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The British journal of ophthalmology 03/2013; · 2.92 Impact Factor
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ABSTRACT: BACKGROUND: Childhood intermittent exotropia [X(T)] is a type of strabismus (squint) in which one eye deviates outward at times, usually when the child is tired. It may progress to a permanent squint, loss of stereovision and/or amblyopia (reduced vision). Treatment options for X(T) include eye patches, glasses, surgery and active monitoring. There is no consensus regarding how this condition should be managed, and even when surgery is the preferred option clinicians disagree as to the optimal timing. Reports on the natural history of X(T) are limited, and there is no randomised controlled trial (RCT) evidence on the effectiveness or efficiency of surgery compared with active monitoring. The SamExo (Surgery versus Active Monitoring in Intermittent Exotropia) pilot study has been designed to test the feasibility of such a trial in the UK. METHODS: Design: an external pilot patient randomised controlled trial.Setting: four UK secondary ophthalmology care facilities at Newcastle NHS Hospitals Foundation Trust, Sunderland Eye Infirmary, Moorfields Eye Hospital and York NHS Trust.Participants: children aged between 6 months and 16 years referred with suspected and subsequently diagnosed X(T). Recruitment target is a total of 144 children over a 9-month period, with 120 retained by 9-month outcome visit.Randomisation: permuted blocks stratified by collaborating centre, age and severity of X(T).Interventions: initial clinical assessment; randomisation (eye muscle surgery or active monitoring); 3-, 6- and 9-month (primary outcome) clinical assessments; participant/proxy completed questionnaire covering time and travel costs, health services use and quality of life (Intermittent Exotropia Questionnaire); qualitative interviews with parents to establish reasons for agreeing or declining participation in the pilot trial.Outcomes: recruitment and retention rates; nature and extent of participation bias; nature and extent of biases arising from crossover or loss to follow-up; reasons for agreeing/declining participation; variability of cure rates (to inform power calculations for a definitive RCT); completion rates of outcome measures. DISCUSSION: The SamExo pilot trial will provide important pointers regarding the feasibility of a full RCT of immediate surgery versus deferred surgery/active monitoring. The results of this pilot, including differences in cure rates, will inform the design of a definitive RCT.Trial registrationISRCTN44114892.
Trials 10/2012; 13(1):192. · 2.02 Impact Factor
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ABSTRACT: To describe surgical outcomes in intermittent exotropia (X(T)), and to relate these to preoperative and surgical characteristics.
87 children (aged <11 years) underwent surgery in 18 UK centres; review data (mean 21 months post-surgery) were available for 72. The primary outcome measure was motor/sensory outcome (angle and stereoacuity). The secondary outcome measure was satisfactory control assessed by Newcastle Control Score (NCS).
35% of patients had excellent, 28% had fair and 37% had poor primary outcome. Preoperative and surgical characteristics did not influence primary outcome. Satisfactory control was achieved in 65% of patients, while X(T) remained/recurred in 20%. Persistent over-correction occurred in 15% of children. There was no relationship between over-correction and preoperative characteristics or surgical dose/type. Median angle improved by 12 prism dioptres (PD) at near and 19 PD at distance (p<0.001). Median NCS improved by 5 (p<0.001). 40% of those initially over-corrected remained so by last postoperative assessment; no relationship was found between an initial over-correction and good outcome.
Whilst excellent motor/sensory outcome was achieved in one-third and satisfactory control in two-thirds of patients, the 37% poor outcome and 15% persistent over-correction rate is of concern. Surgical dose was similar in those under- and over-corrected, suggesting that over-corrections cannot be avoided merely by getting the dosage right: a randomised controlled trial (RCT) would shed light on this issue. Initial over-correction did not improve the chance of a good outcome, supporting the growing literature on this topic and further highlighting the need for randomised controlled trials of X(T) surgery.
The British journal of ophthalmology 08/2012; 96(10):1291-5. · 2.92 Impact Factor
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ABSTRACT: The purpose of this study was to investigate current patterns of management and outcomes of intermittent distance exotropia [X(T)] in the UK.
