The Nonfunctioning Pituitary Adenoma Inventory (NFPAI): A Preliminary Disease-Specific, Patient-Centered Measure for Assessing Quality of Life in Nonfunctioning Pituitary Adenoma Patients

Le résumé fourni par la source

Background: Nonfunctioning pituitary adenomas (NFPAs) are common skull base lesions that often present with advanced symptomatic disease due to mass effect and compression of proximal neurovascular structures. These tumors are often treated with endoscopic endonasal resection when symptomatic. While the symptoms produced by NFPAs and treatment sequelae greatly affect quality of life (QOL), there are currently no instruments to measure this impact. Objective: This project aimed to create a novel patient-centered, disease-specific tool to assess QOL in patients with NFPAs. Methods: A steering committee (S.M., A.K.A., D.M.) generated an initial 70-item questionnaire comprised of items selected from existing instruments, including the Skull Base Inventory, Patient-Reported Outcomes Measurement Information System-29, Short Form-36, and ASK-Nasal 12. This questionnaire was sent to a panel of 12 providers and 23 patients for assessment. Both cohorts completed an anonymous Qualtrics survey and rated items on a 5-point Likert relevance scale. The relevance scores for each item were averaged to calculate mean scores. Items meeting the predetermined threshold of > 3 were considered significant. These questions were consolidated to reduce redundancy and form the Non-Functioning Pituitary Adenoma Inventory (NFPAI). Relevance scores of patients and providers were compared using Mann-Whitney U-tests with a 0.05 significance level. Results: Fifty-six items from the initial set of questions were identified as relevant to assess quality of life for patients with nonfunctioning pituitary adenomas having met the > 3 cutoff. These items were consolidated to remove redundancy in topics covered resulting in the final 35-item NFPAI. For these final 35 items, providers rated questions to be more relevant on average (3.73) than patients (1.91, p < 0.0001). Patients and providers placed significantly different importance on 25 of the consolidated items. Notably, patients and providers had similar ratings for items related to energy levels such as feeling fatigued (3.33, 3.67, p = 0.64)* and difficulty falling asleep (2.77, 3.52, p = 0.77). Patients and providers were also aligned on items related to emotions including feeling worthless (2.33, 3.78, p = 0.16), feeling helpless (3.00, 3.89, p = 0.33), and being unable to focus due to anxiety (2.67, 3.78, p = 0.19). Patients and providers had similar mean relevance scores for activities of daily living such as completing chores (3.67, 3.67, p = 1), moving up and down stairs (3.67, 3.56, p = 0.82), and running errands (3.67, 3.78, p = 0.84). However, patients and providers differed with regard to items on focal neurological deficits including motor weakness (1.00, 3.56, p = 0.003), taste changes (1.00, 3.67, p < 0.0001), smell changes (1.00, 4.00, p < 0.0001), and numbness and tingling (1.00, 3.56, p = 0.01). Patients and providers also had discrepancies on the relevance of items related to endoscopic endonasal approach such as double vision (1.00, 3.89, p < 0.00001), dry mouth (1.00, 3.78, p = 0.01), and breathing difficulties (1.00, 4.00, p < 0.0001).* Conclusion: The NFPAI is a novel patient-reported outcome instrument for assessing changes in QOL in non-functioning pituitary adenomas that is patient-centered and disease-specific. After external validation, NFPAI may be used to assess symptom burden pre-operatively and evaluate the impact treatment has on QOL post-operatively through symptom relief and treatment sequelae. *Patient mean score, provider mean score, p -value. Publication History Article published online: 07 February 2025 © 2025. Thieme. All rights reserved. Georg Thieme Verlag KG Oswald-Hesse-Straße 50, 70469 Stuttgart, Germany

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.