{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,2]],"date-time":"2026-04-02T11:27:57Z","timestamp":1775129277732,"version":"3.50.1"},"reference-count":33,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2023,1,12]],"date-time":"2023-01-12T00:00:00Z","timestamp":1673481600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,1,12]],"date-time":"2023-01-12T00:00:00Z","timestamp":1673481600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Sci Rep"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Scientists are concerned that the research they conduct accurately portrays the needs of people living with spinal cord injuries (SCI). As such, this study set out to investigate the main problems faced by people with SCI and their expectations for research. This quantitative, exploratory, analytical, and cross-sectional study was carried out online, with a non-probabilistic sample of 618 Brazilian adults with SCI who had registered voluntarily to participate in the research of the Neurorehab group. The virtual questionnaire consisted of 22 questions based on ISCOS Data Sets. The majority (68.9%) of participants were male, with higher education or a post-graduate qualification (49.5%). Most injuries had experienced traumatic injuries (78.5%) and 58.7% were paraplegic. The mean age was 38.04\u00a0years (SD\u2009=\u20099.85). The main difficulties faced after SCI were locomotion\/accessibility (70.9%), neurogenic bladder (68.8%), neurogenic bowel (48.2%), and sexuality (36.1%). The highest demand was for experimental studies on stem cells (22.5%), rehabilitation (14.2%), and cures (13.9%). Most (84.3%) of those who reported sexuality problems after SCI were men (p\u2009=\u20090.013). The findings obtained empower people with SCI by enabling them to influence the agenda of scientific research based on their expectations and difficulties. This survey will also aid organizations to engage stakeholders to implement a comprehensive SCI management program.<\/jats:p>","DOI":"10.1038\/s41598-022-26733-7","type":"journal-article","created":{"date-parts":[[2023,1,12]],"date-time":"2023-01-12T10:06:45Z","timestamp":1673518005000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["Surveying people with spinal cord injuries in Brazil to ascertain research priorities"],"prefix":"10.1038","volume":"13","author":[{"given":"Fabiana","family":"Faleiros","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Deyse Cardoso","family":"de Oliveira Braga","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Soraia Dornelles","family":"Schoeller","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S\u00edlvia Helena","family":"Henriques","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Naira Beatriz Favoretto","family":"Cunha","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lorena Gomes Neves","family":"Videira","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Adriana Cordeiro Leandro","family":"da Silva Grillo","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2023,1,12]]},"reference":[{"key":"26733_CR1","doi-asserted-by":"publisher","first-page":"235","DOI":"10.2340\/16501977-2060","volume":"48","author":"S Rubielli","year":"2016","unstructured":"Rubielli, S., Gl\u00e4ssel, A. & Brach, M. From the person\u2019s perspective: Perceived problems in functioning among individuals with spinal cord injury in Switzerland. J. Rehabil. Med. 48, 235\u2013243. https:\/\/doi.org\/10.2340\/16501977-2060 (2016).","journal-title":"J. Rehabil. Med."