Feelings, preoperative anxiety, and need for information in patients undergoing intravitreal injections.

PURPOSE: To assess feelings, preoperative anxiety, and need for information in patients undergoing intravitreal injections (IVI). METHODS: An observational cross-sectional study was conducted in our tertiary university care center between December 2017 and December 2018. Consecutive patients undergoing IVI were included. A paper survey was completed before and after IVI to assess patient experience. Preoperative anxiety and need for information were assessed using the Amsterdam Preoperative Anxiety Information Scale (APAIS) score. RESULTS: Hundred patients with a median age of 76.5 years (42-95, SD = 10.1) were included. Median best-corrected visual acuity (BCVA) in both eyes was 0.4 logMAR. Main IVI indications were wet age-related macular degeneration (n = 58), diabetic macular edema (n = 19), and venous occlusion (n = 16). The IVI most unpleasant steps were as follows: using an eyelid retractor, needle entry, changing of physician from one IVI to another, the pre-IVI waiting time, and the high number of IVI required for disease control. Preoperative anxiety (APAIS score ≥ 11) was correlated in the multivariate analysis with the need for information (p = 0.004), changing of ophthalmologist between different IVI sessions (p = 0.006), and pain expected before the IVI (p = 0.010). The need for information (APAIS score ≥ 5) was only associated with the preoperative anxiety in the multivariate analysis (p = 0.001). CONCLUSION: Preoperative anxiety and need for information are common in patients undergoing IVI even after many IVI. Being injected by different practitioners was strongly correlated with preoperative anxiety and should be avoided as much as possible. Better educational and information programs are needed.

Contrast sensitivity and binocular reading speed best correlating with near distance vision-related quality of life in bilateral nAMD.

PURPOSE: Bilateral neovascular age-related macular degeneration (nAMD) causes difficulties in daily life, especially with regard to near-vision tasks, despite well preserved Early Treatment of Diabetic Retinopathy Study (ETDRS) best corrected visual acuity (BCVA) at distance. Therefore, alternative visual function measures were evaluated in terms of their correlation with vision-related quality of life scores (QoL). METHODS: A prospective cross-sectional pilot study including patients with a diagnosis of bilateral nAMD having lesions within the central 1 mm ETDRS grid subfield. Standardised testing included a vision-related QoL assessment (NEI-VFQ25), best corrected visual acuity (BCVA), low luminance visual acuity (LLVA), Radner maximum reading speed and Pelli-Robson contrast sensitivity (CS). RESULTS: N = 54. The mean better eye (range) BCVA was 79 (55-96) letters, median (range) LLVA 79.5 (58-97) letters and median (range) CS 1.35 (0-1.65) log units. Mean binocular maximum reading speed was 117.33 ± 28.42 wpm. The best correlations with the near subscale score were found for CS followed by binocular maximum reading speed (r = 0.59, p = 0.0001; r = 0.36, p = 0.008, respectively). A weaker correlation was observed for the BCVA in the better eye (r = 0.33, p = 0.02). The correlation between the NEI-VFQ25 distance subscale and BCVA was weaker (r = 0.37, p = 0.005) than the correlations with CS (r = 0.67, p = 0.0001) and LLVA (r = 0.40, p = 0.003). CONCLUSIONS: For patients with a bilateral centre-involving nAMD, the best correlation with near QoL was the better eye CS followed by maximum binocular reading speed. These measures could be valuable in quantifying vision-related QoL outcomes in AMD clinical trials.

The effect of non-neovascular age-related macular degeneration on face recognition performance.

