The development and validation of the Leiden Bother and Needs Questionnaire for patients with pituitary disease: the LBNQ-Pituitary

Cornelie D Andela, Margreet Scharloo, Steven Ramondt, Jitske Tiemensma, Olga Husson, Sofia Llahana, Alberto M Pereira, Ad A Kaptein, Noëlle G A Kamminga, Nienke R Biermasz, Cornelie D Andela, Margreet Scharloo, Steven Ramondt, Jitske Tiemensma, Olga Husson, Sofia Llahana, Alberto M Pereira, Ad A Kaptein, Noëlle G A Kamminga, Nienke R Biermasz

Abstract

Background: Patients report persisting impairment in quality of life (QoL) after treatment for pituitary disease. At present, there is no questionnaire to assess (a) whether patients with pituitary disease are bothered by these consequences, and (b) their needs for support.

Objective: To develop and validate a disease-specific questionnaire for patients with pituitary disease which incorporates patient perceived bother related to the consequences of the disease, and their needs for support.

Methods: Items for the Leiden Bother and Needs Questionnaire for patients with pituitary disease (LBNQ-Pituitary) were formulated based on results of a recent focus group study (n = 49 items). 337 patients completed the LBNQ-Pituitary and six validated QoL questionnaires (EuroQoL-5D, SF-36, MFI-20, HADS, AcroQol, CushingQoL). Construct validity was examined by exploratory factor analysis. Reliabilities of the subscales were calculated with Cronbach's alphas, and concurrent validity was assessed by calculating Spearman's correlations between the LBNQ-Pituitary and the other measures.

Results: Factor analyses produced five subscales (i.e., mood problems, negative illness perceptions, issues in sexual functioning, physical and cognitive complaints, issues in social functioning) containing a total of 26 items. All factors were found to be reliable (Cronbach's alphas all ≥.765), and the correlations between the dimensions of the LBNQ-Pituitary and other questionnaires (all P ≤ .0001) demonstrated convergent validity.

Conclusions: The LBNQ-Pituitary can be used to assess the degree to which patients are bothered by the consequences of the pituitary disease, as well as their needs for support. It could also facilitate an efficient assessment of patients' needs for support in clinical practice. We postulate that paying attention to needs for support will lead to optimal patient care (e.g., improvement in psychosocial care), and positively affect QoL.

Keywords: Acromegaly; Cushing’s disease; Cushing’s syndrome; Hypopituitarism; Illness perceptions; Needs; Non-functioning pituitary macroadenoma; Patient-reported-outcome; Pituitary adenomas; Prolactinoma; Quality of life.

Figures

Fig. 1
Fig. 1
aBothered by scores of patients with versus without anxiety. bBothered by scores of patients with versus without depression. Median and inter quartile range (IQR). HADS-A Anxiety subscale of the Hospital Anxiety and Depression Scale, HADS-D Depression subscale of the Hospital Anxiety and Depression Scale, MP mood problems, NIP negative illness perceptions, ISeF issues in sexual functioning, PC physical and cognitive complaints, ISoF issues in social functioning, Tot total score
Fig. 2
Fig. 2
Needs for support. Distribution of needs for support (range 0–100), with a higher score indicating a greater need for support. MP mood problems, NIP negative illness perceptions, ISeF issues in sexual functioning, PC physical and cognitive complaints, ISoF issues in social functioning, Tot total score

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