{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T15:42:17Z","timestamp":1787499737512,"version":"build-2736575974"},"update-to":[{"DOI":"10.12688\/f1000research.74532.1","type":"new_version","label":"New version","source":"publisher","updated":{"date-parts":[[2023,12,14]],"date-time":"2023-12-14T00:00:00Z","timestamp":1702512000000}}],"reference-count":47,"publisher":"F1000 Research Ltd","license":[{"start":{"date-parts":[[2023,12,14]],"date-time":"2023-12-14T00:00:00Z","timestamp":1702512000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["K12HD055931"],"award-info":[{"award-number":["K12HD055931"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003451","name":"Euskal Herriko Unibertsitatea","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100003451","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100009157","name":"National Institute on Disability, Independent Living, and Rehabilitation Research","doi-asserted-by":"publisher","award":["90DPCP0001"],"award-info":[{"award-number":["90DPCP0001"]}],"id":[{"id":"10.13039\/100009157","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["f1000research.com"],"crossmark-restriction":false},"short-container-title":["F1000Res"],"abstract":"<ns7:p>Background Chronic health conditions, secondary conditions, and decreasing functional ability related to aging and\/or changes in underlying impairment may influence participation for persons aging with long-term physical disability (AwD). Objective To examine sample integrity and baseline findings through exploration of associations of sociodemographic, health, and disability factors with social participation for persons AwD. Methods This is a longitudinal cohort study following persons AwD over three years, reporting baseline cohort study data. A convenience sample of 474 persons AwD aged 45\u201365 reporting physical disability of \u22655 years\u2019 duration was recruited through community organizations and social media. The cohort was majority female (66.7%) and single (62.0%), and over one-third (38.6%) was non-White. Pain, fatigue, depression, ability to participate in, and satisfaction with, social roles and activities were measured with the Patient Reported Outcomes Measurement Information System. Results were manually compared against AwD study samples identified through a focused literature review and national census data. Results Participants aged 55\u201360 and 61\u201365 had significantly lower rates of employment and marriage and higher rates of living alone than participants aged 45\u201354. Participants reported higher rates of fatigue, pain, and depression and lower ability to participate in, and satisfaction with, participation in, social roles and activities than the general population. Ability to participate and satisfaction with participation were highest among Black\/African American participants. Conclusions Participants reported higher rates of common AwD symptoms and lower ability to participate and satisfaction with participation than the general population, consistent with prior studies of AwD samples. This cohort reflects the AwD population and can be considered an AwD sample, comparable to those found in existing literature. The focus of future analyses will be to gain a greater understanding of chronic health conditions, incidence of falls, engagement in everyday life activities, and the impact of the environment.<\/ns7:p>","DOI":"10.12688\/f1000research.74532.2","type":"journal-article","created":{"date-parts":[[2023,12,14]],"date-time":"2023-12-14T12:35:08Z","timestamp":1702557308000},"page":"68","update-policy":"https:\/\/doi.org\/10.12688\/f1000research.crossmark-policy","source":"Crossref","is-referenced-by-count":2,"title":["Aging with long-term physical disability: Cohort analysis of survey sample in the U.S."],"prefix":"10.12688","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8418-5804","authenticated-orcid":false,"given":"Kerri A.","family":"Morgan","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1279-2925","authenticated-orcid":false,"given":"Michelle","family":"Putnam","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra M.","family":"Espin-Tello","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marian","family":"Keglovits","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret","family":"Campbell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yan","family":"Yan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aimee","family":"Wehmeier","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2816-7158","authenticated-orcid":false,"given":"Susan","family":"Stark","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2560","published-online":{"date-parts":[[2023,12,14]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"611-615","DOI":"10.1016\/j.dhjo.2016.12.016","article-title":"Identifying 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Med."