Psychological follow-up care of neurofibromatosis type 2 patients and their relatives

被引:5
作者
Carillo, C. [1 ]
Kiening, M. [1 ]
Bergheimer, S. [1 ]
Kalamarides, M. [2 ,3 ]
机构
[1] Ctr Referent Implants Auditifs Surdite Genet Adul, Serv Otol & Implants Auditifs Chirurg Base Crane, Vallauris, France
[2] Hop La Pitie Salpetriere, AP HP, Serv Neurochirurg, 47-91 Blvd Hop, F-75013 Paris, France
[3] Univ Paris 06, Pierre & Marie Curie, F-75013 Paris, France
关键词
Neurofibromatosis type 2; NF2; Psychological; Deafness; Vestibular schwannoma; Auditory brainstem implant; PERCEPTION;
D O I
10.1016/j.neuchi.2016.09.008
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Neurofibromatosis type 2 (NF2) confronts patients and their relatives with the dual issue of a progressive disease and disability. Deafness creates a brutal rupture in the patients' course of life, and other disabilities often follow in addition, that further deteriorates their quality of life. Hearing rehabilitation, via a cochlear implant and auditory brainstem implant, attempts to reduce the feeling of isolation and suffering due to communication impairment. A NF2-specific quality of life questionnaire not only helps to evaluate the impact of the disease but it is also useful therapy proposals (treatment, auditory implants). This may contribute to improve the quality of care for patients and their families. Within the multidisciplinary NF2 team, the psychologist offers constant listening of patients, and their suffering at each stage of the disease, that takes into account the life context in which the disease occurs, thus playing a major role in the patient care offered. (C) 2016 Elsevier Masson SAS. All rights reserved.
引用
收藏
页码:381 / 385
页数:5
相关论文
共 6 条
  • [1] Longitudinal evaluation of quality of life in 288 patients with neurofibromatosis 2
    Ferner, Rosalie E.
    Shaw, Adam
    Evans, D. Gareth
    McAleer, Dympna
    Halliday, Dorothy
    Parry, Allyson
    Raymond, F. Lucy
    Durie-Gair, Juliette
    Hanemann, C. Oliver
    Hornigold, Rachel
    Axon, Patrick
    Golding, John F.
    [J]. JOURNAL OF NEUROLOGY, 2014, 261 (05) : 963 - 969
  • [2] Phase II study of mTORC1 inhibition by everolimus in neurofibromatosis type 2 patients with growing vestibular schwannomas
    Goutagny, Stephane
    Raymond, Eric
    Esposito-Farese, Marina
    Trunet, Stephanie
    Mawrin, Christian
    Bernardeschi, Daniele
    Larroque, Beatrice
    Sterkers, Olivier
    Giovannini, Marco
    Kalamarides, Michel
    [J]. JOURNAL OF NEURO-ONCOLOGY, 2015, 122 (02) : 313 - 320
  • [3] Auditory Brainstem implant in Neurofibromatosis Type 2 and Non-Neurofibromatosis Type 2 Patients
    Grayeli, Alexis Bozorg
    Kalamarides, Michel
    Bouccara, Didier
    Ambert-Dahan, Emmanuele
    Sterkers, Olivier
    [J]. OTOLOGY & NEUROTOLOGY, 2008, 29 (08) : 1140 - 1146
  • [4] Auditory brainstem implants in neurofibromatosis Type 2: is open speech perception feasible? Clinical article
    Matthies, Cordula
    Brill, Stefan
    Varallyay, Csanad
    Solymosi, Laszlo
    Gelbrich, Goetz
    Roosen, Klaus
    Ernestus, Ralf-Ingo
    Helms, Jan
    Hagen, Rudolf
    Mlynski, Robert
    Shehata-Dieler, Wafaa
    Mueller, Joachim
    [J]. JOURNAL OF NEUROSURGERY, 2014, 120 (02) : 546 - 558
  • [5] The relationship between patients' perception of the effects of neurofibromatosis type 2 and the domains of the Short Form-36
    Neary, W. J.
    Hillier, V. F.
    Flute, T.
    Stephens, S. D. G.
    Ramsden, R. T.
    Evans, D. G. R.
    [J]. CLINICAL OTOLARYNGOLOGY, 2010, 35 (04) : 291 - 299
  • [6] Patient-reported outcomes in neurofibromatosis and schwannomatosis clinical trials
    Wolters, Pamela L.
    Martin, Staci
    Merker, Vanessa L.
    Gardner, Kathy L.
    Hingtgen, Cynthia M.
    Tonsgard, James H.
    Schorry, Elizabeth K.
    Baldwin, Andrea
    [J]. NEUROLOGY, 2013, 81 (21) : S6 - S14