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Worries and needs of adults and parents of adults with neurofibromatosis type 1
Neurofibromatosis type 1 (NF1) is a neurocutaneous disorder associated with lifelong tumor growth propensity and neurocognitive impairments. Although follow‐up of adults with NF1 often focuses on tumor growth, follow‐up of cognitive or social problems and other NF1‐related comorbidity is often not a...
Autores principales: | , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2018
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5947156/ https://www.ncbi.nlm.nih.gov/pubmed/29681082 http://dx.doi.org/10.1002/ajmg.a.38680 |
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author | Rietman, Andre B. van Helden, Hanneke Both, Pauline H. Taal, Walter Legerstee, Jeroen S. van Staa, AnneLoes Moll, Henriette A. Oostenbrink, Rianne van Eeghen, Agnies M. |
author_facet | Rietman, Andre B. van Helden, Hanneke Both, Pauline H. Taal, Walter Legerstee, Jeroen S. van Staa, AnneLoes Moll, Henriette A. Oostenbrink, Rianne van Eeghen, Agnies M. |
author_sort | Rietman, Andre B. |
collection | PubMed |
description | Neurofibromatosis type 1 (NF1) is a neurocutaneous disorder associated with lifelong tumor growth propensity and neurocognitive impairments. Although follow‐up of adults with NF1 often focuses on tumor growth, follow‐up of cognitive or social problems and other NF1‐related comorbidity is often not a part of standardized care. In order to provide optimal care services for these patients, we explored the care needs of adults with NF1. A qualitative study was performed using semi‐structured group interviews, exploring worries and care needs in medical, psychological, and socioeconomic domains, also focusing on the transition from pediatric to adult care. Four focus groups were conducted, including young adult patients, patients over age 30, and parents of young adult patients. In total, 30 patients and 12 parents participated. Data were transcribed verbatim and analyzed by computerized thematic analysis. Themes were organized using the World Health Organization International classification of functioning, disability, and health (ICF). Results indicated many and diverse worries and care needs both during the transitional period and in adulthood in medical, mental health, and socioeconomic domains. Worries could be categorized into 13 themes. Parents reported high stress levels and difficulties with their parental role. Participants expressed the need for more information, access to NF1 experts, daily living support, care for mental health and socioeconomic participation, and closer communication between health‐care providers. In conclusion, worries and needs of patients and parents underline the importance of multidisciplinary follow‐up and continuity of care during and after the transitional period. Additionally, parental stress requires more attention from care providers. |
format | Online Article Text |
id | pubmed-5947156 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-59471562018-05-17 Worries and needs of adults and parents of adults with neurofibromatosis type 1 Rietman, Andre B. van Helden, Hanneke Both, Pauline H. Taal, Walter Legerstee, Jeroen S. van Staa, AnneLoes Moll, Henriette A. Oostenbrink, Rianne van Eeghen, Agnies M. Am J Med Genet A Original Articles Neurofibromatosis type 1 (NF1) is a neurocutaneous disorder associated with lifelong tumor growth propensity and neurocognitive impairments. Although follow‐up of adults with NF1 often focuses on tumor growth, follow‐up of cognitive or social problems and other NF1‐related comorbidity is often not a part of standardized care. In order to provide optimal care services for these patients, we explored the care needs of adults with NF1. A qualitative study was performed using semi‐structured group interviews, exploring worries and care needs in medical, psychological, and socioeconomic domains, also focusing on the transition from pediatric to adult care. Four focus groups were conducted, including young adult patients, patients over age 30, and parents of young adult patients. In total, 30 patients and 12 parents participated. Data were transcribed verbatim and analyzed by computerized thematic analysis. Themes were organized using the World Health Organization International classification of functioning, disability, and health (ICF). Results indicated many and diverse worries and care needs both during the transitional period and in adulthood in medical, mental health, and socioeconomic domains. Worries could be categorized into 13 themes. Parents reported high stress levels and difficulties with their parental role. Participants expressed the need for more information, access to NF1 experts, daily living support, care for mental health and socioeconomic participation, and closer communication between health‐care providers. In conclusion, worries and needs of patients and parents underline the importance of multidisciplinary follow‐up and continuity of care during and after the transitional period. Additionally, parental stress requires more attention from care providers. John Wiley and Sons Inc. 2018-04-21 2018-05 /pmc/articles/PMC5947156/ /pubmed/29681082 http://dx.doi.org/10.1002/ajmg.a.38680 Text en © 2018 The Authors. American Journal of Medical Genetics Part A Published by Wiley Periodicals, Inc. This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made. |
spellingShingle | Original Articles Rietman, Andre B. van Helden, Hanneke Both, Pauline H. Taal, Walter Legerstee, Jeroen S. van Staa, AnneLoes Moll, Henriette A. Oostenbrink, Rianne van Eeghen, Agnies M. Worries and needs of adults and parents of adults with neurofibromatosis type 1 |
title | Worries and needs of adults and parents of adults with neurofibromatosis type 1 |
title_full | Worries and needs of adults and parents of adults with neurofibromatosis type 1 |
title_fullStr | Worries and needs of adults and parents of adults with neurofibromatosis type 1 |
title_full_unstemmed | Worries and needs of adults and parents of adults with neurofibromatosis type 1 |
title_short | Worries and needs of adults and parents of adults with neurofibromatosis type 1 |
title_sort | worries and needs of adults and parents of adults with neurofibromatosis type 1 |
topic | Original Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5947156/ https://www.ncbi.nlm.nih.gov/pubmed/29681082 http://dx.doi.org/10.1002/ajmg.a.38680 |
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