An exploratory study on support for caregivers of people with vision impairment in the UK.

PURPOSE: Many of the UK's 2.5 million individuals living with vision loss receive support from relatives or friends (so-called 'informal caregivers'). However, there is limited understanding of how caregivers of people with visual impairment (PVI) are, or feel, supported by UK healthcare/statutory services and charities. This exploratory study was conducted to explore caregivers' experiences and their suggestions for enhancing support. METHODS: Participants self-identifying as UK-based caregivers of PVI (N = 100) volunteered to undertake an online survey, distributed through charity partners. The survey was comprised of the Client Satisfaction Questionnaire-8 (CSQ-8, a validated, self-report measure of satisfaction with support services), Likert-type questions and two open-ended, free-text questions. Interview participants (N = 22) were then selected from survey respondents, and semi-structured interviews were conducted to focus on caregivers' ideas for improving support. The Framework Method was used for inductive analysis of the free-text question responses and interview data. RESULTS: The mean (SD) CSQ-8 score was 21.60 (7.2), with no significant differences by demographic, relationship or vision-related factors, likely limited by the small subgroup sizes. Qualitative data demonstrated the heterogeneity of participating caregivers' experiences, highlighting the importance of personalised support for caregivers. Many participants advocated enhancing informational, practical, emotional and social support for caregivers, and stressed the importance of accessible services and consistent points of contact to turn to for support and advice. CONCLUSIONS: Although our sample was arguably better connected to support services than the general caregiver population, this study identified concrete suggestions to improve practical, emotional and peer support for caregivers of PVI.

Setting targets for HIV/AIDS-What lessons can be learned from other disease control programmes?

In a Collection Review, Richard Hayes and colleagues discuss metrics for assessing progress in control of the HIV/AIDS epidemic in the context of prior disease control programmes.

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

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.

Patient acceptability of intravitreal complement inhibitors in geographic atrophy (GA): protocol for a UK-based cross-sectional study.

INTRODUCTION: Geographic atrophy (GA) is the advanced form of the non-neovascular ('dry') type of age-related macular degeneration (AMD). Previously untreatable, complement inhibitors delivered by regular intravitreal injections have recently been demonstrated to slow down the progression of GA lesions in phase 3 trials. One such treatment, Syfovre (pegcetacoplan), was approved by the US Food and Drug Administration in February 2023. These therapies slow down, but do not stop or reverse, the progression of GA; they may also increase the risk of developing the neovascular ('wet') type of AMD. In light of these developments, this study aims to quantify the acceptability of these new intravitreal injection treatments to patients with GA in the UK and explore factors that may influence the acceptability of these treatments. METHODS AND ANALYSIS: In this cross-sectional, non-interventional study, the primary objective is to determine the proportion of patients with GA that find regular intravitreal therapy acceptable for slowing the progression of GA. We will use a validated acceptability questionnaire in order to quantify the acceptability of new treatments among patients with GA. The correlation between acceptability and functional and structural biomarkers of GA will be established. We will also explore demographic, general health and ocular factors that may influence acceptability. 180 individuals with a diagnosis of GA will be recruited from 7 to 8 participating National Health Service trusts across the UK. Multiple regression analysis will be conducted to determine the simultaneous effects of multiple factors on patient acceptability. ETHICS AND DISSEMINATION: The study received ethical approval from the Health Research Authority on 14 March 2023 (IRAS Project ID: 324854). Findings will be disseminated through peer-reviewed publications and conference presentations to the medical retina community, as well as through dialogue with patients and macular disease charities.

Piloting a forced-choice task to elicit treatment preferences in geographic atrophy.

OBJECTIVE: Geographic Atrophy (GA) is the advanced form of the non-neovascular ('dry') type of age-related macular degeneration (AMD) and responsible for one-quarter of legal blindness in the UK. New therapies delivered by intravitreal injection are in late-stage development, and two such therapies (pegcetacoplan (Syfovre) and avacincaptad pegol (Izervay)) have now been approved for clinical use by the US Food and Drug Administration. These therapies slow down, but do not stop or reverse, progression of GA and they may also increase the risk of developing the neovascular ('wet') type of AMD. Within a larger study exploring the acceptability of these new treatments to people living with GA, we developed a forced-choice exercise to evaluate how participants weigh up benefits and drawbacks of different treatment regimens. This research note reports quantitative and qualitative findings from this exercise. RESULTS: Twenty-eight participants took part in this exercise. The exercise demonstrated that participants were generally, although not unanimously, in favour of less frequent treatment for GA that was slightly less efficacious in terms of preserving visual function but presented a lower risk of developing wet AMD. Even among a small sample, the exercise demonstrated the highly personal and idiosyncratic decision-making processes influencing participants' choices of preferred hypothetical GA treatment.

