Conectar
The aim was to evaluate whether standardised exercise performance during the incremental shuttle walk test (ISWT) can be used to assess disease severity in children and young people (CYP) with chronic conditions, through (1) identifying the most appropriate paediatric normative reference equation for the ISWT, (2) assessing how well CYP with haemophilia and cystic fibrosis (CF) perform against the values predicted by the best fit reference equation and (3) evaluating the association between standardised ISWT performance and disease severity.
A cross-sectional analysis was carried out using existing data from two independent studies (2018–2019) at paediatric hospitals in London,UK. CYP with haemophilia (n=35) and CF (n=134) aged 5–18 years were included. Published reference equations for standardising ISWT were evaluated through a comparison of populations, and Bland-Altman analysis was used to assess the level of agreement between distances predicted by each equation. Associations between ISWT and disease severity were assessed with linear regression.
Three relevant reference equations were identified for the ISWT that standardised performance based on age, sex and body mass index (Vardhan, Lanza, Pinho). A systematic proportional bias of standardised ISWT was observed in all equations, most pronounced with Vardhan and Lanza; the male Pinho equation was identified as most appropriate. On average, CYP with CF and haemophilia performed worse than predicted by the Pihno equation, although the range was wide. Standardised ISWT, and not ISWT distance alone, was significantly associated with forced expiratory volume in 1 s in CYP with CF. Standardised ISWT in CYP with haemophilia was slightly associated with haemophilia joint health score, but this was not significant.
ISWT performance may be useful in a clinic to identify those with worsening disease, but only when performance is standardised against a healthy reference population. The development of validated global reference equations is necessary for more robust assessment.
The role of the clinical nurse specialist is complex but is defined differently across the world. The role of clinical nurse specialist stoma care is undefined and it is uncertain what aspects of the role are included in the general day-to-day working role.
The aim was to gain consensus opinion to answer the research question: ‘What is the role of the clinical nurse specialist in stoma care?’
Delphi consensus.
Previous data gained from a scoping review and expert consultation was utilized to form role statements. At a UK conference the 13 statements and 173 sub-categories were voted upon. Consensus was agreed if 75% of voters voted agree or strongly agree. Two stages of voting occurred with results from the first vote being shared in the second voting session.
All 13 statement and most (150/193) statement sub-categories reached consensus, with 20 sub-categories added during voting session one.
The four pillars of advanced practice were met by the 13 statements with clinical and education reaching higher consensus and agreement than leadership/management and research. The results of the consensus study provide a clearer articulation of the clinical nurse specialist stoma care role, which is complex and multifaceted which has not been described previously.
Consideration of role evolution is made possible, to gain a greater expertise in the scope of practice it is necessary to include prescribing, management and research which could improve service delivery and optimize patient outcomes. There was no patient or public contribution, which in hindsight would have potentially improved the process but it was considered that patients might not recognize the full role of the nurse, understanding only aspects of the role that were patient-centred.
No patients or public were involved in any aspect of this paper—in hindsight this might have been useful.
FreshRSS 