Purpose: There are few validated instruments that assess the symptom burden of skull base
tumors (SBT) survivors, especially for patients undergoing multimodality treatment
for malignant and complex benign tumors. MD Anderson Symptom Inventory (MDASI) was
developed to assess symptom burden in cancer patients and validated in 640 patients
with both solid and liquid tumors. Our aim is to understand the symptom profile and
to explore the utility for developing a skull base (SB) module of MDASI.
Methods: We recruited 29 patients with complex benign and malignant SBT for individual, semistructured,
qualitative interviews. Patients were interviewed with open-ended questions about
their experiences at diagnosis, during, and after treatment. The symptoms items from
the qualitative interviews were evaluated by an expert panel (EP) of 47 individuals
who rated the symptoms and their relevance to an average patient SBT receiving treatment.
The EP group included 12 patients and their caregivers, 12 physicians from 6 specialties,
and 11 multidisciplinary non-physician health care providers. Descriptive statistics
were used to analyze disease and treatment characteristics, and symptoms identified
from the interview analysis and EP ratings. Symptoms assessed as relevant by the EP
and mentioned in the qualitative interviews by >20% of patients were included for
consideration for inclusion in the preliminary MDASI-Skull Base for psychometric testing
and cognitive debriefing.
Results: Patients selected for qualitative interviews were evenly distributed across multiple
SB subsites: sinonasal, anterior skull base (i.e., meningioma, sinonasal tumor with
significant intracranial extension), central (i.e., craniopharyngioma, pituitary tumor),
lateral (i.e., acoustic neuroma, paraganglioma) and posterior skull base (chondrosarcoma,
chordoma). 60% of patients were treated with two or more modalities of surgery, systemic
therapy and/or radiotherapy. Saturation was reached after 29 patients were interviewed.
Fifty-six items were identified from the recorded transcripts using descriptive exploratory
analysis and classified as attributable to the disease, the treatment or both. Of
the 56 symptoms identified, 25 were reported by >20% of patients. Of these, ten were
already present in the MDASI core: pain, fatigue, distress, nausea, numbness/tingling,
memory changes, loss of appetite, sadness, sleep disturbances, drowsiness. The 15
disease-specific symptoms were problems related to hearing, ear ringing, ear blockage
or draining, balance, dizziness, attention/concentration, vision, smell, taste, chewing/swallowing,
voice/speech, stuffy nose/crusting/drainage, nasal dryness, skin problems, changes
in appearance. The final preliminary MDASI-SB comprise of 34 items, including 13 core
items, 15 disease-specific items, and 6 interference items.
Conclusion: Patients with SBT experience wide-ranging symptoms. A core group of symptoms were
experienced by most patients, regardless of site of disease. These symptoms form the
basis of the preliminary MDASI-SB, which will be validated with Phase III psychometric
testing.
