Paediatric Pulmonology

Icon for PubMed Central Related Articles

Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD.

ERJ Open Res. 2020 Jan;6(1):

Authors: Goutaki M, Papon JF, Boon M, Casaulta C, Eber E, Escudier E, Halbeisen FS, Harris A, Hogg C, Honore I, Jung A, Karadag B, Koerner-Rettberg C, Legendre M, Maitre B, Nielsen KG, Rubbo B, Rumman N, Schofield L, Shoemark A, Thouvenin G, Willkins H, Lucas JS, Kuehni CE

Abstract
Clinical data on primary ciliary dyskinesia (PCD) are limited, heterogeneous and mostly derived from retrospective chart reviews, leading to missing data and unreliable symptoms and results of physical examinations. We need standardised prospective data collection to study phenotypes, severity and prognosis and improve standards of care. A large, international and multidisciplinary group of PCD experts developed FOLLOW-PCD, a standardised clinical PCD form and patient questionnaire. We identified existing forms for clinical data collection via the Better Experimental Approaches to Treat PCD (BEAT-PCD) COST Action network and a literature review. We selected and revised the content items with the working group and patient representatives. We then revised several drafts in an adapted Delphi process, refining the content and structure. FOLLOW-PCD has a modular structure, to allow flexible use based on local practice and research focus. It includes patient-completed versions for the modules on symptoms and lifestyle. The form allows a comprehensive standardised clinical assessment at baseline and for annual reviews and a short documentation for routine follow-up. It can either be completed using printable paper forms or using an online REDCap database. Data collected in FOLLOW-PCD version 1.0 is available in real-time for national and international monitoring and research. The form will be adapted in the future after extensive piloting in different settings and we encourage the translation of the patient questionnaires to multiple languages. FOLLOW-PCD will facilitate quality research based on prospective standardised data from routine care, which can be pooled between centres, to provide first-line and real-time evidence for clinical decision-making.

PMID: 32055632 [PubMed]

Library News

Image result for new

 

WMUH Library Discovery Tool

Check out our guide for a brief overview, how to access and use the Discovery tool. Trouble accessing or have questions?  Please contact us

BMJ Best Practice, clinical decision support tool is now available. Access it on the Trust intranet without any password, to access remotely login with NHS OpenAthens, download the app to access on mobile devices anywhere. See the  user guide for details.

Accessing Articles
Articles from journals marked in green are freely available or available in print in the library, or are available by using your NHS Athens account. You may need to click on 'Log in with Athens' to get an Athens login box.

If you don't have an NHS Athens account, you can register online, and if you do this on an NHS PC, you'll receive a confirmation email the same day.

Journals marked in orange aren't available online, but we hold print copies in the Library.

Journals marked in red aren't available online or in the Library but we can order articles  via our Inter Library Loan Service. There is a small charge for this. Please contact the library on ext 5968 or email Library.InfoService@chelwest.nhs.uk  for more information.

Quick Links
qrcode.14118297[1]