An Assessment of Which Sociodemographic and Spinal Cord Injury–Specific Characteristics Influence Engagement With Experimental Therapies and Participation in Clinical Trials.
Background: Although a number of experimental therapies for spinal cord injury (SCI) have recently emerged, few authors have examined the goals of individuals with SCI considering experimental therapies, and none have determined whether sociodemographic and injury-specific characteristics influence...
| Publicado en: | Topics in Spinal Cord Injury Rehabilitation Vol. 27; no. 4; pp. 28 - 40 |
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| Autores principales: | , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
KnowledgeWorks Global, Ltd
2021
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=153651078&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 153651078 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10820744 0OF jtl: Topics in Spinal Cord Injury Rehabilitation issn: 10820744 maglogo: N pubinfo: dt: 2021 vid: 27 iid: 4 pid: 81084 pub: KnowledgeWorks Global, Ltd place: Richmond, Virginia artinfo: ui: 153651078 153651078 153651078 10.46292/sci20-00070 153651078 ppf: 28 ppct: 12 formats: fmt: @attributes: type: P tig: atl: An Assessment of Which Sociodemographic and Spinal Cord Injury–Specific Characteristics Influence Engagement With Experimental Therapies and Participation in Clinical Trials. aug: au: Pazzi, Carlotta Farrehi, Clara Capron, Maclain Anderson, Kim Richardson, Bonnie Stillman, Michael affil: Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, Pennsylvania sug: subj: Spinal Cord Injuries Psychosocial Factors Socioeconomic Factors Clinical Trials Research Subjects Consumer Participation Human Male Female Middle Age Surveys Bowel and Bladder Management Autonomic Dysreflexia Access to Information Information Resources Descriptive Statistics Chi Square Test Middle Aged: 45-64 years Male Female ab: Background: Although a number of experimental therapies for spinal cord injury (SCI) have recently emerged, few authors have examined the goals of individuals with SCI considering experimental therapies, and none have determined whether sociodemographic and injury-specific characteristics influence that engagement. Objectives: To determine (a) the goals of individuals with SCI who are considering experimental therapies; (b) whether sociodemographic factors, injury-specific characteristics, and concerns over adverse events influence those goals and/or participation in experimental therapies and clinical trials; and (c) whether people with SCI feel they have adequate information about experimental therapies and clinical trials. Methods: An online survey that yielded 364 responses. Results: Most respondents (83.7%) had sought information about experimental therapies, and just under half (47.8%) had received one. The most frequently cited functional goals were improvement in bowel and bladder function and elimination of dysreflexia (60.4%). Several goals were influenced by age and level and completeness of injury, and most respondents (93.4%) wanted more information about experimental therapies. Just over one-third (34.6%) of respondents had participated in a clinical trial, and nearly all (96.9%) wanted more information about them. Having received experimental therapies and participated in clinical trials was positively correlated with seeking SCI-specific care from an SCI specialist rather than from a primary care physician. Most (83.9%) respondents would avoid or be reluctant to engage with a medical center if they were made aware of harm done to trial participants. Conclusion: This work suggests that there are unmet information needs among people with SCI, specifically pertaining to experimental therapies and clinical trials. It also reveals that improved access to SCI specialists may enhance access to novel treatments and research efforts. Being made aware of harm to trial participants may influence the decision of individuals with SCI to seek care at or enroll in trials at these clinical sites. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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