Patients' experiences of the decision‐making process for clinical trial participation

Abstract

Clinical decision-making about participating in a clinical trial is a complex process influenced by overwhelming information about prognosis, disease, and treatment options. The study aimed to explore patients' experiences of the decision-making process when patients are presented with the opportunity to participate in a cancer clinical trial and to shed light on how patients experience the health communication, the nurse's role, and the physician's role. A qualitative study design was applied. Nine patients with advanced cancer were interviewed after being informed about their treatment options.Data were analyzed using thematic analysis. The results showed that patients made treatment decisions mainly guided by their emotions and trust in the physician. Furthermore, the physicians had a great impact on the decisions, and the nurse's role was associated with conversations about how to manage life. The study highlights the importance of talking about prognosis and addressing the patient's existential issues, particularly in this context of advanced cancer. The study elucidates a need for healthcare professionals to engage in health communication about life when it is coming to an end.

Patient communication and experiences in cancer clinical drug trials: a mixed-method study at a specialist clinical trials unit

“…In agreement with other studies, we found that patients’ decisions to enrol in a clinical cancer trial were mostly influenced by emotions and trusting relationships with trial staff rather than engaging with often dense written information [ 7 , 10 , 15 ]. Some patients who found PICFs difficult to read viewed them as a legal formality and preferred learning about study information through verbal conversations with their trusted treating team.…”

Shared decision-making in palliative cancer care: A systematic review and metasynthesis

“…Physicians perceive themselves as responsible, 37,42,44,48 nurses experience physicians as having the leading role, 59,61 and people with cancer and their informal carers rely on and trust physicians to be the expert and know what is in their patients' best interests. [38][39][40][41]46,[48][49][50]56,57 Gregersen et al 46…”

“…People with cancer and also health care professionals consider personal attributes such as experience, knowledge and communication skills as important for shared decision-making in palliative cancer care. 47,56,[59][60][61] Person-centred communication skills and the development of a trusting relationship are considered necessary to enable shared decision-making, 38,41,46,50,55,56,[60][61][62] as Lee et al 62…”

“…43,51 The patient-physician dyad is central, and people with cancer, nurses and other healthcare professionals perceive that other health care professionals generally have limited roles in shared decision-making. 43,45,46,48,50,[59][60][61] However, other healthcare professionals facilitate and support shared decision-making in several ways.…”

“…Personal communication skills and the development of trusting relationships are important, in addition to organisational aspects like a supportive culture, for shared decision-making and interprofessional teamwork. 38,[41][42][43][46][47][48]50,55,56,[59][60][61][62] The review by Kuosmanen et al, 29 similarly found that prerequisites for participating in shared decision-making are interdisciplinary teamwork, open communication, good patient-healthcare professional relationships, a favourable environment and mutual exchange of information between patients and healthcare professionals. 29 Most of the included studies in our metasynthesis addressed treatment decision-making and showed that the patient and the medical specialist are in the centre of decision-making for these decisions.…”