Development of a core outcome set and outcome measurement set for physiotherapy trials in adults with Bronchiectasis (COS-PHyBE study): A protocol

Background Bronchiectasis is a chronic respiratory disease characterised by airways widening and recurrent infections, resulting in episodes of chronic cough, sputum expectoration, and dyspnoea. This leads to deterioration in daily function, repeated hospital admissions and poor quality of life. The prevalence and mortality related to bronchiectasis is increasing worldwide with growing economic burden on healthcare systems. Physiotherapy for bronchiectasis aims to decrease accumulation of sputum, dyspnoea, and improve exercise capacity and daily function. A robust evidence base to support physiotherapy in bronchiectasis is currently lacking. This is partly because of inconsistency and poor reporting of outcomes in available studies. A core outcome set is the minimum acceptable group of outcomes that should be used in clinical trials for a specific condition. This decreases research waste by improving consistency and reporting of key outcomes and facilitates the synthesis of study outcomes in systematic reviews and guidelines. The aim of the study is therefore to develop a core outcome set and outcome measurement set for physiotherapy research in adults with bronchiectasis. This will ensure outcomes important to key stakeholders are consistently used and reported in future research. Methods and analysis This project will use the COMET Initiative and COSMIN guidelines of core outcome set development and will include three phases. In the first phase, a comprehensive list of outcomes will be developed using systematic review of reported outcomes and qualitative interviews with patients and physiotherapists. Then consensus on key outcomes will be established in phase two using a Delphi survey and a consensus meeting. Finally, in phase three, we will identify appropriate instruments to measure the core outcomes by evaluating the psychometric properties of available instruments and a stakeholders’ meeting to establish consensus. Ethics The study was reviewed and has received ethical approval from the health-related Research Ethics Committee- Edge Hill University (ETH2021-0217). Registration This study is registered with the COMET database. https://www.comet-initiative.org/ Studies/Details/1931. The full systematic review protocol is registered in PROSPERO under the number CRD42021266247.</p

Identifying patient concerns during consultations in tertiary burns services: development of the Adult Burns Patient Concerns Inventory

ObjectivesIdentifying the issues and concerns that matter most to burns survivors can be challenging. For a number of reasons, but mainly relating to patient empowerment, some of the most pressing concerns patients may have during a clinical encounter may not naturally be the focal point of that encounter. The Patient Concerns Inventory (PCI) is a tried and tested concept initially developed in the field of head and neck cancer that empowers patients during a clinical encounter through provision of a list of prompts that allows patients to self-report concerns prior to consultation. The aim of this study was to develop a PCI for adult burns patients.DesignContent for the PCI was generated from three sources: burns health-related quality of life tools, thematic analysis of one-to-one interviews with 12 adult burns patients and 17 multidisciplinary team (MDT) members. Content was refined using a Delphi consensus technique, with patients and staff members, using SurveyMonkey.SettingWithin outpatient secondary care.ParticipantsTwelve adult burns patients and MDT members from two regional burns centres.ResultsA total of 111 individual items were generated from the three sources. The Delphi process refined the total number of items to 58. The main emergent domains were physical and functional well-being (18 items), psychological, emotional and spiritual well-being (22 items), social care and social well-being (7 items) and treatment-related concerns (11 items).ConclusionsThe Adult Burns Patient Concerns Inventory is a 58-item, holistic prompt list, designed to be used in the outpatient clinic. It offers a new tool in burn care to improve communication between healthcare professionals and patients, empowering them to identify their most pressing concerns and hence deliver a more focused and targeted patient-centred clinical encounter

Validation of a guideline-based composite outcome assessment tool for asthma control.

Background: A global definition of asthma control does not currently exist. The purpose of this study was to validate two new guideline-based composite measures of asthma control, defined as totally controlled (TC) asthma and well controlled (WC) asthma. Methods: We used data from 3416 patients randomised and treated in the multi-centre Gaining Optimal Asthma controL (GOAL) study. The criteria comprising the asthma control measures were based on Global Initiative for Asthma/National Institutes of Health guidelines. This validation study examined the measurement properties of the asthma control measures using data from runin, baseline, 12 and 52 weeks. Forced expiratory volume in 1 second (FEV1) and the Asthma Quality of Life Questionnaire (AQLQ) were used as the reference criteria in the validation analysis. Results: Both measures had good discriminative ability showing significant differences in FEV1 and AQLQ scores between control classification both cross-sectionally and longitudinally (p &lt; 0.001). Overall both of the composite measures accounted for more of the variance in FEV1 after 52 weeks than the individual components of each asthma control measure. Both of the reference criteria were independently related to each asthma control measure (p &lt; 0.0001). The measures also had good predictive validity showing significant differences in FEV1 and AQLQ scores at 52 weeks by control classification at 12 weeks (p &lt; 0.0001). Conclusion: The guideline-based composite asthma control measures of WC asthma and TC asthma have good psychometric properties and are both valid functional indices of disease control in asthma

Universal design for learning: Assistance for teachers in today’s inclusive classrooms

Universal design for learning (UDL) is a valuable tool for the proactive planning of engaging, accessible lessons in today&apos;s diverse classrooms. UDL focuses on three core principles-representation, expression, and engagement-to help educators develop motivating, accessible instruction that will increase the participation of all learners, including those with special needs. Classroom application of UDL includes the use of technology, multiple modalities of instruction, flexible assessment, and group activities to give students choices and provide them with opportunities to empower themselves as learners. Although there is not yet a conclusive body of quantitative research on student outcomes related to UDL, the literature documents benefits that include reduced behavior problems, increased metacognitive knowledge, and improved access to the curriculum for struggling learners

'It's not one size fits all':A qualitative study of patients' and healthcare professionals' views of self-management for bronchiectasis

Background Bronchiectasis is a chronic respiratory condition that impacts significantly on individuals and healthcare services. Self-management is recommended in clinical guidelines for bronchiectasis as an intervention to enable patients to manage their condition, yet there is little evidence to support it.Methods Three face to face focus groups (17 adults with bronchiectasis) were conducted at three National Health Service (NHS) sites in North West England. Additionally, semi-structured telephone interviews were undertaken with 11 healthcare professionals (HCPs), including doctors, nurses and physiotherapists. Thematic analysis identified common themes and occurrences verified by independent audit.Findings Four common overarching themes were identified: the meaning of self-management; benefits; barriers and influencers to self-management; subthemes varied. Both groups recognised component interventions. Patients highlighted that self-management enabled them to learn what works and moderate behaviour. Aspects of delivery and structure were important to HCPs but a ‘make do’ culture was evident. Benefits for both groups included empowering patients. Common barriers for patients were time, mood and lack of access to support which could mitigate engagement with self-management. HCPs identified barriers including patient characteristics and lack of resources. Influencers for patients were peer, carer and psychosocial support, for HCPs influencers were individual patient attributes, including ability and motivation, and HCP characteristics such as knowledge and understanding about bronchiectasis.Summary This is the first study to explore patients’ and HCPs’ views of self-management for bronchiectasis. The need for an individual, flexible and responsive self-management programme specific to bronchiectasis was evident. Personal characteristics of patients and HCPs could affect the uptake and engagement with self-management and HCPs knowledge of the disease is a recognised precursor to effective self-management. The study identified key aspects for consideration during development, delivery and sustainability of self-management programmes and findings suggest that patients’ psychosocial and socioeconomic circumstances may affect adoption and activation of self-management behaviours