Towards a Therapy for Geographic Atrophy: A Patient's Experience.

Purpose: Geographic atrophy (GA) is the advanced form of the non-neovascular (dry) type of age-related macular degeneration. Presently, GA cannot be treated. However, new therapies administered by intravitreal injection are in late-stage development. These can slow down, but do not stop or reverse, GA progression. The acceptability of these emerging therapies to people with GA is currently unknown. The present case study explores the perspectives of a person living with GA who took part in the terminated Phase 3 clinical trial of Lampalizumab, a candidate intravitreal treatment for GA. We explored this patient's perspective on the retrospective acceptability of regular Lampalizumab injections, and the prospective acceptability of future intravitreal therapies for GA. Patients and Methods: A 78-year-old woman living in the UK was recruited as part of a mixed-methods pilot study and interviewed by telephone, regarding: her experience of the Lampalizumab trial injections; and her thoughts regarding emerging intravitreal therapies for GA. The Framework Method was used for initial inductive analysis of the interview transcript. Subsequently, deductive analysis was undertaken, informed by the Theoretical Framework of Acceptability (TFA). Results: For this participant, intravitreal injections in the Lampalizumab trial were acceptable, although streamlining processes within the clinic would have improved the patient experience. Regarding prospective acceptability of new intravitreal therapies, the participant considered a delay in progression of GA a valuable goal. Potential discomfort, anxiety and inconvenience associated with regular intravitreal injections would be acceptable in the context of preserving her vision for as long as possible. Conclusion: Analysis of one participant's experience demonstrates the value of exploring GA patients' unique views on the acceptability of new intravitreal treatments. Larger prospective studies will provide more insight that help to optimise treatment design and delivery, thereby maximising likelihood of adherence and persistence when these therapies eventually arrive in clinic.

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

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.

What support do caregivers of people with visual impairment receive and require? An exploratory study of UK healthcare and charity professionals' perspectives.

BACKGROUND: Previous research has established that some informal caregivers (relatives/friends) of people with visual impairment (PVI) may require support themselves. However, there is limited understanding of how healthcare services and sight charities in the UK currently support caregivers. This study was therefore conducted to explore what support, information, and advice healthcare and charity professionals (HCCPs) currently provide for caregivers, and which additional support HCCPs would recommend in order to benefit caregivers. METHODS: HCCPs filled out an online survey, distributed among UK-based professional bodies and charity partners. Of 104 individuals who consented to participate, 68 (65%) HCCPs completed the survey in September-November 2019. Participants responded to Likert-type questions about how they interact with and support caregivers of PVI. Thirty-eight (56%) participants provided responses to open-ended questions about improving support for caregivers; qualitative analysis was conducted using the Framework Method. RESULTS: The survey showed that caregiver support activities most commonly undertaken related to onward signposting (90% (95% CI: 82-97%) of participants), or providing information about low vision aids and adaptations (85% (95% CI: 77-94%)), compared to activities focused on broader caregiver wellbeing. In open-ended responses, HCCPs highlighted the difficulties caregivers face in navigating an under-resourced and complex system. They recommended improving coordination and accessibility of information, as well as provision of emotional support and tangible assistance such as respite care and financial support. CONCLUSIONS: The study suggests that HCCPs perceive significant unmet needs among caregivers of PVI, and would welcome further resources, information, and training to support caregivers.

What support is beneficial for caregivers of individuals with vision impairment?

