The Craniopharyngioma Quality of Life (C-QOL) Index: a preliminary disease-specific, patient-centered tool for assessing patient reported outcomes in adult craniopharyngioma patients

Objective: Craniopharyngiomas have a profound impact on patient quality of life (QoL), due to their proximity to critical neurovascular structures and impact on pituitary function. Despite the significant symptom burden before and after resection, there is no disease-specific instrument to evaluate outcomes. We aimed to develop a patient-centered tool to assess QoL in craniopharyngioma patients. Methods: Twenty-six adult craniopharyngioma patients who underwent resection were interviewed about symptoms impacting their QoL. Qualitative analysis of interviews generated 5 themes. A 64-item survey was compiled with items from previously validated general and skull base-specific QoL tools addressing these themes. These items’ relevance was evaluated by 27 new patients and 11 surgeons on a 5-point Likert scale. An a-priori threshold of mean relevance score > 3.0 was used, based on prior studies. Mann-Whitney U-tests were used to compare mean relevance scores between patients and providers, otolaryngologists and neurosurgeons, and patients receiving only surgery and those receiving adjuvant radiation (p < 0.05).Craniopharyngiomas have a profound impact on patient quality of life (QoL), due to their proximity to critical neurovascular structures and impact on pituitary function. Despite the significant symptom burden before and after resection, there is no disease-specific instrument to evaluate outcomes. We aimed to develop a patient-centered tool to assess QoL in craniopharyngioma patients. Results: Fifty-four items met criteria for inclusion. Redundant items were removed to create the 39-item Craniopharyngioma Quality of Life (C-QOL) instrument. Patients and providers had significant differences in their rating of items related to sensory/numbness (25%), general (33%), personality changes (37.5%), and pain (50%). Neurosurgeons placed more emphasis on patient’s irritability (4.400 vs. 3.333, p = 0.032) and balance (4.200 vs. 3.167, p = 0.027) compared to otolaryngologists. Adjuvant radiotherapy did not significantly change patients’ rating of items. Conclusions: The C-QOL metric is a novel patient-derived instrument to evaluate QoL in craniopharyngioma patients. Using this tool may realign patient-provider discussions and guide clinical decision-making.