53 research outputs found

    Disease severity and psychological status in ankylosing spondylitis

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    The findings of this study provide an original contribution to knowledge in ankylosing spondylitis (AS) and have important implications for eiThancing clinical practice. The results demonstrate the existence and significance of associations between disease and psychological status in AS, and also demonstrate the value of using longitudinal, repeated measures approach to study this long-term condition. This study is also the first to demonstrate the value of using a mixed methods approach to investigate this issue in AS. Although existing literature on prospective longitudinal cohort studies in AS is very limited (other than for studies which involve clinical trials of medications and other interventions), this project demonstrates the feasibility of sustaining such a study over an 18-month period and of recruiting large numbers of participants to both the quantitative and qualitative phases. The results are based upon a hospital-ascertained cohort of 89 adults. Both the quantitative and qualitative phases produced important new findings: 1. In this cohort, mean BASMI, BASFI and BASDAI scores remained consistent throughout the 18-month period. People with BASDAI scores higher than 4 at the beginning of the study continued to score higher than 4 throughout. 2. BASMI, BASFI and BASDAI scores correlated significantly with anxiety, depression and internality scores, but not with levels of belief in chance or powerful others, throughout the study. This demonstrates that AS disease status is closely linked to some, but not all, psychological measures. 3. There was no effect of co-existent psoriasis or iritis on either disease or psychological status, but BASMI and BASFI (but not BASDAI) scores were significantly related to age. 4. Factors which appear to influence the associations between disease and psychological status are highly complex, often differing between individuals, and usually determined by other co-morbidities and life circumstances besides AS. These results suggest that the major implication for clinical practice would be the development of a more comprehensive and integrated assessment framework for AS set within the context of a biopsychosocial model. Envisaged would be a major programme of work to critically assess and validate potential components of such a framework with the aim of determining efficacy, feasibility and acceptability of such an approach

    An investigation into the subjective wellbeing of people with an intellectual disability

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    This thesis investigated the theory of subjective wellbeing homeostatic control for a sample of New Zealand people with mild to moderate intellectual disability, compared to non-disabled people. This involved three linked quantitative studies that investigated the internal buffers of self-esteem, control and optimism.<br /

    Disease severity and psychological status in ankylosing spondylitis

    Get PDF
    The findings of this study provide an original contribution to knowledge in ankylosing spondylitis (AS) and have important implications for eiThancing clinical practice. The results demonstrate the existence and significance of associations between disease and psychological status in AS, and also demonstrate the value of using longitudinal, repeated measures approach to study this long-term condition. This study is also the first to demonstrate the value of using a mixed methods approach to investigate this issue in AS. Although existing literature on prospective longitudinal cohort studies in AS is very limited (other than for studies which involve clinical trials of medications and other interventions), this project demonstrates the feasibility of sustaining such a study over an 18-month period and of recruiting large numbers of participants to both the quantitative and qualitative phases. The results are based upon a hospital-ascertained cohort of 89 adults. Both the quantitative and qualitative phases produced important new findings: 1. In this cohort, mean BASMI, BASFI and BASDAI scores remained consistent throughout the 18-month period. People with BASDAI scores higher than 4 at the beginning of the study continued to score higher than 4 throughout. 2. BASMI, BASFI and BASDAI scores correlated significantly with anxiety, depression and internality scores, but not with levels of belief in chance or powerful others, throughout the study. This demonstrates that AS disease status is closely linked to some, but not all, psychological measures. 3. There was no effect of co-existent psoriasis or iritis on either disease or psychological status, but BASMI and BASFI (but not BASDAI) scores were significantly related to age. 4. Factors which appear to influence the associations between disease and psychological status are highly complex, often differing between individuals, and usually determined by other co-morbidities and life circumstances besides AS. These results suggest that the major implication for clinical practice would be the development of a more comprehensive and integrated assessment framework for AS set within the context of a biopsychosocial model. Envisaged would be a major programme of work to critically assess and validate potential components of such a framework with the aim of determining efficacy, feasibility and acceptability of such an approach.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

    Experimental Platform to Facilitate Novel Back Brace Development for the Improvement of Spine Stability

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    The spine or ‘back’ has many functions including supporting our body frame whilst facilitating movement, protecting the spinal cord and nerves and acting as a shock absorber. In certain instances, individuals may develop conditions that not only cause back pain but also may require additional support for the spine. Common movements such as twisting, standing and bending motions could exacerbate these conditions and intensify this pain. Back braces can be used in certain instances to constrain such motion as part of an individual’s therapy and have existed as both medical and retail products for a number of decades. Arguably, back brace designs have lacked the innovation expected in this time. Existing designs are often found to be heavy, overly rigid, indiscrete and largely uncomfortable. In order to facilitate the development of new designs of back braces capable of being optimised to constrain particular motions for specific therapies, a numerical and experimental design strategy has been devised, tested and proven for the first time. The strategy makes use of an experimental test rig in conjunction with finite element analysis simulations to investigate and quantify the effects of back braces on flexion, extension, lateral bending and torsional motions as experienced by the human trunk. This paper describes this strategy and demonstrates its effectiveness through the proposal and comparison of two novel back brace designs

    Development of the Warwick Axial Spondyloarthritis faTigue and Energy questionnaire (WASTEd) – a new patient-reported outcome measure

