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Article ; Online: Living with Long COVID: Implementing a living approach to the NICE guideline on managing the long-term effects of COVID-19

Sharp, Steve / Boyce, Sarah / Karpusheff, Justine / Glen, Fiona

medRxiv

Abstract: Objectives The aim of this paper is to describe the development and implementation of a flexible living approach to maintaining the currency of NICE′s long-term effects of COVID-19 (LTE) guideline and monitoring the uncertain evidence base of this ... ...

Abstract	Objectives The aim of this paper is to describe the development and implementation of a flexible living approach to maintaining the currency of NICE′s long-term effects of COVID-19 (LTE) guideline and monitoring the uncertain evidence base of this condition. Study Design and Setting The NICE COVID-19 team reviewed its practical experiences of establishing a living approach to developing and maintaining the LTE guideline, including initial development, maintenance and eventual transition to a lower intensity model. The methods and processes were described narratively over the first 2 years of the guideline′s lifespan. This was combined with quantitative data on emerging and cumulative evidence over the period to chart the evidence landscape. Results Following publication, the initial timepoint-based update process evolved into a flexible living approach with remote topic expert engagement. Experts engaged with the new process with a 64% response rate to the online surveys. Emerging evidence increased rapidly following publication [11,405 studies assessed in 2021 and 13,181 in 2022] and was captured by continuous surveillance. There were no urgent triggers for updating from the studies identified in 2022 via the living approach, saving considerable resources over the timepoint based approach which would commit resources to planning and convening expert panel meetings. A total of 184 studies with a potential future impact were summarised to capture the cumulative evidence base. Experts highlighted ongoing research and implementation issues which have further informed surveillance of the guideline. After a sustained period without triggers for updating, the living approach was restricted to the highest priority areas with surveillance of ongoing studies. Conclusion This paper illustrates a flexible living approach taken to a novel condition with an evolving evidence landscape. Currency of some living guidelines can be maintained without the need for frequent updating.
Keywords	covid19
Language	English
Publishing date	2023-05-11
Publisher	Cold Spring Harbor Laboratory Press
Document type	Article ; Online
DOI	10.1101/2023.05.09.23289572
Database	COVID19

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Article ; Online: Involving People with Learning Disabilities in Guideline Development.

Karpusheff, Justine / Haynes, Charlotte / Glen, Fiona / Leng, Gillian

The patient

2019 Volume 13, Issue 2, Page(s) 251–254

MeSH term(s)	Delivery of Health Care/standards ; Humans ; Learning Disabilities/psychology ; Motivation ; Patient Participation/methods ; Patient Participation/psychology ; Practice Guidelines as Topic ; Social Work/standards ; State Medicine/organization & administration ; United Kingdom
Language	English
Publishing date	2019-09-25
Publishing country	New Zealand
Document type	Letter
ZDB-ID	2466680-4
ISSN	1178-1661 ; 1178-1653
ISSN (online)	1178-1661
ISSN	1178-1653
DOI	10.1007/s40271-019-00390-x
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Article ; Online: A patient-centred and multi-stakeholder co-designed observational prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphataemia (XLH).

Saraff, Vrinda / Boot, Annemieke M / Linglart, Agnès / Semler, Oliver / Harvengt, Pol / Williams, Angela / Bailey, Karen M A / Glen, Fiona / Davies, Elin Haf / Wood, Sue / Greentree, Stephen / Rylands, Angela J

PloS one

2024 Volume 19, Issue 1, Page(s) e0295080

Abstract: The importance of patient centricity and keeping the patient at the heart of research design is now well recognised within the healthcare community. The involvement of patient, caregiver and clinician representatives in the study design process may help ... ...

Abstract	The importance of patient centricity and keeping the patient at the heart of research design is now well recognised within the healthcare community. The involvement of patient, caregiver and clinician representatives in the study design process may help researchers to achieve this goal and to ensure robust and meaningful data generation. Real-world data collection allows for a more flexible and patient-centred research approach for gaining important insights into the experience of disease and treatments, which is acutely relevant for rare diseases where knowledge about the disease is more likely to be limited. Here, we describe a practical example of a patient-centric, multi-stakeholder approach that led to the co-design of a prospective observational study investigating the lived experience of adolescents with the rare disease, X-linked hypophosphataemia. Specifically, we describe how the knowledge and expertise of a diverse research team, which included expert physicians, research and technology specialists, patients and caregivers, were applied in order to identify the relevant research questions and to ensure the robustness of the study design and its appropriateness to the population of interest within the context of the current clinical landscape. We also demonstrate how a structured patient engagement exercise was key to informing the selection of appropriate outcome measures, data sources, timing of data collection, and to assessing the feasibility and acceptability of the proposed data collection approach.
MeSH term(s)	Humans ; Adolescent ; Familial Hypophosphatemic Rickets ; Prospective Studies ; Delivery of Health Care ; Caregivers ; Physicians ; Observational Studies as Topic
Language	English
Publishing date	2024-01-19
Publishing country	United States
Document type	Journal Article
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0295080
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Article ; Online: COVID-19: living guidelines help fix cracks in evidence pipeline.

