10 research outputs found
IBD BioResource: an open-access platform of 25 000 patients to accelerate research in Crohn's and Colitis.
An alliance of clinicians, academics, research nurses, funders, coordinators, programmers and, most importantly, patients has come together in the UK to deliver a powerful new platform to accelerate Crohn’s and colitis research – the Inflammatory Bowel Disease (IBD) BioResource. As part of the NIHR BioResource for translational research, 25,000 patients in over 90 hospitals UK-wide have signed up since we launched in January 2016 (Fig 1). All have detailed phenotypes databased including Montreal classification1, treatment response history (updated annually), surgical history and comorbidities (IBD BioResource panel descriptive, Clinical data collection sheet and Health and Lifestyle questionnaire). Serum, plasma and DNA samples are banked; and genome-wide genetic profiling undertaken. Participants’ data and samples can be studied, and they themselves surveyed or recalled for resampling or downstream studies (see Fig 2). Critically such studies can be lead by any UK or overseas investigator whether from the worlds of clinical research, pharmacovigilance, science or industry
An experimental investigation of existential concerns in point-of-care testing for cardiovascular disease using a terror management theory framework
Recent research in Terror Management Theory (TMT) has found that mortality reminders below conscious awareness can lead to avoidant responses towards cancer-screening. Following this, the current research programme used a TMT framework to evaluate if mortality reminders could result in analogous responses towards a novel device for indicating Cardiovascular Disease (CVD) risk; the ―CVD Risk Biochip‖. Three central studies (Studies 1, 2 and 4) were designed to examine if various mortality reminders would elicit more avoidant responses towards the ―CVD Risk Biochip‖ than control topics. The third of these studies (Study 4) also investigated whether or not the nature of the device itself served to dissociate an individual towards CVD, thereby moderating existential concerns. An additional study (Study 3) examined whether or not one of the mortality reminders from the first two studies (Heart Attack Salience) leads to the suppression of death-related thoughts. When taken together, the results of these studies demonstrate that devices like the CVD Risk Biochip may have a beneficial effect on the potential uptake of screening behaviours generally and highlight the potential for cross-cultural variability in responses towards TMT methodologies. The findings of the programme also suggest some unique recommendations for the future study of TMT, including the performance of initial qualitative investigations of the cultural worldviews of a particular cohort before examining TMT processes and the necessity of controlling for the confounding effects of word frequency and word ambiguity in future "death-thought accessibility" research
Impact of prosthetics and orthotics services on the quality of life of people with disabilities in India
The aim of this study was to investigate the thoughts and feelings of the person who received a prosthesis or orthosis rather than evaluating the actual device which was prescibed and fitted. It was eveident from the study that people with disabilities find it challenging to access prosthetics and orthotics services. People with disabilities can have a better quality of life with an orthosis or prosthesis which leads to empowerment, inclusion and participation
Use of stance control knee-ankle-foot orthoses : a review of the literature
The use of stance control orthotic knee joints are becoming increasingly popular as unlike locked knee-ankle-foot orthoses, these joints allow the limb to swing freely in swing phase while providing stance phase stability, thus aiming to promote a more physiological and energy efficient gait. It is of paramount importance that all aspects of this technology is monitored and evaluated as the demand for evidence based practice and cost effective rehabilitation increases. A robust and thorough literature review was conducted to retrieve all articles which evaluated the use of stance control orthotic knee joints. All relevant databases were searched, including The Knowledge Network, ProQuest, Web of Knowledge, RECAL Legacy, PubMed and Engineering Village. Papers were selected for review if they addressed the use and effectiveness of commercially available stance control orthotic knee joints and included participant(s) trialling the SCKAFO. A total of 11 publications were reviewed and the following questions were developed and answered according to the best available evidence: 1. The effect SCKAFO (stance control knee-ankle-foot orthoses) systems have on kinetic and kinematic gait parameters 2. The effect SCKAFO systems have on the temporal and spatial parameters of gait 3. The effect SCKAFO systems have on the cardiopulmonary and metabolic cost of walking. 4. The effect SCKAFO systems have on muscle power/generation 5. Patient’s perceptions/ compliance of SCKAFO systems Although current research is limited and lacks in methodological quality the evidence available does, on a whole, indicate a positive benefit in the use of SCKAFOs. This is with respect to increased knee flexion during swing phase resulting in sufficient ground clearance, decreased compensatory movements to facilitate swing phase clearance and improved temporal and spatial gait parameters. With the right methodological approach, the benefits of using a SCKAFO system can be evidenced and the research more effectively converted into clinical practice
The effect of alignment on the balance and confidence of trans-femoral prosthesis users : a literature review
The aim of this review was to establish current protocols for trans-femoral alignment and appropriate balance and confidence outcome measurements. Optimal alignment and repeatability may lead to more stable and functional gait
The effect of prefabricated wrist-hand orthoses on performing activities of daily living