PURPOSE: There is a well-established research base surrounding face recognition in patients with age-related macular degeneration (AMD). However, much of this existing research does not differentiate between results obtained for 'wet' AMD and 'dry' AMD. Here, we test the hypothesis that face recognition performance is worse in patients with dry AMD compared with visually healthy peers. METHODS: Patients (>60 years of age, logMAR binocular visual acuity 0.7 or better) with dry AMD of varying severity and visually healthy age-related peers (controls) completed a modified version of the Cambridge Face Memory Test (CFMT). Percentage of correctly identified faces was used as an outcome measure for performance for each participant. A 90% normative reference limit was generated from the distribution of CFMT scores recorded in the visually healthy controls. Scores for AMD participants were then specifically compared to this limit, and comparisons between average scores in the AMD severity groups were investigated. RESULTS: Thirty patients (median [interquartile range] age of 76 [70, 79] years) and 34 controls (median age of 70 [64, 75] years) were examined. Four, seventeen and nine patients were classified as having early, intermediate and late AMD (geographic atrophy) respectively. Five (17%) patients recorded a face recognition performance worse than the 90% limit (Fisher's exact test, p = 0.46) set by controls; four of these had geographic atrophy. Patients with geographic atrophy identified fewer faces on average (±SD) (61% ± 22%) than those with early and intermediate AMD (75 ± 11%) and controls (74% ± 11%). CONCLUSIONS: People with dry AMD may not suffer from problems with face recognition until the disease is in its later stages; those with late AMD (geographic atrophy) are likely to have difficulty recognising faces. The results from this study should influence the management and expectations of patients with dry AMD in both community practice and hospital clinics.

Influence of new societal factors on neovascular age-related macular degeneration outcomes.

BACKGROUND: To assess the impact of unstudied societal factors for neovascular age-related macular degeneration (nAMD) on functional outcomes after anti-VEGFs. METHODS: Charts of 94 nAMD patients treated in the Monticelli-Paradis Centre, Marseille, France, were reviewed. Phone interviews were conducted to assess societal factors, including transportation, living status, daily reading and social security scheme (SSS). Primary outcome was the impact of family support and disease burden on functional improvement in nAMD. RESULTS: Between baseline and month 24 (M24), 42.4% of the variability in best-corrected visual acuity (BCVA) was explained by the cumulative effect of the following societal factors: intermittent out-patient follow-up, marital status, daily reading, transportation type, commuting time. No isolated societal factor significantly correlated with ETDRS BCVA severity at M24. A trend to correlation was observed between the EDTRS score at M24 and the SSS (P = 0.076), economic burden (P = 0.075), time between diagnosis and treatment initiation (P = 0.070). A significant correlation was found for the disease burdensome on the patient (P = 0.034) and low vision rehabilitation (P = 0.014). CONCLUSIONS: Societal factors could influence functional outcomes in nAMD patients treated with anti-VEGFs. They could contribute to the healing process or sustain disease progression.

Vision-related quality of life: 12-month aflibercept treatment in patients with treatment-resistant neovascular age-related macular degeneration.

PURPOSE: To assess changes in vision-related quality of life (VR-QoL) among patients with treatment-resistant neovascular age-related macular degeneration (nAMD) following intravitreal aflibercept treatment over 48 weeks. METHODS: We conducted a prospective study in which 49 patients with nAMD resistant to anti-vascular endothelial growth factor therapy were switched to intravitreal aflibercept. Patients were treated with three loading doses every 4 weeks followed by injections every 8 weeks, for a total of 48 weeks. Ophthalmic examinations performed at each visit included best-corrected visual acuity (BCVA) and central macular thickness (CMT) measurement. The National Eye Institute Visual Functioning Questionnaire 25 (NEI VFQ-25) was used to assess VR-QoL at baseline and weeks 24 and 48. Changes in NEI VFQ-25 composite and subscale scores were analyzed using paired t tests. The relationship between the change in VR-QoL and changes in BCVA and CMT, and the impact of the better-seeing eye (BSE, defined as the eye reading the greater number of letters at baseline) vs. the worse-seeing eye (WSE, the fellow eye to the BSE) were assessed. RESULTS: Mean NEI VFQ-25 composite scores improved significantly at weeks 24 and 48 compared to baseline (4.5 ± 9.2 and 4.4 ± 11.8, respectively, all p < 0.01). Among subscales, general vision and near and distance activities showed significant improvements at weeks 24 and 48 (all p < 0.05). Improvement in the NEI VFQ-25 composite score was significantly associated with increased BCVA at week 48 (ß coefficient = 0.43, p = 0.029), but not with change in CMT (ß coefficient = -0.007, p = 0.631). There was no association between VR-QoL changes and BSE or WSE. CONCLUSION: Despite previous anti-VEGF treatment in this cohort, overall VR-QoL improved following aflibercept therapy over 48 weeks. This improvement was related to improved vision in treatment eyes regardless of whether they were the BSE or WSE.

