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

Line Kenborg; Line E. Frederiksen; Michael Galanakis; Karoline Doser; Thomas T. Nielsen; Mia Aagaard Doherty; Hanne Hove; John R. Østergaard; Mette M. Handrup; Cecilie Ejerskov; John J. Mulvihill; Jeanette F. Winther

doi:10.1186/s13023-023-02965-2

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

Line Kenborg^*, Line E. Frederiksen, Michael Galanakis, Karoline Doser, Thomas T. Nielsen, Mia Aagaard Doherty, Hanne Hove, John R. Østergaard, Mette M. Handrup, Cecilie Ejerskov, John J. Mulvihill, Jeanette F. Winther

^*Corresponding author for this work

Department of Clinical Medicine - Department of Paediatrics

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaper › Journal article › Research › peer-review

1 Citation (Scopus)

Abstract

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 national Centers for Rare Diseases, we identified 1469 adults with NF1, who were matched to 11,991 randomly selected population comparisons on sex and birth year and month. Annual information on employment, occupation and disposable income was ascertained from national registries in 1980–2019. Results: Adults with NF1 had a lower odds ratio (OR) for employment [OR 0.71, 95% confidence interval (CI) 0.61–0.83] and higher OR for health-related unemployment (OR 2.94, 95% CI 2.16–3.96) at age 30 years than population comparisons, which persisted at age 40 and 50 years. Somatic diagnoses were associated with a higher OR for health-related unemployment in adults with NF1 than in the population comparisons. Adults with NF1 had a slightly lower disposable income, with a 14% (0.82–0.89) reduction observed among the youngest birth cohort. Furthermore, adults with NF1 were less likely to be in a high skilled occupation at ages 30, 40 and 50 years. Conclusion: Adults with NF1 have a lower employment rate, which was mainly due to health-related reasons and a slightly lower disposable income than adults without NF1. Thus, anticipation guidance for employment should be part of the management of NF1 families.

Original language	English
Article number	346
Journal	Orphanet Journal of Rare Diseases
Volume	18
Issue	1
Number of pages	11
ISSN	1750-1172
DOIs	https://doi.org/10.1186/s13023-023-02965-2
Publication status	Published - Dec 2023

Keywords

Cohort study
Denmark
Employment status
Neurofibromatosis 1
Population-based

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Kenborg, L., Frederiksen, L. E., Galanakis, M., Doser, K., Nielsen, T. T., Doherty, M. A., Hove, H., Østergaard, J. R., Handrup, M. M., Ejerskov, C., Mulvihill, J. J., & Winther, J. F. (2023). Employment, occupation, and income in adults with neurofibromatosis 1 in Denmark: a population- and register-based cohort study. Orphanet Journal of Rare Diseases, 18(1), Article 346. https://doi.org/10.1186/s13023-023-02965-2

@article{2eca548141bd4f47bbe1c27fc636cffb,

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

abstract = "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 national Centers for Rare Diseases, we identified 1469 adults with NF1, who were matched to 11,991 randomly selected population comparisons on sex and birth year and month. Annual information on employment, occupation and disposable income was ascertained from national registries in 1980–2019. Results: Adults with NF1 had a lower odds ratio (OR) for employment [OR 0.71, 95% confidence interval (CI) 0.61–0.83] and higher OR for health-related unemployment (OR 2.94, 95% CI 2.16–3.96) at age 30 years than population comparisons, which persisted at age 40 and 50 years. Somatic diagnoses were associated with a higher OR for health-related unemployment in adults with NF1 than in the population comparisons. Adults with NF1 had a slightly lower disposable income, with a 14% (0.82–0.89) reduction observed among the youngest birth cohort. Furthermore, adults with NF1 were less likely to be in a high skilled occupation at ages 30, 40 and 50 years. Conclusion: Adults with NF1 have a lower employment rate, which was mainly due to health-related reasons and a slightly lower disposable income than adults without NF1. Thus, anticipation guidance for employment should be part of the management of NF1 families.",

keywords = "Cohort study, Denmark, Employment status, Neurofibromatosis 1, Population-based",

author = "Line Kenborg and Frederiksen, {Line E.} and Michael Galanakis and Karoline Doser and Nielsen, {Thomas T.} and Doherty, {Mia Aagaard} and Hanne Hove and {\O}stergaard, {John R.} and Handrup, {Mette M.} and Cecilie Ejerskov and Mulvihill, {John J.} and Winther, {Jeanette F.}",

