Psychosocial Features of Neurofibromatosis Type 1 in Children and Adolescents

Domon-Archambault, Vincent; Gagnon, Louise; Benoit, Amélie; Perreault, Sébastien

doi:10.1177/0883073817749367

Cited by 19 publications

(15 citation statements)

References 90 publications

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“…Children and adults with NF1 report a lower QoL in physical and mental domains (Vranceanu, Merker, Park, & Plotkin, 2013). The majority of studies exploring QoL in NF1 have been performed in children; all have demonstrated a diminished quality of life (Domon‐Archambault, Gagnon, Benoit, & Perreault, 2018; Draucker, Nutakki, Varni, & Swigonski, 2017; Graf, Landolt, Mori, & Boltshauser, 2006; Krab et al., 2009). Several studies have shown that child self‐reported QoL ratings were generally higher than parent and teacher reports, which may reflect cognitive deficits, self‐concept difficulties, or self‐protective mechanisms (Graf et al., 2006; Vranceanu, Merker, Park, & Plotkin, 2015).…”

Section: Genetic Counseling Processmentioning

confidence: 99%

Genetic Counseling for Neurofibromatosis 1, Neurofibromatosis 2, and Schwannomatosis—Practice Resource of the National Society of Genetic Counselors

Radtke

Bergner

Goetsch

et al. 2020

Journal of Genetic Counseling

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The goal of this practice resource is to provide genetic counselors and other healthcare professionals with a resource to reference when providing genetic counseling services to individuals and families undergoing evaluation for neurofibromatosis (NF) or who have received a diagnosis of NF, including neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis (SWN). Currently, there is no known standard approach to genetic counseling in NF. This resource may be useful in a number of different healthcare settings. 1.1.1 | Pediatric or adult genetic counseling session (general genetics or specialty clinic) These sessions may occur in conjunction with a diagnosing provider, such as a physician or nurse practitioner. • Diagnostic evaluation based on clinical features and/or family history.

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Section: Genetic Counseling Processmentioning

confidence: 99%

Genetic Counseling for Neurofibromatosis 1, Neurofibromatosis 2, and Schwannomatosis—Practice Resource of the National Society of Genetic Counselors

Radtke

Bergner

Goetsch

et al. 2020

Journal of Genetic Counseling

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“…Compared to unaffected children and adolescents of the general population, paediatric patients with NF1 have an increased risk of having social diffi culties, mental health disorders, behavioural and emotional problems as well as diminished QOL. (43).…”

Section: Social Problems and Quality Of Life Of Patients With Neurofimentioning

confidence: 99%

Psychiatric disorders in patients with neurofibromatosis

et al. 2019

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The "neurofi bromatoses" (NFs) are a group of distinct genetic disorders that are commonly associated with the appearance of nerve tumours. They include NF1, NF2 and schwannomatosis, with the NF1 or von Recklinghausen disease being the most common form. All these disorders are dominantly inherited with a high rate of new mutation and variable expression. It is typically regarded as a cancer predisposition syndrome; however the most common complication of NF1 in childhood is impairment in academic achievement and cognition with att entional, executive, language and visuospatial functions frequently aff ected. This paper therefore, att empts to emphasize the existence and importance of psychological disorders and diffi culties in people with NF1. Early detection of existing psychiatric disorders in NF1 patients opens the possibility of early treatment and bett er quality of life. In this study an overview of the latest fi ndings regarding mental disorders in NF1 patients is given. The majority of studies to date have based their investigation on cognitive impairments whose frequency is high in NF1 patients. Other investigations describe the problems of socialization, quality of life and the possibility of medical treatment. It is important that specialists of diff erent areas of expertise have a clear overview of all mental disorders and diffi culties that may occur in people aff ected by this disease. The importance of a multidisciplinary approach to treatment is also emphasized, which will lead to more successful forms of treatment and improve the quality of life of patients with NF1.

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“…Moreover, affective and behavioral dysregulation have been extensively described, such as attention problems, problems reflecting anxiety, depression, or withdrawal and social problems [13]. These cognitive-behavioural impairments have a substantial impact on the quality of life and are a major concern for parents and teachers [14].…”

Section: Introductionmentioning

confidence: 99%

“…For what concerns emotional and psychosocial functioning, a recent review investigated psychosocial features of NF1 in children and adolescents [13]. Compared to unaffected children and adolescents of the general population, pediatric patients with NF1 have an increased risk of having social difficulties, mental health disorders, behavioral and emotional problems, as well as diminished quality of life.…”

Section: Introductionmentioning

confidence: 99%

Brain Tumors in NF1 Children: Influence on Neurocognitive and Behavioral Outcome

Taddei

Erbetta

Susan

et al. 2019

Cancers

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Neurofibromatosis type-1 (NF1) is a monogenic tumor-predisposition syndrome creating a wide variety of cognitive and behavioral abnormalities, such as decrease in cognitive functioning, deficits in visuospatial processing, attention, and social functioning. NF1 patients are at risk to develop neurofibromas and other tumors, such as optic pathway gliomas and other tumors of the central nervous system. Few studies have investigated the impact of an additional diagnosis of brain tumor on the cognitive outcome of children with NF1, showing unclear results and without controlling by the effect of surgery, radio- or chemotherapy. In the present mono-institutional study, we compared the behavioral and cognitive outcomes of 26 children with neurofibromatosis alone (NF1) with two age-matched groups of 26 children diagnosed with NF1 and untreated optic pathway glioma (NF1 + OPG) and 19 children with NF1 and untreated other central nervous system tumors (NF1 + CT). NF1 + CT and NF1 + OPG showed significantly impaired cognitive abilities compared to NF1 group, with weaknesses in visuo-spatial abilities, visual scanning and verbal working memory, while general verbal abilities are preserved. Moreover, NF1 + OPG patients present more frequent internalizing problems and increased oppositional-deviant behaviors. These results suggest that the co-diagnosis of a brain tumor in NF1 children may partially worsen the cognitive and emotional outcome.

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Psychosocial Features of Neurofibromatosis Type 1 in Children and Adolescents

Abstract: There is a need to develop and assess psychosocial interventions for patients with NF1.

Cited by 19 publications

References 90 publications

Genetic Counseling for Neurofibromatosis 1, Neurofibromatosis 2, and Schwannomatosis—Practice Resource of the National Society of Genetic Counselors

Genetic Counseling for Neurofibromatosis 1, Neurofibromatosis 2, and Schwannomatosis—Practice Resource of the National Society of Genetic Counselors

Psychiatric disorders in patients with neurofibromatosis

Brain Tumors in NF1 Children: Influence on Neurocognitive and Behavioral Outcome

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