Tracing the natural course of visual acuity and quality of life in neovascular age-related macular degeneration: a systematic review and quality of life study.

BACKGROUND: Describing the natural course of neovascular age-related macular degeneration (nAMD) is essential in discussing prognosis and treatment options with patients and to support cost-effectiveness studies. METHODS: First, we performed a literature search in PubMed, Embase, and Cochrane. We included randomized clinical trials and prospective observational studies reporting visual acuity (VA) in non-treated patients, 24 studies in total. We integrated VA data using best fit on Lineweaver-Burke plots and modelled with non-linear regression using reciprocal terms. Second, we performed a quality-of-life (QoL) study in nAMD patients. We measured VA with Radner reading charts and QoL with the Health Utilities Index issue 3 (HUI-3) questionnaire in 184 participants. We studied the relation VA-QoL with linear regression. Third, with Monte Carlo simulation, we integrated the VA model from the literature review and the relation VA-QoL from the QoL study. RESULTS: Visual acuity was 0.4 and 0.07 after 5 years in the better-seeing, and worse-seeing eye, respectively. After 4.3 years, VA was <0.5 in the better-seeing eye; <0.3 after 7 years; 0.05 after 17 years. QoL score decreased from 0.6 to 0.45 after 10 years. CONCLUSIONS: The natural course of nAMD in both eyes needs to be considered when informing patients. Visual acuity in the best eye decreases to below 0.5 in 4.3 years. This affects QoL significantly.

Distinguishing between Better and Worse Visual Acuity by Studying the Correlation with Quality of Life in Neovascular Age-Related Macular Degeneration.

PURPOSE: To determine whether there is a level of visual acuity (VA) in neovascular age-related macular degeneration (nAMD) above which the correlation of VA with disease-related quality of life (QoL) is significantly greater than below this level. DESIGN: An observational, cross-sectional study. PARTICIPANTS: A total of 184 patients with nAMD aged at least 50 years were included in the study. METHODS: In face-to-face interviews, we assessed QoL with the Macular Disease-Dependent Quality of Life (MacDQoL) questionnaire. We measured VA with standardized Radner reading charts. We used regression splines analysis with a single hinge point, with the MacDQoL score as the dependent variable and VA as the independent variable. The x-coordinate (VA) of the hinge point was varied and tested with each iteration. A second method of regression splines analysis was also performed, without a preset hinge point. MAIN OUTCOME MEASURES: The primary outcome measure is the cutoff point at or below which VA is associated with significantly less change in QoL than above this cutoff. The linear coefficients below and above the cutoff are defined as change in MacDQoL score per logarithm of the minimum angle of resolution (logMAR) unit of change in VA. RESULTS: With Snellen equivalent VA 0.05 (1.3 logMAR) or worse, the linear coefficient was 0.15. With VA better than 0.05, the linear coefficient was 2.40 (P value of the difference: 0.009). CONCLUSIONS: When VA is above 0.05, there is a stronger and significant relation between VA and QoL. At or below this level, the relation between VA and QoL approaches zero. With better VA, a difference in VA implies a significant difference in QoL. With poorer VA, a difference in VA is unlikely to imply a difference in QoL. Therefore, in treating nAMD, the aim should be to keep Snellen VA above 0.05 to have an impact on QoL. If it is certain that the best-corrected VA below 0.05 is permanent, these findings imply there may be less, if any, benefit to continue further treatment. This is to be evaluated on a case-by-case basis.

Patient Preferences in the Treatment of Neovascular Age-Related Macular Degeneration: A Discrete Choice Experiment.

