Discordance between Reports of Internalized Symptoms in Persons with Parkinson's Disease and Informants: Results from an Online Survey
Background Self‐report of motor and non‐motor symptoms is integral to understanding daily challenges of persons with Parkinson's disease (PwPD). Care partners are often asked to serve as informants regarding symptom severity, raising the question of concordance with PwPD self‐reports, especiall...
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| Veröffentlicht in: | Movement disorders clinical practice (Hoboken, N.J.) N.J.), 2024-04, Vol.11 (4), p.391-397 |
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| container_title | Movement disorders clinical practice (Hoboken, N.J.) |
| container_volume | 11 |
| creator | Kaplan, Rini I. McDowell, Celina Pluim Wall, Juliana Kinger, Shraddha B. Salazar, Robert D. Neargarder, Sandy Cronin‐Golomb, Alice |
| description | Background
Self‐report of motor and non‐motor symptoms is integral to understanding daily challenges of persons with Parkinson's disease (PwPD). Care partners are often asked to serve as informants regarding symptom severity, raising the question of concordance with PwPD self‐reports, especially regarding internalized (not outwardly visible) symptoms.
Objectives
Concordance between PwPD and informant ratings of motor and non‐motor symptoms was evaluated across multiple domains.
Methods
In 60 PwPD‐informant pairs, we compared ratings on 11 online self‐report measures comprising 33 total scores, 2/3 of which represented purely internalized symptoms. For discordant scores, multiple regression analyses were used to examine demographic/clinical predictors.
Results
Though concordant on 85% of measures, PwPD endorsed more non‐motor symptoms, bodily discomfort, stigma, and motor symptoms than informants. For PwPD, younger age, greater disease severity, and female gender predicted discordance.
Conclusions
Discordance between PwPD and informants on measures assessing symptoms that cannot be outwardly observed may require targeted education. |
| doi_str_mv | 10.1002/mdc3.13971 |
| format | Article |
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Self‐report of motor and non‐motor symptoms is integral to understanding daily challenges of persons with Parkinson's disease (PwPD). Care partners are often asked to serve as informants regarding symptom severity, raising the question of concordance with PwPD self‐reports, especially regarding internalized (not outwardly visible) symptoms.
Objectives
Concordance between PwPD and informant ratings of motor and non‐motor symptoms was evaluated across multiple domains.
Methods
In 60 PwPD‐informant pairs, we compared ratings on 11 online self‐report measures comprising 33 total scores, 2/3 of which represented purely internalized symptoms. For discordant scores, multiple regression analyses were used to examine demographic/clinical predictors.
Results
Though concordant on 85% of measures, PwPD endorsed more non‐motor symptoms, bodily discomfort, stigma, and motor symptoms than informants. For PwPD, younger age, greater disease severity, and female gender predicted discordance.
Conclusions
Discordance between PwPD and informants on measures assessing symptoms that cannot be outwardly observed may require targeted education.</description><identifier>ISSN: 2330-1619</identifier><identifier>EISSN: 2330-1619</identifier><identifier>DOI: 10.1002/mdc3.13971</identifier><identifier>PMID: 38269854</identifier><language>eng</language><publisher>Hoboken, USA: John Wiley & Sons, Inc</publisher><subject>Brief Report ; Brief Reports ; care partner ; discordance ; Female ; Humans ; non‐motor symptoms ; online ; Parkinson Disease - complications ; Self Report</subject><ispartof>Movement disorders clinical practice (Hoboken, N.J.), 2024-04, Vol.11 (4), p.391-397</ispartof><rights>2024 International Parkinson and Movement Disorder Society.</rights><rights>2024 International Parkinson and Movement Disorder Society</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4131-ee12f459c67c4d4199bf23a5c927da8eba26ac823169c1616b89c6fd3a2694d13</citedby><cites>FETCH-LOGICAL-c4131-ee12f459c67c4d4199bf23a5c927da8eba26ac823169c1616b89c6fd3a2694d13</cites><orcidid>0000-0001-5699-6204 ; 0000-0003-3760-7335</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Fmdc3.13971$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Fmdc3.13971$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>230,314,776,780,881,1411,27901,27902,45550,45551</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/38269854$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Kaplan, Rini I.</creatorcontrib><creatorcontrib>McDowell, Celina Pluim</creatorcontrib><creatorcontrib>Wall, Juliana</creatorcontrib><creatorcontrib>Kinger, Shraddha B.</creatorcontrib><creatorcontrib>Salazar, Robert D.</creatorcontrib><creatorcontrib>Neargarder, Sandy</creatorcontrib><creatorcontrib>Cronin‐Golomb, Alice</creatorcontrib><title>Discordance between Reports of Internalized Symptoms in Persons with Parkinson's Disease and Informants: Results from an Online Survey</title><title>Movement disorders clinical practice (Hoboken, N.J.)</title><addtitle>Mov Disord Clin Pract</addtitle><description>Background
Self‐report of motor and non‐motor symptoms is integral to understanding daily challenges of persons with Parkinson's disease (PwPD). Care partners are often asked to serve as informants regarding symptom severity, raising the question of concordance with PwPD self‐reports, especially regarding internalized (not outwardly visible) symptoms.
