12 research outputs found

    Health, education, and social care provision after diagnosis of childhood visual disability

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    Aim: To investigate the health, education, and social care provision for children newly diagnosed with visual disability.Method: This was a national prospective study, the British Childhood Visual Impairment and Blindness Study 2 (BCVIS2), ascertaining new diagnoses of visual impairment or severe visual impairment and blindness (SVIBL), or equivalent vi-sion. Data collection was performed by managing clinicians up to 1-year follow-up, and included health and developmental needs, and health, education, and social care provision.Results: BCVIS2 identified 784 children newly diagnosed with visual impairment/SVIBL (313 with visual impairment, 471 with SVIBL). Most children had associated systemic disorders (559 [71%], 167 [54%] with visual impairment, and 392 [84%] with SVIBL). Care from multidisciplinary teams was provided for 549 children (70%). Two-thirds (515) had not received an Education, Health, and Care Plan (EHCP). Fewer children with visual impairment had seen a specialist teacher (SVIBL 35%, visual impairment 28%, χ2p < 0.001), or had an EHCP (11% vs 7%, χ2p < 0 . 01).Interpretation: Families need additional support from managing clinicians to access recommended complex interventions such as the use of multidisciplinary teams and educational support. This need is pressing, as the population of children with visual impairment/SVIBL is expected to grow in size and complexity.This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited

    Finishing the euchromatic sequence of the human genome

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    The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead

    “I’d never have that operation again” – a mixed-methods study on how patients react to adverse outcomes following foot and ankle surgery

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    Background: Adverse outcomes arising from foot and ankle surgery, including lack of pain relief, increased disability and perioperative complications are infrequent but inevitable. This mixed-methods study aims to explore the impact of adverse outcomes on patients following nonemergent foot and ankle surgery. Methods: Patients who underwent foot and ankle surgery over a two-year period were invited to participate in this study if they reported an adverse outcome. Qualitative assessment consisted of individual semi-structured interviews, designed to explore the decision they made to have surgery and the impact of the outcome after surgery. Quantitative assessment was performed using questionnaires on demographics, current analgesia, foot pain, health-related quality of life, psychological health, and regret. Results: Twelve participants (eight women) consented for inclusion in this study. Current foot pain was high in 10 participants, five met the criteria for central sensitisation syndrome and two had clinically significant pain catastrophising. Most participants regretted their decision to have surgery. The three major themes identified were expectations, communication, and alternatives. Conclusions: Self-reported adverse outcomes following foot and ankle surgery were prevalent and participants in this study consistently complained of persistent pain. Regret was common and reasons cited for their adverse outcomes centred around the feelings of inadequate communication and failure to meet expectations.</p

    Pain catastrophising, body mass index and depressive symptoms are associated with pain severity in tertiary referral orthopaedic foot/ankle patients

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    Introduction: Patients with chronic foot/ankle pain are often referred for orthopaedic assessment. Psychological vulnerabilities influence pain states (including foot and ankle), therefore this study aimed to establish the prevalence and relative importance of compromised psychological health to perceived foot/ankle pain severity in people referred to an orthopaedic foot and ankle clinic with non-urgent presentations. Methods: Patients with triaged non-urgent foot/ankle referrals to the Department of Orthopaedics at Gold Coast University Hospital were recruited over a 12-month period and completed the Manchester-Oxford Foot and Ankle Questionnaire which was the primary measure. Participants also completed questionnaires assessing their anthropometric, demographic and health characteristics (Self-Administered Comorbidity Questionnaire) as well as measures of health-related quality of life (EuroQol-5-Dimensions-5-Level Questionnaire and EQ Visual Analogue Scale) and psychological health (Center for Epidemiological Studies-Depression scale, Pain Catastrophizing Scale and Central Sensitization Inventory). Descriptive statistics were used to summarise participant characteristics and a hierarchical multiple linear regression was employed to establish the extent to which psychological variables explain additional variance in foot/ankle pain severity beyond the effects of participant characteristics (age, sex, body mass index (BMI)). Results: One hundred and seventy-two adults were recruited ((64.0% female), median (IQR) age 60.9 (17.7) years and BMI 27.6 (7.5) kg/m2). Specific psychological comorbidities were prevalent including depressive symptoms (48%), central sensitisation (38%) and pain catastrophising (24%). Age, sex and BMI accounted for 11.7% of the variance in MOXFQ-index and psychological variables accounted for an additional 28.2%. Pain catastrophising was the most significant independent predictor of foot/ankle pain severity (accounting for 14.4% of variance), followed by BMI (10.7%) and depressive symptoms (2.3%). Conclusions: This study demonstrated that specific psychological comorbidities and increased BMI are common in this cohort and that these factors are associated with the symptoms for which patients are seeking orthopaedic assessment. This knowledge should prompt clinicians to routinely consider the psychosocial components of patient presentations and develop non-operative and pre-operative treatment strategies which consider these factors with the goal of improving overall patient outcomes.</p