Wrist-hand orthoses (WHOs) are commonly prescribed to manage the functional deficit associated with the wrist as a result of rheumatoid changes. The common presentation of the wrist is one of flexion and radial deviation with ulnar deviation of the fingers. This wrist position Results in altered biomechanics compromising hand function during activities of daily living (ADL). A paucity of evidence exists which suggests that improvements in ADL with WHO use are very task specific. Using normal subjects, and thus in the absence of pain as a limiting factor, the impact of ten WHOs on performing five ADLs tasks was investigated. The tasks were selected to represent common grip patterns and tests were performed with and without WHOs by right-handed, females, aged 20-50 years over a ten week period. The time taken to complete each task was recorded and a wrist goniometer, elbow goniometer and a forearm torsiometer were used to measure joint motion. Results show that, although orthoses may restrict the motion required to perform a task, participants do not use the full range of motion which the orthoses permit. The altered wrist position measured may be attributable to a modified method of performing the task or to a necessary change in grip pattern, resulting in an increased time in task performance. The effect of WHO use on ADL is task specific and may initially impede function. This could have an effect on WHO compliance if there appears to be no immediate benefits. This orthotic effect may be related to restriction of wrist motion or an inability to achieve the necessary grip patterns due to the designs of the orthoses
The effect of prefabricated wrist-hand orthoses on grip strength
Prefabricated wrist-hand orthoses (WHOs) are commonly prescribed to manage the functional deficit and compromised grip strength as a result of rheumatoid changes. It is thought that an orthosis which improves wrist extension, reduces synovitis and increases the mechanical advantage of the flexor muscles will improve hand function. Previous studies report an initial reduction in grip strength with WHO use which may increase following prolonged use. Using normal subjects, and thus in the absence of pain as a limiting factor, the impact of ten WHOs on grip strength was measured using a Jamar dynamometer. Tests were performed with and without WHOs by right-handed, female subjects, aged 20-50 years over a ten week period. During each test, a wrist goniometer and a forearm torsiometer were used to measure wrist joint position when maximum grip strength was achieved. The majority of participants achieved maximum grip strength with no orthosis at 30° extension. All the orthoses reduced initial grip strength but surprisingly the restriction of wrist extension did not appear to contribute in a significant way to this. Reduction in grip must therefore also be attributable to WHO design characteristics or the quality of fit. The authors recognize the need for research into the long term effect of WHOs on grip strength. However if grip is initially adversely affected, patients may be unlikely to persevere with treatment thereby negating all therapeutic benefits. In studies investigating patient opinions on WHO use, it was a stable wrist rather than a stronger grip reported to have facilitated task performance. This may explain why orthoses that interfere with maximum grip strength can improve functional task performance. Therefore while it is important to measure grip strength, it is only one factor to be considered when evaluating the efficacy of WHOs
The impact of illness and the impact of school closure on social contact patterns.
BACKGROUND: Mathematical models, based on data describing normal patterns of social mixing, are used to understand epidemics in order to predict patterns of disease spread and plan interventions and responses. However, individuals who are ill show behavioural changes that affect their social mixing patterns and predictive models should take into account these changes if they are to be effective. OBJECTIVES: To describe and quantify the changes in (1) social contact behaviour experienced by individuals when they are ill with pandemic H1N1 influenza (swine flu) and (2) mixing patterns of school children that take place as a result of swine flu-related school closures. METHODS: For the first part of the study, a self-completed questionnaire-based study was carried out in the autumn/winter of 2009-10. The study population was individuals who had been diagnosed with swine flu and who received a swine flu antiviral prescription from an antiviral distribution centre (ADC). It consisted of an initial survey to be filled in when participants were symptomatic with swine flu and a follow-up survey to be filled in when they had recovered. Each part of the questionnaire had two sections: patient details and a contact diary. The second part of the study was adapted to quantify the difference in mixing patterns of pupils between the school term and the half-term holiday as school closures did not occur during the study period. Eight schools participated and questionnaire packs were distributed to them, containing two surveys: one to be filled in during the school term and one during the spring half-term holiday. RESULTS: For the patient study, approximately 3800 surveys were distributed by 31 ADCs. Overall, 317 responses to the initial survey were received and 179 participants returned the follow-up survey. For all types of a contact, except contacts made at home, there were highly significant differences in contact behaviour (Wilcoxon signed-rank test, p < 0.001). Individuals made substantially fewer contacts when they were ill than when they were well. Analysis showed that returning to work was the most significant predictor of increased numbers of contacts. Also, the greater the change in the number of symptoms reported, the greater the change in the number of contacts. For the school study, approximately 1100 questionnaire packs were distributed and 134 responses were received, with 119 paired contact diaries. Pupils reported on average 18.51 contacts each day during term time and 9.24 during the half-term holiday - a reduction of over 50% and a highly significant change (Wilcoxon signed-rank test, p < 0.0001). CONCLUSIONS: The evidence from this study suggests that ill individuals make substantial changes to their social contact patterns. These changes are strongly linked to absence from work and the severity of the reported illness. Epidemiological modellers should therefore consider the implications of illness-related behavioural changes on model predictions. Future studies to measure the extent of behavioural change in a broader cross-section of infected cases could be valuable, along with more detailed studies of the social contact patterns of school children, focusing on differences between school terms and school holidays
