scholarly journals UNICORNS: Uveitis in childhood prospective national cohort study protocol

F1000Research ◽  
2020 ◽  
Vol 9 ◽  
pp. 1196
Author(s):  
Salomey Kellett ◽  
Jugnoo S Rahi ◽  
Andrew D. Dick ◽  
Rachel Knowles ◽  
Valerija Tadić ◽  
...  

Background: Childhood uveitis is a rare inflammatory eye disease which is typically chronic, relapsing-remitting in nature, with an uncertain aetiology (idiopathic). Visual loss occurs due to structural damage caused by uncontrolled inflammation. Understanding of the determinants of long term outcome is lacking, including the predictors of therapeutic response or how to define disease control. Aims: To describe disease natural history and outcomes amongst a nationally representative group of children with non-infectious uveitis, describe the impact of disease course on quality of life for both child and family, and identify determinants of adverse visual, structural and developmental outcomes. Methods: UNICORNS is a prospective longitudinal multicentre cohort study of children newly diagnosed with uveitis about whom a core minimum clinical dataset will be collected systematically. Participants and their families will also complete patient-reported outcome measures annually from recruitment. The association of patient (child- and treatment- dependent) characteristics with outcome will be investigated using logistic and ordinal regression models which incorporate adjustment for within-child correspondence between eyes for those with bilateral disease and repeated outcomes measurement.  Discussion: Through this population based, prospective longitudinal study of childhood uveitis, we will describe the characteristics of childhood onset disease. Early (1-2 years following diagnosis) outcomes will be described in the first instance, and through the creation of a national inception cohort, longer term studies will be enabled of outcome for affected children and families.

2017 ◽  
Vol 81 (4) ◽  
pp. 476-484 ◽  
Author(s):  
An-Hsun Chou ◽  
Tien-Hsing Chen ◽  
Chun-Yu Chen ◽  
Shao-Wei Chen ◽  
Chao-Wei Lee ◽  
...  

2017 ◽  
Vol 31 (6) ◽  
pp. 530-539 ◽  
Author(s):  
Véronique R. M. Moulaert ◽  
Caroline M. van Heugten ◽  
Ton P. M. Gorgels ◽  
Derick T. Wade ◽  
Jeanine A. Verbunt

Background. A cardiac arrest can lead to hypoxic brain injury, which can affect all levels of functioning. Objective. To investigate 1-year outcome and the pattern of recovery after surviving a cardiac arrest. Methods. This was a multicenter, prospective longitudinal cohort study with 1 year of follow-up (measurements 2 weeks, 3 months, 1 year). On function level, physical/cardiac function (New York Heart Association Classification), cognition (Cognitive Log [Cog-log], Cognitive Failures Questionnaire), emotional functioning (Hospital Anxiety and Depression Scale, Impact of Event Scale), and fatigue (Fatigue Severity Scale) were assessed. In addition, level of activities (Frenchay Activities Index, FAI), participation (Community Integration Questionnaire [CIQ] and return to work), and quality of life (EuroQol 5D, EuroQol Visual Analogue Scale, SF-36, Quality of Life after Brain Injury) were measured. Results. In this cohort, 141 cardiac arrest survivors were included. At 1 year, 14 (13%) survivors scored below cutoff on the Cog-log. Both anxiety and depression were present in 16 (15%) survivors, 29 (28%) experienced posttraumatic stress symptoms and 55 (52%), severe fatigue. Scores on the FAI and the CIQ were, on average, respectively 96% and 92% of the prearrest scores. Of those previously working, 41 (72%) had returned to work. Most recovery of cognitive function and quality of life occurred within the first 3 months, with further improvement on some domains of quality of life up to 12 months. Conclusions. Overall, long-term outcome in terms of activities, participation, and quality of life after cardiac arrest is reassuring. Nevertheless, fatigue is common; problems with cognition and emotions occur; and return to work can be at risk.


2018 ◽  
Vol 44 (2) ◽  
pp. 146-150 ◽  
Author(s):  
Thomas F. M. Yeoman ◽  
Oliver Stone ◽  
Paul J. Jenkins ◽  
Jane E. McEachan

The aim of this study was to investigate the long-term outcome of simple trapeziectomy by a single surgeon and to compare this with pre-operative function. Two hundred and five patients completed the shortened disabilities of the arm, shoulder and hand questionnaire (QuickDASH) and the EuroQoL five-dimensional questionnaire (EQ-5D) scores at a mean of 8.2 (range 3.5–17) years after simple trapeziectomy. There were no pre-operative scores available, so case controls were selected from our prospective database to compare pre- and post-operative patient-reported outcome measures. The mean QuickDASH score of the post-operative matched group was 37 (SD 17.0) and the mean EQ-5D was 0.56 (SD 0.31). The mean QuickDASH score of the pre-operative group was 54 (SD 17.0). The mean difference in QuickDASH between the pre- and post-operative groups was 17 (95% CI: 8 to 26, p = 0.0003). This study demonstrated a significant and sustained improvement in patient-reported function after simple trapeziectomy. It supports that simple trapeziectomy is a simple, safe and effective treatment for advanced trapeziometacarpal joint arthritis. Level of evidence: IV


Author(s):  
Elizabeth B. Owens ◽  
Christine A. Zalecki ◽  
Stephen P. Hinshaw

We describe the initiation and evolution of the Berkeley Girls with ADHD Longitudinal Study, an ongoing prospective, longitudinal study of 140 girls diagnosed with ADHD when they were children during the late 1990s, as well as 88 matched comparison girls. Study rationale, design, procedures, recruitment strategy, and measures are described in detail. Primary psychosocial and neuropsychological findings during childhood, adolescence, and adulthood are summarized. Our initial findings regarding predictors of outcome are presented. Results are discussed in light of the existing literature regarding long-term outcome among children with ADHD. Overall, during childhood, adolescence, and young adulthood, in almost every psychosocial and neuropsychological domain we investigated, females with ADHD show sizable disadvantages and deficits relative to females without ADHD. Our findings affirm the public health significance of ADHD in girls, given the likelihood of persisting symptoms and (especially) impairment in crucial domains over the long-term.


2020 ◽  
Vol 20 (9) ◽  
pp. S125
Author(s):  
Alexander Fletcher-Sandersjöö ◽  
Erik Edström ◽  
Åsa Kuntze-Söderqvist ◽  
Per Grane ◽  
Adrian Elmi Terander

Author(s):  
Lauriane Pericart ◽  
Laurent Fauchier ◽  
Louis Bernard ◽  
Anne Brunet Bernard ◽  
Alain Mirza ◽  
...  

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