This was an observational cohort study which recruited 460 children aged < 12 years with previously untreated X(T). Eligible subjects were enrolled from 26 UK hospital ophthalmology clinics between May 2005 and December 2006. Over a 2-year period of follow-up, clinical data were prospectively recorded at standard intervals from enrolment. Data collected included angle, near stereoacuity, visual acuity, control of X(T) measured with the Newcastle Control Score (NCS), and treatment. The main outcome measures were change in clinical outcomes (angle, stereoacuity, visual acuity and NCS) in treated and untreated X(T), 2 years from enrolment (or, where applicable, 6 months after surgery). Change over time was tested using the chi-square test for categorical, Wilcoxon test for non-parametric and paired-samples t-test for parametric data.
At follow-up, data were available for 371 children (81% of the original cohort). Of these: 53% (195) had no treatment; 17% (63) had treatment for reduced visual acuity only (pure refractive error and amblyopia); 13% (50) had non surgical treatment for control (spectacle lenses, occlusion, prisms, exercises) and 17% (63) had surgery. Only 0.5% (2/371) children developed constant exotropia. The surgically treated group was the only group with clinically significant improvements in angle or NCS. However, 8% (5) of those treated surgically required second procedures for overcorrection within 6 months of the initial procedure and at 6-month follow-up 21% (13) were overcorrected.
Many children in the UK with X(T) receive active monitoring only. Deterioration to constant exotropia, with or without treatment, is rare. Surgery appears effective in improving angle of X(T) and NCS, but rates of overcorrection are high.
BMC Ophthalmology 01/2012; 12:1. · 1.00 Impact Factor
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ABSTRACT: To evaluate the PedsQLs performance in children with intermittent exotropia (X[T]) in terms of feasibility, internal consistency, floor-ceiling effects and levels of parent-child agreement.
Children with X(T) aged <12 years were recruited from 26 UK Hospital Eye Clinics/Orthoptic Departments. QOL was assessed using child (n = 166) and proxy (n = 392) versions of the PedsQLv4. Feasibility was assessed by percentage of missing responses; internal consistency by Cronbach's alpha and agreement by Bland-Altman plots and intraclass correlations. Analyses included age and gender comparisons.
Missing response rates were no higher than 1.8%. Cronbach's alpha reached ≥ 0.70 on all but one parent-rated scale and on most child-rated Total, Psychosocial Summary and Social Functioning scales, but was <0.70 on most child-rated Physical, Emotional and School Functioning scales. On parent-rated scales, there were no floor effects; ceiling effects reached 27-56% in parents' Physical, Social and School Functioning. On child-rated scales, there were 0-1% floor effects and 0-28% ceiling effects. Parent-child agreement was fair to poor and varied by child's gender.
Proxy-rated PedsQLs demonstrated good internal consistency/feasibility in parents of children with X(T); child-rated reports appeared acceptable, although caution is advised regarding Physical, Emotional and School Functioning scales in younger children. Low-fair agreement between proxy and self-ratings is common in paediatric QOL assessment, reiterating the importance of obtaining both perspectives. We encourage future studies to explore the influence of child's age and gender, and the relationship of the proxy respondent.
Quality of Life Research 07/2011; 21(4):727-36. · 2.30 Impact Factor
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ABSTRACT: To investigate factors associated with early management of intermittent exotropia (X(T)) in hospital eye departments in the UK in a prospective cohort study.
An inception cohort of 460 children aged <12 years with previously untreated X(T) (mean age 3.6 years, 55.9% girls) was recruited from 26 UK hospital children's eye clinics and orthoptic departments. Participants received a standard ophthalmic examination at recruitment and orthoptic assessment at three-monthly intervals thereafter. The influence of severity of exotropia (control measured by Newcastle Control Score (NCS), and angle of strabismus, visual acuity and stereoacuity) and age on the type of management was investigated.
