Work Complexity in Adults With Phenylketonuria in Sweden in 2020
Author(s)
Andreas Kindmark, MD1, Erika Frank, PhD2, Paul Okhuoya, MSc3, Eva-Lena Stattin, MD, PhD4, Karly S. Louie, MSc, PhD3.
1Department of Medical Sciences, Uppsala University Hospital, Uppsala, Sweden, 2Uppsala Clinical Research Center, Uppsala University, Uppsala, Sweden, 3BioMarin Europe Ltd., London, United Kingdom, 4Department of Immunology, Genetics and Pathology, Uppsala University Hospital, Uppsala, Sweden.
1Department of Medical Sciences, Uppsala University Hospital, Uppsala, Sweden, 2Uppsala Clinical Research Center, Uppsala University, Uppsala, Sweden, 3BioMarin Europe Ltd., London, United Kingdom, 4Department of Immunology, Genetics and Pathology, Uppsala University Hospital, Uppsala, Sweden.
OBJECTIVES: To evaluate work complexity in adults diagnosed with phenylketonuria (PKU) and general population non-PKU controls.
METHODS: A record-linkage observational study was conducted using national registers and included 353 adults with PKU who were residing in Sweden during 2019-2020, and 6595 controls matched 1:20 based on age, sex, and healthcare region. Prevalence of neuropsychiatric comorbidities (as defined by Bilder et al 2017), education, employment, work complexity (as defined using the European Socioeconomic Groups Classification) and work loss days were assessed.
RESULTS: Median age was 40 years for both PKU and non-PKU controls. Adults with PKU were less likely than non-PKU controls to attain post-secondary education (31.2% vs. 40.6%) and less likely to be employed (60.1% vs. 73.2%). Among those employed, high work complexity jobs (managers, professionals, technicians and associated professionals) were less likely to be held by adults with PKU compared with non-PKU controls (33.5% vs. 46.6%); whereas lower work complexity jobs (clerks and skilled service employees, skilled industrial professionals, and lower status employees) were more likely to be held by adults with PKU compared with non-PKU controls (45.3% vs. 35.9%). Adults with PKU who had high work complexity jobs were less likely to have ≥1 neuropsychiatric comorbidity than those with lower work complexity jobs and those self-employed/missing (8.5%, 27.1%, 46.7%, respectively); whereas the prevalence was generally similar for all groups in non-PKU controls (21.9%, 28%, and 30.2%, respectively). Mean (SD) work loss days was approximately 2-fold higher in individuals with PKU compared with non-PKU controls, regardless of holding high work complexity (16 [51] vs. 7 [35] days) or low work complexity (19 [68] vs. 10 [38] days) jobs.
CONCLUSIONS: Findings show that individuals with PKU are less likely to gain or keep employment in high complexity jobs and have more work loss days than individuals without PKU.
METHODS: A record-linkage observational study was conducted using national registers and included 353 adults with PKU who were residing in Sweden during 2019-2020, and 6595 controls matched 1:20 based on age, sex, and healthcare region. Prevalence of neuropsychiatric comorbidities (as defined by Bilder et al 2017), education, employment, work complexity (as defined using the European Socioeconomic Groups Classification) and work loss days were assessed.
RESULTS: Median age was 40 years for both PKU and non-PKU controls. Adults with PKU were less likely than non-PKU controls to attain post-secondary education (31.2% vs. 40.6%) and less likely to be employed (60.1% vs. 73.2%). Among those employed, high work complexity jobs (managers, professionals, technicians and associated professionals) were less likely to be held by adults with PKU compared with non-PKU controls (33.5% vs. 46.6%); whereas lower work complexity jobs (clerks and skilled service employees, skilled industrial professionals, and lower status employees) were more likely to be held by adults with PKU compared with non-PKU controls (45.3% vs. 35.9%). Adults with PKU who had high work complexity jobs were less likely to have ≥1 neuropsychiatric comorbidity than those with lower work complexity jobs and those self-employed/missing (8.5%, 27.1%, 46.7%, respectively); whereas the prevalence was generally similar for all groups in non-PKU controls (21.9%, 28%, and 30.2%, respectively). Mean (SD) work loss days was approximately 2-fold higher in individuals with PKU compared with non-PKU controls, regardless of holding high work complexity (16 [51] vs. 7 [35] days) or low work complexity (19 [68] vs. 10 [38] days) jobs.
CONCLUSIONS: Findings show that individuals with PKU are less likely to gain or keep employment in high complexity jobs and have more work loss days than individuals without PKU.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
EE758
Topic
Economic Evaluation
Topic Subcategory
Work & Home Productivity - Indirect Costs
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Rare & Orphan Diseases