    Factors influencing diabetes-related foot ulcer healing in Australian adults : a prospective cohort study

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    Objective: Diabetes-related foot ulceration (DFU) is a common limb-threatening condition, which is complex and subsequently challenging to manage. The aim of this study was to determine the contribution of a range of clinical and social factors to the healing of diabetes-related foot ulceration in an Australian population. Research design and methods: This was a prospective cohort study of individuals with diabetes-related foot ulceration (DFU). Age, sex, medical history, medications, dietary supplementation (e.g. vitamin C intake) and smoking history were elicited at baseline. The index of relative socio-economic disadvantage (IRSD) was calculated. The Australian Eating Survey and International Physical Activity Questionnaire-short were administered. Wound history, size, grade, time to healing and infection were captured and monitored over 6 months. Logistic regression was performed to determine the relationship between healing and diet quality, toe systolic pressure, wound size at, IRSD, infection and previous amputation. Results: A total of 117 participants were included. The majority were male n = 96 (82%), socio-economically disadvantaged (mean IRSD 965, SD 60), and obese (BMI 36 kg/m2, SD 11) with a long history of diabetes (20 years, SD 11). Wounds were predominantly neuropathic (n = 85, 73%) and classified 1A (n = 63, 54%) on the University of Texas wound classification system with few infections (n = 23, 16%). Dietary supplementation was associated with 4.36 increased odds of healing (95% 1.28–14.84, p = 0.02), and greater levels of socio-economic advantage were also associated with increased odds of healing (OR 1.01, 95% CI 1.01–1.02, p = 0.03). Conclusions: In this cohort study of predominantly neuropathic, non-infected DFU, individuals who had greater levels of socio-economic advantage had significantly greater odds of DFU healing. Diet quality was poor in most participants, with individuals taking supplementation significantly more likely to heal

    Understanding the workforce needs of health and social care services for people living with frailty: a scoping review protocol

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    Why is this review needed?Older people with complex health problems are increasingly characterised as “living with frailty” within health and social care settings. Frailty is more common in older people, affecting 44% of adults aged 65 and older in England. Better care for people living with frailty is essential to improve health and quality of life and help the NHS and Social Care to be more efficient. The NHS needs to ensure that they have the right number of staff, with the right skills working in the right place. To do this, organisations delivering health and social care need to know more about what services are required by people living with frailty, and the numbers and type of health and social care staff needed to run those services. This review is part of a larger study which aims to develop a tool (a computer model) to predict the staff numbers with the skills the that are needed to provide the best care for adults living with frailty. This review will help to gather background information on what is currently happening and available, so that this information can be considered by the research team and their NHS and Social care partners, as they develop the tool. How will this review be done?This review aims to gather data from sources around the world which provide information about specific services which deliver health and social care for adults living with frailty. To do this, the study team will use online databases and the internet to search for the relevant information, using keywords which are relevant for the topic area. We will search academic journals, as well as information from people who provide the services such as NHS Trusts and Local Authorities, and other organisations whose remit includes informing, designing, delivering or evaluating services for older people living with frailty. Working with our stakeholder consultation group, including NHS and Social care partners, patients, carers and members of the public, we will decide which information is important to extract to be able to meet our aim, and how to present it. How will the results from the review be used?The results from this review should include a description of different health and social care services that are used by people living with frailty, and the type and numbers of staff providing care. This information, together with other information collected during the study, will be applied to an existing tool which predicts the numbers of people living with frailty in the future and their needs for health and social care. The research team and the stakeholders will look at different scenarios for service delivery, with its associated workforce, and estimate what the future workforce to provide care for this patient and service user group might be. This will help people who plan services to plan the workforce required in their local areas. <br/

    Assessment of cognitive function in heart failure patients

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    BackgroundResearch on the cognitive capacity of heart failure patients is limited, with a paucity of benchmark information available for this population. It is highly likely that cognitive deficits affect patients\u27 understanding of disease and treatment requirements, as well as limiting their functional capacity and ability to implement treatment plans, and undertake self-care.AimsThe purpose of this study was to establish a comprehensive neurocognitive profile of the heart failure patient through systematic neurocognitive assessment and to determine whether an association existed between severity of heart failure and cognitive abilities.MethodsThirty-eight patients were recruited from the heart failure patient databases of two metropolitan hospitals in Melbourne, Australia. Participants were individually assessed using four standardised, internationally recognised neuropsychological tests that examined current and premorbid intelligence, memory and executive functioning.ResultsAlthough there was no significant decline from premorbid general intellectual function, other specific areas of deficit, including impaired memory and executive functioning, were identified. There were no significant correlations between heart failure severity and the neurocognitive measures used.ConclusionThe results support the need to recognise cognitive impairment in people with heart failure and to develop an abbreviated method of assessing cognitive function that can be easily implemented in the clinical setting. Identifying cognitive deficits in this population will be useful in guiding the content and nature of treatment plans to maximise adherence and minimise worsening of heart failure symptoms.<br /
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