Within the first 12 months following recruitment, 297 (64.6%) children received no treatment, either for impaired visual acuity or for strabismus. Ninety-six (21%) children had treatment for impaired visual acuity. Eighty-nine (19.4%) received treatment for strabismus (22 of whom also received treatment for defective visual acuity); in 54 (11.7%) treatment was non-surgical and in 35 (7.6%) eye muscle surgery was performed. Children with poor (score 7-9) control of strabismus at recruitment were more likely to have surgery than children with good (score 1-3) control (p<0.001). Children who had no treatment were younger (mean age 3.38 years) than those who were treated (mean 4.07 years) (p<0.001). Stereoacuity and size of the angle of strabismus did not influence the type of management received.
X(T) can be a presenting sign of reduced visual acuity. Most children with well controlled X(T) receive no treatment within 12 months following presentation.
The British journal of ophthalmology 07/2009; 93(12):1620-4. · 2.92 Impact Factor
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ABSTRACT: Ocular dysmotility is a common feature of Graves' ophthalmopathy and frequently requires strabismus surgery. We reviewed the short-term results of strabismus surgery for Graves' ophthalmopathy to determine pre- and perioperative parameters predictive of postoperative outcome.
A retrospective review of Graves' ophthalmopathy patients who underwent strabismus surgery. Outcomes were correlated with preoperative and operative characteristics. The main outcome measure was field of binocular single vision score. Residual postoperative strabismus was considered a secondary outcome. Preoperative characteristics examined included age and laterality at onset, sex, disease activity, smoking status, and treatment for Graves' ophthalmopathy. Good outcome was defined as field of binocular single vision >50% and heterophoria in the primary position. Moderate outcome was defined as a field of binocular single vision 1% to 50% with heterotropia but with correctable diplopia in the primary position using prisms or head tilt. Poor outcome was defined as no measurable field of binocular single vision and intractable diplopia.
Fifty patients were identified: 28 women, 22 men; mean age, 54 years (SD +/- 12.8). Thirty-seven (74%) had good and 13 (26%) had moderate or poor outcomes. Preoperative characteristics that were associated with good outcomes were symmetry of orbitopathy at Graves' ophthalmopathy onset (chi(2) = 7.5, p = 0.001) and earlier timing of surgery (t = -2.9, p = 0.003).
Relative symmetry of orbitopathy at onset and a shorter time interval between onset of orbitopathy and surgery, while allowing for disease stability, are predictive of a good outcome following strabismus surgery for Graves' ophthalmopathy.
Journal of AAPOS: the official publication of the American Association for Pediatric Ophthalmology and Strabismus / American Association for Pediatric Ophthalmology and Strabismus 04/2009; 13(3):236-40. · 1.07 Impact Factor
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Ophthalmology 08/2007; 114(7):1416; author reply 1416. · 5.45 Impact Factor
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ABSTRACT: Few suitable instruments exist for use with people, especially children, with both epilepsy and learning disabilities. One such measure is the Epilepsy and Learning Disabilities Quality of Life scale (ELDQOL), which has recently undergone revision following feedback from relevant users. This article reports on the final psychometric testing phase of this scale. ELDQOL consists of 70 items covering seizure severity, seizure-related injuries, antiepileptic drug side effects, behavior, mood, physical, cognitive, and social functioning, parental concern, communication, overall quality of life, and overall health. Revalidation involved a qualitative phase, to ascertain users' opinions on the wording, coverage, and layout of the questionnaire, and a quantitative phase, to examine internal consistency, test-retest reliability, and validity. There is very good evidence of the reliability and validity of the final version of ELDQOL, making it a promising instrument for assessing quality of life in children/young adults with epilepsy and learning disabilities.
Epilepsy & Behavior 03/2007; 10(1):38-43. · 2.34 Impact Factor
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ABSTRACT: To evaluate the use of the Newcastle Control Score (NCS) in the management of intermittent exotropia (X(T)). Participants and methods: Children aged <11 years with X(T) had an assessment of NCS as part of routine management. Other data collected included visual acuity, near and distance alignment with alternating prism cover test and near (Frisby test) and distance stereoacuity (Frisby Davis Distance Stereotest (FD2TM)). Analysis involved correlation between baseline NCS, angle and stereoacuity, examination of change over time and logistic regression to determine predictors of surgery.