PURPOSE: The objective of our study was to investigate preferences of patients with neovascular age-related macular degeneration (nAMD) for different anti-vascular endothelial growth factor (VEGF) treatment schemes. DESIGN: We used a discrete choice experiment (DCE) design as part of a telephone interview. PARTICIPANTS: Patients with nAMD aged at least 50 years were included in the study. METHODS: Telephone interviews were done between November 2012 and October 2013. MAIN OUTCOME MEASURES: In our DCE survey, we measured patient preferences toward specific levels of attributes that describe different options in the everyday intravitreal injection treatment setting: (1) treatment scheme; (2) change of visual acuity (VA); and (3) time the patient needs for each visit to the eye specialist. RESULTS: A total of 284 patients with nAMD with a mean age of 77.4±7.1 years (women: 59.9%) completed the DCE interviews. Of them, 22.9% had poor VA at study inclusion, 54.9% had moderate VA, and 14.1% had good VA; VA was not available for 8.1% of the patients. Generally, patients preferred the attribute levels "improvement in VA" and "short time per specialist visit." The results for the attribute "treatment scheme" were inconclusive because none of the attribute levels (injections every 4 weeks, every 8 weeks, and pro re nata) were associated with statistically significant utility differences. This also mirrors the relative importance of the different attributes in patient decisions: "Change of VA" influenced decision making for a treatment option in 73.6% of cases; "waiting, treatment, and travel time" influenced decision making in 21.0% of cases; and "treatment scheme" influenced decision making for a treatment option in 5.4% of cases. To obtain improved VA instead of a worsening VA, patients in our study stated to be willing to accept a very long time needed per physician visit of 21.2 hours (8.5 hours for improved rather than stable VA and 12.7 hours for stable VA rather than worsening VA). CONCLUSIONS: To prevent deterioration of VA, patients with nAMD seem to be willing to accept a high treatment burden with regular intravitreal injections at short intervals and long periods of waiting, treatment, and traveling for their consultations.

Psychological impact of anti-VEGF treatments for wet macular degeneration-a review.

PURPOSE: To review the current literature on the psychological impact of anti-VEGF treatments for wet age-related macular degeneration (wAMD), in terms of patients' experiences of receiving these treatments, and the impact of these treatments for patients' mental health and quality of life. METHODS: We critically analyzed current literature evaluating psychological impact of anti-VEGF treatments for wAMD. Primary searches of PubMed, Science Direct, and Web of Science were conducted in July and August of 2015. We reviewed all papers on the topic published until August 5, 2015. RESULTS: Our literature search found 14 papers addressing the psychological impact of anti-VEGF treatments for wAMD. Results highlighted potential anxieties and experiences of pain caused by receiving regular intravitreal injections. A positive visual outcome of anti-VEGF therapy is associated with positive vision-related QOL outcomes, although such association seems to be dependent on improvements on visual acuity. In the literature reviewed, patients receiving anti-VEGF treatments showed a prevalence rate of depression between 20 and 26 %. CONCLUSIONS: Although anti-VEGF treatments can cause some anxiety and being experienced as a stressful event, especially in the beginning of the treatment, preliminary findings suggest a potential benefit for long-term vision-related quality of life. Further longitudinal and qualitative research should bring more evidence on the positive and negative effects of these treatments on patients' long-term mental health.

Quality of Life in Patients Suffering from Active Exudative Age-Related Macular Degeneration: The EQUADE Study.

PURPOSE: Age-related macular degeneration (AMD) is the main cause of visual loss in the elderly population. With the use of anti-vascular endothelial growth factor, the visual outcomes of exudative AMD patients have been improved. This study was aimed at assessing the quality of life (QoL) of exudative AMD patients treated with ranibizumab and at determining its drivers in a real-life setting. METHODS: We performed a national, cross-sectional, observational survey based on questionnaires sent to members of French associations relative to AMD between December 2012 and March 2013. Patients suffering from exudative AMD with at least one intravitreal injection of ranibizumab within the last 6 months were included. Demographics, AMD characteristics, visual acuity (VA) and past and ongoing treatments were collected. The 25-item National Eye Institute Visual Function Questionnaire (NEI-VFQ-25) was self-administered. A multivariate model was used to identify QoL drivers. RESULTS: 416 questionnaires fulfilled the complete criteria for both QoL and cost analyses. The mean age of exudative AMD patients was 78.0 years and bilateral involvement was reported in 60.4%. The overall mean QoL score was 53.4. Mental health, driving and role difficulties were the most widely affected domains. After bivariate analyses, long-term illness status, worse VA and higher number of unpaid aids were associated with worse QoL, with odds ratios of 2.4, 5.2 and 11.6, respectively. The mean cost per year and per patient was 1,741 EUR. The main components of costs were aids and services and the purchase of visual equipment. CONCLUSIONS: The main predictors of QoL in exudative AMD patients treated with ranibizumab are VA outcomes, home healthcare and social services provided to the patients.

