Anti-PD1 has improved survival in advanced melanoma. However, clinical trials routinely exclude patients with performance status (PS)>1 or active brain metastases, and little is known about real-world patients’ experience or understanding of antiPD1.
In-depth individual semi-structured interviews were conducted with 19 patients with stage IV melanoma receiving pembrolizumab off clinical trials at an Australian public cancer hospital; and explored patients’ experience of treatment. Patients were recruited from a range of time points post commencing therapy.
11/19 (61%) of patients were interviewed after >14 weeks of antiPD1 treatment; 8/19 (42%) had brain metastases; baseline PS were as follows: PS 0 = 7/19 (37%), PS 1 = 10/19 (53%), PS 2 = 2/19 (11%). Patients reported immunotherapy represented a symbol of hope with perceived low toxicity. The decision to start immunotherapy was based on clinician recommendation or high media profile anecdotes rather than exact information about efficacy or toxicity. Patients had a wide range of understanding of immunotherapy rationale and toxicity, with strong dependence on oncology nurses for toxicity monitoring. Patients perceived treatment to be of low toxicity, some describing it as chemotherapy or ‘experimental’ therapy and some did not associate toxicity symptoms as a treatment side effect. Patients <14 weeks were keen to have continuous treatment, whereas patients > 14 weeks had a range of opinions regarding treatment duration: most preferred continuous, whereas others preferred stopping with frequent imaging. Patients with treated brain metastases reported multiple active symptoms, significant functional impact and loss of independence.
This study identified unmet needs for patients with brain metastases and two areas for the development of educational tools to improve patients’ understanding of the clinical recommendation for immunotherapy, the possible toxicity of therapy, as well as tools to assist in decisions on duration of therapy.