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Cystic fibrosis
How can we relieve gastrointestinal symptoms in people with cystic fibrosis? An international qualitative survey
  1. Sherie Smith1,
  2. Nicola Rowbotham1,
  3. Gwyneth Davies2,
  4. Katie Gathercole3,
  5. Sarah J Collins4,
  6. Zoe Elliott5,
  7. Sophie Herbert1,
  8. Lorna Allen6,
  9. Christabella Ng1 and
  10. Alan Smyth1
  1. 1Child Health Obstetrics and Gynaecology, University of Nottingham, Nottingham, UK
  2. 2Institute of Child Health, UCL, London, UK
  3. 3Person with CF, University of Leeds, Leeds, West Yorkshire, UK
  4. 4CF Department, Royal Brompton and Harefield NHS Trust, London, UK
  5. 5Mother of Children with CF, Nottingham, UK
  6. 6Cystic Fibrosis Trust, London, UK
  1. Correspondence to Sherie Smith; sherie.smith{at}nottingham.ac.uk

Abstract

Introduction Relieving gastrointestinal (GI) symptoms was identified as a ‘top ten’ priority by our James Lind Alliance Priority Setting Partnership in cystic fibrosis (CF). We conducted an online survey to find out more about the effect of GI symptoms in CF.

Methods We co-produced an online survey distributed to the CF community via web-based platforms. The survey consisted of open and closed questions designed to help us learn more about the effects of GI symptoms for people with CF (pwCF). We analysed the data using descriptive statistics and thematic analysis. We promoted the survey via social media and web-based platforms which allowed respondents from any country to take part. Our participants came from the CF community, including: adults and children with CF, parents and close family of pwCF and healthcare professionals (HCPs) working with pwCF.

Results There were 276 respondents: 90 (33%) pwCF, 79 (29%) family, 107 (39%) HCPs. The most commonly reported symptoms by lay respondents were stomach cramps/pain, bloating and a ‘combination of symptoms’. The top three symptoms that HCPs said were reported to them were reduced appetite, bloating and constipation. Almost all (94% (85/90)) HCPs thought medications helped to relieve GI symptoms but only 58% (82/141) of lay respondents agreed.

Conclusions Our survey has shown that GI symptoms among our participants are prevalent and intrude on daily lives of pwCF. There is a need for well-designed clinical studies to provide better evidence for management of GI symptoms and complications.

  • cystic fibrosis
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjresp-2020-000614

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    Footnotes

    • Contributors AS and NR conceived and designed the study. SS, NR, GD, KG, SJC, ZE, SH, LA and AS were involved in the design and promotion of the survey. ZE promoted and monitored the promotion of the survey on Twitter. SS and NR performed data analysis and all authors were involved in interpretation of the analysis. CN provided expertise in the field of gastrointestinal function. SS drafted the manuscript and all authors reviewed and approved it for publication.

    • Funding This work was supported by the UK CF Trust (Grant number SDF002). NR was an NIHR Academic Clinical Fellow at University of Nottingham. GD was an NIHR Clinical Trials Fellow and was previously supported by a NIHR Clinical Lectureship at UCL. AS is supported by the Nottingham NIHR Biomedical Research Centre. All research at Great Ormond Street Hospital NHS Foundation Trust and UCL Great Ormond Street Institute of Child Health is made possible by the NIHR Great Ormond Street Hospital Biomedical Research Centre.

    • Competing interests GD reports personal fees from Chiesi, outside the submitted work. CN reports grants from Cystic Fibrosis Foundation, grants from Cystic Fibrosis Trust, grants and other from Vertex Pharmaceuticals, outside the submitted work. NR has given lectures at meetings sponsored by TEVA and has attended meetings sponsored by Vertex. AS reports a research grant and personal fees from Vertex. He has spoken at meetings supported by Teva and Novartis. These activities are outside the submitted work. In addition, AS has a patent for ‘Alkyl quinolones as biomarkers of Pseudomonas aeruginosa infection and uses thereof’ issued.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Patient consent for publication Not required.

    • Ethics approval This was a continuation of our James Lind Alliance priority setting work and therefore did not require ethical approval. The survey was anonymous and promoted through social

      media.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement No data are available. The survey, numbers of respondents and protocol for the James Lind CF2 project as a whole are included as supplementary documents. No additional data are available.