Impact of referral bias on clinical and epidemiological studies of Alzheimer's disease
Abstract
We used the resources of the Rochester Epidemiology Project to compare sociodemographic and clinical characteristics in three groups of Alzheimer's disease patients. The first group included incidence cases occurring among residents of Rochester, Minnesota (population-based series; n = 241). The second group was a sample of patients referred to the Mayo Clinic form the remainder of Minnesota and the four surrounding states (n = 58); the third was a sample referred from the remainder of the United States (n = 94). Patients from Rochester were more frequently women, less highly educated, less commonly white collar workers, more frequently institutionalized, less frequently married, and more often lived along than those in the two referral groups. Patients from Rochester also had a more advanced age of onset of dementia. For occupation, education, and living arrangement, the differences across groups increased with increasing distance of referral. Clinical and epidemiological studies based on patients referred form primary to secondary or tertiary care centers may suffer from severe selection bias.
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Most estimates of AD progression derive from convenience samples from dementia clinics or research centers, where there is substantial potential for survival bias and other distortions.
“Most estimates derive from convenience samples from dementia clinics or research centers where there is substantial potential for survival bias and other distortions.”
Clinic AD patients are up to 20 years younger than population-ascertained AD cases.
“clinic AD patients are up to 20 years younger”
Clinic AD patients are more often married and living with a spouse than population-ascertained AD cases.
“are more often married and living with a spouse,(5)”
Clinic AD patients have higher educational and occupational attainment than population-ascertained AD cases.
“have higher educational and occupational attainment”
Clinical samples have the disadvantage of initial referral biases that limit inference about adult outcomes.
“However, clinical samples have the disadvantage of initial referral biases that limit inference about adult outcomes(7-10).”
From Is adult ADHD a childhood-onset neurodevelopmental disorder? Evidence from a four-decade longitudinal cohort study (2015) · cites this paper as [10]
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- Authors
- Kokmen, E., Özsarfati, Y., Beard, C. M., O'Brien, P. C., & Rocca, W. A.
- Affiliations
- Mayo Clinic (US)
- Istanbul University-Cerrahpaşa (TR)
- Corresponding author
- Kokmen, Emre
- ORCID
- Rocca, Walter A.
- Venue
- Journal of Clinical Epidemiology
- Publisher
- Elsevier BV
- Published
- 1996-01
- Volume
- 49
- Issue
- 1
- Pages
- 79-83
- ISSN
- 0895-4356 (ISSN-L)
- OpenAlex
- W1989009094
- Cited by
- 105
- References
- 26
- Citations by year
- 2026: 1 · 2025: 2 · 2023: 1 · 2022: 1 · 2021: 9 · 2020: 1 · 2019: 2 · 2018: 2 · 2017: 3 · 2016: 8 · 2015: 5 · 2014: 2 · 2013: 4 · 2012: 5
- FWCI
- 5.33
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Clinical Epidemiology (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institute on Aging (AG-08031, P30AG008031, AG-06786, U01AG006786)
- National Institute of Neurological Disorders and Stroke (NS17750)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Physical Sciences › Mathematics › Statistics and Probability › Statistical Methods in Epidemiology
- Health Sciences › Medicine › Physiology › Alzheimer's disease research and treatments
- Keywords
- referral bias, selection bias, Alzheimer's disease, dementia, Rochester Epidemiology Project, sociodemographic factors, age of onset, institutionalization, tertiary care hospital, population-based incidence
- MeSH terms
- Adult, Aged, Aged, 80 and over, Alzheimer Disease, Demography, Female, Humans, Male, Middle Aged, Minnesota, Referral and Consultation, Socioeconomic Factors, Bias, Incidence, Patient Selection
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