Objectives
Concordance between PwPD and informant ratings of motor and non‐motor symptoms was evaluated across multiple domains.
Methods
In 60 PwPD‐informant pairs, we compared ratings on 11 online self‐report measures comprising 33 total scores, 2/3 of which represented purely internalized symptoms. For discordant scores, multiple regression analyses were used to examine demographic/clinical predictors.
Results
Though concordant on 85% of measures, PwPD endorsed more non‐motor symptoms, bodily discomfort, stigma, and motor symptoms than informants. For PwPD, younger age, greater disease severity, and female gender predicted discordance.
Conclusions
Discordance between PwPD and informants on measures assessing symptoms that cannot be outwardly observed may require targeted education.</description><subject>Brief Report</subject><subject>Brief Reports</subject><subject>care partner</subject><subject>discordance</subject><subject>Female</subject><subject>Humans</subject><subject>non‐motor symptoms</subject><subject>online</subject><subject>Parkinson Disease - complications</subject><subject>Self Report</subject><issn>2330-1619</issn><issn>2330-1619</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp9kV1PFDEUhhsjEQLc-ANMEy8kJgs97czs1BtDFvlIIBDR66bTnpHiTLu2M2zWH-DvpssCQS-86sd5-uT0vIS8BbYPjPGD3hqxD0JO4RXZ4kKwCVQgX7_Yb5LdlG4ZY8DLinF4QzZFzStZl8UW-XPkkgnRam-QNjgsED39ivMQh0RDS8_8gNHrzv1GS6-X_XwIfaLO0yuMKfhEF264oVc6_nQ-nz8kmoWoE1LtbX7dhthrP6RPWZrGLkvbGPpcpJe-cx7p9RjvcLlDNlrdJdx9XLfJ9-Mv32ank_PLk7PZ4fnEFCBgggi8LUppqqkpbAFSNi0XujSST62usdG80qbmAipp8t-rps5sa0W-l4UFsU0-r73zsenRGvRD1J2aR9fruFRBO_V3xbsb9SPcKWCy5qWss2Hv0RDDrxHToPo8Qew67TGMSXEJdQlCiCqj7_9Bb8O4GmZSgnE2zYmwIlMf15SJIaWI7XM3wNQqYrWKWD1EnOF3L_t_Rp8CzQCsgYXrcPkflbo4mom19B6dE7KI</recordid><startdate>202404</startdate><enddate>202404</enddate><creator>Kaplan, Rini I.</creator><creator>McDowell, Celina Pluim</creator><creator>Wall, Juliana</creator><creator>Kinger, Shraddha B.</creator><creator>Salazar, Robert D.</creator><creator>Neargarder, Sandy</creator><creator>Cronin‐Golomb, Alice</creator><general>John Wiley & Sons, Inc</general><general>Wiley Subscription Services, 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>K9.</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0001-5699-6204</orcidid><orcidid>https://orcid.org/0000-0003-3760-7335</orcidid></search><sort><creationdate>202404</creationdate><title>Discordance between Reports of Internalized Symptoms in Persons with Parkinson's Disease and Informants: Results from an Online Survey</title><author>Kaplan, Rini I. ; McDowell, Celina Pluim ; Wall, Juliana ; Kinger, Shraddha B. ; Salazar, Robert D. ; Neargarder, Sandy ; Cronin‐Golomb, Alice</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4131-ee12f459c67c4d4199bf23a5c927da8eba26ac823169c1616b89c6fd3a2694d13</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2024</creationdate><topic>Brief Report</topic><topic>Brief Reports</topic><topic>care partner</topic><topic>discordance</topic><topic>Female</topic><topic>Humans</topic><topic>non‐motor symptoms</topic><topic>online</topic><topic>Parkinson Disease - complications</topic><topic>Self Report</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Kaplan, Rini I.