Neurofibromatosis type 1 (NF1): addressing the transition from pediatric to adult care

HB Radtke, A Berger, T Skelton… - … Health, Medicine and …, 2023 - Taylor & Francis
Health care transition, or HCT, is the process of adolescents and young adults moving from
a child/family-centered model of health care to an adult/patient-centered model of health …

The contribution of morbidity and unemployment for the reduced labor market participation of individuals with neurofibromatosis 1 in Finland

RA Kallionpää, E Johansson, P Böckerman… - European Journal of …, 2024 - nature.com
Abstract Neurofibromatosis 1 (NF1) is a multisystem disorder associated with, for example, a
high risk for cancer, a variety of behavioral and cognitive deficits, low educational attainment …

Internalizing and externalizing symptoms in individuals with neurofibromatosis type 1: a systematic review and meta-analysis

D Liu, L Yu, X Wu, J Moreira, BF Mujica… - Systematic …, 2025 - Springer
Background Individuals with neurofibromatosis type 1 (NF1) frequently report psychosocial
problems, among which internalizing and externalizing symptoms are the most poorly …

Lived experiences of neurofibromatosis type 1 patients: Social life, stigma, and intervention strategies

A Aghaei, K Herran, SA Fanaei… - Journal of Health …, 2024 - journals.sagepub.com
Neurofibromatosis type 1 (NF1) is a neurogenetic disorder associated with visual-spatial
problems, executive dysfunction, and language deficits, making patients experience social …

Employment, occupation, and income in adults with neurofibromatosis 1 in Denmark: a population-and register-based cohort study

L Kenborg, LE Frederiksen, M Galanakis… - Orphanet Journal of …, 2023 - Springer
Background Little is known about employment status, occupation, and disposable income in
adults with NF1. Methods From the Danish National Patient Registry and database of two …

Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: results from an anonymous online survey

PL Wolters, NA Ghriwati, M Baker, S Martin… - Clinical …, 2024 - journals.sagepub.com
Background/Aims Individuals with neurofibromatosis, including neurofibromatosis 1 (NF1),
neurofibromatosis 2 (NF2)–related schwannomatosis (SWN), and other forms of SWN, often …

Neuropsychiatric manifestations, reduced self-esteem and poor quality of life in children and adolescents with neurofibromatosis type 1 (NF1): the impact of symptom …

ND Cavallo, G Maggi, F Ferraiuolo, A Sorrentino… - Children, 2023 - mdpi.com
Neurofibromatosis type 1 (NF1) is an autosomal dominant condition, associated with
neurocutaneous manifestations and neuropsychiatric manifestations. The present study …

Impact of neurofibromatosis type 1 on quality of life using the Skindex-29 questionnaire quality of life in NF1

AM Cieza Rivera, C Lobato Fuertes… - Orphanet Journal of …, 2024 - Springer
Abstract Background Neurofibromatosis type 1 (NF1) is one of the most common
RASopathies predisposing affected patients to melanic lesions and benign tumors. NF1 is …

Association of sociodemographic and clinical factors with the quality of life of Brazilian individuals with Neurofibromatosis type 1: a cross-sectional study

NP Bicudo, CMR Germano, RT Moraes… - Anais Brasileiros de …, 2024 - SciELO Brasil
Abstract Background Neurofibromatosis type 1 (NF1) is a rare genetic disorder with a wide
range of clinical manifestations, notably neurocutaneous features, that can lead to emotional …

Work participation in adults with rare genetic diseases-a scoping review

G Velvin, B Dammann, T Haagensen, H Johansen… - BMC Public Health, 2023 - Springer
Background Work participation is a crucial aspect of health outcome and an important part of
life for most people with rare genetic diseases. Despite that work participation is a social …