Vandvik, Per Olav / Askie, Lisa / Glen, Fiona / Tendal, Britta / Agoritsas, Thomas

Nature

2021 Volume 595, Issue 7866, Page(s) 172

Language	English
Publishing date	2021-07-06
Publishing country	England
Document type	Letter ; Comment
ZDB-ID	120714-3
ISSN	1476-4687 ; 0028-0836
ISSN (online)	1476-4687
ISSN	0028-0836
DOI	10.1038/d41586-021-01821-2
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Article ; Online: Living with glaucoma: a qualitative study of functional implications and patients' coping behaviours.

Glen, Fiona C / Crabb, David P

BMC ophthalmology

2015 Volume 15, Page(s) 128

Abstract: Background: Sight loss from glaucoma can have a significant impact on functioning and performing everyday activities, but this varies between patients. The purpose of this study was to explore whether patients with glaucoma use different coping ... ...

Abstract	Background: Sight loss from glaucoma can have a significant impact on functioning and performing everyday activities, but this varies between patients. The purpose of this study was to explore whether patients with glaucoma use different coping strategies in response to their vision loss. Methods: Audio-recorded semi-structured interviews were conducted with 16 patients (median age: 71 [interquartile range [IQR]: 68 to 77 years]; 50 % female) about their experiences of living with glaucoma. Patients had their glaucoma diagnosis for at least 5 years (range: 6 to 29 years) and had a range of disease severities (median best eye Mean Deviation was -9.1 dB [IQR: -12.9 to -4.1 dB]). A framework approach to analysis was taken whereby data was indexed using manual and computer-assisted methods, with codes applied to depict areas of functioning perceived to be impacted by glaucoma and coping behaviours used in response to these difficulties. Results: In order to maintain independence, some patients increased confidence by making practical changes such as adjusting lighting, using handrails and magnifying glasses, or actively changed aspects of their behaviour such as moving their head and eyes towards known areas of vision loss. Support from friends and family was often used, although some people worried about becoming a burden. Others imposed self-restrictions or gave up activities, thus compromising well-being and independence. Certain coping strategies were linked to time since diagnosis and location of vision loss. The type and quality of information received during clinical appointments, and the potential benefits of communication with other patients, emerged as other important themes. Conclusions: Results from this qualitative study suggest that the adoption of certain coping behaviours and techniques may help some glaucomatous patients to adapt to their condition. An awareness of coping and adaptive strategies, in addition to the usual clinical tests, may provide a better insight into the impact of disease and help inform future educational and management strategies for glaucoma.
MeSH term(s)	Activities of Daily Living ; Adaptation, Psychological ; Aged ; Attitude to Health ; Disability Evaluation ; Female ; Glaucoma/psychology ; Humans ; Intraocular Pressure/physiology ; Male ; Patient Acceptance of Health Care/psychology ; Vision, Low/psychology ; Visual Acuity/physiology ; Visual Fields/physiology
Language	English
Publishing date	2015-10-06
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2050436-6
ISSN	1471-2415 ; 1471-2415
ISSN (online)	1471-2415
ISSN	1471-2415
DOI	10.1186/s12886-015-0119-7
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Article ; Online: Lifespan of COVID-19 living guideline recommendations: a survival analysis

McFarlane, Emma / Mercer, Toby / Sharp, Steve Philip / Hunter, Debra / Kelley, Kate / Glen, Fiona / Majeed, Maria

medRxiv

Abstract: Background NICE has maintained a portfolio of COVID-19 living guidelines since March 2020. Recommendations within these living guidelines are subject to continuous surveillance and updates in response to triggers. However, the lifespan of individual ... ...

