A patient-centred and multi-stakeholder co-designed observational prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphataemia (XLH).

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.

Real-world tyrosine kinase inhibitor treatment pathways, monitoring patterns and responses in patients with chronic myeloid leukaemia in the United Kingdom: the UK TARGET CML study.

Management of chronic myeloid leukaemia (CML) has recently undergone dramatic changes, prompting the European LeukemiaNet (ELN) to issue recommendations in 2013; however, it remains unclear whether real-world CML management is consistent with these goals. We report results of UK TARGET CML, a retrospective observational study of 257 patients with chronic-phase CML who had been prescribed a first-line TKI between 2013 and 2017, most of whom received first-line imatinib (n = 203). Although 44% of patients required ≥1 change of TKI, these real-world data revealed that molecular assessments were frequently missed, 23% of patients with ELN-defined treatment failure did not switch TKI, and kinase domain mutation analysis was performed in only 49% of patients who switched TKI for resistance.

Evidence-based policy making for health promotion to reduce the burden of non-communicable diseases in Moldova.

The Republic of Moldova faces several concurrent health challenges most notably an increase in chronic non-communicable diseases, spiralling health care costs and widening health inequalities. To accelerate progress in their resolution there is a need for new and innovative health promotion and behaviour change communication interventions. The Ministry of Health, Labour and Social Protection in collaboration with the newly created National Agency for Public Health held a conference on the occasion of the on 14th March 2018 in which national and invited international experts exchanged their views on (1) best practice examples of behaviour change interventions, health promotion activities and lessons learned from the UK and elsewhere; and (2) possible ways forward for Moldova to implement cost-effective and evidence-based intersectoral health promotion programmes.

A retrospective observational study of early experiences of vedolizumab treatment for inflammatory bowel disease in the UK: The REVIVE study.

Results from clinical trials show that vedolizumab is an efficacious treatment for inflammatory bowel disease, namely Crohn's disease (CD) and ulcerative colitis (UC). However, there is limited evidence from real-world clinical practice, especially on early clinical experiences in the UK.To describe real-world early experiences of vedolizumab to treat CD and UC in the UK.

Opportunities for antimicrobial stewardship in patients with acute bacterial skin and skin structure infections who are unsuitable for beta-lactam antibiotics: a multicenter prospective observational study.

Purpose: The objective of this prospective, observational study was to describe the treatment, severity assessment and healthcare resources required for management of patients with acute bacterial skin and skin structure infections who were unsuitable for beta-lactam antibiotic treatments.

Methods: Patients were enrolled across five secondary care National Health Service hospitals. Eligible patients had a diagnosis of acute bacterial skin and skin structure infection and were considered unsuitable for beta-lactam antibiotics (e.

Self-Monitoring Symptoms in Glaucoma: A Feasibility Study of a Web-Based Diary Tool.

. Glaucoma patients annually spend only a few hours in an eye clinic but spend more than 5000 waking hours engaged in everything else. We propose that patients could self-monitor changes in visual symptoms providing valuable between clinic information; we test the hypothesis that this is feasible using a web-based diary tool.

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

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.

Living with glaucoma: a qualitative study of functional implications and patients' coping behaviours.

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.

Impact of superior and inferior visual field loss on hazard detection in a computer-based driving test.

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.

Using eye tracking to assess reading performance in patients with glaucoma: a within-person study.

Reading is often cited as a demanding task for patients with glaucomatous visual field (VF) loss, yet reading speed varies widely between patients and does not appear to be predicted by standard visual function measures. This within-person study aimed to investigate reading duration and eye movements when reading short passages of text in a patient's worse eye (most VF damage) when compared to their better eye (least VF damage). Reading duration and saccade rate were significantly different on average in the worse eye when compared to the better eye (P < 0.

A qualitative investigation into patients' views on visual field testing for glaucoma monitoring.

Objectives: To investigate the views and experiences of patients regarding their glaucoma follow-up, particularly towards the type and frequency of visual field (VF) testing.

Design: A qualitative investigation using focus groups. The group discussion used broad open questions around the topics in a prompt guide relating to experiences of glaucoma follow-up, and in particular, VF monitoring.

Saccadic eye movements and face recognition performance in patients with central glaucomatous visual field defects.

