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Phase I cancer trials: a qualitative study of specialist palliative care
  1. Sarah Bellhouse1,2,
  2. Lucy Galvin3,
  3. Lorraine Turner4,
  4. Sally Taylor1,
  5. Michelle Davies4,
  6. Matthew Krebs4,5,
  7. Richard Berman6,7 and
  8. Janelle Yorke1,8
  1. 1 Christie Patient Centred Research (CPCR), The Christie NHS Foundation Trust, Manchester, UK
  2. 2 Manchester Centre for Health Psychology, School of Health Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK
  3. 3 School of Natural Sciences and Psychology, Liverpool John Moores University, Liverpool, UK
  4. 4 NIHR Manchester Clinical Research Facility, The Christie NHS Foundation Trust, Manchester, UK
  5. 5 Division of Cancer Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK
  6. 6 Department of Supportive Care, The Christie NHS Foundation Trust, Manchester, UK
  7. 7 Enhanced Supportive Care CQUIN programme, NHS England, Manchester, UK
  8. 8 Division of Nursing, Midwifery and Social Work, School of Health Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK
  1. Correspondence to Professor Janelle Yorke, Christie Patient Centred Research (CPCR), The Christie NHS Foundation Trust, Manchester M20 4BX, UK; janelle.yorke{at}manchester.ac.uk

Abstract

Objective In recent years, a simultaneous care model for advanced cancer patients has been recommended meaning that palliative care services are offered throughout their cancer journey. To inform the successful adoption of this model in a phase I trial context, the study aimed to explore patients’ care needs and their perceptions of specialist palliative care.

Methods Semi-structured interviews were conducted with 10 advanced cancer patients referred to the Experimental Cancer Medicine team. Interviews were transcribed verbatim and thematically analysed with a framework approach to data organisation.

Results Despite reporting considerable physical and psychological impacts from cancer and cancer treatment, participants did not recognise a need for specialist palliative care support. Understanding of the role of specialist palliative care was largely limited to end of life care. There was perceived conflict between considering a phase I trial and receiving specialist palliative care. Participants felt specialist palliative care should be introduced earlier and educational resources developed to increase patient acceptability of palliative care services.

Significance of results Patients with advanced cancer referred for phase I trials are likely to benefit from specialist palliative care. However, this study suggests patients may not recognise a need for support nor accept this support due to misperceptions about the role of palliative care. Developing a specific educational resource about specialist palliative care for this population would help overcome barriers to engaging with a simultaneous care model.

  • palliative care
  • cancer
  • clinical trials
  • symptoms and symptom management
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Footnotes

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  • Contributors Conception and design: JY, MK, CWS; data collection: CWS; data analysis and interpretation: SB, LG, ST, LT and JY; drafting of the paper: SB, LG, LT, ST, MD, MK, RB and JY; all authors reviewed the manuscript and approved the final draft.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Participants provided informed written consent prior to data collection.

  • Ethics approval The study received ethical approval (Ref: 15/NW/0877; North West Liverpool Central Research Ethics Committee).

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

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information.

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