Objective: In autosomal recessive dystrophic Epidermolysis bullosa, repeat blistering results in finger webbing and severe contractures of the hands. The aim of this study was to codesign patient-reported outcome indicators for hand therapy with patients, carers and clinicians, and use these to proof-of-concept test a novel dressing glove for recessive dystrophic Epidermolysis bullosa, with cost analysis. Method: Qualitative interviews and focus groups with patients and carers generated content for the indicators. Validity and reliability were established through expert review, piloting and consensus between patients, carers and clinicians. The indicators were self-reported by patients before and while wearing the dressing glove in an N-of-1 study. Time for dressing changes and use of conventional products were also self-reported. Results: A total of 11 indicators were initially generated from the thematic analysis. Expert review, piloting and consensus involved six patients, five carers and eight clinicians (total n=19). Participants agreed 14 indicators, covering hand skin condition (n=4), webbing between the digits (n=4), experiences of wearing and changing dressings (n=2), hand function (n=2), wrist function (n=1) and hand pain (n=1). In Phase 3, 12 patients scored indicators before wearing the gloves and four patients completed scoring while wearing the gloves. Statistically significant improvements between pre-glove and with-glove periods were found for most participants' experience scores. Skin appearance also improved for most participants. Conclusions: The indicators generated useful data, differentiation between scores and participants demonstrating proof-of-concept for patients with recessive dystrophic Epidermolysis bullosa who could wear the dressing gloves. The indicators are being used in routine practice, supporting clinical follow up, commercialisation and regulatory governance of the dressing glove.
This article explores the effectiveness of oral nutritional supplements through a literature review. A literature search was performed throughout various medical databases and one article was selected for a critical appraisal. The study focused on the use of high-energy, low-volume supplements for people living in care homes who are at risk of malnutrtion or who are already manourished. The methods and conclusions of the study are then scrutinised. This article recommends further research to be carried out into the type and volume of supplements needed and the implementation of evidence-based practice.
Background The inclusion of specialist nurses in multi-disciplinary teams is the current gold standard for care of people with heart failure (HF) in the UK; however, they remain underutilised in practice. Though existing systematic reviews favourably compare advanced nursing roles to physician-led care, none has focused solely on HF. Aim To investigate the impact of specialist and advanced nurse-led care on the clinical outcomes, quality of life and satisfaction of people with HF compared to physician-led care. Methods Literature review and narrative synthesis. Results This review included 12 studies and categorised their measured outcomes into five domains: mortality; hospital admissions and length of stay; HF diagnosis and management; quality of life and patient satisfaction; and finally, self-assessment and self-care. Five studies appraised as medium or low risk of bias suggest the impact of specialist and advanced-level nurses on people with HF to be broadly equivalent to physicians regarding mortality, hospital admissions and length of stay, while superior in terms of self-assessment and self-care behaviours. Conclusions There were too few studies of sufficient methodological quality to draw definitive conclusions. However, no evidence was found to suggest that nurse-led services are any less effective or safe than physician-led services.
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