|مجال التميز||تميز دراسي وبحثي|
|عنوان البحث:||Development of a core outcome set for lower limb orthopaedic surgical interventions in ambulant children and young people with cerebral palsy: a study protocol|
|رابط إلى البحث:||https://bmjopen.bmj.com/content/10/3/e034744|
|موجز عن البحث:||
Introduction: Musculoskeletal deformities and gait deviations are common features in ambulatory cerebral palsy (CP). Deformity correction through lower limb orthopaedic surgery is the standard form of care aimed at improving or preserving motor function. Current research on CP care does not always take into account individual patients’ expectations and needs. There is a wide range of outcome domains and outcome measures used to assess outcome from treatment. This can lead to reporting bias and make it difficult to compare and contrast studies. A core outcome set (COS) would enhance the efficiency, relevance and overall quality of CP orthopaedic surgery research. The aim of this study is to establish a standardised COS for use in evaluating lower limb orthopaedic surgery for ambulatory children and young people with CP.
Methods/Analysis: A set of outcomes domains and outcome measures will be developed as follows: (1) a qualitative evidence synthesis to identify relevant outcomes from children and young people and family perspective; (2) a scoping review to identify relevant outcomes and outcome measures; (3) qualitative research to explore the experience of key stakeholders; (4) prioritisation of outcome domains will be achieved through a two-round Delphi process with key stakeholders; (5) a final COS will be developed at a consensus meeting with representation from key stakeholder groups.
Ethics and Dissemination: Ethical approval for this study was granted in the UK by the Oxfordshire Research Ethics Committee B (REC reference 19/SC/0357). Informed consent will be obtained from participants taking part in the qualitative research and Delphi process. Study findings will be published in an open access journal and presented at relevant national and international conferences. Charities and associations will be engaged to promote awareness of the project COS results.
Trial registration number: COMET registration: 1236.
PROSPERO registration number: CRD42018089538.
|عنوان البحث:||Outcome domains and measures after lower limb orthopaedic surgery for ambulant children with cerebral palsy: an updated scoping review|
|رابط إلى البحث:||https://onlinelibrary.wiley.com/doi/10.1111/dmcn.14599|
|موجز عن البحث:||
Aim: To determine the reported outcome domains and measures used to assess lower limb orthopaedic surgery of ambulant children and young people with cerebral palsy (CP) and map these outcomes to the International Classification of Functioning, Disability and Health – Children and Youth (ICF‐CY) framework.
Method: This updated scoping review included studies published between January 2016 and July 2019 in five databases: MEDLINE, PubMed, EMBASE, CINAHL, and the Cochrane Central Register of Controlled Trials. Studies were included if participants were ambulant individuals with CP aged between 0 and 20 years who had undergone lower limb orthopaedic surgery. Health outcome domains and measures were identified and classified using the ICF‐CY framework.
Results: Forty‐four eligible studies were identified with a total of 40 different outcome domains recorded. Among eligible studies, 44 (100%) measured body function and structural impairment and seven (16%) measured activity limitation and participation restriction. The most frequently reported outcome was gait pattern (n=37, 84%). Few studies reported adverse effects of surgery (n=13, 30%). Twenty‐nine different outcome measures were identified. Patient‐reported outcomes measures were used in 10 studies (23%).
Interpretation: The review highlights a heterogeneity in the reported outcome domains and measures used in CP studies. The majority of the reported outcomes focus on the ICF‐CY domain of body function and structure. The review also highlights a notable shift towards patient‐reported outcomes in recent years. Development of a core outcome set for lower limb orthopaedic surgery would guide researchers to use more consistent and complete measurement sets.
|عنوان البحث:||Patients’ and parents’ views about lower limb orthopaedic surgery for ambulant children and young people with cerebral palsy: a qualitative evidence synthesis|
|رابط إلى البحث:||https://online.boneandjoint.org.uk/doi/full/10.1302/1863-2548.14.200139|
|موجز عن البحث:||
Purpose: The article identifies the aspects of health and outcomes that are considered important from the perspective of ambulatory children with cerebral palsy (CP) and their parents regarding lower limb orthopaedic surgery and explores how they experience surgical interventions.