Baseline data were obtained on 272 children and follow-up data on 157. Mean (SD) age was 4 (1.9) years. Complete NCSs were obtained for all except one child at baseline, and all children at follow-up. At baseline, total NCS and the home control component were correlated with near stereo (r = -0.22, p<0.01 and r = -0.19, p<0.02, respectively), near alignment (r = 0.34, p<0.001 and r = 0.19, p<0.02) and distance alignment (r = 0.30, p<0.001 and r = 0.26, p<0.001). The clinic near control component was correlated with near alignment (r = 0.39, p<0.001), but not near stereoacuity, and the clinic distance control with near alignment (r = 0.16, p<0.02), distance alignment (r = 0.27, p<0.001) and distance stereoacuity (r = -0.25, p<0.03). A high (poor) NCS (> or =4) at the latest follow-up predicted surgery (p<0.001, OR 29.3, 95% CI 6.2 to 138.7).
The NCS is a useful measure of the clinical severity of X(T), can be used to serially assess improvement or deterioration and is a useful tool for the management of these patients.
British Journal of Ophthalmology 02/2007; 91(2):215-8. · 2.90 Impact Factor
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ABSTRACT: Reduced stereoacuity is commonly found in association with reduced visual acuity or strabismus and may significantly affect neuro-developmental performance. Treatment for reduced visual acuity due to refractive error or amblyopia is believed to result in improved stereoacuity. This study was undertaken to investigate the effect on stereoacuity of treatment for unilateral visual impairment detected at preschool vision screenings, in the setting of a randomized controlled trial.
Children identified through preschool vision screening were recruited and randomized to one of three groups (no treatment, glasses only, or full treatment with glasses and occlusion) for a period of 12 months, after which full treatment was given when indicated. Logarithm of the minimum angle of resolution (LogMAR) visual acuity and random-dot (Randot; Stereo Optical, Chicago, IL) stereoacuity were assessed at recruitment and at 12- and 18-month follow-ups by an orthoptist masked to group allocation.
One hundred seventy-seven children were recruited and randomized, 59 to each group. Comparison of stereoacuities showed an immediate median improvement of 30 seconds of arc in each group from refractive correction. Age significantly affected stereoacuity performance at recruitment (mean age, 4 years) but not at follow-up (mean age, 5 years). Deferring treatment did not affect final stereoacuity.
In this group, stereoacuity improved to a normal level as a result of refractive correction. Children in whom treatment was deferred for 12 months did not demonstrate significantly poorer stereoacuity than those in treatment.
Investigative Ophthalmology & Visual Science 02/2005; 46(1):150-4. · 3.60 Impact Factor
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ABSTRACT: Assessment of health-related quality of life (HRQOL) is not routinely reported in the literature on chronic liver disease (CLD). Few studies have examined quality of life (QOL) in patients with primary biliary cirrhosis (PBC) despite its significant functional impact. One of the reasons for the lack of HRQOL measurement in patients with PBC may be the absence of a well-recognized and widely used measure that clinicians can use in ordinary clinical practice. The aim of this study is to evaluate HRQOL measures used in patients with PBC and examine the suitability of the measures for these patients.
A literature search identified reports that focused on any aspect of QOL in patients with PBC. Key texts were identified containing generic, domain-specific, and condition-specific measures. The identified measures were systematically evaluated for appropriateness, acceptability, reliability, validity, precision, and responsiveness.
Twenty measures were identified from 9 key texts. Six of the measures were previously validated generic measures; 10 were domain-specific measures previously used to measure fatigue, depression, and psychological distress in general and psychiatric populations; and 4 measures had been developed in patients with CLD. Reporting of reliability and validity generally was consistent for all measures used. However, reporting of the remaining criteria was variable, particularly in relation to responsiveness over time and acceptability of the measures to patients with PBC.
A clearer and more rigorous approach is needed in reporting the properties of HRQOL measures used in patients with PBC to help clinicians decide which measures are most suitable for these patients.