[Disease perception in patients with wet age-related macular degeneration]. / Krankheitswahrnehmung bei Patienten mit einer feuchten altersabhängigen Makuladegeneration.

BACKGROUND: The disease perception of the patients treated with intravitreal injections of anti-vascular endothelial growth factor due to wet age-related macular degeneration was investigated. PATIENTS AND METHODS: 177 questionnaires focusing on the development of the perceived visual acuity and the quality of life were evaluated. The subgroup 1 included 125 patients (70.6%) with a unilateral wet age-related macular degeneration. The subgroup 2 included 52 patients (29.4%) with a bilateral wet age-related macular degeneration. RESULTS: Patients would almost always recommend the therapy to a friend (97.2%). The critical remarks are related to the uncertain course of the disease (22.8%) and the uncertain duration of the treatment (19%). There was a discrepancy between the measured visual outcome and the perceived one in 5.6% in the subgroup 1, and in 38.5% in the subgroup 2. This difference was statistically significant (chi-square test with p<0.01). CONCLUSIONS: The treatment of wet age-related macular degeneration with intravitreal injections of anti-vascular endothelial growth factor is judged positively. Binocular affected patients have a higher disease perception and therefore a poorer self-assessment of their visual acuity and their quality of life compared with monocular affected patients.

The impact of anti-vascular endothelial growth factor treatment on quality of life in neovascular age-related macular degeneration.

PURPOSE: To assess the impact of anti-vascular endothelial growth factor (VEGF) treatment in routine medical practice on vision-related quality of life (VRQoL) in neovascular age-related macular degeneration (AMD). DESIGN: Prospective case series. PARTICIPANTS: A total of 169 patients with neovascular AMD undergoing anti-VEGF treatment. METHODS: The VRQoL interviews at baseline (n = 169), 6 months (n = 138), and 12 months (n = 120), routine anti-VEGF treatment with up to monthly follow-ups, and re-treatment as indicated. The Impact of Vision Impairment (IVI) questionnaire was subjected to Rasch analysis to assess its measurement performance and generate interval-level estimates of VRQoL at all time points, anchoring the instrument to its baseline measurement characteristics. Factors associated with a change in reported VRQoL were assessed using generalized linear regression models. MAIN OUTCOME MEASURES: The VRQoL as measured by the IVI using its 3 subscales: Accessing Information, Mobility, and Emotional Well-being. FINDINGS: The mean age was 70 years (±6 years standard deviation [SD]); 56% were female. Visual acuity (VA) improved by a mean of 8 letters (±17 SD), and mean retinal thickness decreased by 87 (±89.7) µm with an average of 6.5 (±2.6) injections over 12 months. Those who lost >2 lines (n = 13, 11%) reported worse VRQoL at 12 months on the Accessing Information and Mobility subscales (P = 0.007 and P = 0.050, respectively). Conversely, those who gained >2 lines (n = 29, 24%) reported better VRQoL on the Accessing Information and Emotional Well-being subscales (P = 0.009 and P = 0.008, respectively). Patients who did not experience a change in VA reported no change in their VRQoL. In multivariate analyses, only a change in VA but not whether the better or worse eye was treated predicted a change in VRQoL on the Accessing Information (P = 0.004) and the Emotional Well-being (P = 0.008) subscales. CONCLUSIONS: We confirmed that anti-VEGF treatment for neovascular AMD improves patients' VRQoL in those who gain vision and maintains VRQoL in those who maintain VA in their treated eye, irrespective of whether the worse or better eye is treated. Against this background, the best possible outcomes should be aimed for even if the worse eye is treated because a loss of VA in the worse eye will adversely affect patients' VRQoL.

Divergence in the lived experience of people with macular degeneration.

