Use of a closed set questionnaire to measure primary and secondary effects of neurofibromatosis type 2

Neary, Wanda; Hillier, V.; Flute, T.; Stephens, Dafydd; Ramsden, R. T.; Evans, D. Gareth

doi:10.1017/s0022215110000460

Cited by 43 publications

(36 citation statements)

References 3 publications

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“…We have already described the extent to which social communication problems outweigh any other consequences of NF2 4 . In this study, the degree of communication difficulties experienced socially was related to all the SF‐36 norm‐based domains with all correlations highly significant at the <0.001 level for communication socially.…”

Section: Discussionsupporting

confidence: 52%

“…Data from the SF‐36 questionnaire together with responses to the NF2 questionnaire were entered into an spss version 14 database. Responses to question 5 of the NF2 questionnaire were coded to provide the number of problems experienced, and the rank of perceived importance for each of the five main problems 4 …”

Section: Methodsmentioning

confidence: 99%

“…From this study, a disease specific closed set NF2 patient questionnaire was designed by using the most frequently reported difficulties, to create a series of short ranking scales. This enabled the recording of patients’ perceptions of the problems of living with NF2, with a view to obtain descriptive material of a patient population, and is described in our previous publication 4 . It is not designed to act as a generalised measurement scale such as the Short Form‐36 (SF‐36) questionnaire, and as such is not appropriate for Factor Analysis.…”

mentioning

confidence: 99%

“…Based on our previous work, 3,7 we have a developed a closed set NF2 patient questionnaire 4 and seek to investigate the issues of quality of life which it raises by relating them to the quality of life measures of the SF‐36 questionnaire.…”

mentioning

confidence: 99%

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ORIGINAL ARTICLE: The relationship between patients’ perception of the effects of neurofibromatosis type 2 and the domains of the Short Form‐36

Neary¹,

Hillier

Flute³

et al. 2010

Clinical Otolaryngology

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Section: Discussionsupporting

confidence: 52%

Section: Methodsmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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ORIGINAL ARTICLE: The relationship between patients’ perception of the effects of neurofibromatosis type 2 and the domains of the Short Form‐36

Neary¹,

Hillier

Flute³

et al. 2010

Clinical Otolaryngology

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“…Recent quality of life studies show that overcoming communication difficulties resulting from hearing loss is the greatest challenge for NF2 patients (12,13). This can have a profound negative impact on an individuals' ability to seek and maintain employment, enjoy social situations, and be independent.…”

Section: Discussionmentioning

confidence: 99%

MRI Without Magnet Removal in Neurofibromatosis Type 2 Patients With Cochlear and Auditory Brainstem Implants

Walton¹,

Donnelly²,

Tam³

et al. 2014

Otology &Amp; Neurotology

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Consensus recommendations for current treatments and accelerating clinical trials for patients with neurofibromatosis type 2

Blakeley

Evans

Adler

et al. 2011

American J of Med Genetics Pt A

111

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Neurofibromatosis type 2 (NF2) is a tumor suppressor syndrome characterized by bilateral vestibular schwannomas (VS) which often result in deafness despite aggressive management. Meningiomas, ependymomas and other cranial nerve and peripheral schwannomas are also commonly found in NF2 and collectively lead to major neurologic morbidity and mortality. Traditionally, the overall survival rate in patients with NF2 is estimated to be 38% at 20 years from diagnosis. Hence, there is a desperate need for new, effective therapies. Recent progress in understanding the molecular basis of NF2 related tumors has aided in the identification of potential therapeutic targets and emerging clinical therapies. In June 2010, representatives of the international NF2 research and clinical community convened under the leadership of Drs. D. Gareth Evans (University of Manchester) and Marco Giovannini (House Research Institute) to review the state of NF2 treatment and clinical trials. This manuscript summarizes the expert opinions about current treatments for NF2 associated tumors and recommendations for advancing therapies emerging from that meeting. The development of effective therapies for NF2 associated tumors has the potential for significant clinical advancement not only for patients with NF2 but for thousands of neuro-oncology patients afflicted with these tumors.

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Use of a closed set questionnaire to measure primary and secondary effects of neurofibromatosis type 2

Abstract: The use of a closed set neurofibromatosis type 2 questionnaire identified hearing problems and subsequent communication difficulties as the main problems faced by people with this condition.

Cited by 43 publications

References 3 publications

ORIGINAL ARTICLE: The relationship between patients’ perception of the effects of neurofibromatosis type 2 and the domains of the Short Form‐36

ORIGINAL ARTICLE: The relationship between patients’ perception of the effects of neurofibromatosis type 2 and the domains of the Short Form‐36

MRI Without Magnet Removal in Neurofibromatosis Type 2 Patients With Cochlear and Auditory Brainstem Implants

Consensus recommendations for current treatments and accelerating clinical trials for patients with neurofibromatosis type 2

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