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1.
Eur Respir J ; 60(5)2022 11.
Article in English | MEDLINE | ID: mdl-35728974

ABSTRACT

Bronchiectasis is being diagnosed increasingly in children and adolescents. Recurrent respiratory exacerbations are common in children and adolescents with this chronic pulmonary disorder. Respiratory exacerbations are associated with an impaired quality of life, poorer long-term clinical outcomes, and substantial costs to the family and health systems. The 2021 European Respiratory Society (ERS) clinical practice guideline for the management of children and adolescents with bronchiectasis provided a definition of acute respiratory exacerbations for clinical use but to date there is no comparable universal definition for clinical research. Given the importance of exacerbations in the field, this ERS Task Force sought to obtain robust definitions of respiratory exacerbations for clinical research. The panel was a multidisciplinary team of specialists in paediatric and adult respiratory medicine, infectious disease, physiotherapy, primary care, nursing, radiology, methodology, patient advocacy, and parents of children and adolescents with bronchiectasis. We used a standardised process that included a systematic literature review, parent survey, and a Delphi approach involving 299 physicians (54 countries) caring for children and adolescents with bronchiectasis. Consensus was obtained for all four statements drafted by the panel as the disagreement rate was very low (range 3.6-7.2%). The panel unanimously endorsed the four consensus definitions for 1a) non-severe exacerbation and 1b) severe exacerbation as an outcome measure, 2) non-severe exacerbation for studies initiating treatment, and 3) resolution of a non-severe exacerbation for clinical trials involving children and adolescents with bronchiectasis. This ERS Task Force proposes using these internationally derived, consensus-based definitions of respiratory exacerbations for future clinical paediatric bronchiectasis research.


Subject(s)
Anti-Bacterial Agents , Bronchiectasis , Adult , Adolescent , Child , Humans , Anti-Bacterial Agents/therapeutic use , Quality of Life , Bronchiectasis/therapy , Bronchiectasis/drug therapy , Respiratory System , Outcome Assessment, Health Care
2.
ERJ Open Res ; 7(3)2021 Jul.
Article in English | MEDLINE | ID: mdl-34291113

ABSTRACT

The global burden of children and young people (CYP) with bronchiectasis is being recognised increasingly. They experience a poor quality of life and recurrent respiratory exacerbations requiring additional treatment, including hospitalisation. However, there are no published data on patient-driven clinical needs and/or research priorities for paediatric bronchiectasis. Parent/patient-driven views are required to understand the clinical needs and research priorities to inform changes that benefit CYP with bronchiectasis and reduce their disease burden. The European Lung Foundation and the European Respiratory Society Task Force for paediatric bronchiectasis created an international roadmap of clinical and research priorities to guide, and as an extension of, the clinical practice guideline. This roadmap was based on two global web-based surveys. The first survey (10 languages) was completed by 225 respondents (parents of CYP with bronchiectasis and adults with bronchiectasis diagnosed in childhood) from 21 countries. The parent/patient survey encompassed both clinical and research priorities. The second survey, completed by 258 health practitioners from 54 countries, was limited to research priorities. The two highest clinical needs expressed by parents/patients were: having an action management plan for flare-ups/exacerbations and access to physiotherapists. The two highest health practitioners' research priorities related to eradication of airway pathogens and optimal airway clearance techniques. Based on both surveys, the top 10 research priorities were derived, and unanimous consensus statements were formulated from these priorities. This document addresses parents'/patients' clinical and research priorities from both the parents'/patients' and clinicians' perspectives and will help guide research and clinical efforts to improve the lives of people with bronchiectasis.

3.
Eur Respir J ; 58(2)2021 08.
Article in English | MEDLINE | ID: mdl-33542057

ABSTRACT

There is increasing awareness of bronchiectasis in children and adolescents, a chronic pulmonary disorder associated with poor quality of life for the child/adolescent and their parents, recurrent exacerbations, and costs to the family and health systems. Optimal treatment improves clinical outcomes. Several national guidelines exist, but there are no international guidelines.The European Respiratory Society (ERS) Task Force for the management of paediatric bronchiectasis sought to identify evidence-based management (investigation and treatment) strategies. It used the ERS standardised methodology that included a systematic review of the literature and application of the GRADE (Grading of Recommendations Assessment, Development and Evaluation) approach to define the quality of the evidence and level of recommendations.A multidisciplinary team of specialists in paediatric and adult respiratory medicine, infectious disease, physiotherapy, primary care, nursing, radiology, immunology, methodology, patient advocacy and parents of children/adolescents with bronchiectasis considered the most relevant clinical questions (for both clinicians and patients) related to managing paediatric bronchiectasis. 14 key clinical questions (seven PICO (Patient, Intervention, Comparison, Outcome) and seven narrative) were generated. The outcomes for each PICO were decided by voting by the panel and parent/patient advisory group.This guideline addresses the definition, diagnostic approach and antibiotic treatment of exacerbations, pathogen eradication, long-term antibiotic therapy, asthma-type therapies (inhaled corticosteroids and bronchodilators), mucoactive drugs, airway clearance, investigation of underlying causes of bronchiectasis, disease monitoring, factors to consider before surgical treatment, and the reversibility and prevention of bronchiectasis in children/adolescents. Benchmarking quality of care for children/adolescents with bronchiectasis to improve clinical outcomes and evidence gaps for future research could be based on these recommendations.


