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      Healthcare experiences of patients with age-related macular degeneration: have things improved? Cross-sectional survey responses of Macular Society members in 2013 compared with 1999

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          Abstract

          Objective

          To investigate healthcare experiences of patients with age-related macular degeneration (AMD) and determine whether a previous survey and Royal College of Ophthalmologists (RCOphth) management guidelines brought improvements.

          Design

          Cross-sectional survey of Macular Society members in 2013 compared with previous 1999 survey.

          Setting

          UK Postal Questionnaires.

          Participants

          1169 respondents in 2013 (1187 in 1999).

          Intervention

          Publication of 1999 survey results (2002), and RCOphth AMD guidelines (2009).

          Main outcome measures

          Respondents answered questions about experiences at diagnosis. Five questions were replicated from the 1999 survey for direct comparison in the 2013 survey which included additional questions based on 2009 RCOphth recommendations for information and support provision for patients with AMD.

          Results

          Most 2013 survey respondents were given the name of their macular condition (91%), felt the healthcare professional was interested in them (71%) and were satisfied overall with the diagnostic consultation (76%). These outcomes show significant improvement since 1999. Within the 2013 sample, multivariable analyses showed gradual trends of improvement over time in: provision of written information, Macular Society information and receiving appropriate help, support and advice at diagnosis. Only overall satisfaction with the diagnostic consultation (but not the other nine areas of information and support provision studied) significantly improved in the time after publication of the RCOphth 2009 guidelines. There were no significant improvements associated with the publication of the 1999 survey results. Low information and support provision remained, for example, 44% of respondents diagnosed after the RCOphth 2009 guidelines reported not receiving information on what to do if vision deteriorated. Lack of such information at diagnosis was significantly associated with registration as sight impaired (p<0.01). Reports of general practitioner (GP) knowledge of AMD remained low: 39% reported their GP was ‘not at all well informed’. The 2013 respondents reported lower levels of help and support from GPs than 1999 respondents (p<0.001).

          Conclusions

          Patients diagnosed with AMD after 1999 (vs before 1999) reported better experiences at diagnostic consultation. However, information and support provision at diagnosis, and satisfaction with GPs remained low.

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          Most cited references6

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          Ranibizumab and bevacizumab for neovascular age-related macular degeneration.

          Daniel Martin, Maureen Maguire, Gui-shuang Ying … (2011)
          Clinical trials have established the efficacy of ranibizumab for the treatment of neovascular age-related macular degeneration (AMD). In addition, bevacizumab is used off-label to treat AMD, despite the absence of similar supporting data. In a multicenter, single-blind, noninferiority trial, we randomly assigned 1208 patients with neovascular AMD to receive intravitreal injections of ranibizumab or bevacizumab on either a monthly schedule or as needed with monthly evaluation. The primary outcome was the mean change in visual acuity at 1 year, with a noninferiority limit of 5 letters on the eye chart. Bevacizumab administered monthly was equivalent to ranibizumab administered monthly, with 8.0 and 8.5 letters gained, respectively. Bevacizumab administered as needed was equivalent to ranibizumab as needed, with 5.9 and 6.8 letters gained, respectively. Ranibizumab as needed was equivalent to monthly ranibizumab, although the comparison between bevacizumab as needed and monthly bevacizumab was inconclusive. The mean decrease in central retinal thickness was greater in the ranibizumab-monthly group (196 μm) than in the other groups (152 to 168 μm, P=0.03 by analysis of variance). Rates of death, myocardial infarction, and stroke were similar for patients receiving either bevacizumab or ranibizumab (P>0.20). The proportion of patients with serious systemic adverse events (primarily hospitalizations) was higher with bevacizumab than with ranibizumab (24.1% vs. 19.0%; risk ratio, 1.29; 95% confidence interval, 1.01 to 1.66), with excess events broadly distributed in disease categories not identified in previous studies as areas of concern. At 1 year, bevacizumab and ranibizumab had equivalent effects on visual acuity when administered according to the same schedule. Ranibizumab given as needed with monthly evaluation had effects on vision that were equivalent to those of ranibizumab administered monthly. Differences in rates of serious adverse events require further study. (Funded by the National Eye Institute; ClinicalTrials.gov number, NCT00593450.).
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            Prevalence and causes of vision loss in high-income countries and in Eastern and Central Europe: 1990-2010.