},{"key":"26733_CR2","doi-asserted-by":"publisher","first-page":"53","DOI":"10.1038\/s41582-020-00436-x","volume":"17","author":"K Fouad","year":"2021","unstructured":"Fouad, K., Popovich, G. P., Kopp, A. M. & Schwab, J. M. The neuroanatomical-functional paradox in spinal cord injury. Nat. Rev. Neurol. 17, 53\u201362. https:\/\/doi.org\/10.1038\/s41582-020-00436-x (2021).","journal-title":"Nat. Rev. Neurol."},{"key":"26733_CR3","doi-asserted-by":"publisher","first-page":"50","DOI":"10.18502\/ijnl.v18i2.1288","volume":"18","author":"MA Nasidi","year":"2019","unstructured":"Nasidi, M. A., Akindele, M. O., Ibrahim, A. A., Ahmad, A. A. & Musa, A. Health-related quality of life and related characteristics of persons with spinal cord injury in Nigeria. Iran. J. Neurol. 18, 50\u201356. https:\/\/doi.org\/10.18502\/ijnl.v18i2.1288 (2019).","journal-title":"Iran. J. Neurol."},{"issue":"3","key":"26733_CR4","doi-asserted-by":"publisher","first-page":"543","DOI":"10.1016\/j.apmr.2020.09.392","volume":"102","author":"J Bickenbach","year":"2021","unstructured":"Bickenbach, J., Sabariego, C. & Stucki, G. Beneficiaries of rehabilitation. Arch. Phys. Med. Rehabil. 102(3), 543\u2013548. https:\/\/doi.org\/10.1016\/j.apmr.2020.09.392 (2021).","journal-title":"Arch. Phys. Med. Rehabil."},{"key":"26733_CR5","unstructured":"Schoeller, S. D., Martins, M. M., Faleiros, F., & Ramirez, N. Enfermagem de Reabilita\u00e7\u00e3o (Rio de Janeiro: Thieme Revinter, 2021). ISBN:9786555721041."},{"key":"26733_CR6","doi-asserted-by":"publisher","DOI":"10.1007\/978-0-230-39244-1","volume-title":"The New Politics of Disablement","author":"M Oliver","year":"2012","unstructured":"Oliver, M. & Barnes, C. The New Politics of Disablement (Palgrave Macmillan, 2012) (ISBN 9780333945674)."},{"key":"26733_CR7","doi-asserted-by":"publisher","first-page":"341","DOI":"10.1038\/sc.2015.199","volume":"54","author":"JJ Van Middendorp","year":"2016","unstructured":"Van Middendorp, J. J. et al. Top ten research priorities for spinal cord injury: The methodology and results of a British priority setting partnership. Spinal Cord. 54, 341\u2013346. https:\/\/doi.org\/10.1038\/sc.2015.199 (2016).","journal-title":"Spinal Cord."},{"key":"26733_CR8","doi-asserted-by":"publisher","first-page":"311","DOI":"10.18865\/ed.28.S2.311","volume":"28","author":"JD Mango","year":"2018","unstructured":"Mango, J. D. et al. Commentary: Community partner experiences in CPPR: What participation in partnered research can mean to community and patient stakeholders. Ethn. Dis. 28, 311\u2013316. https:\/\/doi.org\/10.18865\/ed.28.S2.311 (2018).","journal-title":"Ethn. Dis."},{"issue":"6","key":"26733_CR9","doi-asserted-by":"publisher","first-page":"2449","DOI":"10.1111\/hex.12213","volume":"18","author":"TA Abma","year":"2015","unstructured":"Abma, T. A., Pittens, C. A., Visse, M., Elberse, J. E. & Broerse, J. E. Patient involvement in research programming and implementation: A responsive evaluation of the Dialogue Model for research agenda setting. Health Expect. 18(6), 2449\u20132464. https:\/\/doi.org\/10.1111\/hex.12213 (2015).","journal-title":"Health Expect."},{"key":"26733_CR10","doi-asserted-by":"publisher","first-page":"93","DOI":"10.1038\/s41598-021-83211-2","volume":"11","author":"S Bahsoun","year":"2021","unstructured":"Bahsoun, S. et al. Evaluating patient perspectives on participating in scientific research and clinical trials for the treatment of spinal cord injury. Sci. Rep. 11, 93\u201398. https:\/\/doi.org\/10.1038\/s41598-021-83211-2 (2021).","journal-title":"Sci. Rep."