Endocrine Abstracts

Background: An increasing number of studies assess quality of life (QoL) in patients with pituitary diseases. At present, available disease-specific QoL questionnaires do not completely cover the patient perspective of QoL. Furthermore, there are no disease-specific questionnaires available which inventories patient’s needs for help for impairments in QoL.

Objective: To develop and validate a disease-specific QoL questionnaire for patients with pituitary diseases based on the patient perspective on QoL, which also incorporates the needs for help: the burden and needs assessment questionnaire for patients with pituitary diseases (BNQ-Pituitary).

Methods: 337 patients with pituitary diseases fill-out the BNQ-Pituitary and eight other psychosocial questionnaires (i.e. EuroQoL-5D, SF-36, MFI-20, HADS, UCL, GSE, IPQ-brief, IPA). Items were formulated based on results of a recent focus group study of our department. Construct validity was examined by using an exploratory factor analysis with oblique rotation on principal components. Reliabilities were calculated with Cronbach’s α, and concurrent validity was measured by calculating Spearman correlations between BNQ-Pituitary reported burden and subscales of the other questionnaires.

Results: The exploratory factor analysis revealed seven subscales (i.e. Mood, Cognitive functioning, Illness perceptions, sexual functioning, social functioning, anxiety, physical complaints) containing a total of 33 items. Subscales reliabilities were all >0.736 and strong and consistent correlations were observed between BNQ-Pituitary scores and scores on the other psychosocial questionnaires. A significant effect of type of pituitary disease was observed, with patients with Cushing’s disease reporting the highest burden compared to patients with prolactinoma or non-functioning pituitary adenoma.

Conclusion: The BNQ-Pituitary is a valid and reliable instrument to measure not only the burden of pituitary disease, but also the need for help considering the consequences of the disease. Furthermore, the BNQ-Pituitary can facilitate the efficient assessment of patients’ unmet needs. We postulate that paying attention to potential unmet needs may positively affect QoL.