2020-01855. Agency Forms Undergoing Paperwork Reduction Act Review

In accordance with the Paperwork Reduction Act of 1995, the Centers for Disease Control and Prevention (CDC) has submitted the information collection request titled Understanding the Needs of Ovarian Cancer Survivors to the Office of Management and Budget (OMB) for review and approval. CDC previously published a “Proposed Data Collection Submitted for Public Comment and Recommendations” notice on July 5, 2019 to obtain comments from the public and affected agencies. CDC did not receive comments related to the previous notice. This notice serves to allow an additional 30 days for public and affected agency comments.

CDC will accept all comments for this proposed information collection project. The Office of Management and Budget is particularly interested in comments that:

(a) Evaluate whether the proposed collection of information is necessary for the proper performance of the functions of the agency, including whether the information will have practical utility;

(b) Evaluate the accuracy of the agencies estimate of the burden of the proposed collection of information, including the validity of the methodology and assumptions used;

(c) Enhance the quality, utility, and clarity of the information to be collected;

(d) Minimize the burden of the collection of information on those who are to respond, including, through the use of appropriate automated, electronic, mechanical, or other technological collection techniques or other forms of information technology, e.g., permitting electronic submission of responses; and

(e) Assess information collection costs.

To request additional information on the proposed project or to obtain a copy of the information collection plan and instruments, call [phone] or send an email to [e-mail]. Direct written comments and/or suggestions regarding the items contained in this notice to the Attention: CDC Desk Officer, Office of Management and Budget, 725 17th Street NW, Washington, DC 20503 or by fax to [phone]. Provide written comments within 30 days of notice publication.

Proposed Project

Understanding the Needs of Ovarian Cancer Survivors—New—National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP), Centers for Disease Control and Prevention (CDC).

Background and Brief Description

Ovarian cancer is the ninth most common cancer and the fifth leading cause of cancer death among women in the United States. Over 20,000 women are diagnosed with ovarian cancer each year. Due to the lack of a recommended screening test, ovarian cancer is often diagnosed at late stages, leading to low five-year survival rates. While previous studies are able to identify some of the needs of ovarian cancer survivors, particularly related to physical complications and side effects, additional research is needed to further understand the experiences and needs of survivors.

The National Academies of Sciences, Engineering, and Medicine released their report, Ovarian Cancers: Evolving Paradigms in Research and Care, which identified key priorities for researchers, including recommending research on the “supportive care needs of ovarian cancer survivors throughout the disease trajectory”. In order to address these research gaps and supplement current knowledge of the ongoing needs of survivors, including how to implement programs and interventions to improve their health, CDC has supported a survey of ovarian cancer survivors.

The goal of this project is to better understand the needs of ovarian cancer survivors and how to more effectively develop interventions targeted to this population. To achieve this goal, multiple recruitment methods will be utilized to recruit this unique population of women for the study. By using state cancer registries, social media advertisements, and respondent-driven sampling (RDS), the study will ensure recruitment of a diverse population of women.

This study will focus on the following research questions:

1. What physical and mental conditions do ovarian cancer survivors experience?

2. What kinds of pharmacologic and non-pharmacologic interventions do ovarian cancer survivors utilize to manage their conditions?

3. What barriers to ovarian cancer survivors have in accessing and receiving appropriate diagnostic care, treatment, and follow-up care?

4. What unmet needs do ovarian cancer survivors have?

The overall sample design targets 1,500 completed interviews. We assume that approximately 80% of completed surveys will come from more traditional sampling utilizing lists from the state cancer registries (n=1,200). The remainder of the completed interviews will come through social media outreach and respondent-driven sampling (RDS) methods (n=300).

For the social media recruitment, individuals will be recruited to participate in the web survey through advertisements posted on social media sites. These ads are targeted toward the specific population of women we wish to complete the survey. Interested respondents who click on an ad will be routed to the survey landing page which will explain the purpose of the study and include consent language. If the respondent is eligible, she will complete the same survey as those recruited via the state cancer registries.

Each recruitment method (registry-based or social media-based) will have an opportunity to recruit other women into the study through respondent-driven sampling (RDS). We anticipate that the majority of completed interviews will be obtained through traditional sampling practices, RDS provides an efficient way to identify other potentially eligible respondents through a networked-based recruitment approach.

Participation is voluntary. There are no costs to respondents other than their time. The total estimated annual burden hours are 1,253.

Estimated Annualized Burden Hours

Type of respondents	Form name	Number of respondents	Number of responses per respondent	Average burden per response (in hours)
Ovarian cancer survivors—state cancer registries	Mail-in or web-based questionnaire	1,200	1	50/60
Ovarian cancer survivors—social media recruitment	Web-based Questionnaire	195	1	50/60
Ovarian cancer survivors—Respondent Driven Sampling	Web-based Questionnaire	105	1	50/60
Ovarian cancer survivors recruited via social medial and RDS (ineligible)	Web-based Screener Only	100	1	2/60

Jeffrey M. Zirger,

Lead, Information Collection Review Office, Office of Scientific Integrity, Office of Science, Centers for Disease Control and Prevention.