}],"container-title":["F1000Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/f1000research.com\/articles\/11-68\/v2\/xml","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/f1000research.com\/articles\/11-68\/v2\/pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/f1000research.com\/articles\/11-68\/v2\/iparadigms","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,5,15]],"date-time":"2024-05-15T05:40:13Z","timestamp":1715751613000},"score":1,"resource":{"primary":{"URL":"https:\/\/f1000research.com\/articles\/11-68\/v2"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,12,14]]},"references-count":47,"URL":"https:\/\/doi.org\/10.12688\/f1000research.74532.2","relation":{"has-review":[{"id-type":"doi","id":"10.5256\/f1000research.159782.r259609","asserted-by":"subject"},{"id-type":"doi","id":"10.5256\/f1000research.159782.r259609","asserted-by":"object"}]},"ISSN":["2046-1402"],"issn-type":[{"value":"2046-1402","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,12,14]]},"assertion":[{"value":"Indexed","URL":"https:\/\/f1000research.com\/articles\/11-68\/v2#article-reports","order":0,"name":"referee-status","label":"Referee status","group":{"name":"current-referee-status","label":"Current Referee Status"}},{"value":"10.5256\/f1000research.78298.r173578, Kenzie Latham-Mintus, Indiana University Bloomington, Bloomington, Indiana, 20 Jul 2023, version 1, 1 approved, 1 approved with reservations","URL":"https:\/\/f1000research.com\/articles\/11-68\/v1#referee-response-173578","order":0,"name":"referee-response-173578","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"<b>Susan Stark<\/b>; \n<i>Posted: 25 Jul 2023<\/i>; We thank the reviewer for the time and effort taken to review the manuscript. We appreciate their summary and comments related to our study.","URL":"https:\/\/f1000research.com\/articles\/11-68\/v2#referee-comment-9954","order":1,"name":"referee-comment-9954","label":"Referee Comment","group":{"name":"article-reports","label":"Article Reports"}},{"value":"<b>Susan Stark<\/b>; \n<i>Posted: 05 Dec 2023<\/i>; Thank you for these comments. We greatly appreciate the reviewer's time and feedback.","URL":"https:\/\/f1000research.com\/articles\/11-68\/v2#referee-comment-10712","order":2,"name":"referee-comment-10712","label":"Referee Comment","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.5256\/f1000research.78298.r173572, Ellen Melbye Langballe, Vestfold Hospital Trust, Norwegian National Centre for Ageing and Health, T\u00f8nsberg, 21 Nov 2023, version 1, 1 approved, 1 approved with reservations","URL":"https:\/\/f1000research.com\/articles\/11-68\/v1#referee-response-173572","order":3,"name":"referee-response-173572","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"<b>Susan Stark<\/b>; \n<i>Posted: 05 Dec 2023<\/i>; \n<b>Reviewer 2 comment: <\/b>A&nbsp;significant weakness of the paper in its present form is that sample integrity, investigated by comparing the results of the original analysis with results reported in existing literature, is not described or discussed in the abstract\u2019s method section, in the methods section of the paper (e.g. how comparable papers were retrieved (systematically search?), number of comparable studies), or in the discussion section (e.g. limitations). Necessary details of the methods used regarding the comparison of results from existing literature should be provided.  \n<b>Response:<\/b> Thank you for the opportunity to answer these questions about sample integrity. We now see that our description of our process of considering our sample was too brief and also not specific enough. Given the word limitations, we have attempted to provide a brief, but fuller, description of this with the following edits to the manuscript:  1. We edited the Abstract Methods to add the following sentence:&nbsp;  \n<i>\u201cResults were manually compared against AwD study samples identified through a focused literature review and national census data.\u201d<\/i>  2. At the end of the Methods section, we added a paragraph titled\n<i> \u201cFocused literature review and sample comparisons.