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    Objective To co-produce and test a potential new patient-reported outcome measure (PROM) - the Warwick Axial Spondyloarthritis faTigue and Energy questionnaire (WASTEd), providing vital qualitative confirmation of conceptual relevance, clarity, and acceptability. Methods Informed by measurement theory, we collaborated with patient partners throughout a three-stage, iterative process of PROM development. Stage 1: Informed by patient interviews, reviews exploring patients’ fatigue experiences, and existing PROMs of fatigue, an initial measurement framework of axSpA fatigue and energy and candidate items were defined. Stage 2: The relevance and acceptability of the measurement framework and candidate items were assessed qualitatively by focus group participants. Stage three: Patients participated in pretesting interviews to assess item comprehensiveness, relevance, acceptability, and comprehensibility. Results Stage one informed the development of an initial five-domain measurement framework, with 59 candidate items. In stage two, five patients and seven healthcare professionals participated in four focus groups to derive a 40-item model of fatigue and energy. Collaborative engagement with patient research partners further supported refinement of questionnaire structure and content. Pretesting with ten patients across two interview rounds in stage three produced a four-domain, 30-item long-form questionnaire. Conclusions An active collaboration with patients and healthcare professionals has supported the co-production of a potential new PROM of axSpA fatigue, underpinned by strong evidence of face and content validity. The WASTEd extends the assessment of fatigue beyond severity, highlighting the importance of symptom frequency, energy, and self-management. Future research will involve psychometric evaluation, supporting item-reduction, structural refinement, and confirmation of PROM validity

    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

    Is falling really a problem for people living with ankylosing spondylitis? A survey of National Ankylosing Spondylitis Society members

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    Background: A significant portion of ankylosing spondylitis (AS) patients develop chronic progressive disease and disability due to spinal inflammation leading to fusion, often with thoracic kyphosis. This development can interfere with static postural stability, mobility, flexibility, gait and musculoskeletal strength, potentially increasing the risk of falling. In the UK, there is currently paucity of knowledge of the extent, frequency and implications of falling for this population. Our aim was to examine whether falling and fear of falling was a problem in AS patients in the UK, while exploring possible contributory factors. Methods: During the month of August 2016, the National Ankylosing Spondylitis Society (NASS) conducted an anonymous on line poll of its members. The survey included demographic details, knowledge of diagnosis of osteoporosis, walking aide use, confidence in turning, frequency of, reasons for and consequences of falling. Results: In total 178 members of NASS completed the survey (60% female, 40% male, age range 19 to 84 years). 42% were diagnosed with AS less than 5 years ago, 16% between 5 and 10 years ago, 16% between 10 to 20 years ago and 26% more than 20 years ago. 52% did not have osteoporosis, 36% were unsure, 6% had osteopenia and 6% osteoporosis. 44% used various walking aides with varying frequency of use from 24% constantly, 17% most of the time, 33% some of the time and 26% infrequently. 12% of respondents rated their ability to look straight ahead as poor and 54% had difficulty turning their head and body. A large percentage (72%) felt safe while turning while 24% felt they were unsafe. Importantly, 55% had experienced at least one fall since their diagnosis with 65 (37%) people falling between 1 to 5 times, 19 (11%) falling between 5 to 10 times and 13 (7%) more than 10 times. The main reasons given for falling included poor balance (38%), AS pain and stiffness (19%), weakness (16%), tripping (10%), slippery floor (10%), poor proprioception (4%) and alcohol (3%). Of the 96 people who had fallen, 28 people (28%) had attended hospital with 21 (21%) experiencing fractures with 6 people requiring surgery. Conclusion: As one in two AS patients have fallen at least once since their diagnosis, it appears that falling in AS patients warrants further research, due to the potentially devastating consequences of falling. The contributory factors, such as balance, AS symptomology (especially pain and weakness) and functional ability must be quantified to enable better understanding of the risk in this population. This would allow for further research in predicting who may be most at risk of falling and stratify appropriate clinical interventions to reduce this risk

    The origins of the Duchy of Aquitaine and the government of the Counts of Poitou (902-1137)

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    At the end of the ninth century the members of two rival families were struggling to gain possession of the county of Poitou. Although the comital appointment was in theory still royally controlled, Ademar (the candidate of King Odo) was unable to maintain his position in the county when Ebles (the descendant of former Carolingian counts) seized Poitiers in 902. After an attempt by King Lothair and Duke Hugh the Great to capture Poitiers in 955 there was no further royal intervention in the county; and Hbles and his descendants, even though they maintained contacts with the royal court, ruled independently in Foitou. The history of Poitou at this period is important because documentary material survives to link the Carolingian county, where the count was still merely a royal official, with the feudal principality which was later evolved. For instance Ebles held malli publici in due Carolingian form and where the Norman ravages had not been too great took over the local administration; both he and his son seem to have established their own viscounts. Lands and rights which had once belonged to the royal fisc, (including palaces and royal monasteries) provided the foundations of Ebles' power; and the significance of these usurpations nay be judged from the fact that the authority of the Count of Poitou was never go strong where it did not rest upon the débris of Carolingian public authority. The acquisition of the title of Duke of Aquitaine, for instance, did not bring its holder any such solid advantages as the acquisition of the county of Foitou. Continued in thesis ..
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