Methods: Four databases (Embase, MEDLINE (Ovid), CINAHL and PsycINFO) were searched from inception to 11 April 2020. Studies were included if they: 1) they involved children or young adults diagnosed with ambulant CP or their family, 2) participants had experience with lower limb orthopaedic surgery and 3) studies employed qualitative research methods. The Critical Appraisal Skills Programme was used to appraise identified studies. The ‘Best-fit framework’ synthesis approach was used by applying the International Classification of Functioning-Children and Youth (ICF–CY) linking rules and thematic synthesis. The review process was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.
Results: Six studies were included. Four themes were generated which were linked to the ICF–CY framework: Body function and structure, Activity and participation, Environmental factors, Personal factors, as well as non-ICF–CY themes including Emotional well-being and Goal setting. Important surgical outcomes identified were pain, fatigue, movement-related function, mobility, walking ability, community life, emotional well-being, and adequate provision of public and health services.
Conclusion: These findings are important for understanding patient-centred outcomes in lower limb orthopaedics surgery and providing focus for future interventional studies aimed at improving outcomes of importance to children with CP. These findings highlight the importance of long-term support to help people negotiate the challenge of surgical regimes and to achieve good outcomes after orthopaedic surgery. The outcomes identified will contribute to the development of a core outcome set in this field.
Level of evidence: III
|عنوان البحث:||An exploration of occupational choices in adolescence: A constructivist grounded theory study|
|رابط إلى البحث:||https://www.tandfonline.com/doi/full/10.1080/11038128.2020.1839965|
|موجز عن البحث:||
Background: Adolescence is a critical period within the life course, for developing adult occupational competencies and health behaviours. Few studies have considered how 16-17 year olds choose activities and behaviours from an occupational perspective.
Aim and objectives: To explore how adolescents aged 16-17 years old make choices about their daily occupations to inform a theoretical model of occupational choice.
Materials and methods: About 27 secondary school students aged 16-17 years attended one of six focus groups. Transcripts were analyzed using constructivist grounded theory, informing the iterative development of a theoretical model of occupational choice.
Results: Adolescent occupational choice occurred in response to experiencing needs and was characterized by ‘weighing up’ and ‘juggling’ the following four key domains: ‘Appraising values and priorities’, ‘Interacting with the situational context’, ‘Exploring skills and occupational repertoire’ and ‘Considering time factors’. A developing sense of responsibility and autonomy for occupational choices was described, leading to the development of the future occupational self.
Conclusions and significance: A theory illuminating how adolescents make choices was developed. The theory aligns with existing developmental literature and provides unique insights, from an occupational science perspective, on the conscious process by which adolescents make, develop and adapt choices about the occupations they do considering contextual and individual opportunities and constraints.
|عنوان المؤتمر:||British Paediatric Neurology Association Annual Meeting|
|مكان الإنعقاد:||Oxford, UK|
|طبيعة المشاركة:||Poster presentation|
Development of a core outcome set for lower limb surgical interventions in Ambulant children and young people with cerebral palsy
Objective: The objective of our study was to develop a core outcome set for ambulant children with cerebral palsy and lower limb surgical interventions.
Methods: To generate a list of categorised outcomes for inclusion in the eventual core outcome set (COS), a set of outcomes domains and outcome measures were developed from (1) qualitative evidence synthesis to surgical experiences and expectations from children and family perspective; (2) scoping review to identify reported outcomes and outcome measures; (3) qualitative research to explore what outcomes are important from health professionals, children and their family’s perspective.
Results: There were 54 outcomes with substantial heterogeneity in their reporting. Some outcomes were reported in one study only. These findings demonstrated the need for a core outcome set. The 54 outcomes were assigned to 8 core outcome areas: pain and muscle soreness, physiological manifestations of CP, daily life activities, independence, mobility, social life, quality of life, and adverse events. There are substantial inconsistencies in the number and type of outcome measures across studies with a significant focus on clinician‐administered and measured musculoskeletal manifestations.
Conclusion: Outcomes identified through these studies will be used to help stakeholders prioritise outcomes and reach consensus on a COS for children with CP undergoing lower limb surgical interventions. These studies provide children and families guidance for the health outcomes that matter to children and should be considered for COS inclusion. The proposed COS aims to provide guidance for future lower limb surgical research and to inform clinical practice. This does not imply that primary outcomes should utterly be those of the COS. However, to enhance the comparability across study results, the outcomes included in this COS should be considered for inclusion in addition to measuring study‐specific clinical endpoints. Further work is currently carried out in order to agree on how to best measure the outcomes included in this COS.
(Poster number 107)