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Oncology
Protocol
Development of an intervention to support patients and clinicians with advanced lung cancer when considering systemic anticancer therapy: protocol for the PACT study
  1. Despina Anagnostou1,
  2. Stephanie Sivell1,
  3. Simon Noble1,
  4. Jason Lester2,
  5. Anthony Byrne3,
  6. Catherine Sampson1,
  7. Mirella Longo1,
  8. Annmarie Nelson1
  1. 1 Marie Curie Research Centre, School of Medicine, Cardiff University, Cardiff, UK
  2. 2 Department of Clinical Oncology, Velindre NHS Trust UK, Cardiff, UK
  3. 3 Department of Palliative Medicine, Cardiff and Vale University Health Board, Cardiff, UK
  1. Correspondence to Dr Despina Anagnostou; anagnostoud{at}cardiff.ac.uk

Abstract

Introduction Patient-centred care is essential to the delivery of healthcare; however, this necessitates direct patient involvement in clinical decision-making and can be challenging for patients diagnosed with advanced non-small cell lung cancer where there may be misunderstanding of the extent of disease, prognosis and aims of treatment. In this context, decisions are complex and there is a need to balance the risks and benefits, including treatment with palliative intent. The aim of the PACT study is to identify the information and decision support needs of patients, leading to the development of an intervention to support patients with advanced lung cancer when considering treatment options.

Methods and analysis PACT is a five-stage, multimethod and multicentre study. Participants: Patients and health professionals will be recruited from three health boards. Methods: Non-participant observation of multidisciplinary team meetings (n=12) will be used to determine patients’ allocation to treatment pathways (stage I). Non-participant observation of patient–clinician consultations (n=20–30) will be used to explore communication of treatment options and decision-making. Extent of participation in decision-making will be assessed using the Observing Patient Involvement in Shared Decision-Making tool. Interviews with patients (stage III) and their clinicians (stage IV) will explore the perception of treatment options and involvement in decision-making. Based on stages I–IV, an expert consensus meeting will finalise the content and format of the intervention. Cognitive interviews with patients will then determine the face validity of the intervention (stage V). Analysis: analysis will be according to data type and research question and will include mediated discourse analysis, thematic analysis, framework analysis and interpretative phenomenological analysis.

Ethics and dissemination Ethical approval has been granted. The study findings will contribute to and promote shared and informed decision-making in the best interest of patients and prudent healthcare. We therefore aim to disseminate results via relevant respiratory, oncology and palliative care journals and conferences.

  • qualitative research
  • palliative care
  • lung cancer
  • decision-making
  • quality of life
  • treatment pathway

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 and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2016-015277

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    Footnotes

    • Contributors AN conceived and designed the study. AN, SN, AB, SS, JL and DA developed the study protocol. DA drafted the manuscript, and AN, ML, CS and SS contributed to the drafting of the manuscript. All authors reviewed and commented on the drafts of this manuscript. DA managed ethics and coordinates the study fieldwork, including sampling and data collection, supported by CS. All authors are expected to make substantial contributions to the analysis and interpretation of the data. All authors read and approved the final manuscript.

    • Funding This study is supported by The Velindre Stepping Stones Appeal within Velindre NHS Trust Charitable Funds; grant number 2013/009.

    • Competing interests JL and SN have been fundraisers for the Stepping Stones Charity (the funder) and hold places on the Steering Committee. However, they have no direct decision making powers regarding awarding funds which is managed by Velindre Cancer Centre Charitable Funds Committee. This does not constitute conflict of interest.

    • Patient consent Obtained.

    • Ethics approval Wales REC 6.

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

    • Correction notice This article has been corrected since it was published Online First. In the Contributor statement, the initials SC have been corrected to SS as it refers to name Stephanie Sivell.