and mobility, low-vision rehabilitation, driving support and cessation, medication and dietary supplementation adherence, appointment adherence, psychological counselling and socioeconomic issues'. 58 In line with previous literature, data from this study reveals that some optometrists may already be performing the role of such a coordinator (Quote #59, #65, #67), particularly when they involve a patients' family or friends (concepts 5B and 5D), or other people working in the healthcare system for support (concept 5C).…”

Section: Care Coordinationmentioning

confidence: 99%

“…Multiple proposals for a health professional to take on coordination role specific to AMD. 48,57,58 Informal translators may entail consequences for the quality of patient care and other legal or ethical implications. 62,63 Eye clinic liaison officers are able to provide patients with AMD with support and ensured continuity of care, 59 but there are often delays associated with receiving this care.…”

Section: Care Coordinationmentioning

confidence: 99%

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Effective health communication for age‐related macular degeneration: An exploratory qualitative study

Wang

Kalloniatis

2023

Ophthalmic Physiologic Optic

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PurposeAge‐related macular degeneration (AMD) is a major cause of vision loss globally. Patients with AMD may not always understand or retain the information about AMD communicated by their eyecare practitioner. This study aims to explore the characteristics of effective health communication for AMD, from both patients' and eyecare practitioners' perspectives. The purpose is to provide a foundation for understanding how health communication for AMD could potentially be improved in the future.MethodsA total of 10 focus groups involving 17 patients with AMD and 17 optometrists were conducted via web conferencing. Each session was audio‐recorded, transcribed and analysed using the Grounded Theory Methodology.ResultsThe five themes identified are as follows: (1) materials' quality, (2) materials' relevance, (3) contextualising for the individual, (4) contextualising for the disease and (5) support network. Participants expressed concern about the unrealistic yet common depiction of vision loss in AMD as a black patch overlying common visual scenes. They also preferred education materials tailored to a specific disease stage and the regular opportunity to ask or answer questions. Longer appointment durations and peer support (from family, friends or others with AMD) were also valued.ConclusionOptometrists are encouraged to focus on three over‐arching dimensions when counselling patients with AMD in routine clinical practice: (1) curating and using disease and stage‐specific, impactful education materials, (2) their chairside verbal communication techniques and (3) AMD‐specific opportunities for care coordination among patient family and friends, peers and other multidisciplinary members of the care support team.

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Patients' and health professionals' views on shared decision‐making in age‐related macular degeneration care: A qualitative study

Cited by 11 publications

References 29 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

Effective health communication for age‐related macular degeneration: An exploratory qualitative study

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