\u201d<\/i> This section describes how we reviewed the literature, which articulates the databases we used and the search criteria. We did not complete a search using a systematic review protocol, but rather identified articles through a focused review that involved pursuing citations of discovered articles in an attempt to find further studies. Because this area of literature is quite small, and often differently indexed with inconsistent keywords, for example, it is difficult to find literature. As we mention in this new section, we found only four separately published studies, but all came from the same parent data source. For that reason, we also drew on U.S. Census Bureau data to consider our sample.  \n<i>\u201c<b>Focused literature review and sample comparisons<\/b><\/i>  \n<i>Using PubMed and Google Scholar databases, we conducted a focused literature review of peer-reviewed journal articles in English, seeking U.S.-based cross-disability samples (composed of more than a singular disease or impairment diagnosis group) from 2011\u20132021 of over 100 individuals who had self-reported long-term physical disability, were between the ages of 18 and 65, and who were asked about pain, fatigue, and\/or depression using measures similar to the PROMIS measures we used in our study. We located four articles that met these criteria; however, they all used the same or similar data collected at a single university. We reviewed the demographic traits of our sample against the samples used for those four studies and also 2019 U.S. Census Bureau data to better understand differences in our sample compared to the general U.S. and the state-specific populations in the same age range.\u201d<\/i>  3. In the first paragraph of the Discussion section, we changed the wording of the first sentence from\n<i> \u201cFindings from our analyses show that our cohort is distinct yet similar to other AwD study populations\u201d<\/i> to:  \n<i>\u201cFindings from our analyses show that our cohort is distinct yet similar to the other AwD cohort study samples we identified.\u201d<\/i>  We also updated one reference in the first paragraph of this section, replacing Harrison et al. with Walker et al.:  \n<i>\u201c\u2026for example, work by Walker et al.<sup>47<\/sup> focuses on predominantly Latina participants\u201d<\/i>  In the fourth paragraph of the Discussion, we modified the first sentence, changing it from, \n<i>\u201cOur participants experience common AwD symptoms found in other studies,\u201d <\/i>to:  \n<i>\u201cOur participants experience common AwD symptoms found in the four studies we identified.\u201d<\/i>  Later in the same paragraph, we added the phrase \n<i>\u201cas we understand it at this time\u201d<\/i> to the end of the fifth sentence.  4. In the Study Limitations section, we added two sentences to further clarify the limitations of our analysis:  \n<i>\u201cThe cross-disability AwD literature is quite small. Our sample comparison was narrow and targeted; it may not fully reflect AwD samples found more broadly in the literature or capture information present in study samples of single-disability, -impairment, or -disease groups, for example. As noted in our introduction, however, pain, fatigue, and depression are commonly found among participants in these studies.\u201d<\/i>  5. In the Conclusions section, to increase clarification and reduce word count (as our edits added words) we rephrased the conclusion of our findings to be more limited in scope, eliminating phrases we believed were not necessary or perhaps redundant, stating:  \n<i>\u201cThese findings add to the growing body of knowledge about what common traits AwD study populations may have.\u201d<\/i>","URL":"https:\/\/f1000research.com\/articles\/11-68\/v2#referee-comment-10713","order":4,"name":"referee-comment-10713","label":"Referee Comment","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.5256\/f1000research.159782.r259609, Anthony G Chesebro, Department of Biomedical Engineering, Stony Brook University, Stony Brook, 15 May 2024, version 2, indexed","URL":"https:\/\/f1000research.com\/articles\/11-68\/v2#referee-response-259609","order":5,"name":"referee-response-259609","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"The content of this manuscript was developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DPCP0001). \r\n\r\nThe content of this manuscript was also developed with support from the University of the Basque Country, Spain, under the grant Contrataci\u00f3n para la Especializaci\u00f3n de Personal Investigador Doctor en la UPV\/EHU 2019 and the National Institutes of Health, Comprehensive Opportunities in Rehabilitation Research Training (K12 HD055931). \r\n\r\nThe funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.","order":6,"name":"grant-information","label":"Grant Information"},{"value":"This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.","order":0,"name":"copyright-info","label":"Copyright"}]}}