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K Beeton

Publications and source records attributed to K Beeton.

9 recordsLinked to original sources

Recent developments in clinimetric instruments.

Assessment of impairment and function is essential in order to monitor joint status and evaluate therapeutic interventions in patients with haemophilia. The improvements in the treatment of haemophilia have required the development of more sensitive tools to detect the more minor dysfunctions that may now be apparent. This paper outlines some of the recent developments in this field. The Haemophilia Joint Health Score (HJHS) provides a systematic and robust measure of joint impairment. The MRI Scoring System has been designed to provide a comprehensive scoring system combining both progressive and additive scales. The Functional Independence Score for Haemophilia (FISH) has been developed to assess performance of functional activities and can be used in conjunction with the Haemophilia Activities List (HAL) which provides a self report measure of function. It is recommended that both measures are evaluated as these tools measure different constructs. Further refinement and testing of the psychometric properties of all of these tools is in progress. More widespread use of these tools will enable the sharing of data across the world so promoting best practice and ultimately enhancing patient care.

Activities of Daily Living↗

An exploration of health-related quality of life in adults with haemophilia--a qualitative perspective.

Musculoskeletal dysfunction is a common feature of haemophilia and along with other manifestations of this condition, there is a general perception that health-related quality of life (QoL) will be affected. Previous research using standardized questionnaires has demonstrated that QoL is lower in haemophilia groups compared with normal populations. However, disability studies and interviews with disabled people suggest that many disabled people experience positive life changes as a result of their illness and an affirmative model of disability has been proposed. A qualitative study involving focus groups and interviews was undertaken to explore these issues in a group of 19 severely affected adults with haemophilia. The focus groups and interviews were tape recorded and fully transcribed and the results subjected to thematic analysis. This paper focuses specifically on key issues that impacted on perceptions of QoL. The findings suggest that the participants' perceptions of their QoL were very positive. Possible reasons for this are proposed including the benefits of factor replacement, participants' recollections of their lifestyle before factor replacement, that having haemophilia was integral to the 'self' and finding a niche where they could be successful. A more positive affirmation of haemophilia may need to be considered when developing QoL measures.

Adaptation, Psychological↗

Evaluation of outcome of care in patients with haemophilia.

Haemophilia is a potentially disabling condition associated with high financial costs, and so the need for robust measures to evaluate outcome of care is essential. This paper is a review of some of the outcome measures commonly used to evaluate treatment in haemophilia and includes quality of life measures, evaluation of the musculoskeletal system and orthopaedic surgical procedures. Quality-of-life questionnaires are discussed with particular reference to the SF36 and AIMS2. Results of published studies to date have demonstrated variable results. Overall, haemophilia appears to reduce quality of life compared to normal population figures. Several factors are perceived to reduce quality of life, and these include being human immunodeficiency virus (HIV) positive, having impairments, and a history of orthopaedic surgery. The evaluation of the musculoskeletal system is important in order to detect any deterioration over time. Various standardized measurement tools are described. Orthopaedic surgical procedures have also been evaluated in patients with haemophilia. To date, the Hospital for Special Surgery Knee rating scale has been the most commonly used to evaluate the outcome of total knee replacement. The limitations of this system for patients with haemophilia are outlined. Overall, these measures provide useful tools for evaluating outcome, but none have been specifically developed for patients with haemophilia. Further studies would be useful to evaluate these tools and others in more depth.

Health Status Indicators↗

Experience of prophylaxis treatment in children with severe haemophilia.

The practice of prophylactic treatment of boys with severe haemophilia has been evaluated in our centre. Prophylaxis was started at the median age of 3.7 years (range 0.4-12.7 years) in 38/41 children (93%) under 17 years of age. Median follow-up was 4.1 years (range 0.4-12.7 years). The criteria of primary prophylaxis according to the definition by the European Paediatric Network of Haemophilia Management was fulfilled by 9/38 (24%). Although a majority [76%, 29/38] of the children started prophylaxis after a median number of joint bleeds of 3.5, 70% of the children in this group had clinical joint scores of 0. Intravenous catheter insertion was required at a median age of 15.5 months (range 5-36 months) in 21% of the children, resulting in a catheter infection rate of 1.74 per 1000 catheter days. None developed an inhibitor on prophylaxis and three patients who had low-titre inhibitors (< 5 Bethesda units) prior to prophylaxis had undetectable inhibitors after prophylaxis. The home-treatment training programme required considerable time and cost. As a result, 87% of the children used peripheral venous access and hospital visits declined as prophylaxis became established. Parents' incentives for prophylaxis were that the children undertook many physical activities and sports previously not recommended, there was less parental anxiety and an overall improvement in the quality of life for the whole family.

Bacterial Infections↗

Total joint arthroplasty in haemophilia.

In severely affected haemophilic patients arthropathy is a common problem which can lead to considerable pain and functional deficit. Surgical management, including total joint arthroplasty, can be undertaken if conservative management fails. A search of the literature showed that a number of studies describing the use of total knee arthroplasty (TKA) and total hip arthroplasty (THA) in haemophilia have been published, whereas shoulder, elbow and ankle arthroplasties are confined to case reports. This paper reviews the functional outcome of arthroplasty in the different joints, the postoperative and long-term complications, and the impact of HIV. Although complications are commonly described and the surgery is technically demanding, the results suggest that arthroplasty, particularly of the hip and knee, can be a valuable option in the management of severe haemophilic arthropathy.

Arthroplasty, Replacement↗

Muscle rehabilitation in haemophilia.

Musculoskeletal dysfunction is a common manifestation of haemophilia. This dysfunction may be associated with imbalances between muscle groups. Evidence emerging from the literature suggests that the rehabilitation of this dysfunction is very relevant for the patient with musculoskeletal problems. Treatment of muscle imbalance may be linked with a reduction in recurrence of symptoms. Further research is needed to establish the relevance of this area in patients with haemophilia but the clinical evidence supports the developing work in this field.

Adult↗

Conservative treatment of hemarthrosis for prevention of hemophilic synovitis.

Acute hemarthroses are probably the most frequent type of bleeding in the patient with hemophilia. Delayed and/or inadequate treatment can trigger a series of pathologic changes within the joint leading to a painful and disabling arthropathy. Despite the advent of prophylactic treatment with factor concentrates, the majority of patients in the world have no access to even on demand factor replacement. Care for all patients involves a team approach led by the hematologist but including input from orthopaedic surgeons and physiotherapists. Optimal treatment involves a combination of factor replacement, rest, ice, and supervised rehabilitation. In certain cases, joint aspiration may be considered. In developing countries, where factor concentrates are in short supply, such bleeding episodes usually are treated by physical means alone or with the addition of cryoprecipitate or fresh frozen plasma. After successful resolution of such episodes by whatever means, the events leading to the bleeding episode and its subsequent management should be considered within the setting of the treating unit. Such debriefings should aim to provide counsel regarding any appropriate lifestyle modifications and, where necessary, treatment should be arranged to minimize the risk of additional episodes.

Acute Disease↗