Subject(s)
Asthma , Bronchiectasis , Adolescent , Adrenal Cortex Hormones/therapeutic use , Adult , Bronchiectasis/drug therapy , Bronchiectasis/therapy , Bronchodilator Agents/therapeutic use , Child , Humans , Quality of Life
4.
Health Inf Manag ; 46(1): 23-31, 2017 Jan.
Article in English | MEDLINE | ID: mdl-27574187

ABSTRACT

BACKGROUND: Inpatient care is dependent upon the effective transfer of clinical information across multiple professions. However, documented patient clinical information generated by different professions is not always successfully transferred between them. One obstacle to successful information transfer may be the reader's perception of the information, which is framed in a particular professional context, rather than the information per se. OBJECTIVE: The aim of this research was to investigate how different health professionals perceive allied health documentation and to investigate how clinicians of all experience levels across medicine, nursing and allied health perceive and use allied health notes to inform their decision-making and treatment of patients. METHOD: The study used a qualitative approach. A total of 53 speech pathologists, nurses, doctors, occupational therapists, dieticians and social workers (8 males; 43 females) from an Australian regional tertiary hospital participated in eleven single discipline focus groups, conducted over 4 months in 2012. Discussions were recorded and transcribed verbatim and coded into themes by content analysis. FINDINGS: Six themes contributing to the efficacy of clinical information transference emerged from the data: day-to-day care, patient function, discharge and discharge planning, impact of busy workloads, format and structure of allied health documentation and a holistic approach to patient care. DISCUSSION: Other professions read and used allied health notes albeit with differences in focus and need. Readers searched for specific pieces of information to answer their own questions and professional needs, in a process akin to purposive sampling. Staff used allied health notes to explore specific aspects of patient function but did not obtain a holistic picture. CONCLUSION: Improving both the relationship between the various health professions and interpretation of other professions' documented clinical information may reduce the frequency of communication errors, thereby improving patient care.


Subject(s)
Allied Health Personnel/psychology , Clinical Decision-Making , Documentation , Inpatients , Interdisciplinary Communication , Nursing Staff, Hospital/psychology , Physicians/psychology , Adult , Female , Focus Groups , Humans , Male , Patient Discharge , Qualitative Research , Workload
5.
NMR Biomed ; 24(6): 612-35, 2011 Jul.
Article in English | MEDLINE | ID: mdl-21567513

ABSTRACT

MRI and MRS techniques are being applied to the characterisation of various aspects of the tumour microenvironment and to the assessment of tumour response to therapy. For example, kinetic parameters describing tumour blood vessel flow and permeability can be derived from dynamic contrast-enhanced MRI data and have been correlated with a positive tumour response to antivascular therapies. The ongoing development and validation of noninvasive, high-resolution anatomical/molecular MR techniques will equip us with the means to detect specific tumour biomarkers early on, and then to monitor the efficacy of cancer treatments efficiently and reliably, all within a clinically relevant time frame. Reliable tumour microenvironment imaging biomarkers will provide obvious advantages by enabling tumour-specific treatment tailoring and potentially improving patient outcome. However, for routine clinical application across many disease types, such imaging biomarkers must be quantitative, robust, reproducible, sufficiently sensitive and cost-effective. These characteristics are all difficult to achieve in practice, but image biomarker development and validation have been greatly facilitated by an increasing number of pertinent preclinical in vivo cancer models. Emphasis must now be placed on discovering whether the preclinical results translate into an improvement in patient care and, therefore, overall survival.


Subject(s)
Magnetic Resonance Imaging , Neoplasms/pathology , Neoplasms/therapy , Tumor Microenvironment , Contrast Media , Extracellular Matrix/metabolism , Humans , Magnetic Resonance Spectroscopy , Neoplasms/blood supply
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