The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma: A vignette-based experiment
The symptoms and prognosis of Alzheimer's disease (AD) dementia contribute to the public's negative reactions toward individuals with AD dementia and their families. But what if, using AD biomarker tests, diagnosis was made before the onset of dementia, and a disease-modifying treatment wa...
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| Veröffentlicht in: | Social science & medicine (1982) 2022-01, Vol.292, p.114620-114620, Article 114620 |
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| container_title | Social science & medicine (1982) |
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| creator | Stites, Shana D. Gill, Jeanine Largent, Emily A. Harkins, Kristin Sankar, Pamela Krieger, Abba Karlawish, Jason |
| description | The symptoms and prognosis of Alzheimer's disease (AD) dementia contribute to the public's negative reactions toward individuals with AD dementia and their families. But what if, using AD biomarker tests, diagnosis was made before the onset of dementia, and a disease-modifying treatment was available? This study tests the hypotheses that a “preclinical” diagnosis of AD and treatment that improves prognosis will mitigate stigmatizing reactions.
A sample of U.S. adults were randomized to receive one vignette created by a 3 × 2 × 2 vignette-based experiment that described a person with varied clinical symptom severity (Clinical Dementia Rating stages 0 (no dementia), 1 (mild), or 2 (moderate)), AD biomarker test results (positive vs negative), and disease-modifying treatment (available vs not available). Between-group comparisons were conducted of scores on the Modified Family Stigma in Alzheimer's Disease Scale (FS-ADS).
The sample of 1,817 adults had a mean age two years younger than that of U.S. adults but was otherwise similar to the general adult population. The response rate was 63% and the completion rate was 96%. In comparisons of randomized groups, mild and moderate symptoms of dementia evoked stronger reactions on all FS-ADS domains compared to no dementia (all p |
| doi_str_mv | 10.1016/j.socscimed.2021.114620 |
| format | Article |
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A sample of U.S. adults were randomized to receive one vignette created by a 3 × 2 × 2 vignette-based experiment that described a person with varied clinical symptom severity (Clinical Dementia Rating stages 0 (no dementia), 1 (mild), or 2 (moderate)), AD biomarker test results (positive vs negative), and disease-modifying treatment (available vs not available). Between-group comparisons were conducted of scores on the Modified Family Stigma in Alzheimer's Disease Scale (FS-ADS).
The sample of 1,817 adults had a mean age two years younger than that of U.S. adults but was otherwise similar to the general adult population. The response rate was 63% and the completion rate was 96%. In comparisons of randomized groups, mild and moderate symptoms of dementia evoked stronger reactions on all FS-ADS domains compared to no dementia (all p < 0.001). A positive biomarker test result evoked stronger reactions on all but one FS-ADS domain (negative aesthetic attributions) compared to a negative biomarker result (all p < 0.001). Disease-modifying treatment had no measurable influence on stigma (all p > 0.05).
The stigmas of dementia spill over into preclinical AD, and availability of treatment does not alter that stigma. Translation of the preclinical AD construct from research into practice will require interventions that mitigate AD stigma to preserve the dignity and identity of individuals living with AD.