Clinical Gastroenterology and Hepatology 03/2004; 2(2):164-74. · 5.63 Impact Factor
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ABSTRACT: A review of stroke-specific quality of life (QOL) measures indicated little evidence of their validity/reliability.
To describe the development/validation of a new measure - the Newcastle Stroke-Specific Quality of Life Measure (NEWSQOL).
Phase I: qualitative interviews (28 stroke patients) determined QOL issues for inclusion in the measure. Initial items/response categories were pre-tested (30 patients). Administration of the NEWSQOL in the item reduction stage (100 patients) identified poorly performing items and factor analysis showed likely domains. Internal consistency was examined. Phase II: NEWSQOL and comparator measures were administered (106 patients) to examine validity/test-retest reliability.
Phase I: 140 items were identified for initial inclusion. Qualitative pre-testing led to an extensive revision. Item reduction resulted in a final measure of 56 items in 11 domains (feelings, activities of daily living/self-care, cognition, mobility, emotion, sleep, interpersonal relationships, communication, pain/sensation, vision, fatigue; Cronbach's alpha = 0.71-0.90). Phase II: NEWSQOL domain scores, except cognition, were moderately/highly correlated (0.45-0.76) with relevant comparator measures. NEWSQOL domains feelings, communication and cognition low/moderately correlated with Barthel Index scores (-0.49 to -0.28), as predicted. Test-retest reliability was high (intraclass correlation coefficient range 0.78-0.92).
NEWSQOL is an acceptable, patient-derived, interviewer-administered, stroke-specific QOL measure with evidence of reliability and validity, making it a promising instrument for assessing QOL after stroke. Involvement of relevant patients in determining the content and format considerably enhances confidence in its validity.
Cerebrovascular Diseases 02/2004; 17(2-3):143-52. · 2.72 Impact Factor
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ABSTRACT: Purpose: To examine between-country differences in health-related quality of life (HRQOL) of adults with epilepsy across a large number of European countries. Methods: Self-completion postal questionnaire sent to large sample of adults with epilepsy, recruited from epilepsy support groups or epilepsy outpatient clinics. The questionnaire was developed in English and translated. Back-translations from each language were checked for accuracy. The questionnaire sought information on clinical and socio-demographic details, and contained a number of previously validated scales of psychosocial well-being (the SF-36, the perceived impact of epilepsy scale, and a feelings of stigma scale). Results: Controlling for socio-demographic and clinical characteristics, significant between-country differences were found in scores on the perceived impact of epilepsy scale, on seven of the eight SF-36 domains, and on the feelings of stigma scale. Respondents in Spain and the Netherlands fared consistently better, whilst those in France fared poorest, compared to those in other countries in terms of the various HRQOL measures used. Conclusion: Several possible reasons for the cross-cultural differences in HRQOL are proposed. Clearly, there is no single explanation and there may also be reasons which we have overlooked. This study emphasises the need for further comprehensive research in order that the position of people with epilepsy in different countries be more thoroughly understood in the social context.
Quality of Life Research 11/1999; 8(8):675-685. · 2.30 Impact Factor
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ABSTRACT: This paper describes the extent of the informal caregiving unit for older people who are physically or mentally frail living in private households or resident in long-term care institutions using cross-sectional analysis of survey data. A total of 1444 people aged 65 years or more registered with a general practitioner (GP) in four areas in England and, consenting to the study, were screened for mental or physical frailty. Of 1127 older subjects living at home 7% reported receiving no informal support, 15% had a paid supporter only and 78% nominated a key informal supporter who helped with defined activities of daily living of whom 650 (74%) were interviewed. Only 13% nominated more than one informal supporter. Key supporters were spouses (38%), daughters (30%), sons (9%), daughters-in-law (4%), other relatives (11%) and friends and neighbours (8%). Of 317 frail older people resident in long-term care institutions 175 (55%) received a main visitor at least once a week of whom 132 (75%) were interviewed. Main visitors were spouses (11%), daughters (36%), sons (23%), daughters-in-law (2%), other relatives (24%) and friends (4%). Qureshi & Walker's (1989) hierarchical, decision-making model for selecting informal caregivers was applied to the data and correctly identified 85% of key informal supporters and 79% of main visitors interviewed. This large-scale comprehensive survey of informal care for frail older people supports earlier small-scale localized studies highlighting the key role of spouses and daughters in the provision of informal support. Families of frail older people provide the support to maintain people at home.