Patients with more advanced glaucoma are likely to experience problems with everyday visual tasks such as face recognition. However, some patients still perform well at face recognition despite their visual field (VF) defects. This study investigated whether certain eye movement patterns are associated with better performance in the Cambridge Face Memory Test.

How does glaucoma look?: patient perception of visual field loss.

Objective: To explore patient perception of vision loss in glaucoma and, specifically, to test the hypothesis that patients do not recognize their impairment as a black tunnel effect or as black patches in their field of view.

Design: Clinic-based cross-sectional study.

Participants: Fifty patients (age range, 52-82 years) with visual acuity better than 20/30 and with a range of glaucomatous visual field (VF) defects in both eyes, excluding those with very advanced disease (perimetrically blind).

Eye movements in patients with glaucoma when viewing images of everyday scenes.

This study tests the hypothesis that patients with bilateral glaucoma exhibit different eye movements compared to normally-sighted people when viewing computer displayed photographs of everyday scenes. Thirty glaucomatous patients and 30 age-related controls with normal vision viewed images on a computer monitor whilst eye movements were simultaneously recorded using an eye tracking system. The patients demonstrated a significant reduction in the average number of saccades compared to controls (P = 0.

Eye movements during visual search in patients with glaucoma.

Background: Glaucoma has been shown to lead to disability in many daily tasks including visual search. This study aims to determine whether the saccadic eye movements of people with glaucoma differ from those of people with normal vision, and to investigate the association between eye movements and impaired visual search.

Methods: Forty patients (mean age: 67 [SD: 9] years) with a range of glaucomatous visual field (VF) defects in both eyes (mean best eye mean deviation [MD]: -5.

Glaucoma and reading: exploring the effects of contrast lowering of text.

Purpose: Past research has not fully ascertained the extent to which people with glaucoma have difficulties with reading. This study measures change in reading speed when letter contrast is reduced, to test the hypothesis that patients with glaucoma are more sensitive to letter contrast than age-similar visually healthy people.

Methods: Fifty-three patients with glaucoma [mean age: 66 years (standard deviation: 9)] with bilateral visual field (VF) defects and 40 age-similar visually healthy control subjects [mean age: 69 (standard deviation: 8) years] had reading speeds measured using sets of fixed size, non-scrolling texts on a computer setup that incorporated an eye tracking device.

Do patients with glaucoma have difficulty recognizing faces?

Purpose: To compare face recognition performance of glaucomatous patients with age-similar visually healthy people.

Methods: Percentage of correctly identified faces in the Cambridge Face Memory Test was assessed in glaucomatous patients (n = 54; mean age = 69) with a range of visual field (VF) defects and visually healthy controls (n = 41; mean age = 67). All participants underwent cognitive and visual assessment (binocular visual acuity [BVA], contrast sensitivity [CS], and Humphrey VFs, both 10-2 and 24-2) and had BVA of at least 0.

The direction of research into visual disability and quality of life in glaucoma.

Background: Glaucoma will undoubtedly impact on a person's ability to function as they go about their day-to-day life. The purpose of this study is to investigate the amount of published knowledge in quality of life (QoL) and visual disability studies for glaucoma, and make comparisons with similar research in other chronic conditions.

Methods: A systematic literature search of the Global Health, EMBASE Psychiatry and MEDLINE databases.

Fidelity and over-wintering of sea turtles.

While fidelity to breeding sites is well demonstrated in marine turtles, emerging knowledge of migratory routes and key foraging sites is of limited conservation value unless levels of fidelity can be established. We tracked green (Chelonia mydas, n=10) and loggerhead (Caretta caretta, n=10) turtles during their post-nesting migration from the island of Cyprus to their foraging grounds. After intervals of 2-5 years, five of these females were recaptured at the nesting beach and tracked for a second migration.

Island-finding ability of marine turtles.

Green turtles (Chelonia mydas) swim from foraging grounds along the Brazilian coast to Ascension Island to nest, over 2200 km distant in the middle of the equatorial Atlantic. To test the hypothesis that turtles use wind-borne cues to locate Ascension Island we found turtles that had just completed nesting and then moved three individuals 50 km northwest (downwind) of the island and three individuals 50 km southeast (upwind). Their subsequent movements were tracked by satellite.