•An experimental vignette-based survey of general US public.•A biomarker-based “pre-dementia” diagnosis caused stigma.•Treatment at this stage of AD did not reduce stigma.•The stigma of dementia may spill over to persons with pre-dementia diagnosis.</description><identifier>ISSN: 0277-9536</identifier><identifier>EISSN: 1873-5347</identifier><identifier>DOI: 10.1016/j.socscimed.2021.114620</identifier><identifier>PMID: 34883313</identifier><language>eng</language><publisher>England: Elsevier Ltd</publisher><subject>Adult ; Adults ; Alzheimer Disease ; Alzheimer's biomarkers ; Alzheimer's disease ; Attribution ; Biological markers ; Biomarkers ; Child, Preschool ; Dementia ; Human dignity ; Humans ; Medical diagnosis ; Medical prognosis ; Preclinical Alzheimer's ; Predictions ; Prognosis ; Response rates ; Responses ; Social Perception ; Social Stigma ; Stigma ; Symptoms ; Translation ; Treatment</subject><ispartof>Social science & medicine (1982), 2022-01, Vol.292, p.114620-114620, Article 114620</ispartof><rights>2021 Elsevier Ltd</rights><rights>Copyright © 2021 Elsevier Ltd. All rights reserved.</rights><rights>Copyright Pergamon Press Inc. Jan 2022</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c503t-6451505da6b4d54bf7a15433258f3a54fc34202a1eee89022207b145f0610a33</citedby><cites>FETCH-LOGICAL-c503t-6451505da6b4d54bf7a15433258f3a54fc34202a1eee89022207b145f0610a33</cites><orcidid>0000-0001-5360-1043 ; 0000-0002-6880-2865</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.sciencedirect.com/science/article/pii/S0277953621009527$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>230,314,776,780,881,3537,27901,27902,33751,65534</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/34883313$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Stites, Shana D.</creatorcontrib><creatorcontrib>Gill, Jeanine</creatorcontrib><creatorcontrib>Largent, Emily A.</creatorcontrib><creatorcontrib>Harkins, Kristin</creatorcontrib><creatorcontrib>Sankar, Pamela</creatorcontrib><creatorcontrib>Krieger, Abba</creatorcontrib><creatorcontrib>Karlawish, Jason</creatorcontrib><title>The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma: A vignette-based experiment</title><title>Social science & medicine (1982)</title><addtitle>Soc Sci Med</addtitle><description>The symptoms and prognosis of Alzheimer's disease (AD) dementia contribute to the public's negative reactions toward individuals with AD dementia and their families. But what if, using AD biomarker tests, diagnosis was made before the onset of dementia, and a disease-modifying treatment was available? This study tests the hypotheses that a “preclinical” diagnosis of AD and treatment that improves prognosis will mitigate stigmatizing reactions.
A sample of U.S. adults were randomized to receive one vignette created by a 3 × 2 × 2 vignette-based experiment that described a person with varied clinical symptom severity (Clinical Dementia Rating stages 0 (no dementia), 1 (mild), or 2 (moderate)), AD biomarker test results (positive vs negative), and disease-modifying treatment (available vs not available). Between-group comparisons were conducted of scores on the Modified Family Stigma in Alzheimer's Disease Scale (FS-ADS).
The sample of 1,817 adults had a mean age two years younger than that of U.S. adults but was otherwise similar to the general adult population. The response rate was 63% and the completion rate was 96%. In comparisons of randomized groups, mild and moderate symptoms of dementia evoked stronger reactions on all FS-ADS domains compared to no dementia (all p < 0.001). A positive biomarker test result evoked stronger reactions on all but one FS-ADS domain (negative aesthetic attributions) compared to a negative biomarker result (all p < 0.001). Disease-modifying treatment had no measurable influence on stigma (all p > 0.05).
The stigmas of dementia spill over into preclinical AD, and availability of treatment does not alter that stigma. Translation of the preclinical AD construct from research into practice will require interventions that mitigate AD stigma to preserve the dignity and identity of individuals living with AD.