Abstract	Background NICE has maintained a portfolio of COVID-19 living guidelines since March 2020. Recommendations within these living guidelines are subject to continuous surveillance and updates in response to triggers. However, the lifespan of individual living guideline recommendations and features that may impact on whether a recommendation becomes out of date sooner, is unknown. Objectives This study aimed to describe the length of time NICE COVID-19 living guideline recommendations have remained valid. Methods All guidelines within the NICE COVID-19 portfolio were included to determine the lifespan of living guideline recommendations. Data were collected on all recommendations that had been developed, undergone surveillance or updated between 1 March 2020 and 31 August 2022. Information on initial publication date, decision to update, and update publication date was extracted. Updates were labelled as major changes in evidence synthesis or minor changes without a substantial change in evidence base. Any recommendation that had not been updated or withdrawn was censored. Survival analysis (Kaplan-Meier Curve) was carried out to determine the lifespan of recommendations. Results Overall, 26 COVID-19 living guidelines and 1182 recommendations were included in the analysis. Living recommendations had median survival time of 739 days (IQR: 332, 781). Based on recommendation type, intervention recommendations had a shorter survival time (354 days, IQR 312, 775) compared to diagnosis (368 days, IQR: 328, 795), patient experience (733 days, IQR: 345, 795) and service delivery (739 days, IQR: 643, 781). Within intervention type, pharmacological recommendations had shortest survival time versus non-pharmacological recommendations [335 days (IQR: 161, 775) vs 775 days (IQR: 354, 775)]. Updates were published an average of 29.12 days following a surveillance decision. Conclusion Within living guidelines, some recommendations need to be updated sooner than others. This study outlines the value of a flexible responsive approach to surveillance within the living mode according to pace of change and expectation of update triggers.
Keywords	covid19
Language	English
Publishing date	2023-06-12
Publisher	Cold Spring Harbor Laboratory Press
Document type	Article ; Online
DOI	10.1101/2023.06.08.23291123
Database	COVID19

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Article ; Online: NICE public health guidance update.

Hulme, Johanna / Garnett, Ruth / Picton, Louise / Glen, Fiona / Leng, Gillian

Journal of public health (Oxford, England)

2018 Volume 40, Issue 3, Page(s) 667–669

MeSH term(s)	Anti-Infective Agents/therapeutic use ; Drug Resistance ; Government Agencies ; Humans ; Infection/drug therapy ; Practice Guidelines as Topic ; United Kingdom
Chemical Substances	Anti-Infective Agents
Language	English
Publishing date	2018-04-12
Publishing country	England
Document type	Journal Article
ZDB-ID	2142082-8
ISSN	1741-3850 ; 1741-3842
ISSN (online)	1741-3850
ISSN	1741-3842
DOI	10.1093/pubmed/fdy065
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Article ; Online: Impact of superior and inferior visual field loss on hazard detection in a computer-based driving test.

Glen, Fiona C / Smith, Nicholas D / Crabb, David P

The British journal of ophthalmology

2015 Volume 99, Issue 5, Page(s) 613–617

Abstract: Purpose: Binocular visual field (VF) loss is linked to driving impairment, guiding authorities to implement fitness to drive requirements for VFs. Yet, evidence is limited regarding the specific types of VF defect that impede driving. This study used a ... ...

Abstract	Purpose: Binocular visual field (VF) loss is linked to driving impairment, guiding authorities to implement fitness to drive requirements for VFs. Yet, evidence is limited regarding the specific types of VF defect that impede driving. This study used a novel gaze-contingent display to test the hypothesis that superior VF loss impacts detection of driving hazards more than inferior loss. Methods: The Hazard Perception Test (HPT) is a computer-based component of the UK examination for learner drivers. It measures the response rate for detecting hazards in a series of real-life driving films, yielding a score out of 75, calculated based on the efficiency of detecting 15 hazards. Thirty UK drivers with healthy vision completed three versions of the HPT in a random order. In two versions, a computer set-up incorporating an eye-tracker modified a simulated VF defect in the superior and inferior VFs, respectively, according to the users' real-time gaze as they completed the HPT. The other version was unmodified to measure the baseline performance. Results: Participants' mean score at baseline was 49/75 (SD=9). Mean (SD) performance fell by 18% (40(11)) when viewing films with a superior defect and 12% with an inferior defect (43(10)). These average differences were statistically significant (p<0.001; 95% CI for mean difference=1-7) CONCLUSIONS: In this study, simulated VF defects impaired the ability to detect driving hazards relative to participants' normal performances, with superior defects having more impact than inferior defects. These results could help inform the design of fairer tests of the VF component for fitness to drive.
MeSH term(s)	Accidents, Traffic/prevention & control ; Adult ; Automobile Driver Examination ; Automobile Driving ; Awareness ; Computer Simulation ; Female ; Humans ; Male ; Middle Aged ; Safety ; Vision Disorders/physiopathology ; Visual Acuity/physiology ; Visual Fields/physiology
Language	English
Publishing date	2015-05
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	80078-8
ISSN	1468-2079 ; 0007-1161
ISSN (online)	1468-2079
ISSN	0007-1161
DOI	10.1136/bjophthalmol-2014-305932
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Article ; Online: Managing the evidence infodemic: Automation approaches used for developing NICE COVID-19 living guidelines

