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Bone & Joint Open
Vol. 4, Issue 11 | Pages 825 - 831
1 Nov 2023
Joseph PJS Khattak M Masudi ST Minta L Perry DC

Aims

Hip disease is common in children with cerebral palsy (CP) and can decrease quality of life and function. Surveillance programmes exist to improve outcomes by treating hip disease at an early stage using radiological surveillance. However, studies and surveillance programmes report different radiological outcomes, making it difficult to compare. We aimed to identify the most important radiological measurements and develop a core measurement set (CMS) for clinical practice, research, and surveillance programmes.

Methods

A systematic review identified a list of measurements previously used in studies reporting radiological hip outcomes in children with CP. These measurements informed a two-round Delphi study, conducted among orthopaedic surgeons and specialist physiotherapists. Participants rated each measurement on a nine-point Likert scale (‘not important’ to ‘critically important’). A consensus meeting was held to finalize the CMS.


Orthopaedic Proceedings
Vol. 95-B, Issue SUPP_24 | Pages 11 - 11
1 May 2013
Ramachandran M Jayakumar P Hosalkar H Moller-Madsen B
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Aim. This pilot study aimed to identify the important symptomatic, functional and psychosocial aspects of hip disorders from the perspective of adolescent patients and their families in order to begin developing a patient-focused instrument (Bridging Adolescent Self-Reported Hip – BASH - score). Methods. This was a qualitative patient-centred study at a tertiary paediatric orthopaedic centre involving 50 adolescents aged 13–17 years, composed of five groups of 10 adolescents with slipped capital femoral epiphysis (SCFE), hip dysplasia (DDH), labral tears undergoing arthroscopic treatment, lower limb trauma and a miscellaneous group with conditions including Perthes' disease. A control group of 100 adolescents were also interviewed from a local school. Adolescent and separate concurrent parent groups underwent an ‘open’ phase face-to-face or telephone interview (theme development). This involved agreeing or disagreeing with statements, and open exploration of ideas related to the ‘day in the life’ of an adolescent with hip problems in order to generate and specify themes. This was followed by ranking and finally, scoring and testing. Results. All focus groups consistently and successfully generated themes related to hip problems and the majority of adolescents and parents were able to easily localise their issues to the hip. The ranking activity enabled the final definition of three key themes: a) physical symptoms, b) limitations and restrictions on life activities and situations and c) emotional experiences and self-consciousness which formed the basis of scoring and testing and the test version of the BASH score for adolescents. Scaling was developed with a total of 20 items rated on a five-point scale based on the frequency of effect from 0 (always) to 5 (never) providing a maximum score of 100. Conclusion. The BASH score is the first patient-reported outcome score for adolescent hip disorders developed with adolescents for adolescents


Bone & Joint Research
Vol. 2, Issue 6 | Pages 116 - 121
1 Jun 2013
Duijnisveld BJ Saraç Ç Malessy MJA Brachial Plexus Advisory Board TI Vliet Vlieland TPM Nelissen RGHH

Background

Symptoms of obstetric brachial plexus injury (OBPI) vary widely over the course of time and from individual to individual and can include various degrees of denervation, muscle weakness, contractures, bone deformities and functional limitations. To date, no universally accepted overall framework is available to assess the outcome of patients with OBPI. The objective of this paper is to outline the proposed process for the development of International Classification of Functioning, Disability and Health (ICF) Core Sets for patients with an OBPI.

Methods

The first step is to conduct four preparatory studies to identify ICF categories important for OBPI: a) a systematic literature review to identify outcome measures, b) a qualitative study using focus groups, c) an expert survey and d) a cross-sectional, multicentre study. A first version of ICF Core Sets will be defined at a consensus conference, which will integrate the evidence from the preparatory studies. In a second step, field-testing among patients will validate this first version of Core Sets for OBPI.