year = "2023",

month = dec,

doi = "10.1186/s13023-023-02965-2",

language = "English",

volume = "18",

journal = "Orphanet Journal of Rare Diseases",

issn = "1750-1172",

publisher = "BioMed Central",

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Kenborg, L, Frederiksen, LE, Galanakis, M, Doser, K, Nielsen, TT, Doherty, MA, Hove, H, Østergaard, JR, Handrup, MM , Ejerskov, C, Mulvihill, JJ & Winther, JF 2023, 'Employment, occupation, and income in adults with neurofibromatosis 1 in Denmark: a population- and register-based cohort study', Orphanet Journal of Rare Diseases, vol. 18, no. 1, 346. https://doi.org/10.1186/s13023-023-02965-2

Employment, occupation, and income in adults with neurofibromatosis 1 in Denmark: a population- and register-based cohort study. / Kenborg, Line; Frederiksen, Line E.; Galanakis, Michael et al.
In: Orphanet Journal of Rare Diseases, Vol. 18, No. 1, 346, 12.2023.

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaper › Journal article › Research › peer-review

TY - JOUR

T1 - Employment, occupation, and income in adults with neurofibromatosis 1 in Denmark

T2 - a population- and register-based cohort study

AU - Kenborg, Line

AU - Frederiksen, Line E.

AU - Galanakis, Michael

AU - Doser, Karoline

AU - Nielsen, Thomas T.

AU - Doherty, Mia Aagaard

AU - Hove, Hanne

AU - Østergaard, John R.

AU - Handrup, Mette M.

AU - Ejerskov, Cecilie

AU - Mulvihill, John J.

AU - Winther, Jeanette F.

PY - 2023/12

Y1 - 2023/12

N2 - 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 national Centers for Rare Diseases, we identified 1469 adults with NF1, who were matched to 11,991 randomly selected population comparisons on sex and birth year and month. Annual information on employment, occupation and disposable income was ascertained from national registries in 1980–2019. Results: Adults with NF1 had a lower odds ratio (OR) for employment [OR 0.71, 95% confidence interval (CI) 0.61–0.83] and higher OR for health-related unemployment (OR 2.94, 95% CI 2.16–3.96) at age 30 years than population comparisons, which persisted at age 40 and 50 years. Somatic diagnoses were associated with a higher OR for health-related unemployment in adults with NF1 than in the population comparisons. Adults with NF1 had a slightly lower disposable income, with a 14% (0.82–0.89) reduction observed among the youngest birth cohort. Furthermore, adults with NF1 were less likely to be in a high skilled occupation at ages 30, 40 and 50 years. Conclusion: Adults with NF1 have a lower employment rate, which was mainly due to health-related reasons and a slightly lower disposable income than adults without NF1. Thus, anticipation guidance for employment should be part of the management of NF1 families.

AB - 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 national Centers for Rare Diseases, we identified 1469 adults with NF1, who were matched to 11,991 randomly selected population comparisons on sex and birth year and month. Annual information on employment, occupation and disposable income was ascertained from national registries in 1980–2019. Results: Adults with NF1 had a lower odds ratio (OR) for employment [OR 0.71, 95% confidence interval (CI) 0.61–0.83] and higher OR for health-related unemployment (OR 2.94, 95% CI 2.16–3.96) at age 30 years than population comparisons, which persisted at age 40 and 50 years. Somatic diagnoses were associated with a higher OR for health-related unemployment in adults with NF1 than in the population comparisons. Adults with NF1 had a slightly lower disposable income, with a 14% (0.82–0.89) reduction observed among the youngest birth cohort. Furthermore, adults with NF1 were less likely to be in a high skilled occupation at ages 30, 40 and 50 years. Conclusion: Adults with NF1 have a lower employment rate, which was mainly due to health-related reasons and a slightly lower disposable income than adults without NF1. Thus, anticipation guidance for employment should be part of the management of NF1 families.

KW - Cohort study

KW - Denmark

KW - Employment status

KW - Neurofibromatosis 1

KW - Population-based

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U2 - 10.1186/s13023-023-02965-2

DO - 10.1186/s13023-023-02965-2

M3 - Journal article

C2 - 37932779

AN - SCOPUS:85175805446

SN - 1750-1172

VL - 18

JO - Orphanet Journal of Rare Diseases

JF - Orphanet Journal of Rare Diseases

IS - 1

M1 - 346

ER -

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

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Keywords

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