Sood, Mariam R / Sharp, Steve / McFarlane, Emma / Willans, Robert / Hopkins, Kathryn / Karpusheff, Justine / Glen, Fiona

medRxiv

Abstract: Background and Objectives The National Institute for Health and Care Excellence (NICE) produces evidence-based guidance and advice for health, public health and social care practitioners in England and Wales. Between March 2020 and March 2022, NICE ... ...

Abstract	Background and Objectives The National Institute for Health and Care Excellence (NICE) produces evidence-based guidance and advice for health, public health and social care practitioners in England and Wales. Between March 2020 and March 2022, NICE produced 24 COVID-19 guidelines to support healthcare workers during the COVID-19 pandemic. This article outlines three automation strategies NICE utilised to facilitate faster processing of evidence on COVID-19 and describes the value of those approaches when there is an increasing volume of evidence and demand on resources. Study Design and Setting Text classification using machine learning, and regular expression-based pattern matching were used to automate screening of literature search results. Relevant clinical trials were tracked by automated monitoring of clinical trial databases and Pubmed. Results The strategies discussed here brought considerable efficiencies in the processing time without impacting on quality compared to equivalent manual efforts. Additionally, the paper illustrates how to incorporate automation into established processes of the evidence management pipeline. Conclusions We have demonstrated through testing and use in live guideline development and surveillance that these are effective and low risk approaches at managing high volumes of evidence.
Keywords	covid19
Language	English
Publishing date	2022-06-16
Publisher	Cold Spring Harbor Laboratory Press
Document type	Article ; Online
DOI	10.1101/2022.06.13.22276242
Database	COVID19

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Article ; Online: 'I didn't see that coming': simulated visual fields and driving hazard perception test performance.

Glen, Fiona C / Smith, Nicholas D / Jones, Lee / Crabb, David P

Clinical & experimental optometry

2016 Volume 99, Issue 5, Page(s) 469–475

Abstract: Background: Evidence is limited regarding specific types of visual field loss associated with unsafe driving. We use novel gaze-contingent software to examine the effect of simulated visual field loss on computer-based driving hazard detection with the ... ...

Abstract	Background: Evidence is limited regarding specific types of visual field loss associated with unsafe driving. We use novel gaze-contingent software to examine the effect of simulated visual field loss on computer-based driving hazard detection with the specific aim of testing the impact of scotomata located to the right and left of fixation. Methods: The 'hazard perception test' is a component of the UK driving licence examination, which measures speed of detecting 15 different hazards in a series of real-life driving films. We have developed a novel eye-tracking and computer set up capable of generating a realistic gaze-contingent scotoma simulation (GazeSS) overlaid on film content. Thirty drivers with healthy vision completed three versions of the hazard perception test in a repeated measures experiment. In two versions, GazeSS simulated a scotoma in the binocular field of view to the left or right of fixation. A third version was unmodified to establish baseline performance. Results: Participants' mean baseline hazard perception test score was 51 ± 7 (out of 75). This reduced to 46 ± 9 and 46 ± 11 when completing the task with a binocular visual field defect located to the left and right of fixation, respectively. While the main effect of simulated visual field loss on performance was statistically significant (p = 0.007), there were no average differences in the experimental conditions where a scotoma was located in the binocular visual field to the right or left of fixation. Conclusion: Simulated visual field loss impairs driving hazard detection on a computer-based test. There was no statistically significant difference in average performance when the simulated scotoma was located to the right or left of fixation of the binocular visual field, but certain types of hazard caused more difficulties than others.
MeSH term(s)	Adult ; Automobile Driving ; Computer Simulation ; Humans ; Licensure ; Visual Fields ; Visual Perception
Language	English
Publishing date	2016-09
Publishing country	Australia
Document type	Journal Article
ZDB-ID	639275-1
ISSN	1444-0938 ; 0816-4622
ISSN (online)	1444-0938
ISSN	0816-4622
DOI	10.1111/cxo.12435
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