},{"issue":"2","key":"26733_CR11","doi-asserted-by":"publisher","first-page":"177","DOI":"10.1038\/s41393-021-00742-1","volume":"60","author":"EJ Rohn","year":"2022","unstructured":"Rohn, E. J. et al. A cross-cultural mixed methods validation study of the spinal cord injury quality of life basic dataset (SCI QoL-BDS). Spinal Cord 60(2), 177\u2013186. https:\/\/doi.org\/10.1038\/s41393-021-00742-1 (2022).","journal-title":"Spinal Cord"},{"key":"26733_CR12","doi-asserted-by":"publisher","first-page":"588","DOI":"10.1038\/sc.2017.13","volume":"55","author":"A Montoto-Marqu\u00e9s","year":"2017","unstructured":"Montoto-Marqu\u00e9s, A. et al. Epidemiology of traumatic spinal cord injury in Galicia, Spain: Trends over a 20-year period. Spinal Cord 55, 588\u2013594. https:\/\/doi.org\/10.1038\/sc.2017.13 (2017).","journal-title":"Spinal Cord"},{"key":"26733_CR13","doi-asserted-by":"publisher","first-page":"1","DOI":"10.4172\/2165-7939.1000367","volume":"6","author":"A Rahman","year":"2017","unstructured":"Rahman, A. et al. Epidemiology of spinal cord injury in Bangladesh: A five year observation from a rehabilitation center. J. Spine 6, 1\u20133. https:\/\/doi.org\/10.4172\/2165-7939.1000367 (2017).","journal-title":"J. Spine"},{"key":"26733_CR14","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1080\/10790268.2021.1947679","volume":"10","author":"F Faleiros","year":"2002","unstructured":"Faleiros, F. et al. Epidemiological profile of spinal cord injury in Brazil. J. Spinal Cord Med. 10, 1\u20138. https:\/\/doi.org\/10.1080\/10790268.2021.1947679 (2002).","journal-title":"J. Spinal Cord Med."},{"key":"26733_CR15","unstructured":"Instituto Brasileiro de Geografia e Estat\u00edstica. Censo Demogr\u00e1fico 2010: Caracter\u00edsticas gerais da popula\u00e7\u00e3o, religi\u00e3o e pessoas com defici\u00eancia. [Internet]. Rio de Janeiro: IBGE. https:\/\/biblioteca.ibge.gov.br\/visualizacao\/periodicos\/94\/cd_2010_religiao_deficiencia.pdf (2012). Accessed 18 Feb 2022."},{"key":"26733_CR16","unstructured":"Instituto Brasileiro de Geografia e Estat\u00edstica. Acesso \u00e0 Internet e posse de telefone m\u00f3vel celular para uso pessoal. [Internet]. Rio de Janeiro: IBGE. https:\/\/www.ibge.gov.br\/estatisticas\/sociais\/trabalho\/17270-pnad-continua.html?edicao=19937&t=downloads. Accessed 18 Feb 2022 (2016)."},{"key":"26733_CR17","doi-asserted-by":"publisher","first-page":"80","DOI":"10.1097\/PHM.0b013e31821f70bc","volume":"91","author":"SL Groah","year":"2012","unstructured":"Groah, S. L. et al. Spinal cord injury and aging challenges and recommendations for future research. Am. J. Phys. Med. Rehabil. 91, 80\u201393. https:\/\/doi.org\/10.1097\/PHM.0b013e31821f70bc (2012).","journal-title":"Am. J. Phys. Med. Rehabil."},{"key":"26733_CR18","doi-asserted-by":"publisher","first-page":"85","DOI":"10.1080\/10790268.2019.1605750","volume":"42","author":"SL Hitzig","year":"2019","unstructured":"Hitzig, S. L. et al. Development of Emotional Well-Being indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project. J. Spinal Cord Med. 42, 85\u201398. https:\/\/doi.org\/10.1080\/10790268.2019.1605750 (2019).","journal-title":"J. Spinal Cord Med."},{"key":"26733_CR19","doi-asserted-by":"publisher","first-page":"571","DOI":"10.1179\/2045772314Y.0000000295","volume":"38","author":"R Kraft","year":"2015","unstructured":"Kraft, R. & Dorstyn, D. Psychosocial correlates of depression following spinal injury: A systematic review. J. Spinal Cord Med. 38, 571\u2013583. https:\/\/doi.org\/10.1179\/2045772314Y.0000000295 (2015).","journal-title":"J. Spinal Cord Med."