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Link | rowid ▼ | title | DOI | URL | created | subject | references-count | is-referenced-by-count | ISSN | container-title | abstract | author_number | orcids | names | award_numbers | funder_names | funder_dois |
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16 | 16 | ["Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research"] | 10.1136/annrheumdis-2017-212141 | http://dx.doi.org/10.1136/annrheumdis-2017-212141 | 2017-10-30T16:15:10Z | ["Immunology", "General Biochemistry, Genetics and Molecular Biology", "Immunology and Allergy", "Rheumatology"] | 49 | 9 | ["0003-4967", "1468-2060"] | Annals of the Rheumatic Diseases | <jats:sec><jats:title>Objectives</jats:title><jats:p>This study aimed to develop consensus on an internationally agreed dataset for juvenile dermatomyositis (JDM), designed for clinical use, to enhance collaborative research and allow integration of data between centres.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>A prototype dataset was developed through a formal process that included analysing items within existing databases of patients with idiopathic inflammatory myopathies. This template was used to aid a structured multistage consensus process. Exploiting Delphi methodology, two web-based questionnaires were distributed to healthcare professionals caring for patients with JDM identified through email distribution lists of international paediatric rheumatology and myositis research groups. A separate questionnaire was sent to parents of children with JDM and patients with JDM, identified through established research networks and patient support groups. The results of these parallel processes informed a face-to-face nominal group consensus meeting of international myositis experts, tasked with defining the content of the dataset. This developed dataset was tested in routine clinical practice before review and finalisation.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>A dataset containing 123 items was formulated with an accompanying glossary. Demographic and diagnostic data are contained within form A collected at baseline visit only, disease activity measures are included within form B collected at every visit and disease damage items within form C collected at baseline and annual visits thereafter.</jats:p></jats:sec><jats:sec><jats:title>Conclusions</jats:title><jats:p>Through a robust international process, a consensus dataset for JDM has been formulated that can capture disease activity and damage over time. This dataset can be incorporated into national and international collaborative efforts, including existing clinical research databases.</jats:p></jats… | 23 | ["http://orcid.org/0000-0002-5400-9911"] | ["Liza J McCann", "Clarissa A Pilkington", "Adam M Huber", "Angelo Ravelli", "Duncan Appelbe", "Jamie J Kirkham", "Paula R Williamson", "Amita Aggarwal", "Lisa Christopher-Stine", "Tamas Constantin", "Brian M Feldman", "Ingrid Lundberg", "Sue Maillard", "Pernille Mathiesen", "Ruth Murphy", "Lauren M Pachman", "Ann M Reed", "Lisa G Rider", "Annet van Royen-Kerkof", "Ricardo Russo", "Stefan Spinty", "Lucy R Wedderburn", "Michael W Beresford"] | [] | ["Arthritis Research UK"] | ["10.13039/501100000341"] |
86 | 86 | ["Determining responsiveness and meaningful changes for the Musculoskeletal Health Questionnaire (MSK-HQ) for use across musculoskeletal care pathways"] | 10.1136/bmjopen-2018-025357 | http://dx.doi.org/10.1136/bmjopen-2018-025357 | 2019-10-04T11:25:15Z | ["General Medicine"] | 26 | 0 | ["2044-6055", "2044-6055"] | BMJ Open | <jats:sec><jats:title>Objectives</jats:title><jats:p>We have previously developed and validated the Arthritis Research UK Musculoskeletal Health Questionnaire (MSK-HQ) for use across musculoskeletal care pathways, showing encouraging psychometric test results. The objective of this study was to determine the responsiveness of MSK-HQ following MSK treatments and to determine the minimally important change (MIC).</jats:p></jats:sec><jats:sec><jats:title>Setting</jats:title><jats:p>We collected data in four cohorts from community physiotherapy and secondary-care orthopaedic hip, knee and shoulder clinics.</jats:p></jats:sec><jats:sec><jats:title>Participants</jats:title><jats:p>592 individuals were recruited; 210 patients treated with physiotherapy for a range of MSK conditions in primary care; 150 patients undergoing hip replacement, 150 patients undergoing knee replacement and 82 undergoing shoulder surgery in secondary care.</jats:p></jats:sec><jats:sec><jats:title>Outcome measures</jats:title><jats:p>Preoperative data were collected including the MSK-HQ, European Quality of Life-5D (EQ-5D) and the OHS, OKS or OSS in each joint-specific group. The same scores, together with anchor questions, were collected postintervention at 3 months for the physiotherapy group and 6 months for all others. Following COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) guidelines, responsiveness was assessed using correlation between scores and the MIC was calculated for the entire cohort using receiver operating characteristic curve analysis.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>The MSK-HQ demonstrated strong correlation (R=0.73) with EQ-5D across the entire cohort and with each of the joint-specific Oxford scores (hip R=0.87, knee R=0.92 and shoulder R=0.77). Moderate correlation was seen between MSK-HQ and EQ-5D across each individual group (R value range 0.60–0.68), apart from the hip group where correlation was strong (R=0.77). The effect size with MSK-… | 15 | ["http://orcid.org/0000-0002-4258-5866"] | ["Andrew James Price", "Reuben Ogollah", "Sujin Kang", "Elaine Hay", "Karen L Barker", "Elena Benedetto", "Stephanie Smith", "James Smith", "James B Galloway", "Benjamin Ellis", "Jonathan Rees", "Sion Glyn-Jones", "David Beard", "Ray Fitzpatrick", "Jonathan C Hill"] | ["20518"] | ["Arthritis Research UK"] | ["10.13039/501100000341"] |
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