PURPOSE: The aim of this study was to understand people's experience with age-related macular degeneration (AMD) in light of new treatment successes. METHODS: An interpretive qualitative methodology was used to facilitate understanding of the experience of people with AMD. Rich in-depth data were collected using focus groups and individual interviews. Thematic analysis of the data occurred through the processes of line-by-line coding, aggregation, and theme development using the NVivo 10 software. RESULTS: A total of 4 focus groups and 16 individual interviews were conducted with 34 people (median age = 81 years; range = 56 to 102 years; 19 females) with AMD. Four major themes arose from the narratives of the participants: cautious optimism, enduring, adaptation, and profound loss. Cautious optimism resonated for participants who had received successful treatment and stabilization of AMD. Enduring emerged as participants with exudative AMD described an ongoing need for invasive and frequent treatments (anti-vascular endothelial growth factor injections) that maintained their vision. Adaptation was evident in the narratives of all participants and was directly related to the physical and psychological limitations that were a consequence of visual disability. Profound loss encompassed both physical and emotional aspects of deteriorating vision and was most evident in patients for whom treatment had failed or had not been considered appropriate for their disease. CONCLUSIONS: The findings of this study shed new light on the influence of underlying pathology, disease trajectory, and success of new treatments on quality of life of people living with AMD. Optimism toward maintaining vision in the presence of exudative AMD was described by participants, moderated by ongoing caution and a need for endurance of frequent and often problematic intravitreal treatments. These findings add a deeper understanding of this complex and life-changing experience.

Health-related quality of life in patients with neovascular age-related macular degeneration: a prospective cohort study.

BACKGROUND: Neovascular age-related macular degeneration (nAMD) is a common cause of visual impairment and blindness in the elderly with globally increasing prevalence. Vascular endothelial growth factor inhibitor (anti-VEGF) treatment has improved visual prognosis of nAMD, but continuous treatment may cause anxiety and stress, although increase in visual acuity (VA) may also have positive effects on patients' quality of life. The health care burden due to frequent treatment and monitoring is apparent, but the effect of anti-VEGF treatment on patients' quality of life is not fully understood. We evaluated the overall impact of nAMD and its treatment on newly diagnosed patients' health-related quality of life (HRQoL) in real-world setting. METHODS: The present prospective cohort study included newly diagnosed nAMD patients treated with anti-VEGF injections at Oulu University Hospital during 2019-2020. Data included parameters from comprehensive ophthalmic examination and fundus imaging, age at diagnosis, sex, comorbidities, visual acuity, and frequency of anti-VEGF injections. HRQoL was assessed by 15D questionnaire at diagnosis, 6 months, and 12 months. RESULTS: 95 nAMD patients were included. They were 78 ± 8 years old, 56 (59%) were female, and 74 (78%) had more than one comorbidity. The patients received 8 ± 3 anti-VEGF-injections. Visual acuity (VA) improved from 56 ± 18 to 61 ± 24 Early treatment diabetic retinopathy study (ETDRS) letters in 12 months. VA improved > 5 ETDRS letters in 45 (47%), remained stable in 30 (32%) and decreased > 5 letters in 17 (18%) eyes. The mean total 15D score reflecting overall HRQoL decreased from 0.850 ± 0.104 to 0.834 ± 0.103 in 12 months. Decreased HRQoL was associated with baseline best-corrected VA (BCVA) ≥ 70 ETDRS letters (p = 0.023) and more than one comorbidity (p = 0.034). HRQoL regarding visual function increased from 0.765 ± 0.194 to 0.789 ± 0.184 during the 12-month follow-up. CONCLUSIONS: In real world setting, HRQoL regarding visual function improved in anti-VEGF-treated nAMD patients during the first 12 months after the diagnosis and treatment initiation. Good baseline VA or several comorbidities were associated with decreased overall HRQoL during the follow-up. Despite the effectiveness of anti-VEGF treatment on visual function, several other aspects affecting elderly patients' everyday life should be considered when nAMD treatment is implemented.

Patient and public preferences for health states associated with AMD.