},{"key":"26733_CR20","doi-asserted-by":"publisher","first-page":"1371","DOI":"10.1089\/neu.2004.21.1371","volume":"21","author":"KD Anderson","year":"2004","unstructured":"Anderson, K. D. Targeting recovery: Priorities of the spinal cord-injured population. J. Neurotrauma 21, 1371\u20131383. https:\/\/doi.org\/10.1089\/neu.2004.21.1371 (2004).","journal-title":"J. Neurotrauma"},{"key":"26733_CR21","doi-asserted-by":"publisher","first-page":"82","DOI":"10.1002\/j.2048-7940.1996.tb01681.x","volume":"21","author":"KA Hart","year":"1996","unstructured":"Hart, K. A., Rintala, D. H. & Fuhrer, M. Educational interests of individuals with spinal cord injury living in the community: Medical, sexuality, and wellness topics. Rehabil. Nurs. 21, 82\u201390. https:\/\/doi.org\/10.1002\/j.2048-7940.1996.tb01681.x (1996).","journal-title":"Rehabil. Nurs."},{"key":"26733_CR22","doi-asserted-by":"publisher","first-page":"155","DOI":"10.1590\/s1983-14472013000100020","volume":"34","author":"ISX Fran\u00e7a","year":"2013","unstructured":"Fran\u00e7a, I. S. X., Coura, A. S., Sousa, F. S., Almeida, P. C. & Pagliuca, lM. F. Quality of life in patients with spinal cord injury. Rev. Gaucha Enferm. 34, 155\u2013163. https:\/\/doi.org\/10.1590\/s1983-14472013000100020 (2013).","journal-title":"Rev. Gaucha Enferm."},{"key":"26733_CR23","unstructured":"Minist\u00e9rio da Sa\u00fade (BR). Pol\u00edtica nacional de sa\u00fade da pessoa com defici\u00eancia. Bras\u00edlia: Minist\u00e9rio da Sa\u00fade. https:\/\/bvsms.saude.gov.br\/bvs\/publicacoes\/politica_nacional_pessoa_com_deficiencia.pdf . Accesssed 18 Feb 2022 (2010)."},{"key":"26733_CR24","doi-asserted-by":"publisher","first-page":"230","DOI":"10.1080\/10790268.2016.1224541","volume":"40","author":"L Norin","year":"2017","unstructured":"Norin, L. et al. Housing accessibility and its associations with participation among older adults living with long-standing spinal cord injury. J. Spinal Cord Med. 40, 230\u2013240. https:\/\/doi.org\/10.1080\/10790268.2016.1224541 (2017).","journal-title":"J. Spinal Cord Med."},{"key":"26733_CR25","doi-asserted-by":"publisher","first-page":"46","DOI":"10.1002\/rnj.302","volume":"43","author":"F Faleiros","year":"2018","unstructured":"Faleiros, F., Pelosi, G., Warchausky, S., K\u00e4ppler, C. & Thomas, E. Factors influencing the use of intermittent bladder catheterization by individuals with spina bifida in Brazil and Germany. Rehabil. Nurs. 43, 46\u201351. https:\/\/doi.org\/10.1002\/rnj.302 (2018).","journal-title":"Rehabil. Nurs."},{"key":"26733_CR26","doi-asserted-by":"publisher","first-page":"505","DOI":"10.1080\/10790268.2016.1226700","volume":"40","author":"KL Best","year":"2017","unstructured":"Best, K. L. et al. Identifying and classifying quality of life tools for neurogenic bladder function after spinal cord injury: A systematic review. J. Spinal Cord Med. 40, 505\u2013529. https:\/\/doi.org\/10.1080\/10790268.2016.1226700 (2017).","journal-title":"J. Spinal Cord Med."},{"key":"26733_CR27","doi-asserted-by":"publisher","first-page":"1577","DOI":"10.1007\/s00345-018-2347-y","volume":"36","author":"JT Stoffel","year":"2018","unstructured":"Stoffel, J. T., Van der Aa, F., Wittmann, D., Yand, S. & Elliott, S. Fertility and sexuality in the spinal cord injury patient. World J. Urol. 36, 1577\u20131585. https:\/\/doi.org\/10.1007\/s00345-018-2347-y (2018).","journal-title":"World J. Urol."