المؤلفون: Easton, Victoria, Bale, Peter, Bacon, Holly, Jerman, Emma, Armon, Kate, Macgregor, Alex J

المصدر: Arthritis & Rheumatology ; volume 66, issue S3 ; ISSN 2326-5191 2326-5205

الوصف: Background/Purpose: Benign joint hypermobility syndrome (BJHS) is a heritable connective tissue disorder, which is characterised by excessive joint flexibility and musculoskeletal dysfunction. In childhood, BJHS has been linked clinically with disorders of motor control, however the association remains poorly characterised and the extent to which this reflects developmental variation remains uncertain. A systematic review found reduced lower limb joint proprioception in those with BJHS compared with non‐hypermobile cohorts with possible implications on co‐ordination. The purpose of this study was to examine baseline data from an interventional study of BJHS in childhood to assess the relationship between joint hypermobility and motor control. Methods: The study subjects included 119 children between the ages of 5 and 16 years. All had documented joint hypermobility (assessed by a paediatric rheumatologist) and musculoskeletal pain or dysfunction. Motor ability was assessed using the norm‐referenced Movement Assessment Battery for Children 2 (M‐ABC 2); a validated tool that identifies developmental coordination disorder. The assessment covers three domains: 1. Manual Dexterity 2. Ball Skills /throwing catching skills 3. Static and Dynamic Balance. The test contains eight activities for three age groups: 3–6 years; 7–10 years and 11–16 years. Total standard scores and percentiles were calculated using a standard scoring system. Children with age‐corrected scores falling below the 15th percentile were defined as having movement difficulty. Those that score below 5 th Centile were classified as having significant movement difficulty. The child's functioning, including pain and wellbeing was assessed using the Childhood Health Assessment Questionnaire (CHAQ) which is a validated parent questionnaire for the use in children with juvenile idiopathic arthritis but was modified for use in this study. Results: Among the children with BJHS that were assessed, 32.8% scored ≤15 percentile on the M‐ABC (p<0.001). 18.4% ...

الإتاحة: https://doi.org/10.1002/art.38505Test

المؤلفون: Birt, Linda, Pfeil, Michael, MacGregor, Alexander, Armon, Kate, Poland, Fiona

المصدر: Musculoskeletal Care ; volume 12, issue 1, page 56-61 ; ISSN 1478-2189 1557-0681

الوصف: Objective Joint hypermobility can lead to pain and motor developmental problems in children and young people (CYP). Exercise programmes may help CYP with joint hypermobility strengthen core muscle groups. Non‐ adherence to home physiotherapy is common. The present study aimed to understand how families experienced an intensive multidisciplinary intervention. Method This was a qualitative study nested within a randomized controlled trial of a multidisciplinary treatment intervention, including physiotherapy, for children aged five to 17 years. Twenty‐eight families were recruited following the intervention. Semi‐structured interviews were used to examine the views and expectations of parents and CYP, and examine adherence to the exercise programme. Thematic analysis of data was used to develop findings. Results Parents and CYP reported that exercise reduced the symptoms of hypermobility. Parental motivation, adapting family routines, making exercise a family activity and seeing benefit increased adherence to exercise. Non‐adherence to exercise was linked to lower levels of parental supervision, not understanding the treatment, not seeing benefit and not having specific time to dedicate to doing the exercises. Conclusion Even when exercise is seen to benefit a child's well‐being, families experience challenges in adhering to a physiotherapy programme for hypermobility. Therapists can utilize findings on what enhances adherence to help CYP effectively exercise in the home setting. Copyright © 2013 John Wiley & Sons, Ltd.

الإتاحة: https://doi.org/10.1002/msc.1055Test

المؤلفون: Watson, Louise, Leone, Valentina, Pilkington, Clarissa, Tullus, Kjell, Rangaraj, Satyapal, McDonagh, Janet E., Gardner‐Medwin, Janet, Wilkinson, Nick, Riley, Phil, Tizard, Jane, Armon, Kate, Sinha, Manish D., Ioannou, Yiannis, Archer, Neil, Bailey, Kathryn, Davidson, Joyce, Baildam, Eileen M., Cleary, Gavin, McCann, Liza J., Beresford, Michael W.

