Piloting a Patient-Driven Online Survey to Better Understand Cancer in Adolescents and Young Adults (AYA) in the United States

被引:0
|
作者
Beaupin, Lynda [1 ]
Borinstein, Scott [2 ]
Yeager, Nicholas D. [3 ]
Rokitka, Denise [4 ]
Schweitzer, Jennifer [4 ]
Uwazurike, Odochi [4 ]
Senall, John [5 ]
Amankwah, Earnest [6 ]
Shaw, Peter H. [7 ]
机构
[1] Johns Hopkins All Childrens Hosp, Canc & Blood Disorders Inst, St Petersburg, FL USA
[2] Vanderbilt Univ, Sch Med, Pediat Hematol Oncol, Vanderbilt Childrens Hospital, Nashville, TN USA
[3] Nationwide Childrens Hosp, Pediat Oncol, Columbus, OH USA
[4] Roswell Pk Comprehens Canc Ctr, Dept Pediat, Buffalo, NY USA
[5] Mobile First Media LLC, Med Educ, Buffalo, NY USA
[6] Med Coll Wisconsin, Clin & Translat Sci Inst Data Sci, Milwaukee, WI USA
[7] Med Coll Wisconsin, Childrens Wisconsin, Pediat Oncol, Milwaukee, WI 53226 USA
关键词
access to health care; cancer survivorship; registry; cancer; adolescent and young adult; ACCESS; CARE;
D O I
10.7759/cureus.63749
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Adolescents and young adults (AYAs) with cancer are a unique patient population in oncology. An opt-in, secure online survey was conducted among a general population of AYA patients and survivors to better understand the current landscape of AYA cancer. A 28-item online survey was designed for cancer patients and survivors diagnosed between the ages of 18 and 39 years. It comprised questions about demographics, treatment site, clinical trial involvement, support services available, and impact on employment, schooling, and finances. A total of 590 patients registered and 447 (76%) completed the survey. This online exercise was found to be feasible and can serve as an effective method to survey the AYA cancer population.
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页数:13
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