PURPOSE: Health utility values suitable for calculating quality-adjusted life-years are increasingly used to assess the cost-effectiveness of treatments for age-related macular degeneration (AMD). In the United States, health utilities are usually derived from the patients' own valuation or modeled using visual acuity as a surrogate outcome. In the United Kingdom and throughout Europe, health utilities are derived from public valuations. Our aim was to test if utility values for health states associated with AMD elicited directly from patients were different from those calculated from public tariffs for health-related quality of life (HRQoL) questionnaires. METHODS: Generic preference-based HRQoL questionnaires (EQ-5D and SF-6D) and the time trade-off (TTO) and visual analog scale (VAS) valuation techniques were administered to a sample of UK patients with AMD (N = 60). Health utilities were calculated using standard general population tariffs for the patient EQ-5D and SF-6D health states and directly from patient TTO and VAS scores. RESULTS: Mean utilities derived from the public tariffs were significantly higher than from patients' valuation (mean [±SD], 0.613 (±0.275) for the EQ-5D and 0.628 (±0.114) for the SF-6D compared with 0.481 [±0.411] for the TTO and 56.7 [±21.8] for the VAS score; p < 0.001). The EQ-5D was not significantly different from the SF-6D (p > 0.6). Visual acuity in the better seeing eye was not associated with any utility measure (all r < 0.08; p > 0.2). CONCLUSIONS: Patient and public preferences for health states associated with AMD are different, with patients valuing their health state more severely than the public tariffs of commonly used HRQoL questionnaires. Visual acuity did not predict health utility using any measure, and therefore, care should be taken when using visual acuity as a surrogate measure for utility in health economic analyses.

[Coping with wet age-related macular degeneration--a study from Switzerland]. / Feuchte Makuladegeneration: Verarbeitung und Bewältigung--eine Studie aus der Schweiz.

BACKGROUND: Age-related macular degeneration (AMD) affects the quality of life of about 40,000 patients in Switzerland. The treatment of wet AMD with intravitreal injected anti-vascular endothelial growth factor (VEGF) can be a heavy burden for many patients. The aim of this study was to understand the quality of life of the patients and to seek ways to improve the treatment compliance. METHODS: Half-structured telephone interviews with 28 patients between 56 and 94 years of age were transcribed and analysed. In 21 patients, both eyes were concerned with AMD. RESULTS: The quality of life of patients with AMD is reduced. Many activities of daily living are hindered. Dependence on others increases. Communication of the diagnosis is perceived as a shock. Most interviewees wish for more information about their specific situation. Auxiliary means and counselling possibilities are hardly known. CONCLUSION: Wet AMD impacts on the quality of life of the patient. Treatment should therefore not be limited to the medical treatment of the ill eye. Triage to rehabilitation and counselling services should be included as important duties of the medical practitioners.

Rasch analysis reveals problems with multiplicative scoring in the macular disease quality of life questionnaire.

PURPOSE: To evaluate validity and psychometric characteristics of the Macular Disease Quality of Life questionnaire (MacDQoL), a multiplicative rating scale designed to measure vision-related quality of life (VRQoL) in macular diseases and age-related macular degeneration (AMD). DESIGN: Cross-sectional study. PARTICIPANTS: We included 108 patients with neovascular AMD at baseline before ranibizumab treatment. METHODS: The psychometric properties of the MacDQoL were assessed using Rasch analysis, exploring key indices such as response category functioning, instrument unidimensionality, discriminant ability, and targeting of item difficulty to patient ability. MAIN OUTCOME MEASURES: Measurement characteristics of the MacDQoL. RESULTS: In the MacDQoL's native form, the majority of response categories were underutilized and thresholds disordered. This could not be remedied without eliminating the importance ratings owing to the ambiguous nature of the response categories. Scaling problems were resolved by using the impairment rating scale only and collapsing response categories to 4. However, the MacDQoL was multidimensional, necessitating the omission of a number of items and splitting it into an activity limitation and mobility and a socioemotional well-being scale. This improved the psychometric parameters of the revised MacDQoL, although no correlation with clinical measures such as visual acuity was found. CONCLUSIONS: The multiplicative rating scale of the MacDQoL is flawed and does not provide scientific measurement of VRQoL. Measurement can be restored with a series of revisions to the instrument. This study reinforces the importance of considering rating scale design when choosing patient reported outcomes instruments for healthcare research.

Emotional and physical experiences of people with neovascular age-related macular degeneration during the injection process in Germany: a qualitative study.

