Publications by authors named "Sue Southworth"

7 Publications

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A qualitative exploration of physical, mental and ocular fatigue in patients with primary Sjögren's Syndrome.

PLoS One 2017 31;12(10):e0187272. Epub 2017 Oct 31.

Centre for Translational Inflammation Research, University of Birmingham, Birmingham, United Kingdom.

Introduction: Primary Sjögren's Syndrome (pSS) affects exocrine glands such as those producing the tear film, leading to dry and painful eyes, but is also associated with fatigue. The experience of fatigue in pSS, and its relationship with sicca symptoms, is poorly understood.

Methods: Twenty people diagnosed with pSS were recruited to participate in a semi-structured qualitative interview about their symptoms experience. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis.

Results: People with pSS described physical tiredness, mental fatigue and ocular fatigue. Mental fatigue was characterised by difficulties in attention, particularly, the ability to follow conversations and short-term memory problems. Participants linked their experience of fatigue to feeling of depression, frustration, irritation and anxiety, and therefore, fatigue was suggested to have had a large impact on their psychological well-being. People with pSS also described a range of ocular symptoms including pain, dryness, and itching, which were compounded by fatigue. For some, eye fatigue was pervasive, and daily activities involving the eyes such as reading, using the computer and driving were impaired. In some cases, the level of ocular discomfort was so severe it prevented sleep, which in turn impacted on general fatigue levels.

Conclusions: People with pSS experience fatigue in a range of ways; physical, mental and ocular fatigue were described. Fatigue was suggested to exacerbate other ocular symptoms, posed serious physical limitations and caused psychological distress. Further research into the nature of fatigue and ocular symptoms in pSS is required.
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November 2017

"The patient is speaking": discovering the patient voice in ophthalmology.

Br J Ophthalmol 2017 06 28;101(6):700-708. Epub 2017 Apr 28.

Centre for Patient Reported Outcomes Research, University of Birmingham, Birmingham, UK.

Eye disease can be devastating. The most feared impact is sight loss, but in a number of ophthalmic conditions, there can be wide-ranging systemic, psychological, emotional and social effects of both the disease and its treatment. External tests of visual function, such as visual acuity, are inadequate to understand the overall impact of ophthalmic disease on a patient's functional vision or daily life. This can lead to a discordance between the patient's priorities and perspective on the one hand and the efforts of clinicians and other stakeholders on the other hand. In this review, we discuss how the patient is uniquely placed to understand the impact of the disease and can use that position to transform ophthalmic care at the individual and collective level, from research to care delivery. We highlight how the "patient voice" can contribute to key areas, including priority setting in the research agenda, communicating the wide-ranging impact of disease and its treatment as assessed through qualitative research, identifying the outcome measures that matter to the patient through core outcome set development and reporting these outcomes through appropriate patient-reported outcome measures. We also consider the increasing power of the patient voice on health institutions, ranging from broadcasting an individual's experience of care he/she has received to patient societies influencing future health policy. Finally, we reflect on the challenges that need to be overcome for the patient voice to increasingly influence and improve the delivery of eye care in the future.
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June 2017

Conjunctival Neutrophils Predict Progressive Scarring in Ocular Mucous Membrane Pemphigoid.

Invest Ophthalmol Vis Sci 2016 Oct;57(13):5457-5469

Academic Unit of Ophthalmology, Centre for Translational Inflammation Research, Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom 2Birmingham and Midland Eye Centre, Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, United Kingdom.

Purpose: Ocular mucous membrane pemphigoid (OcMMP) is a rare autoimmune disorder resulting in progressive conjunctival fibrosis and ocular surface failure leading to sight loss in up to 50%. This study was designed to optimize an ocular surface sampling technique for identification of novel biomarkers associated with disease activity and/or progressive fibrosis.

Methods: Fifty-seven patients with OcMMP underwent detailed examination of conjunctival inflammation and fibrosis using fornix depth measurement. Ocular surface impression cytology (OSIC) to sample superior bulbar conjunctiva combined with flow cytometry (OSIC-flow) profiled infiltrating leukocytes. Profiles were compared with healthy controls (HC) and disease controls (primary Sjögren's syndrome, pSS). Thirty-five OcMMP patients were followed every 3 months for 12 months.

Results: Overall neutrophils were elevated in OcMMP eyes when compared to pSS or HC (109 [18%] neutrophils/impression [NPI]; 2 [0.2%]; 6 [0.8%], respectively [P < 0.0001]) and in OcMMP patients with no visible inflammation when compared with HC (44.3 [7.9%]; 5.8 [0.8%]; P < 0.05). At 12 months follow-up, 53% of OcMMP eyes progressed, and this was associated with baseline conjunctival neutrophilia (P = 0.004). As a potential biomarker, a value of 44 NPI had sensitivity, specificity, and positive predictive values of 75%, 70%, and 73%, respectively. Notably, eyes with no visible inflammation and raised conjunctival neutrophils were more likely to progress and have a greater degree of conjunctival shrinkage compared to those without raised neutrophils.

Conclusions: These data suggest that OSIC-flow cytometric analyses may facilitate repeated patient sampling. Neutrophils may act as a biomarker for monitoring disease activity, progressive fibrosis, and response to therapy in OcMMP even when the eye appears clinically uninflamed.
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October 2016

Do Demographic Factors Influence Uveitis Patients' Understanding of Uveitis?

