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      The impact of telehealth based care on paediatric cystic fibrosis outcomes

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          Abstract

          In response to the COVID-19 pandemic telehealth utilisation amongst the Cystic Fibrosis (CF) population increased. Our aim was to assess the impact of CF telehealth clinics on CF outcomes. We conducted a retrospective chart review of patients seen in the CF clinic at the Royal Children's Hospital (Victoria, Australia). In this review we compared spirometry, microbiology and anthropometry in the year preceding the pandemic to during the pandemic, and to the first in-person appointment in 2021. 214 patients were included. First in-person FEV 1 was median 5.4% below individuals’ best FEV 1 in 12 months prior to lockdown and decreased by >10% in 46 (31.9%) patients. There were no significant findings with regards to microbiology or anthropometry. The reduction in FEV 1 observed on return to in-person appointments highlights the importance of ongoing improvement of telehealth-based care along with continued face-to-face review for the paediatric CF population.

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          Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

          Paul A. Harris, Robert Taylor, Robert Thielke … (2009)
          Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.
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            Multi-ethnic reference values for spirometry for the 3-95-yr age range: the global lung function 2012 equations.

            Philip H. Quanjer, Sanja Stanojevic, Tim J. Cole … (2012)
            The aim of the Task Force was to derive continuous prediction equations and their lower limits of normal for spirometric indices, which are applicable globally. Over 160,000 data points from 72 centres in 33 countries were shared with the European Respiratory Society Global Lung Function Initiative. Eliminating data that could not be used (mostly missing ethnic group, some outliers) left 97,759 records of healthy nonsmokers (55.3% females) aged 2.5-95 yrs. Lung function data were collated and prediction equations derived using the LMS method, which allows simultaneous modelling of the mean (mu), the coefficient of variation (sigma) and skewness (lambda) of a distribution family. After discarding 23,572 records, mostly because they could not be combined with other ethnic or geographic groups, reference equations were derived for healthy individuals aged 3-95 yrs for Caucasians (n=57,395), African-Americans (n=3,545), and North (n=4,992) and South East Asians (n=8,255). Forced expiratory value in 1 s (FEV(1)) and forced vital capacity (FVC) between ethnic groups differed proportionally from that in Caucasians, such that FEV(1)/FVC remained virtually independent of ethnic group. For individuals not represented by these four groups, or of mixed ethnic origins, a composite equation taken as the average of the above equations is provided to facilitate interpretation until a more appropriate solution is developed. Spirometric prediction equations for the 3-95-age range are now available that include appropriate age-dependent lower limits of normal. They can be applied globally to different ethnic groups. Additional data from the Indian subcontinent and Arabic, Polynesian and Latin American countries, as well as Africa will further improve these equations in the future.
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              Standardization of Spirometry 2019 Update. An Official American Thoracic Society and European Respiratory Society Technical Statement

              Brian Graham, Irene Steenbruggen, Martin R Miller … (2019)
              Background: Spirometry is the most common pulmonary function test. It is widely used in the assessment of lung function to provide objective information used in the diagnosis of lung diseases and monitoring lung health. In 2005, the American Thoracic Society and the European Respiratory Society jointly adopted technical standards for conducting spirometry. Improvements in instrumentation and computational capabilities, together with new research studies and enhanced quality assurance approaches, have led to the need to update the 2005 technical standards for spirometry to take full advantage of current technical capabilities. Methods: This spirometry technical standards document was developed by an international joint task force, appointed by the American Thoracic Society and the European Respiratory Society, with expertise in conducting and analyzing pulmonary function tests, laboratory quality assurance, and developing international standards. A comprehensive review of published evidence was performed. A patient survey was developed to capture patients’ experiences. Results: Revisions to the 2005 technical standards for spirometry were made, including the addition of factors that were not previously considered. Evidence to support the revisions was cited when applicable. The experience and expertise of task force members were used to develop recommended best practices. Conclusions: Standards and consensus recommendations are presented for manufacturers, clinicians, operators, and researchers with the aims of increasing the accuracy, precision, and quality of spirometric measurements and improving the patient experience. A comprehensive guide to aid in the implementation of these standards was developed as an online supplement.
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                Author and article information

                Journal
                Journal ID (nlm-ta): J Cyst Fibros
                Journal ID (iso-abbrev): J Cyst Fibros
                Title: Journal of Cystic Fibrosis
                Publisher: European Cystic Fibrosis Society. Published by Elsevier B.V.
                ISSN (Print): 1569-1993
                ISSN (Electronic): 1873-5010
                Publication date PMC-release: 6 March 2023
                Publication date (Electronic): 6 March 2023
                Affiliations
                [a ]Respiratory and Sleep Medicine, The Royal Children's Hospital, Melbourne, Australia
                [b ]Respiratory Diseases, Murdoch Research Children's Institute, Melbourne, Australia
                [c ]Department of Paediatrics, University of Melbourne, Melbourne, Australia
                Author notes
                [* ]Corresponding author at: 52 Flemington Rd, Parkville VIC, 3052.
                Article
                Publisher Item ID: S1569-1993(23)00068-1
                DOI: 10.1016/j.jcf.2023.03.003
                PMC ID: 9987609
                PubMed ID: 36890065
                SO-VID: 4a58f9f3-357a-426b-acba-dd44aa4dfe68
                Copyright © © 2023 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
                License:

                Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.

                History
                Date received : 9 July 2022
                Date revision received : 12 January 2023
                Date accepted : 3 March 2023
                Categories
                Subject: Short Communication

                ScienceOpen disciplines: Genetics
                Keywords: cystic fibrosis,telehealth,spirometry,covid-19
                Data availability:
                ScienceOpen disciplines: Genetics
                Keywords: cystic fibrosis, telehealth, spirometry, covid-19

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