Previous studies and reviews have documented the stress and challenges that may be associated with providing informal care for individuals with vision impairment (IVI). This scoping review was therefore conducted in order to synthesise published literature about forms of support which may benefit the informal caregivers of both adults and children with vision impairment (VI), and to identify research gaps in the support available for this population. A systematic literature search was carried out using CINAHL, Medline, PsycINFO and PsycARTICLES, followed by citation tracking. A total of 23 published studies met the eligibility criteria and were included in the review. The included studies focused on: exploring caregiver support needs (8/23); novel interventions supporting caregivers of IVI (10/23); evaluating usual care (2/23); and exploring how treatment for IVI directly impacts the caregiver (3/23). Overall, support for caregivers of IVI is a relatively new research topic, with no eligible studies identified before 1999. Twelve of the 23 studies (52%) focused on support for caregivers of adults with VI, while 11 (48%) focused on support for caregivers of children with VI. The studies illustrate that support groups may generally help to improve caregivers' knowledge and awareness of VI, although benefits for emotional wellbeing are more modest. Support interventions for parents of children with VI appear to reduce stress effectively; however, evidence regarding the value of interventions for caregivers of adults with vision impairment is less clear, partly due to small samples and a lack of standardised, comparable outcome measures. Caregivers often express a need for better information about the condition of the IVI, even when information is apparently available. Further research is required comparing the benefits of different support modalities for caregivers of people with VI over longer follow-up periods.

An overview of psychological and social factors in Charles Bonnet syndrome.

Charles Bonnet syndrome (CBS) is a condition where cognitively normal individuals with sight impairment experience simple and/or complex visual hallucinations. The exact pathogenesis of CBS is unknown; however, deafferentation is often recognised as a causal mechanism. Studies have provided insight into the multifaceted impact of CBS on wellbeing. Onset of CBS may cause distress among those believing visual hallucinations are indicative of a neurological condition. Hallucinatory content is often congruent with the emotional response. For example, hallucinations of a macabre nature typically result in a fearful response. Visual hallucinations may be highly disruptive, causing everyday tasks to become challenging. Clinical management relies on forewarning and pre-emptive questioning. Yet, knowledge and awareness of CBS is typically low. In this review, we provide a summary of the social and psychological implications of CBS and explore recent developments aimed at raising awareness and improving patient management.

Acceptability of intravitreal injections in geographic atrophy: protocol for a mixed-methods pilot study.

INTRODUCTION: Age-related macular degeneration (AMD) is a common cause of visual impairment, affecting central vision. Geographic atrophy (GA) is an advanced form of the non-neovascular (dry) type of AMD. Late-stage clinical trials suggest that intravitreal injections of novel therapeutics may slow down the rate of GA progression by up to 30% in 1 year, thus allowing people with GA to preserve central vision for a longer period. While intravitreal injections have become an established treatment modality for neovascular (wet) AMD, it is unknown whether patients with (more gradually progressing) GA would accept regular injections that slow down, but do not stop or reverse, vision loss. Therefore, this mixed-methods pilot study will aim to explore whether regular intravitreal injections will be acceptable as treatment for patients with GA, and the factors that may affect treatment acceptability. METHODS AND ANALYSIS: A mixed-methods survey has been designed in collaboration with a GA patient advisory group. The survey comprises of structured questionnaires, semi-structured interview questions regarding patients' perceptions of intravitreal injections and the burden of treatment, and a task eliciting preferences between different potential treatments. Due to COVID-19 restrictions, this study will be conducted remotely by telephone. Thirty individuals will be recruited from NHS Medical Retina clinics at Central Middlesex Hospital, London. Half of the participants will be naïve to intravitreal injections, while half will have previous experience of intravitreal injections for neovascular (wet) AMD. Qualitative data analysis will be conducted using the Framework Method of analysis to identify key themes from participants' accounts. ETHICS AND DISSEMINATION: The study received Health Research Authority approval on 23 March 2021 (IRAS Project ID: 287824). Findings will be disseminated through peer-reviewed publications and conference presentations to the medical retina community, as well as through dialogue with patients and macular disease charities.

How do different lighting conditions affect the vision and quality of life of people with glaucoma? A systematic review.

