Phase I cancer trials: a qualitative study of specialist palliative care

Abstract

ObjectiveIn 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.MethodsSemi-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.ResultsDespite 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 resultsPatients 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.

Supportive Care: An Indispensable Component of Modern Oncology

“…Research suggests that ECMT patients are less inclined to accept traditional palliative care due to a general, and sometimes unrealistic, optimism regarding trial participation [ 56 ], alongside the perception that palliative care is only applicable at the end of life [ 57 ]. However, supportive care practices within the early phase trials setting have the potential to reduce the impact of symptom burden and adverse events on patients [ 52 ], potentially increasing trial recruitment and the length of time patients spend on an experimental therapy.…”

Oncology patients’ experiences in experimental medicine cancer trials: a qualitative study

“…Patients, who are physically or psychologically impacted, may benefit from specialist palliative care. 39 However, due to the conflicting beliefs (palliative care is for end of life whereas the trial provides hope for another treatment option) patients were less likely to access specialist palliative care. 39 The clinical trial teams may need to provide more information and education about the supports available to patients and the potential benefit of specialist palliative care alongside trial treatment.…”

Are we undermining the value of palliative care through advanced cancer clinical trial consent language?

“…23 Importantly, both pediatric and adult patients with cancer seem amenable to earlier integration of palliative care. 10,23 Early in training, we learn that our words matter: what we say and how we say it affect patients, their families, and the wider medical community. We choose our words to carefully balance our patients' hopes and worries.…”

“…The integration of palliative care and oncology care is particularly important in pediatrics, where patients and families often have blended goals throughout their illness trajectory 9 . Patients may mistakenly perceive early phase trials to be in opposition to palliative care, 10 and both patients and oncologists may not recognize the complementary nature of palliative care and disease‐focused therapy. For some individuals, the involvement of palliative care while they are enrolled in early phase trials may support the provision of goal‐concordant care by offering opportunities for symptom management, disease control, and ongoing treatment with a low risk of serious harm or toxicity 11,12 .…”

“…For example, although the majority of children survive their cancer, 22 some experience high levels of symptom‐related suffering early in their cancer treatment that would benefit from specialty palliative care 23 . Importantly, both pediatric and adult patients with cancer seem amenable to earlier integration of palliative care 10,23 …”