OBJECTIVES: In order to better understand the continued barriers to the provision of vascular endothelial inhibitor therapy, this study aims to investigate patients' experiences with neovascular age-related macular degeneration (nvAMD) in Germany during the injection process and how they deal with it. DESIGN AND PARTICIPANTS: This analysis is part of the qualitative arm of a wider mixed-methods study. We recruited participants all over Germany via ophthalmologists, eye clinics, general practitioners, care bases and support groups between June 2018 and December 2020 and selected a subsample of study participants with nvAMD who were either undergoing or had previously undergone vascular endothelial growth factor inhibitor therapy. We conducted narrative, semistructured, face-to-face interviews at the participants' homes, which were audio-recorded. The interviews were thematically analysed. RESULTS: Twenty-two participants were included in this analysis. Experiencing neovascular macular degeneration was dominated by the injection experience. Study participants perceived the treatment with vascular endothelial inhibitor injections as uncomfortable, and they described undergoing varying levels of anxiety during the whole injection process. After some years of receiving multiple injections, the pain and not experiencing any positive effects made participants with significant vision loss want to discontinue therapy. Furthermore, they narrated negative injection experiences in association with their interactions with medical staff and doctors. CONCLUSION: Although time in the medical setting is limited, efficient and good doctor-patient relationships seem crucial for satisfying care experiences. A respectful and humane relationship may be one key to achieving treatment adherence.

Prevalence and risk factors for depressive symptoms in patients with neovascular age-related macular degeneration who present for anti-VEGF therapy.

PURPOSE: To examine the prevalence and risk factors for depressive symptoms in patients with neovascular age-related macular degeneration (nAMD) presenting for anti-vascular endothelial growth factor (anti-VEGF) therapy. METHODS: In a clinic-based cohort of 547 patients with nAMD who presented for treatment, the Centre of Epidemiological Studies Depression 10-point scale (CES-D-10) and Mental Health Index (MHI) component of the 36-item Short Form Survey were administered to assess for the presence of depressive symptoms. Logistic regression analyses were used to calculate odds ratios and 95% confidence intervals for factors associated with an increased likelihood of depressive symptoms. RESULTS: The prevalence of depressive symptoms was 42.04% and 31.78% as per the CES-D-10 and MHI scales, respectively. Poor self-rated health (SRH) is associated with increased odds of depressive symptoms [multivariable-adjusted OR: 3.00 (95% CI 1.90-4.73) for CES-D-10; OR: 2.67 (95% CI 1.67-4.28) for MHI]. Impaired activities of daily living (ADLs) [multivariable-adjusted OR: 2.62 (95% CI 1.56-4.38) for CES-D-10; OR: 3.59 (95% CI 2.10-6.15) for MHI] and a visual function score within the two lowest quartiles were also associated with increased odds of depressive symptoms using both scales. CONCLUSION: A high prevalence of depressive symptoms was observed among nAMD patients presenting for treatment. Poorer SRH, ADL impairment and reduced visual function were associated with increased odds of depressive symptoms.

Vision-related quality of life in Japanese patients with wet age-related macular degeneration treated with intravitreal aflibercept in a real-world setting.

PURPOSE: To evaluate vision-related quality of life (QoL) in wet age-related macular degeneration (wAMD) patients receiving intravitreal aflibercept (IVT-AFL). STUDY DESIGN: Prospective, observational Japanese postmarketing surveillance study. METHODS: All decisions were made by the treating physician. QoL was assessed using the 25-item National Eye Institute-Visual Functioning Questionnaire (NEI-VFQ-25) composite score administered at baseline, 6 months, and 12 months (primary assessment). Secondary assessments included NEI-VFQ-25 subscale scores, resource use, and best-corrected visual acuity (BCVA; logarithm of the minimum angle of resolution [logMAR]). RESULTS: In total, 576 patients (baseline), 555 patients (6 months), and 446 patients (12 months) were included. The mean (SD) number of IVT-AFL injections was 3.5 (1.2) at 6 months and 4.6 (2.2) at 12 months. The mean (SD) improvement from baseline in the NEI-VFQ-25 composite score was 3.1 (11.1) at 6 months and 2.7 (12.3) at 12 months (P < .0001). For the NEI-VFQ-25 subscale scores, the mean change was ≥ 4 (minimally important difference) for general vision, near vision, and mental health at 6 months, and for general vision and mental health at 12 months (all P < .0001). A significant improvement from baseline was found in mean BCVA (logMAR) at 6 months (-0.1) and 12 months (-0.1) (P < .0001). The mean change from baseline in the NEI-VFQ-25 scores was greatest in patients with improved BCVA (gain of ≤ -0.3 logMAR units or ≥ 15 letters) after treatment. CONCLUSION: IVT-AFL was associated with significant improvements in QoL and visual acuity in Japanese patients with wAMD in a real-world setting.