title: The development and validation of the Leiden Bother and Needs Questionnaire for patients with pituitary disease: the LBNQ-Pituitary.
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.
authors.affiliation: Department of Medicine, Division of Endocrinology and Center for Endocrine Tumors, C7-Q, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands. c.d.andela@lumc.nl.
authors.forename: Cornelie D
authors.initials: CD
authors.lastname: Andela
authors.affiliation: Medical Psychology, Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Margreet
authors.initials: M
authors.lastname: Scharloo
authors.affiliation: Psychological Science, University of California, Merced, CA, USA.
authors.forename: Steven
authors.initials: S
authors.lastname: Ramondt
authors.affiliation: Psychological Science, University of California, Merced, CA, USA.
authors.forename: Jitske
authors.initials: J
authors.lastname: Tiemensma
authors.affiliation: Department of Medical Psychology, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Olga
authors.initials: O
authors.lastname: Husson
authors.affiliation: Center for Behavioural Medicine, University College London, London, UK.
authors.forename: Sofia
authors.initials: S
authors.lastname: Llahana
authors.affiliation: Department of Medicine, Division of Endocrinology and Center for Endocrine Tumors, C7-Q, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands.
authors.forename: Alberto M
authors.initials: AM
authors.lastname: Pereira
authors.affiliation: Medical Psychology, Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Ad A
authors.initials: AA
authors.lastname: Kaptein
authors.affiliation: Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Noëlle G A
authors.initials: NG
authors.lastname: Kamminga
authors.affiliation: Department of Medicine, Division of Endocrinology and Center for Endocrine Tumors, C7-Q, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands.
authors.forename: Nienke R
authors.initials: NR
authors.lastname: Biermasz
mesh_terms: D000236:Adenoma / Q000523:psychology / Q000628:therapy; D000328:Adult; D000339:Affect; D000368:Aged; D018931:Antineoplastic Agents, Hormonal / Q000627:therapeutic use; D003071:Cognition; D016371:Cranial Irradiation; D005163:Factor Analysis, Statistical; D005260:Female; D049912:Growth Hormone-Secreting Pituitary Adenoma / Q000523:psychology / Q000628:therapy; D020249:Hormone Replacement Therapy; D006801:Humans; D007016:Hypophysectomy; D007018:Hypopituitarism / Q000523:psychology / Q000628:therapy; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D000071066:Patient Reported Outcome Measures; D047748:Pituitary ACTH Hypersecretion / Q000523:psychology / Q000628:therapy; D010900:Pituitary Diseases / Q000523:psychology* / Q000628:therapy; D010911:Pituitary Neoplasms / Q000523:psychology / Q000628:therapy; D015175:Prolactinoma / Q000523:psychology / Q000628:therapy; D011788:Quality of Life / Q000523:psychology*; D011878:Radiotherapy; D015203:Reproducibility of Results; D060728:Reproductive Health; D012919:Social Behavior; D011795:Surveys and Questionnaires
chemical_list: D018931:Antineoplastic Agents, Hormonal
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
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