Ocul Immunol Inflamm 2017 Dec 26;25(6):790-796. Epub 2016 May 26.

a Academic Unit of Ophthalmology , Birmingham and Midland Eye Centre , Birmingham , UK.

Purpose: To establish how much uveitis patients know about their own condition and to investigate the contribution of demographic factors to that knowledge.

Methods: A self-designed questionnaire, comprising 20 questions about uveitis, was distributed to 200 consecutive patients attending a uveitis clinic. The questionnaire requested demographic details and required responses to uveitis-specific knowledge questions. Postcode was used to determine level of social deprivation using Index of Multiple Deprivation 2007. Univariate analyses with the Mann-Whitney test and Kruskal-Wallis test were utilized. Multivariable logistic regression was performed to simultaneously measure the independent influence of demographic variables on the level of patients' understanding of their condition.

Results: Of the respondents, 62% were female, 71% aged >40 years and 67% of white ethnic origin, with 41% having been under the care of a uveitis specialist for >10 years and 72% attending ≥3 clinic appointments in the preceding 12 months. Median questionnaire score (out of 60) was 27 (interquartile range, IQR 15). Females scored significantly higher than males (30 vs 24; p = 0.001), but there was no difference according to age, ethnicity, or social deprivation quintile, nor the duration patients had been under ophthalmic review or number of clinic attendances in the preceding 12 months. Multivariable analyses determined no independent influence of any of the factors on the uveitis questionnaire score.

Conclusions: Uveitis patients' understanding of their condition is poor. This has relevance for adherence to treatment, follow-up clinic attendance, and eventual outcomes in these patients.
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December 2017

Birdshot chorioretinopathy: current knowledge and new concepts in pathophysiology, diagnosis, monitoring and treatment.

Orphanet J Rare Dis 2016 05 12;11(1):61. Epub 2016 May 12.

Department of Ophthalmology, Queen Elizabeth Hospital Birmingham, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Birdshot chorioretinopathy (BCR) is a rare form of chronic, bilateral, posterior uveitis with a distinctive clinical phenotype, and a strong association with HLA-A29. It predominantly affects people in middle age. Given its rarity, patients often encounter delays in diagnosis leading to delays in adequate treatment, and thus risking significant visual loss. Recent advances have helped increase our understanding of the underlying autoimmune mechanisms involved in disease pathogenesis, and new diagnostic approaches such as multimodality imaging have improved our ability to both diagnose and monitor disease activity. Whilst traditional immunosuppressants may be effective in BCR, increased understanding of immune pathways is enabling development of newer treatment modalities, offering the potential for targeted modulation of immune mediators. In this review, we will discuss current understanding of BCR and explore recent developments in diagnosis, monitoring and treatment of this disease. Synonyms for BCR: Birdshot chorioretinopathy, Birdshot retinochoroiditis, Birdshot retino-choroidopathy, Vitiliginous choroiditis. Orphanet number: ORPHA179 OMIM: 605808.
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May 2016

When you can have the bird without shooting it!: Extramacular enhanced depth optical coherence tomography in birdshot chorioretinopathy--reply.

JAMA Ophthalmol 2013 Oct;131(10):1369-70

Moorfields Eye Hospital, National Health Service Foundation Trust, London, England.

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October 2013

Characterization of birdshot chorioretinopathy using extramacular enhanced depth optical coherence tomography.

JAMA Ophthalmol 2013 Mar;131(3):341-50

National Institute for Health Research Biomedical Research Centre for Ophthalmology, Moorfields Eye Hospital National Health Service (NHS) Foundation Trust, London, UK.

Objective: To combine "extramacular" and "enhanced depth" optical coherence tomographic (OCT) scanning protocols to facilitate enhanced characterization of patients with birdshot chorioretinopathy.

Methods: Spectral-domain OCT images were prospectively collected from 24 eyes of 12 patients with birdshot chorioretinopathy. The images were acquired both from the macula and from 4 peripheral locations: superior and inferior to the temporal vascular arcades, nasal to the optic disc, and temporal to the macula. All images were obtained using enhanced depth scanning protocols. Qualitative and quantitative assessments were performed and compared with those from healthy, age-matched controls.

Results: Generalized loss of the photoreceptor inner segment/outer segment junction was seen more frequently on extramacular OCT image sets. Focal loss of the inner segment/outer segment junction was seen most commonly on inferior extramacular images. Generalized thinning and loss of retinal architecture, accompanied by outer retinal hyperreflective foci, were also commonly seen on extramacular scans. Assessment of choroidal morphology included thinning/absence of the Sattler layer, generalized thinning, discrete hyperreflective foci, focal depigmentation, and the presence of suprachoroidal hyporeflective space. The mean (SD) foveal choroidal thickness was significantly less for patients with birdshot chorioretinopathy (276 [101] μm) than for controls (337 [74] μm) (P = .04).

Conclusions: The OCT images obtained outside the macula often show significant retinal and choroidal changes in cases for which conventional OCT scans appear unremarkable. Use of extramacular scanning may thus allow improved phenotyping of uveitic disorders such as birdshot chorioretinopathy. Evaluation of the photoreceptor inner segment/outer segment junction, using this approach, may be of value for monitoring disease activity in clinical practice and as a surrogate end point in clinical trials.
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March 2013