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Palliative care for patients around the time of haematopoietic stem cell transplant: a qualitative study of patients’ perceptions and experiences of unmet need and attitudes towards palliative care involvement

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Abstract

Background

Haemato-oncology patients are likely to be referred later to palliative care than patients with solid tumours, despite experiencing similar symptom burden. Patients prior to stem cell transplant may benefit from symptom control, advance care planning and shared decision-making, and previous studies have demonstrated feasibility and benefit of such a service. However, the views of patients are not yet established, and are vital to ensure acceptability of the service.

Aims

To identify areas where a palliative care team may help to support patients being considered for a stem cell transplant, and to explore the attitudes and perceptions of patients towards palliative care at this time.

Design

A qualitative study including interviews (N = 12) and a focus group (N = 4) for patients pre- and post-transplant, using a semi-structured format via telephone, online video-conferencing and face-to-face discussions. Recordings were transcribed and analysed using thematic analysis.

Setting

A tertiary cancer centre in the UK.

Findings

Themes identified were the following: Identified needs, Information and decision-making, Importance of relationships, Changing perceptions of what palliative care means, and The future.

Patients associate palliative care with terminal care due to indirect experiences. Patients were open to palliative care once its purpose was explained and described emotional and physical needs relevant to early palliative care.

Conclusions

The involvement of early palliative care alongside haematology treatment prior to stem cell transplant may improve quality of life for patients and facilitate shared decision-making at a crucial stage of treatment. Early palliative care should be offered alongside haematology care around the time of stem cell transplant, with information provided to patients regarding its role.

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Funding

Patient and Public Involvement in this study was supported by a grant from the Royal Marsden National Institute of Health Research (NIHR) Biomedical Research Centre.

Author information

Authors and Affiliations

  1. Palliative Care Department, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK

    Rebecca Gemmell, Angela Halley, Anna-Marie Stevens & Joanne Droney

  2. Public and Patient Representative, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK

    Alison Allam & Margaret Perkins

  3. Haematology Department, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK

    Mark Ethell & Priya Sriskandarajah

Authors
  1. Rebecca Gemmell
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  2. Angela Halley
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  3. Anna-Marie Stevens
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  4. Alison Allam
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  5. Margaret Perkins
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  6. Mark Ethell
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  7. Priya Sriskandarajah
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  8. Joanne Droney
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Rebecca Gemmell, Alison Allam, Margaret Perkins, Anna-Marie Stevens and Joanne Droney. The first draft of the manuscript was written by Rebecca Gemmell and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Rebecca Gemmell.

Ethics declarations

Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. This study was approved by the Royal Marsden Committee for Clinical Research, Bloomsbury Research Ethics Committee and the Health Research Authority on 1st June 2020 (20/LO/0526).

Consent to participate

Informed written consent was obtained from all individual participants included in the study, including consent to publish non-identifying excerpts.

Consent for publication

Informed written consent was obtained from all individual participants included in the study, including consent to publish non-identifying excerpts.

Conflict of interest

The authors declare no competing interests.

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Gemmell, R., Halley, A., Stevens, AM. et al. Palliative care for patients around the time of haematopoietic stem cell transplant: a qualitative study of patients’ perceptions and experiences of unmet need and attitudes towards palliative care involvement. Support Care Cancer 30, 2253–2261 (2022). https://doi.org/10.1007/s00520-021-06556-4

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  • DOI: https://doi.org/10.1007/s00520-021-06556-4

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