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Qualitative evaluation of motives for acceptance or refusal of early palliative care in patients included in early-phase clinical trials in a French comprehensive cancer center: the PALPHA study

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Abstract

Purpose

The integration of palliative care (PC) into oncological management is recommended well before the end of life. It improves quality of life and symptom control and reduces the aggressiveness of end-of-life care. However, its appropriate timing is still debated. Entry into an early-phase clinical trial (ECT) represents hopes for the patient when standard treatments have failed. It is an opportune moment to integrate PC to preserve the patient’s general health status. The objective of this study was to evaluate the motives for acceptance or refusal of early PC management in patients included in an ECT.

Methods

Patients eligible to enter an ECT were identified and concomitant PC was proposed. All patients received exploratory interviews conducted by a researcher. Their contents were analyzed in a double-blind thematic analysis with a self-determination model.

Results

Motives for acceptance (PC acceptors: n = 27) were both intrinsic (e.g., pain relief, psychological support, anticipation of the future) and extrinsic (e.g., trust in the medical profession, for a relative, to support the advance of research). Motives for refusal (PC refusers: n = 3) were solely intrinsic (e.g., PC associated with death, negative representation of psychological support, no need for additional care, claim of independence).

Conclusions

The motives of acceptors and refusers are not internalized in the same way and call for different autonomy needs. Acceptors and refusers are influenced by opposite representations of PC and a different perception of mixed management.

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Data availability

No datasets were generated or analysed during the current study.

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Acknowledgements

This work was supported by La Ligue Nationale contre le Cancer. We thank Julia Barbat and the Clinical Research Associates—Zohra Akkal, Sakina Benmameche-Medjahed, Carine Chabé—for their help. Finally, we also wish to thank all the patients for their participation.

Funding

This work was supported by La Ligue Nationale contre le Cancer (AK/IP/BC 16651). All authors have received research support from La Ligue contre le Cancer.

Author information

Authors and Affiliations

  1. Département Interdisciplinaire des Soins de Support en Oncologie, Centre Léon Bérard, 28 Rue Laënnec, 69373, Lyon Cedex 08, France

    Julie Duranti, Bénédicte Mastroianni, Olivier Renard & Gisèle Chvetzoff

  2. Département des Sciences Humaines et Sociales (SHS), Centre Léon Bérard, 28 Rue Laënnec, 69373, Lyon Cedex, France

    Mathilde Lochmann, Magali Girodet, Johanna Despax, Valentine Baudry, Amélie Anota & Véronique Christophe

  3. Département de Cancérologie Médicale, Centre Léon Bérard, 28 Rue Laënnec, 69373, Lyon Cedex, France

    Hélène Vanacker, Armelle Vinceneux, Mehdi Brahmi, Loïc Verlingue, Mona Amini-Adle, Aurélie Swalduz & Philippe A. Cassier

  4. Direction de la Recherche Clinique et de l’Innovation (DRCI), Centre Léon Bérard, 28 Rue Laënnec, 69373, Lyon Cedex, France

    Julien Gautier & Amélie Anota

  5. Evaluation Médicale et Sarcomes (EMS), Centre Léon Bérard, 28 Rue Laënnec, 69373, Lyon Cedex, France

    Magali Girodet & Françoise Ducimetière

  6. Centre de Recherche sur le Cancer de Lyon (CRCL), Centre Léon Bérard, 28 Rue Laënnec, 69373, Lyon Cedex, France

    Véronique Christophe

  7. Université Claude Bernard Lyon 1 (UCBL), 43 Bd du 11 Novembre 1918, 69100, Villeurbanne, France

    Véronique Christophe

Authors
  1. Mathilde Lochmann
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  2. Magali Girodet
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  3. Johanna Despax
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  4. Valentine Baudry
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  5. Julie Duranti
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  6. Bénédicte Mastroianni
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  19. Véronique Christophe
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Contributions

Conception and design: all authors Provision of study patients: Mona Amini-Adle, Mehdi Brahmi, Philippe Cassier, Helene Vanacker, Loïc Verlingue, Armelle Vinceneux, Aurélie Swalduz Collection and assembly of data: Amélie Anota, Valentine Baudry, Johanna Despax, Julien Gautier, Magali Girodet, Mathilde Lochmann Data analysis and interpretation: Mehdi Brahmi, Philippe Cassier, Véronique Christophe, Gisèle Chvetzoff, Johanna Despax, Julien Gautier, Magali Girodet, Mathilde Lochmann, Helene Vanacker, Armelle Vinceneux Writing: Valentine Baudry, Véronique Christophe, Gisèle Chvetzoff, Johanna Despax, Julie Duranti, Julien Gautier, Magali Girodet, Mathilde Lochmann, Helene Vanacker, Armelle Vinceneux Final approval of manuscript: all authors.

Corresponding author

Correspondence to Mathilde Lochmann.

Ethics declarations

Ethics approval

“PALPHA” was a research not involving human participants (NRIPH). It is performed in line with the principles of the Declaration of Helsinki. PALPHA complies with reference methodology MR004 (Ref. R201-004–064) of the Commission Nationale de l'Informatique et des Libertés (CNIL). PALPHA was registered with ClinicalTrials.gov as an observational study (NCT04717440). The protocol received a favorable opinion (advisory assent n°2020–006) from the independent Ethical Review Group of the Léon Bérard Center on December 15th, 2020.

Consent to participate

A patient information sheet was developed for the participants. They did not have to sign an informed consent form. Their non-opposition (i.e., oral declaration made by participants of their non-opposition to the research, applied to non-RIPH projects that do not require a consent form) was notified and traceable in their medical file.

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All personal data has been anonymized during the study and in this publication.

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The authors declare no competing interests.

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Lochmann, M., Girodet, M., Despax, J. et al. Qualitative evaluation of motives for acceptance or refusal of early palliative care in patients included in early-phase clinical trials in a French comprehensive cancer center: the PALPHA study. Support Care Cancer 32, 353 (2024). https://doi.org/10.1007/s00520-024-08535-x

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