Background: Craniopharyngiomas are rare tumors derived from remnants of Rathke’s pouch that often
present with significant symptoms and comorbidities due to compression of surrounding
neurovascular structures. They are often treated with multimodal approaches including
surgery and radiation. Symptom burden and treatment sequelae significantly affect
quality of life (QOL) in these patients. However, no instruments have been validated
for this unique patient population.
Objective: This study aimed to develop a novel patient-centered, disease-specific instrument
to measure QOL in patients with craniopharyngiomas.
Methods: Twenty-six adult patients who underwent resection of craniopharyngiomas participated
in semi-structured interviews discussing symptoms and treatment sequelae that detracted
from their QOL throughout their care. Qualitative analysis of interview transcripts
through a grounded theory approach generated five representative themes (pain, numbness,
physical appearance changes, personality changes, and mobility). Items addressing
these themes were drawn from existing QOL tools such as the Skull Base Inventory and
Short Form-36 to form a 64-item survey.
This questionnaire was sent to 26 patients and 12 expert providers for validation.
Participants completed an anonymous Qualtrics survey, rating each item on a 5-point
Likert scale from very irrelevant to very relevant. These relevance scores were averaged
to calculate mean relevance scores for each item. Items with a mean score > 3.0, the
predetermined threshold, were considered significantly relevant. These items were
consolidated to create the Craniopharyngioma Quality of Life (C-QOL) index. Relevance
scores for patients and providers were compared using Mann–Whitney U-tests with a significance level of 0.05.
Results: Of the initial 64 items in the survey, 53 had mean relevance scores > 3.0, meeting
the cutoff for relevance and inclusion. These items were consolidated to remove redundancy,
generating the final 29-item C-QOL Index.
Patients and providers differed significantly on the relevance they ascribed to 5
of the final 29 items. Overall, providers rated these items to be significantly more
relevant with an average mean relevance score of 3.81 to the patients’ average of
2.80 (p < 0.0001). This difference between patients and providers was apparent in items addressing
emotions such as overwhelming worries (2.17, 4.25, p = 0.005)*, hopelessness (1.50, 4.25, p < 0.0001), and interference with socialization (1.83, 4.00, p = 0.001). Additionally, providers had higher scores for items regarding memory (2.33,
3.75, p = 0.035) and vision (3.33, 4.00, p = 0.025).
Both cohorts were aligned on items addressing energy levels, including fatigue (3,
4.13, p = 0.16) and sleep quality (2.83, 3.75, p = 0.16). Patients and providers also had similar ratings for items assessing ability
to complete daily activities such as driving (3.33, 3.75, p = 0.51), walking (2.83, 3.38, p = 0.37), and completing chores (3.33, 3.50, p = 0.80). Patients and providers placed similar emphasis on items evaluating neurologic
deficits including urinary incontinence (3.50, 3.88, p = 0.34) and balance (2.50, 3.63, p = 0.08).
Conclusion: The C-QOL Index is a patient-centered, disease-specific patient-reported outcome
survey for measuring QOL in patients with craniopharyngiomas throughout the multimodal
treatment process for craniopharyngiomas. Once the C-QOL Index has been externally
validated, it promises to provide significant insight into the delivery of care for
patients with these complex tumors.
*Patient mean score, provider mean score, and p-value.
