Preliminary development of the new individualized HDQoL questionnaire measuring quality of life in adult hypopituitarism

Objectives The objectives were (1) to report the preliminary development of the Hormone Deficiency-dependent Quality of Life (HDQoL) questionnaire, a new individualized questionnaire in which respondents rate personally applicable domains for importance and impact of hormonal deficiency and its treatment; (2) to evaluate the HDQoL's psychometric properties for adults with hypopituitarism including growth hormone deficiency (GHD). Methods Internal consistency reliability, aspects of validity, and sensitivity to change of the HDQoL were investigated in: (1) a cross-sectional survey of 157 adults with treated or untreated GHD; (2) a randomized, placebo-controlled study of 3 months' growth hormone (GH) withdrawal from 12 of 21 GH-treated adults. Results Thirteen of the original 18 HDQoL domains were relevant and important for GH-deficient adults. The shorter 13-item HDQoL had excellent internal reliability (Cronbach's alpha coefficient = 0.914, n = 109), and was sensitive to sex differences (cross-sectional study): women perceived worse present QoL than men [t(149.8) = 2.33, P = 0.021]. The HDQoL was sensitive to change (GH-withdrawal study) with a significant between-group difference in change in domain scores for things I can do physically [t(16) = 2.47, P = 0.025, 2-tailed], patients withdrawn from GH reporting greater negative impact of hormone deficiency on this domain at end-point. Qualitative work resulted in the addition of seven new HDQoL domains, including energy and bodily pain. Conclusion The HDQoL, although at an early stage of development, proved useful in identifying expected changes following GH withdrawal. The extended 20-item version is recommended for further evaluation in assessing the impact of hypopituitarism on QoL