</creatorcontrib><creatorcontrib>McDowell, Celina Pluim</creatorcontrib><creatorcontrib>Wall, Juliana</creatorcontrib><creatorcontrib>Kinger, Shraddha B.</creatorcontrib><creatorcontrib>Salazar, Robert D.</creatorcontrib><creatorcontrib>Neargarder, Sandy</creatorcontrib><creatorcontrib>Cronin‐Golomb, Alice</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Movement disorders clinical practice (Hoboken, N.J.)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Kaplan, Rini I.</au><au>McDowell, Celina Pluim</au><au>Wall, Juliana</au><au>Kinger, Shraddha B.</au><au>Salazar, Robert D.</au><au>Neargarder, Sandy</au><au>Cronin‐Golomb, Alice</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Discordance between Reports of Internalized Symptoms in Persons with Parkinson's Disease and Informants: Results from an Online Survey</atitle><jtitle>Movement disorders clinical practice (Hoboken, N.J.)</jtitle><addtitle>Mov Disord Clin Pract</addtitle><date>2024-04</date><risdate>2024</risdate><volume>11</volume><issue>4</issue><spage>391</spage><epage>397</epage><pages>391-397</pages><issn>2330-1619</issn><eissn>2330-1619</eissn><abstract>Background
Self‐report of motor and non‐motor symptoms is integral to understanding daily challenges of persons with Parkinson's disease (PwPD). Care partners are often asked to serve as informants regarding symptom severity, raising the question of concordance with PwPD self‐reports, especially regarding internalized (not outwardly visible) symptoms.
Objectives
Concordance between PwPD and informant ratings of motor and non‐motor symptoms was evaluated across multiple domains.
Methods
In 60 PwPD‐informant pairs, we compared ratings on 11 online self‐report measures comprising 33 total scores, 2/3 of which represented purely internalized symptoms. For discordant scores, multiple regression analyses were used to examine demographic/clinical predictors.
Results
Though concordant on 85% of measures, PwPD endorsed more non‐motor symptoms, bodily discomfort, stigma, and motor symptoms than informants. For PwPD, younger age, greater disease severity, and female gender predicted discordance.
Conclusions
Discordance between PwPD and informants on measures assessing symptoms that cannot be outwardly observed may require targeted education.</abstract><cop>Hoboken, USA</cop><pub>John Wiley & Sons, Inc</pub><pmid>38269854</pmid><doi>10.1002/mdc3.13971</doi><tpages>7</tpages><orcidid>https://orcid.org/0000-0001-5699-6204</orcidid><orcidid>https://orcid.org/0000-0003-3760-7335</orcidid></addata></record> |
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| ispartof | Movement disorders clinical practice (Hoboken, N.J.), 2024-04, Vol.11 (4), p.391-397 |
| issn | 2330-1619 2330-1619 |
| language | eng |
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| source | MEDLINE; Wiley Online Library Journals Frontfile Complete |
| subjects | Brief Report Brief Reports care partner discordance Female Humans non‐motor symptoms online Parkinson Disease - complications Self Report |
| title | Discordance between Reports of Internalized Symptoms in Persons with Parkinson's Disease and Informants: Results from an Online Survey |
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