Patient perspectives on diagnostic uncertainty and novel diagnostic tests in neuro-oncology

In the follow-up of glioma patients, differentiating treatment-associated changes from tumor progression on MRI is challenging. In the Netherlands, this diagnostic uncertainty often leads to watchful waiting, delayed treatment, and patient distress. So far, research on new diagnostic tests has primarily focused on accuracy, while patient perspectives remain largely unexplored. This qualitative study aimed to explore glioma patients' perspectives on diagnostic uncertainty and the implementation of tests aimed at reducing uncertainty.

Semi-structured interviews were conducted with 10 diffuse glioma patients (31-70 years old; 50% female) treated at UMC Utrecht, the Netherlands. Two independent coders analyzed interview transcripts thematically to identify key themes in patient perspectives.

Four themes were found: (1) Most patients experienced diagnostic uncertainty, which was stressful for themselves and their loved ones. (2) A new test was considered meaningful if it provided early certainty. Patients wanted certainty to guide treatment, and even without therapeutic options, a certain diagnosis could optimize quality of life by living more consciously. (3) All patients wished to participate in decision-making regarding undergoing new tests, with variable preferences regarding the amount of information to be received. (4) Patients expressed the need for continuity of care, honest communication, and immediate disclosure of test results.

Patients value faster certainty from new diagnostic tests, both to guide treatment for improved survival and quality of life and to optimize quality of life when no therapeutic options remain. Integrating this emphasis on quality of life into diagnostic research may stimulate patient-centered test implementation, ultimately improving neuro-oncological care.