المصدر: Arthritis & Rheumatism ; volume 64, issue 7, page 2356-2365 ; ISSN 0004-3591 1529-0131

الوصف: Objective The UK Juvenile‐Onset Systemic Lupus Erythematosus (JSLE) Cohort Study is a multicenter collaborative network established with the aim of improving the understanding of juvenile SLE. The present study was undertaken to describe the clinical manifestations and disease course in patients with juvenile SLE from this large, national inception cohort. Methods Detailed data on clinical phenotype were collected at baseline and at regular clinic reviews and annual followup assessments in 232 patients from 14 centers across the UK over 4.5 years. Patients with SLE were identified according to the American College of Rheumatology (ACR) SLE classification criteria. The present cohort comprised children with juvenile SLE (n = 198) whose diagnosis fulfilled ≥4 of the ACR criteria for SLE. Results Among patients with juvenile SLE, the female:male sex distribution was 5.6:1 and the median age at diagnosis was 12.6 years (interquartile range 10.4–14.5 years). Male patients were younger than female patients ( P < 0.01). Standardized ethnicity data demonstrated a greater risk of juvenile SLE in non‐Caucasian UK patients ( P < 0.05). Scores on the pediatric adaptation of the 2004 British Isles Lupus Assessment Group disease activity index demonstrated significantly increased frequencies of musculoskeletal (82%), renal (80%), hematologic (91%), immunologic (54%), and neurologic (26%) involvement among the patients over time. A large proportion of the patients (93%) were taking steroids and 24% of the patients required treatment with cyclophosphamide. Disease damage was common, with 28% of the patients having a Systemic Lupus International Collaborating Clinics/ACR damage score of ≥1. Conclusion The data on these patients from the UK JSLE Cohort Study, comprising one of the largest national inception cohorts of patients with juvenile SLE to date, indicate that severe organ involvement and significant disease activity are primary characteristics in children with juvenile SLE. In addition, accumulation of ...

الإتاحة: https://doi.org/10.1002/art.34410Test

المؤلفون: Eccleston, Philippa, Werneke, Ursula, Armon, Kate, Stephenson, Terence, MacFaul, Roderick

المصدر: Journal of Advanced Nursing ; volume 33, issue 6, page 784-790 ; ISSN 0309-2402 1365-2648

الوصف: Accounting for overlap? An application of Mezzich’s κ statistic to test interrater reliability of interview data on parental accident and emergency attendance Study rationale. The number of interview studies with service users is rising because of growth in health services research. The level of agreement between multiple interview data coders requires statistical calculation to support results. Basic κ statistics are often used but this depends on having mutually exclusive data. Researchers should be aware that this is not valid when an interview word or paragraph can be coded into more than one category. The ‘proportional overlap’κ extension by Mezzich et al . (1981 , Journal of Psychiatric Research 16 , 29–39) has been investigated as an original solution. Objectives. To assess the level of agreement beyond chance between several raters of interview data by applying the ‘proportional overlap’κ statistic by Mezzich et al . to verbal interview data. The clinical area investigated was child attendance at an Accident and Emergency Department, where parental attendance experiences have been under‐explored. Methods. Two researchers using a coding schedule coded a random sample of interview transcripts. These data were applied to Mezzich’s procedure; coder 1 notes that a paragraph refers to category A and B but coder 2 notes A, B and C. The total agreement overlap in this case was 0·66 because two actual agreements out of three possible agreements were made. This was repeated for each paragraph and divided by the number of coding pairs. All agreement values were summed then subsequently divided by the total number of paragraphs to get P o (total number of observed agreements) and by the total number of coding pairs to get P e (total number of agreements by chance alone). P o and P e were used in the basic κ formula to assess interview coding reliability. Results. The overall mean P o was 0·61, the mean P e was 0·32, with a κ score of 0·43; a moderate level of agreement which was statistically significant ( t =4·8, P ...

الإتاحة: https://doi.org/10.1046/j.1365-2648.2001.01718.xTest

المؤلفون: Armon, Kate, Elliott, Elizabeth J

المصدر: Evidence‐based Paediatrics ; page 377-391 ; ISBN 9780727917461 9780470987384

الإتاحة: https://doi.org/10.1002/9780470987384.ch37Test