•An experimental vignette-based survey of general US public.•A biomarker-based “pre-dementia” diagnosis caused stigma.•Treatment at this stage of AD did not reduce stigma.•The stigma of dementia may spill over to persons with pre-dementia diagnosis.</description><subject>Adult</subject><subject>Adults</subject><subject>Alzheimer Disease</subject><subject>Alzheimer's biomarkers</subject><subject>Alzheimer's disease</subject><subject>Attribution</subject><subject>Biological markers</subject><subject>Biomarkers</subject><subject>Child, Preschool</subject><subject>Dementia</subject><subject>Human dignity</subject><subject>Humans</subject><subject>Medical diagnosis</subject><subject>Medical prognosis</subject><subject>Preclinical Alzheimer's</subject><subject>Predictions</subject><subject>Prognosis</subject><subject>Response rates</subject><subject>Responses</subject><subject>Social Perception</subject><subject>Social Stigma</subject><subject>Stigma</subject><subject>Symptoms</subject><subject>Translation</subject><subject>Treatment</subject><issn>0277-9536</issn><issn>1873-5347</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>BHHNA</sourceid><recordid>eNqFkcuO0zAUhi0EYsrAK4AlFrCYFF_jlAVSNeImjcSme8uxT1qXJC62E1FeglfGVYcK2LDykfz9_7n8CL2gZEkJrd_slynYZP0AbskIo0tKRc3IA7SgjeKV5EI9RAvClKpWktdX6ElKe0IIJQ1_jK64aBrOKV-gn5sd4Ai9yX4GbMOYo2-n7MOYcOhw68Ng4leI6QY7n8AkwENwvjv6cYtzBJMHGPMNNqPDDk61NzjBDNHnI84Br_sfOyhzxlcJp-y3g3mL13j22xFyhqotjg7D90MRnNRP0aPO9Ame3b_XaPPh_eb2U3X35ePn2_VdZSXhuaqFpJJIZ-pWOCnaThkqBedMNh03UnSWi3IXQwGgWRHGGFEtFbIjNSWG82v07mx7mNpyQ1s6R9PrQxnCxKMOxuu_f0a_09sw60aJRtBVMXh9bxDDtwlS1oNPFvrejBCmpFlNGslVvRIFffkPug9THMt2heKEU6KYKpQ6UzaGlCJ0l2Eo0afM9V5fMtenzPU586J8_ucuF93vkAuwPgNQDjp7iLq4wGjB-Qg2axf8f5v8Arr8xCs</recordid><startdate>20220101</startdate><enddate>20220101</enddate><creator>Stites, Shana D.</creator><creator>Gill, Jeanine</creator><creator>Largent, Emily A.</creator><creator>Harkins, Kristin</creator><creator>Sankar, Pamela</creator><creator>Krieger, Abba</creator><creator>Karlawish, Jason</creator><general>Elsevier Ltd</general><general>Pergamon Press Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7U3</scope><scope>7U4</scope><scope>8BJ</scope><scope>BHHNA</scope><scope>DWI</scope><scope>FQK</scope><scope>JBE</scope><scope>K9.</scope><scope>WZK</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0001-5360-1043</orcidid><orcidid>https://orcid.org/0000-0002-6880-2865</orcidid></search><sort><creationdate>20220101</creationdate><title>The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma: A vignette-based experiment</title><author>Stites, Shana D. ; Gill, Jeanine ; Largent, Emily A. ; Harkins, Kristin ; Sankar, Pamela ; Krieger, Abba ; Karlawish, Jason</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c503t-6451505da6b4d54bf7a15433258f3a54fc34202a1eee89022207b145f0610a33</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><topic>Adult</topic><topic>Adults</topic><topic>Alzheimer Disease</topic><topic>Alzheimer's biomarkers</topic><topic>Alzheimer's disease</topic><topic>Attribution</topic><topic>Biological markers</topic><topic>Biomarkers</topic><topic>Child, Preschool</topic><topic>Dementia</topic><topic>Human dignity</topic><topic>Humans</topic><topic>Medical diagnosis</topic><topic>Medical prognosis</topic><topic>Preclinical Alzheimer's</topic><topic>Predictions</topic><topic>Prognosis</topic><topic>Response rates</topic><topic>Responses</topic><topic>Social Perception</topic><topic>Social Stigma</topic><topic>Stigma</topic><topic>Symptoms</topic><topic>Translation</topic><topic>Treatment</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Stites, Shana D.</creatorcontrib><creatorcontrib>Gill, Jeanine</creatorcontrib><creatorcontrib>Largent, Emily A.