Health & Social Care in the Community 11/1999; 7(6):434-444. · 0.86 Impact Factor
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ABSTRACT: A considerable literature is now available on the applications and psychometric properties of the MOS SF-36 Health Survey. In epilepsy, the SF-36 has been used as a health status measure in its own right and as the stem for two condition-specific measures. This paper replicates for epilepsy previous work to support use of the SF-36 across a range of clinical conditions. Data were obtained from a European-wide descriptive study of quality of life of adults with epilepsy; analysis of responses on the SF-36 is based on 4,929 subjects in eight countries. Missing value rates for all SF-36 items were low; percentages for whom complete information available for subscales ranged from 95.7% to 98.6%. All subscales passed tests for item-internal consistency and item-discriminant validity. Reliability coefficients exceeded the standard recommended for group comparisons across all subscales. Floor effects were negligible for all but the two role disability subscales; there were substantial ceiling effects for five of the SF-36 subscales. We conclude that the SF-36 is a valid and reliable health status measure for descriptive studies of people with epilepsy, but ceiling effects may limit its usefulness as an outcome measure in the assessment of new treatments.
Quality of Life Research 05/1999; 8(4):351-364. · 2.30 Impact Factor
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ABSTRACT: Purpose: The increased risk of mortality among people with epilepsy is well documented; people with epilepsy are more likely than the general population to die as a result of an accident. Data about incidence of nonfatal accidents and associated factors are not so readily available, even though such accidents are more common than fatal injuries. We report the proportion of people who sustain various injuries during a seizure and the key variables predicting injury.Methods: Questionnaires were mailed to an unselected, community-based population of patients with epilepsy. The questionnaire included clinical and demographic details, previously validated scales of psychosocial well-being, and questions about seizure-related injuries.Results: Of patients who had had at least one seizure during the previous year, 24% sustained at least one head injury, 16% sustained a burn or scald, 10% a dental injury, and 6% some other fracture. Seizure type, seizure severity, and seizure frequency were key predictors of having sustained at least one of these four seizure-related injuries. Key predictors of budscald were seizure severity, seizure frequency and sex; those of head injury were seizure severity and type; that of dental injury was seizure severity; and those of some other fracture were seizure severity, duration of epilepsy, and three or more drug-related adverse effects.Conclusions: These data help identify significant risk factors associated with seizure-related injuries and so facilitate sensible patient counseling about how the risks of such injuries can be minimized.
Epilepsia 03/1997; 38(4):439 - 444. · 3.96 Impact Factor
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ABSTRACT: Purpose: To determine condition-specific satisfaction with care, we studied patients'experience of general practitioner (primary physician) and hospital clinic care for their epilepsy and their views about the provision of information concerning the management of their condition.Methods: A postal questionnaire was sent to an unselected, community-based population of patients with epilepsy. In addition to clinical and demographic details and previously validated scales of psychosocial well-being, the instrument contained a series of questions about patients'experiences and views of the care they received for epilepsy from both general practice and the hospital services.Results: Doctors'interpersonal skills were the most influential factors affecting both patient satisfaction overall and the likelihood that doctors might discuss with patients certain clinical and social issues surrounding the management of the patient's condition. A sizable proportion of patients reported that they received insufficient information, about epilepsy, both from hospital doctors and general practitioners.Conclusions: Patients with epilepsy place great importance on having a doctor who is approachable, communicative, and knowledgeable and on receiving adequate information about their condition. Clinicians may need to be made more aware of the importance of accessibility and sensitivity to the nonclinical needs of their patients. Such easily implemented changes in the delivery of care would improve services in the United Kingdom for people with epilepsy.
Epilepsia 08/1996; 37(9):841 - 849. · 3.96 Impact Factor
