Name of the project
- Improving Cancer Related Follow-Up Care among Hispanic and non-Hispanic Young Cancer Survivors
Project abstract/brief description
- Today, 80% of all children diagnosed with cancer will be cured of their disease, however many will suffer from late and long term effects of their disease and therapy. As a result of these significant delayed health risks, it is recommended that young adult cancer survivors (YCS) receive life long monitoring to facilitate early detection and prevention of treatment-related late effects. The primary goal of the overall study is to establish a multi-ethnic cohort of recently treated YCS to provide vital information on risk factors for poor follow-up care and to support additional research proposals on methods to improve health care utilization, health behaviors and ultimately, long term survival. This study involves an interdisciplinary collaboration between investigators with clinical, behavioral and epidemiological expertise at Childrens Hospital Los Angeles (CHLA), the Institute for Health Promotion & Disease Prevention Research (IPR), and the Cancer Surveillance Program (CSP).
In the first phase of this study, we will conduct two focus groups, one with 15 YCS and the other with 15 parents of YCS to determine the best methods to approach this age group and to identify the most critical barriers to seeking follow-up care. This information will be used to guide the second phase of the study which will include a survey sent to an estimated 625 YCS who were diagnosed and treated between 2000-2007 and to 1 parent of YCS who have been sent the survey (625 parents). Finally the third phase of the study will involve an intervention designed to increase participation in follow-up medical care. 40 survey respondents will be selected based on their survey responses indicating lower participation in follow-up care.
Name of Principal Investigator
Department/division/center/school in which the project is based
Primary institution in which this project is based
- Childrens Hospital Los Angeles (CHLA)
- University of Southern California - Keck School of Medicine (USC - HSC)
Name and email address for the Project Director / Manager, or person responsible for overseeing the day-to-day activities of this project
If we were to request additional information about this project, pelase provide the name of the person to contact and his/her email address
- Project Director / Manager listed above
Are there any Co-Investigators on this project?
Please name all Co-Investigators and their institutional affiliation
- Co-Investigator - Institutional affiliation
- Ann Hamilton, USC
- Co-Investigator - Institutional affiliation
- Joel Milam, USC
Which, if any, of the following institutions are you partnering with for this project?
- Childrens Hospital Los Angeles (CHLA)
- University of Southern California - Keck School of Medicine (USC - HSC)
- Other (please specify)
For each partner institution listed, please indicate the specific department / division / institute / center with which you are partnering
- Joel Milam, IPR at USC
Ann Hamilton, Preventive Medicine
Are you collaborating with any other academic, clinical or community organizations on this project?
List any academic, clinical and / or community organizations with which you are collaborating. Please include each partner organization's location
Which institutional IRBs have reviewed and approved this project?
- Childrens Hospital Los Angeles (CHLA)
- USC - Health Sciences
- Other (please specify)
Which of the following best characterizes the agency(ies) funding this project? (IF THIS IS A SUBCONTRACT, PLEASE IDENTIFY THE CORE FUNDING SOURCE, e.g., NIH, CDC, etc.)
What month and year does / did funding begin?
What month and year does/did funding end?
Which of the following best describes the project's thematic focus?
- Access to care
- Health promotion/prevention
- Cancer - treatment, survival, prevention, screening, outreach and surveillance
In what context do your project activities (e.g. data collection) take place?
- Clinic or other ambulatory healthcare setting
How would you classify this project?
Please indicate which of the following best characterizes the type of research you are conducting?
- Behavioral/social research
- Clinical/patient-oriented research
- Health services research
Which of the following best characterizes your study design?
- Mixed methods
- Cross-sectional
What type of data collection methods are used?
- Surveys
- Focus groups
- Chart/electronic medical record review
Which services does your program provide?
- NOT a service project - Research only
How many participants will be/were recruited to participate in your research or service program over the funding/study period?
Which of the following best describe the population this project targets?
Which of the following best describes the age groups this project targets?
- Adolescents (12-18 years)
- Young adults (19-25 years)
Which of the following best describes the racial/ethnic characteristics of the project participants?
Please provide any additional characteristics of your project participants that are specific to the goals of the project, e.g., low-income, un-insured, incarcerated, pregnant/parenting teens, populations with disabilities, specific conditions, etc.
Which of the following best describes the location(s) in which this project takes/took place?
In which LA County Service Planning Area (SPA) do/did your project activities take place?
- SPA 4 (Metro)
- SPA 8 (South Bay/Long Beach)
In which locations outside LA County do your project activities take place?
Does this project have an advisory board?
How often does your advisory board meet?
Please indicate which of the following best describes the membership of this project's advisory board?
- Community advocates/leaders
- Community healthcare providers
- Members of the research/academic community
Which of the following best describe the type of guidance your advisory group provides for your project?
- Development of research/service materials, research tools, recruitment plans
In what ways, if any, has your project disseminated information about your project, including findings and lessons learned?
Which dissemination activities do you/did you find to be most effective?
How useful do you think a CTSI Research/Service Clearinghouse will be to the following audiences?
How likely are you to use the CTSI web-based clearinghouse?
How would you envision using a resource like the CTSI web-based clearinghouse?
What specific information would you want in the CTSI web-based clearinghouse to maximize its utlility to you, other researchers, and representatives of the community?
What would you like to see in terms of the CTSI web-based clearinghouse design and functionality that would maximize the clearinghouse's utility for you and others?