Methods of prediction and prevention of pre-eclampsia: Systematic reviews of accuracy and effectiveness literature with economic modelling
© Queen's Printer and Controller of HMSO 2008. This monograph may be freely reproduced for the purposes of private research and study and may be included in professional journals provided
that suitable acknowledgement is made and the reproduction is not associated with any form of advertising.Objectives: To investigate the accuracy of predictive tests for pre-eclampsia and the effectiveness of preventative interventions for pre-eclampsia. Also to assess the cost-effectiveness of strategies (test-intervention combinations) to predict and prevent pre-eclampsia. Data sources: Major electronic databases were searched to January 2005 at least. Review methods: Systematic reviews were carried out for test accuracy and effectiveness. Quality assessment was carried out using standard tools. For test accuracy, meta-analyses used a bivariate approach. Effectiveness reviews were conducted under the auspices of the Cochrane Pregnancy and Childbirth Group and used standard Cochrane review methods. The economic evaluation was from an NHS perspective and used a decision tree model. Results: For the 27 tests reviewed, the quality of included studies was generally poor. Some tests appeared to have high specificity, but at the expense of compromised sensitivity. Tests that reached specificities above 90% were body mass index > 34, α-foetoprotein and uterine artery Doppler (bilateral notching). The only Doppler test with a sensitivity of over 60% was resistance index and combinations of indices. A few tests not commonly found in routine practice, such as kallikreinuria and SDS-PAGE proteinuria, seemed to offer the promise of high sensitivity, without compromising specificity, but these would require further investigation. For the 16 effectiveness reviews, the quality of included studies was variable. The largest review was of antiplatelet agents, primarily low-dose aspirin, and included 51 trials (36,500 women). This was the only review where the intervention was shown to prevent both preeclampsia and its consequences for the baby. Calcium supplementation also reduced the risk of preeclampsia, but with some uncertainty about the impact on outcomes for the baby. The only other intervention associated with a reduction in RR of pre-eclampsia was rest at home, with or without a nutritional supplement, for women with normal blood pressure. However, this review included just two small trials and its results should be interpreted with caution. The cost of most of the tests was modest, ranging from £5 for blood tests such as serum uric acid to approximately £20 for Doppler tests. Similarly, the cost of most interventions was also modest. In contrast, the best estimate of additional average cost associated with an average case of pre-eclampsia was high at approximately £9000. The results of the modelling revealed that prior testing with the test accuracy sensitivities and specificities identified appeared to offer little as a way of improving cost-effectiveness. Based on the evidence reviewed, none of the tests appeared sufficiently accurate to be clinically useful and the results of the model favoured no-test/treat-all strategies. Rest at home without any initial testing appeared to be the most cost-effective 'test-treatment' combination. Calcium supplementation to all women, without any initial testing, appeared to be the second most cost-effective. The economic model provided little support that any form of Doppler test has sufficiently high sensitivity and specificity to be cost-effective for the early identification of pre-eclampsia. It also suggested that the pattern of cost-effectiveness was no different in high-risk mothers than the low-risk mothers considered in the base case. Conclusions: The tests evaluated are not sufficiently accurate, in our opinion, to suggest their routine use in clinical practice. Calcium and antiplatelet agents, primarily low-dose aspirin, were the interventions shown to prevent pre-eclampsia. The most cost-effective approach to reducing pre-eclampsia is likely to be the provision of an effective, affordable and safe intervention applied to all mothers without prior testing to assess levels of risk. It is probably premature to suggest the implementation of a treat-all intervention strategy at present, however the feasibility and acceptability of this to women could be explored. Rigorous evaluation is needed of tests with modest cost whose initial assessments suggest that they may have high levels of both sensitivity and specificity. Similarly, there is a need for high-quality, adequately powered randomised controlled trials to investigate whether interventions such as advice to rest are indeed effective in reducing pre-eclampsia. In future, an economic model should be developed that considers not just pre-eclampsia, but other related outcomes, particularly those relevant to the infant such as perinatal death, preterm birth and small for gestational age. Such a modelling project should make provision for primary data collection on the safety of interventions and their associated costs.National Institute for Health Researc
