The NFTI-QOL: a disease-specific quality of life questionnaire for neurofibromatosis 2

Hornigold, R.E., Golding, J.F., Leschziner, G., Obholzer, R., Gleeson, M., Thomas, N., Walsh, D., Saeed, S. and Ferner, R.E. 2012. The NFTI-QOL: a disease-specific quality of life questionnaire for neurofibromatosis 2. Journal of Neurological Surgery Part B: Skull Base. 73 (2), pp. 104-111. https://doi.org/10.1055/s-0032-1301396

TitleThe NFTI-QOL: a disease-specific quality of life questionnaire for neurofibromatosis 2
AuthorsHornigold, R.E., Golding, J.F., Leschziner, G., Obholzer, R., Gleeson, M., Thomas, N., Walsh, D., Saeed, S. and Ferner, R.E.
Abstract

The objective of this study was to develop a reliable, validated disease-specific score measuring quality of life (QOL) in clinical practice and treatment trials in Neurofibromatosis 2 (NF2) individuals. In NF2 patients, qualitative interviews (n = 15) and a focus group session (n = 30) generated items for a pilot questionnaire. This was tested and refined (n = 20). The final version (NFTI-QOL) was validated (n = 50) with two generic QOL questionnaires (SF-36 and EuroQOL). The NFTI-QOL was also administered to patients with solitary vestibular schwannoma (SVS) (n = 30) and normal controls (n = 30). The participants were NF2 patients, SVS patients, and normal controls. NFTI-QOL score, SF-36 score, and EuroQOL score were the main outcome measures. Mean NFTI-QOL score was 9.4 (range: 0 to 20, maximum possible score = 24). The NFTI-QOL score correlated strongly with EuroQOL (r = 0.71, p < 0.001) and SF-36 (r = 0.81, p < 0.001). NF2 individuals were significantly worse than the SVS patients, who in turn were worse than the controls on the NIFTI-QOL. The NFTI-QOL showed good internal reliability (Cronbach's α = 0.87). We developed an eight-item disease-specific QOL score for NF2 patients, validated against SF-36 and EuroQOL. It correlated strongly with clinician-rated disease severity in NF2, with better correlation than the SF-36 in this regard.

JournalJournal of Neurological Surgery Part B: Skull Base
Journal citation73 (2), pp. 104-111
ISSN2193-6331
Year2012
PublisherThieme Medical Publishers
Digital Object Identifier (DOI)https://doi.org/10.1055/s-0032-1301396
Publication dates
Published2012

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Golding, J.F., Kadzere, P. and Gresty, M.A. 2005. Motion sickness susceptibility fluctuates through the menstrual cycle. Aviation, Space, and Environmental Medicine. 76 (10), pp. 970-973.

Can tamoxifen relieve motion sickness?
Gianni, M.C., Golding, J.F. and Goldhirsch, A. 2005. Can tamoxifen relieve motion sickness? Annals of Oncology. 16 (10), pp. 1713-1714. https://doi.org/10.1093/annonc/mdi304

Motion sickness
Golding, J.F. and Gresty, M.A. 2005. Motion sickness. Current Opinion in Neurology. 18 (1), pp. 29-34.

Effect of a novel motion desensitization training regime and controlled breathing on habituation to motion sickness
Yen Pik Sang, F., Billar, J., Gresty, M.A. and Golding, J.F. 2005. Effect of a novel motion desensitization training regime and controlled breathing on habituation to motion sickness. Perceptual and Motor Skills. 18 (1), pp. 29-34.

Perceived control, locus of control and preparatory information: effects on the perception of an acute pain stimulus
Williams, D., Golding, J.F., Phillips, K. and Towell, A. 2004. Perceived control, locus of control and preparatory information: effects on the perception of an acute pain stimulus. Personality and Individual Differences. 36 (7), pp. 1681-1691. https://doi.org/10.1016/j.paid.2003.07.009

We are most aware of our place in the world when about to fall
Bray, A., Subanandan, A., Isableu, B., Ohlmann, T., Golding, J.F. and Gresty, M.A. 2004. We are most aware of our place in the world when about to fall. Current Biology. 14 (15), pp. R609-R610. https://doi.org/10.1016/j.cub.2004.07.040

Suppression of sickness by controlled breathing during mildly nauseogenic motion
Yen Pik Sang, F., Golding, J.F. and Gresty, M.A. 2003. Suppression of sickness by controlled breathing during mildly nauseogenic motion. Aviation, Space, and Environmental Medicine. 74 (9), pp. 998-1002.

Effect of breathing supplemental oxygen on motion sickness in healthy adults
Ziavra, N., Yen Pik Sang, F., Golding, J.F., Bronstein, A.M. and Gresty, M.A. 2003. Effect of breathing supplemental oxygen on motion sickness in healthy adults. Mayo Clinic Proceedings. 78 (5), pp. 574-578.

Behavioral methods of alleviating motion sickness: effectiveness of controlled breathing and a music audiotape
Yen Pik Sang, F., Billar, J., Golding, J.F. and Gresty, M.A. 2003. Behavioral methods of alleviating motion sickness: effectiveness of controlled breathing and a music audiotape. Journal of Travel Medicine. 10 (2), pp. 108-112.

Impairment of spatial cognitive function with preservation of verbal performance during spatial disorientation
Gresty, M.A., Waters, S., Bray, A., Bunday, K. and Golding, J.F. 2003. Impairment of spatial cognitive function with preservation of verbal performance during spatial disorientation. Current Biology. 13 (21), pp. R829-R830. https://doi.org/10.1016/j.cub.2003.10.013

Motion sickness and tilts of the inertial force environment: active suspension systems vs. active passengers
Golding, J.F., Bles, W., Bos, E., Haynes, T. and Gresty, M.A. 2003. Motion sickness and tilts of the inertial force environment: active suspension systems vs. active passengers. Aviation, Space, and Environmental Medicine. 74 (3), pp. 220-227.

A motion sickness maximum around the 0.2 Hz frequency range of horizontal translational oscillation
Golding, J.F., Mueller, A.G. and Gresty, M.A. 2001. A motion sickness maximum around the 0.2 Hz frequency range of horizontal translational oscillation. Aviation, Space, and Environmental Medicine. 72 (3), pp. 188-192.

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