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Chemotherapy decision-making in advanced lung cancer: a prospective qualitative study
  1. Annmarie Nelson1,
  2. Mirella Longo1,
  3. Anthony Byrne1,
  4. Stephanie Sivell1,
  5. Simon Noble1,
  6. Jason Lester2,
  7. Lesley Radley3,
  8. David Jones3,
  9. Catherine Sampson1 and
  10. Despina Anagnostou1
  1. 1 Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff, South Glamorgan, UK
  2. 2 Velindre Cancer Centre, Cardiff, Cardiff, UK
  3. 3 Cardiff University, Cardiff, South Glamorgan, UK
  1. Correspondence to Professor Annmarie Nelson, Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff cf14 4ys, South Glamorgan, UK; nelsona9{at}Cardiff.ac.uk

Abstract

Objective To study how treatment decisions are made alongside the lung cancer clinical pathway.

Methods A prospective, multicentre, multimethods, five-stage, qualitative study. Mediated discourse, thematic, framework and narrative analysis were used to analyse the transcripts.

Results 51 health professionals, 15 patients with advanced lung cancer, 15 family members and 18 expert stakeholders were recruited from three UK NHS trusts. Multidisciplinary team (MDT) members constructed treatment recommendations around patient performance status, pathology, clinical information and imaging. Information around patients’ social context, needs and preferences were limited. The provisional nature of MDTs treatment recommendations was not always linked to future discussions with the patient along the pathway, that is, patients’ interpretation of their prognosis, treatment discussions occurring prior to seeing the oncologist. This together with the rapid disease trajectory placed additional stress on the oncologist, who had to introduce a different treatment option from that recommended by the MDT or patient’s expectations. Palliative treatment was not referred to explicitly as such, due to its potential for confusion. Patients were unaware of the purpose of each consultation and did not fully understand the non-curative intent of treatment pathways. Patients’ priorities were framed around social and family needs, such as being able to attend a family event.

Conclusion Missed opportunities for information giving, affect both clinicians and patients; the pathway for patients with non-small cell lung cancer focuses on clinical management at the expense of patient-centred care. Treatment decisions are a complex process and patients draw conclusions from healthcare interactions prior to the oncology clinic, which prioritises aggressive treatment and influences decisions.

  • communication
  • lung
  • supportive care
  • clinical assessment
  • quality of life

Data availability statement

Data are available upon reasonable request. Anonymised narratives from the transcripts will be available upon request.

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/.

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Data availability statement

Data are available upon reasonable request. Anonymised narratives from the transcripts will be available upon request.

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Footnotes

  • X @annmarienelson0, @MirellaLongo18

  • Contributors AN conceived and designed the study; drafted the manuscript. AN, SN, AB, SS and JL secured funding for the study. DA, CS and ML led the collection and analysis of the data. All authors made substantial contribution to the analysis and interpretation of the data. The public contributors (LR and DJ) supported the study throughout and carried out the validation of the findings. ML and CS contributed to the drafting of the manuscript. All authors reviewed and commented on the drafts of this manuscript. All authors read and approved the final manuscript. CS and DA are joint last authors.

  • Funding This study was funded by The Velindre Stepping Stones Appeal within Velindre NHS Trust Charitable Funds; Grant No 2013/009. Sponsored by Cardiff University; and coordinated by the Marie Curie core-funded Marie Curie Palliative Care Research Centre at Cardiff University. AN, AB, ML, SS and SN’s posts are funded by Marie Curie Cancer Care core grant funding (grant reference MCCC-FCO-17-C).

  • Competing interests None declared.

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

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.