Background and purpose: Symptoms in glioma patients are distinctly different from symptoms in patients with other types of cancer and have a high impact on quality of life. In this study, a stepwise approach of developing a glioma module for assessment of symptoms, based on a Dutch adapted and validated version of the Edmonton Symptom Assessment System, is described.
Methods: Three phases of instrument development were conducted: a systematic literature review and a focus group interview with experts were performed (phase I) to generate relevant symptoms and construct a preliminary module (phase II). In phase III, the preliminary module was evaluated (n = 25) and pretested (n = 45) in glioma patients representing all phases of the disease.
Results: Our glioma module contains 11 generic and 6 neurologic symptoms. Patients completed the glioma module in a median of 5 minutes, and 56% of the patients required some assistance to complete the instrument.
Conclusion: The glioma module has initial validity and will benefit from prospective validation in a larger cohort of patients with glioma.