</creatorcontrib><creatorcontrib>Harkins, Kristin</creatorcontrib><creatorcontrib>Sankar, Pamela</creatorcontrib><creatorcontrib>Krieger, Abba</creatorcontrib><creatorcontrib>Karlawish, Jason</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Social Services Abstracts</collection><collection>Sociological Abstracts (pre-2017)</collection><collection>International Bibliography of the Social Sciences (IBSS)</collection><collection>Sociological Abstracts</collection><collection>Sociological Abstracts</collection><collection>International Bibliography of the Social Sciences</collection><collection>International Bibliography of the Social Sciences</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Sociological Abstracts (Ovid)</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Social science & medicine (1982)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Stites, Shana D.</au><au>Gill, Jeanine</au><au>Largent, Emily A.</au><au>Harkins, Kristin</au><au>Sankar, Pamela</au><au>Krieger, Abba</au><au>Karlawish, Jason</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma: A vignette-based experiment</atitle><jtitle>Social science & medicine (1982)</jtitle><addtitle>Soc Sci Med</addtitle><date>2022-01-01</date><risdate>2022</risdate><volume>292</volume><spage>114620</spage><epage>114620</epage><pages>114620-114620</pages><artnum>114620</artnum><issn>0277-9536</issn><eissn>1873-5347</eissn><abstract>The symptoms and prognosis of Alzheimer's disease (AD) dementia contribute to the public's negative reactions toward individuals with AD dementia and their families. But what if, using AD biomarker tests, diagnosis was made before the onset of dementia, and a disease-modifying treatment was available? This study tests the hypotheses that a “preclinical” diagnosis of AD and treatment that improves prognosis will mitigate stigmatizing reactions.
A sample of U.S. adults were randomized to receive one vignette created by a 3 × 2 × 2 vignette-based experiment that described a person with varied clinical symptom severity (Clinical Dementia Rating stages 0 (no dementia), 1 (mild), or 2 (moderate)), AD biomarker test results (positive vs negative), and disease-modifying treatment (available vs not available). Between-group comparisons were conducted of scores on the Modified Family Stigma in Alzheimer's Disease Scale (FS-ADS).
The sample of 1,817 adults had a mean age two years younger than that of U.S. adults but was otherwise similar to the general adult population. The response rate was 63% and the completion rate was 96%. In comparisons of randomized groups, mild and moderate symptoms of dementia evoked stronger reactions on all FS-ADS domains compared to no dementia (all p < 0.001). A positive biomarker test result evoked stronger reactions on all but one FS-ADS domain (negative aesthetic attributions) compared to a negative biomarker result (all p < 0.001). Disease-modifying treatment had no measurable influence on stigma (all p > 0.05).
The stigmas of dementia spill over into preclinical AD, and availability of treatment does not alter that stigma. Translation of the preclinical AD construct from research into practice will require interventions that mitigate AD stigma to preserve the dignity and identity of individuals living with AD.
•An experimental vignette-based survey of general US public.•A biomarker-based “pre-dementia” diagnosis caused stigma.•Treatment at this stage of AD did not reduce stigma.•The stigma of dementia may spill over to persons with pre-dementia diagnosis.</abstract><cop>England</cop><pub>Elsevier Ltd</pub><pmid>34883313</pmid><doi>10.1016/j.socscimed.2021.114620</doi><tpages>1</tpages><orcidid>https://orcid.org/0000-0001-5360-1043</orcidid><orcidid>https://orcid.org/0000-0002-6880-2865</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0277-9536 |
| ispartof | Social science & medicine (1982), 2022-01, Vol.292, p.114620-114620, Article 114620 |
| issn | 0277-9536 1873-5347 |
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| source | MEDLINE; Elsevier ScienceDirect Journals; Sociological Abstracts |
| subjects | Adult Adults Alzheimer Disease Alzheimer's biomarkers Alzheimer's disease Attribution Biological markers Biomarkers Child, Preschool Dementia Human dignity Humans Medical diagnosis Medical prognosis Preclinical Alzheimer's Predictions Prognosis Response rates Responses Social Perception Social Stigma Stigma Symptoms Translation Treatment |
| title | The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma: A vignette-based experiment |
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