            Richard White, Kovin Naidoo, … (2014)
            To assess prevalence and causes of blindness and vision impairment in high-income regions and in Central/Eastern Europe in 1990 and 2010. Based on a systematic review of medical literature, prevalence of moderate and severe vision impairment (MSVI; presenting visual acuity <6/18 but ≥3/60 in the better eye) and blindness (presenting visual acuity <3/60) was estimated for 1990 and 2010. Age-standardised prevalence of blindness and MSVI decreased from 0.2% to 0.1% (3.314 million to 2.736 million people) and from 1.6% to 1.0% (25.362 million to 22.176 million), respectively. Women were generally more affected than men. Cataract was the most frequent cause of blindness in all subregions in 1990, but macular degeneration and uncorrected refractive error became the most frequent causes of blindness in 2010 in all high-income countries, except for Eastern/Central Europe, where cataract remained the leading cause. Glaucoma and diabetic retinopathy were fourth and fifth most common causes for blindness for all regions at both times. Uncorrected refractive error, followed by cataract, macular degeneration, glaucoma and diabetic retinopathy, was the most common cause for MSVI in 1990 and 2010. In highly developed countries, prevalence of blindness and MSVI has been reduced by 50% and 38%, respectively, and the number of blind people and people with MSVI decreased by 17.4% and 12.6%, respectively, even with the increasing number of older people in the population. In high-income countries, macular degeneration has become the most important cause of blindness, but uncorrected refractive errors continue to be the leading cause of MSVI.
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              Gender differences in patients' perceptions of inpatient care.

              Katrin Hambarsoomian, Marc Elliott, William G Lehrman … (2012)
              To examine gender differences in inpatient experiences and how they vary by dimensions of care and other patient characteristics.
              Article 0 comments Cited 40 times – based on 0 reviews     Review now
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                Author and article information

                Journal
                Journal ID (nlm-ta): BMJ Open
                Journal ID (iso-abbrev): BMJ Open
                Journal ID (hwp): bmjopen
                Journal ID (publisher-id): bmjopen
                Title: BMJ Open
                Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                ISSN (Electronic): 2044-6055
                Publication date Collection: 2017
                Publication date (Electronic): 6 February 2017
                Volume: 7
                Issue: 2
                Electronic Location Identifier: e012790
                Affiliations
                [1 ]Health Psychology Research Unit, Royal Holloway, University of London , Egham, UK
                [2 ]Department of Psychology, Royal Holloway, University of London , Egham, UK
                [3 ]Ophthalmology, DCN, University of Nottingham, B Floor Eye and ENT Centre, University Hospital, QMC , Nottingham,UK
                [4 ]Health Psychology Research Ltd, Royal Holloway, University of London , Egham, UK
                Author notes
                [Correspondence to ] Professor Clare Bradley; c.bradley@ 123456rhul.ac.uk
                Author information
                http://orcid.org/0000-0002-6499-525X
                Article
                Publisher ID: bmjopen-2016-012790
                DOI: 10.1136/bmjopen-2016-012790
                PMC ID: 5318558
                PubMed ID: 28196945
                SO-VID: b4da48da-6a89-49a5-a620-be3b5c1c7ffa
                Copyright © Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
                License:

                This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

                History
                Date received : 24 May 2016
                Date revision received : 3 November 2016
                Date accepted : 16 December 2016
                Categories
                Subject: Ophthalmology
                Subject: Research
                Subject: 1506
                Subject: 1718
                Subject: 1684
                Subject: 1704
                Subject: 1722

                ScienceOpen disciplines: Medicine
                Keywords: age-related macular degeneration,patient satisfaction,sight impairment,information provision
                Data availability:
                ScienceOpen disciplines: Medicine
                Keywords: age-related macular degeneration, patient satisfaction, sight impairment, information provision

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