This article is a systematic review of evidence regarding the impact of different lighting conditions on the vision and quality of life (QoL) of people with primary open-angle glaucoma (POAG). A systematic literature search was carried out using CINAHL, MEDLINE, PsycARTICLES, PsycINFO, Embase, and Ovid Nursing Database for studies: published up to April 2019; including people diagnosed with POAG; and assessing visual function or QoL in response to changing lighting/luminance levels or glare. Two researchers independently screened studies for eligibility. Data were extracted from eligible studies regarding study design, participant characteristics, outcomes, and results. Quality of included studies was critically appraised. Of 8437 studies, 56 eligible studies were included. Studies investigated the effects of lighting on the following domains among people with POAG: QoL (18/56), psychophysical measures (16/56), functional vision (10/56), activities of daily living (10/56), and qualitative findings (2/56). POAG negatively affects low-luminance contrast sensitivity, glare symptoms, and dark adaptation time and extent. In vision-related QoL questionnaires, people with POAG report problems with lighting, glare, and dark adaptation more frequently than any other domain. These problems worsen with progressing visual field loss. Early-stage POAG patients experience significantly more difficulties in low-luminance or changing lighting conditions than age-matched controls (AMCs), challenging perceptions of early-stage POAG as asymptomatic. However, performance-based studies seldom show significant differences between POAG participants and AMCs on tasks simulating daily activities under non-optimal lighting conditions. Further research with larger samples is required to optimise ambient and task-oriented lighting that can support patients' adaptation to POAG.

Evaluating Whether Sight Is the Most Valued Sense.

IMPORTANCE: Sight is often considered to be the sense most valued by the general public, but there are limited empirical data to support this. This study provides empirical evidence for frequent assertions made by practitioners, researchers, and funding agencies that sight is the most valued sense. OBJECTIVE: To determine which senses are rated most valuable by the general public and quantify attitudes toward sight and hearing loss in particular. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional web-based survey was conducted from March to April 2016 through a market research platform and captured a heterogeneous sample of 250 UK adults ages 22 to 80 years recruited in March 2016. The data were analyzed from October to December 2018. MAIN OUTCOMES AND MEASURES: Participants were first asked to rank the 5 traditional senses (sight, hearing, touch, smell, and taste) plus 3 other senses (balance, temperature, and pain) in order of most valuable (8) to least valuable (1). Next, the fear of losing sight and hearing was investigated using a time tradeoff exercise. Participants chose between 10 years without sight/hearing vs varying amounts of perfect health (from 0-10 years). RESULTS: Of 250 participants, 141 (56.4%) were women and the mean (SD) age was 49.5 (14.6) years. Two hundred twenty participants (88%) ranked sight as their most valuable sense (mean [SD] rating, 7.8 [0.9]; 95% CI, 7.6-7.9). Hearing was ranked second (mean [SD] rating, 6.2 [1.3]; 95% CI 6.1-6.4) and balance third (mean [SD] rating, 4.9 [1.7]; 95% CI, 4.7-5.1). All 3 were ranked above the traditional senses of touch, taste, and smell (F7 = 928.4; P < .001). The time tradeoff exercise indicated that, on average, participants preferred 4.6 years (95% CI, 4.2-5.0) of perfect health over 10 years without sight and 6.8 years (95% CI, 6.5-7.2) of perfect health over 10 years without hearing (mean difference between sight and hearing, 2.2 years; P < .001). CONCLUSIONS AND RELEVANCE: In a cross-sectional survey of UK adults from the general public, sight was the most valued sense, followed by hearing. These results suggest that people would on average choose 4.6 years of perfect health over 10 years of life with complete sight loss, although how this generalizes to other parts of the world is unknown.

Human Rights in the Fourth Decade of the HIV/AIDS Response: An Inspiring Legacy and Urgent Imperative.

More than 35 years since the HIV/AIDS pandemic began, HIV continues to cause almost two million new infections each year, and the "end of AIDS" by 2030 remains elusive.1 Violations of human rights continue to fuel high rates of new infections among key populations and a generalized epidemic in much of sub-Saharan Africa. Meanwhile, as political shifts worldwide threaten not only HIV funding but also progress toward the globalization of human rights, civil society mobilization and advocacy founded firmly on human rights principles have a more vital role to play than ever. Encouragingly, there are numerous examples of successful integration of human rights-based approaches into HIV prevention and treatment initiatives, and evidence increasingly demonstrates that norms enshrining the respect, protection, and fulfillment of human rights can translate into improved public health.2 This essay will succinctly trace the historic emergence of human rights as an issue at the heart of the HIV/AIDS response; it will then provide examples of progress and setbacks in recent years and consider the potential for rights promotion to address the structural drivers of HIV. Finally, it will consider how the primacy of human rights in HIV/AIDS has affected other fields of global health and will highlight the continuing imperative to work with civil society to protect and promote human rights to reduce the burden of HIV/AIDS.