{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T16:11:22Z","timestamp":1791994282088,"version":"4.4.0"},"reference-count":28,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2019,2,19]],"date-time":"2019-02-19T00:00:00Z","timestamp":1550534400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"VeloSano Impact Grant","award":["awarded to D. R. Shepard"],"award-info":[{"award-number":["awarded to D. R. Shepard"]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Patient Experience"],"published-print":{"date-parts":[[2020,2]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>The study design and nature of oncology phase 1 clinical trials create a uniquely vulnerable patient population yet little research has been conducted to identify the added burden these trials create for both cancer patients and their caregiver(s).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>Examining the perceptions and needs of patients and their caregivers participating in phase 1 oncology clinical trials, the investigators tested the hypothesis that the caregiver will exhibit a higher level of burden and\/or distress than the patient.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method:<\/jats:title>\n                    <jats:p>A mixed-methods exploratory process utilizing patient and caregiver interviews and quality-of-life questionnaires was used to assess the psychosocial burdens associated with oncology clinical trial participation. A qualitative and quantitative analysis of the responses were 8 performed.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Result:<\/jats:title>\n                    <jats:p>Both patients and caregivers reported similar themes identifying the burdens and benefits related to phase 1 clinical trial participation. However, the caregivers\u2019 expressed burden exceeded that of the patients\u2019 validating the study\u2019s hypothesis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>The need for ongoing additional support services for not only the patient but also the caregiver was identified.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/2374373519830743","type":"journal-article","created":{"date-parts":[[2019,2,19]],"date-time":"2019-02-19T07:09:13Z","timestamp":1550560153000},"page":"27-33","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":24,"title":["Who Needs What? Perceptions of Patients and Caregivers in Oncology Phase 1 Trials"],"prefix":"10.1177","volume":"7","author":[{"given":"Victoria","family":"Rezash","sequence":"first","affiliation":[{"name":"Taussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janice","family":"Reed","sequence":"additional","affiliation":[{"name":"Taussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara","family":"Gedeon","sequence":"additional","affiliation":[{"name":"Taussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eric","family":"Parsons","sequence":"additional","affiliation":[{"name":"Taussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"Siedlecki","sequence":"additional","affiliation":[{"name":"Office of Nursing Research and Innovation, Cleveland Clinic, Cleveland, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bradley","family":"Daniels","sequence":"additional","affiliation":[{"name":"Taussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dale R","family":"Shepard","sequence":"additional","affiliation":[{"name":"Taussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2019,2,19]]},"reference":[{"key":"bibr1-2374373519830743","unstructured":"National Institute of Health (NIH), Phases of clinical trials. Cancer Treatment, 2016. Available at: https:\/\/www.cancer.gov\/about-cancer\/treatment\/clinical-trials\/what-are-trials\/phases. 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Effect of caregiver perception of preparedness on burden in an oncology population. Oncol Nurs Forum. 2002;29:E70\u2013E76. Available at: https:\/\/onf.ons.org\/onf\/29\/6\/effect-caregiver-perception-preparedness-burden-oncology-population. Accessed August 26, 2017.","DOI":"10.1188\/02.ONF.E70-E76"},{"key":"bibr20-2374373519830743","doi-asserted-by":"publisher","DOI":"10.1097\/NJH.0b013e318268d04e"},{"key":"bibr21-2374373519830743","unstructured":"The Advisory Board Company. Advisory Board Daily Briefing. August 29, 2012. Available at: http:\/\/www.advisory.com\/Daily-Briefing\/2012\/08\/29\/Cancer-board-to-require-patient-distress-screening. Accessed October 21, 2014."},{"key":"bibr22-2374373519830743","doi-asserted-by":"publisher","DOI":"10.1054\/bjoc.2001.1724"},{"key":"bibr23-2374373519830743","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-009-0787-z"},{"key":"bibr24-2374373519830743","unstructured":"Pfizer Inc. 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