},{"key":"26733_CR28","doi-asserted-by":"publisher","first-page":"343","DOI":"10.3233\/NRE-172202","volume":"41","author":"MS Alexander","year":"2017","unstructured":"Alexander, M. S., Aisen, C. M., Alexander, S. M. & Aisen, M. L. Sexual concerns after Spinal Cord Injury: An update on management. NeuroRehabilitation 41, 343\u2013357. https:\/\/doi.org\/10.3233\/NRE-172202 (2017).","journal-title":"NeuroRehabilitation"},{"issue":"54","key":"26733_CR29","doi-asserted-by":"publisher","first-page":"jrm00302","DOI":"10.2340\/jrm.v54.2040","volume":"29","author":"V Str\u00f8m","year":"2022","unstructured":"Str\u00f8m, V. et al. Physical health conditions in persons with spinal cord injury across 21 countries worldwide. J. Rehabil. Med. 29(54), jrm00302. https:\/\/doi.org\/10.2340\/jrm.v54.2040 (2022).","journal-title":"J. Rehabil. Med."},{"key":"26733_CR30","unstructured":"Andrade, L. T., Favoretto, N. B., Souza, D. R. P., Gimenes, F. R. E., Faleiros, F. Diagn\u00f3sticos, resultados e interven\u00e7\u00f5es de enfermagem para indiv\u00edduos com les\u00e3o medular. In: PRONANDA: Programa de atualiza\u00e7\u00e3o em diagn\u00f3sticos de enfermagem: Ciclo 6 (Porto Alegre: Editora Artmed Panamericana.11\u201342, 2018) ISBN:9788551404324."},{"key":"26733_CR31","doi-asserted-by":"publisher","first-page":"e50","DOI":"10.2196\/jmir.5105","volume":"18","author":"NP Gordon","year":"2016","unstructured":"Gordon, N. P. & Hornbrook, M. C. Differences in access to and preferences for using patient portals and other ehealth technologies based on race, ethnicity, and age: A database and survey study of seniors in a large health plan. J. Med. Internet Res. 18, e50. https:\/\/doi.org\/10.2196\/jmir.5105 (2016).","journal-title":"J. Med. Internet Res."},{"key":"26733_CR32","doi-asserted-by":"publisher","first-page":"220","DOI":"10.1186\/s12913-018-2986-0","volume":"18","author":"NP Gordon","year":"2018","unstructured":"Gordon, N. P. & Hornbrook, M. C. Older adults\u2019 readiness to engage with eHealth patient education and self-care resources: A cross-sectional survey. BMC Health Serv. Res. 18, 220. https:\/\/doi.org\/10.1186\/s12913-018-2986-0 (2018).","journal-title":"BMC Health Serv. Res."},{"key":"26733_CR33","doi-asserted-by":"publisher","first-page":"202","DOI":"10.1093\/jamiaopen\/ooy034","volume":"2","author":"JS Obeid","year":"2018","unstructured":"Obeid, J. S. et al. Research participation preferences as expressed through a patient portal: Implications of demographic characteristics. JAMIA Open 2, 202\u2013209. https:\/\/doi.org\/10.1093\/jamiaopen\/ooy034 (2018).","journal-title":"JAMIA Open"}],"container-title":["Scientific Reports"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.nature.com\/articles\/s41598-022-26733-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s41598-022-26733-7","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.nature.com\/articles\/s41598-022-26733-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,1,12]],"date-time":"2023-01-12T10:07:44Z","timestamp":1673518064000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.nature.com\/articles\/s41598-022-26733-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,1,12]]},"references-count":33,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2023,12]]}},"alternative-id":["26733"],"URL":"https:\/\/doi.org\/10.1038\/s41598-022-26733-7","relation":{"has-preprint":[{"id-type":"doi","id":"10.21203\/rs.3.rs-1745985\/v1","asserted-by":"object"}]},"ISSN":["2045-2322"],"issn-type":[{"value":"2045-2322","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,1,12]]},"assertion":[{"value":"10 June 2022","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"19 December 2022","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"12 January 2023","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"The authors declare no competing interests.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"654"}}