2010-9690. Agency Forms Undergoing Paperwork Reduction Act Review

The Centers for Disease Control and Prevention (CDC) publishes a list of information collection requests under review by the Office of Management and Budget (OMB) in compliance with the Paperwork Reduction Act (44 U.S.C. Chapter 35). To request a copy of these requests, call Maryam I. Daneshvar, the CDC Reports Clearance Officer, at [phone] or send an e-mail to [e-mail]. Send written comments to CDC Desk Officer, Office of Management and Budget, Washington, DC or by fax to [phone]. Written comments should be received within 30 days of this notice.

Proposed Project

Hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI) Evaluation Support—New—National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC).

Background and Brief Description

The Division of Blood Disorders, located within the National Center on Birth Defects and Developmental Disabilities, implements health promotion and wellness programs designed to prevent secondary conditions in people with bleeding and clotting disorders. These programs are carried out in partnership with community-based organizations on the national and local level. The division's largest and longest standing cooperative agreement is held by the National Hemophilia Foundation (NHF). NHF, founded in 1948, has a long history of service through education, advocacy and research for people and families with hemophilia and other bleeding disorders.

The Hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI) is NHF's resource center which provides information, materials, and support to people with bleeding and clotting disorders. Over the past 17 years, HANDI's resource collection has grown to meet the changing needs of the community. HANDI processes thousands of requests for information from a wide variety of individuals and organizations including NHF chapters, medical professionals, consumers and their families, and teachers and students conducting research.

The type of information requested reflects a diversity of needs. Topics include homecare, orthopedics, physical therapy, rare factor deficiencies, psychosocial issues, blood safety, women's health, and financial and insurance reimbursement issues. HANDI's current resource library collection contains nearly 13,000 items. However, the process by which materials have been selected for development has not been informed by a systematic needs assessment or other exploratory research. Therefore, it is not known if the materials and messages that have been developed are meeting the information needs of the audiences they were intended to serve.

While there seems to be many HANDI materials available that focus on parents and family members of newly diagnosed children, considerably less attention has been given to developing materials for young children and adolescents, particularly materials that address transition issues. There are many types of transitions for the person with a bleeding disorder. These include acceptance of the bleeding disorder, self care, progressing through school, vocational/career planning, moving to an adult center, starting a family, middle age, and retirement. Transition occurs throughout life for all people, but for those with chronic illness, it takes on additional significance due to the nature of their condition.

The CDC's Division of Blood Disorders in conjunction with the National Hemophilia Foundation will conduct focus groups to gather information that will be used to design educational materials and health promotion programs for young children (aged 5-12 years) and adolescents (aged 16-19 years) that address transition issues. The groups will also be used to explore how young children and adolescents prefer to receive health messages and health information (e.g., brochures, videos, podcasts, YouTube.com, etc.). These findings will inform the development of key messages tailored to the target audiences.

The contractor selected will work with CDC and NHF, through its chapter network, to identify and recruit focus group participants. Formative research participants will include (1) parents of young children (aged 5-12 years) or young adults who can reflect back upon their experience and share what information, resources, and support they wished had been available when their child was young, and (2)adolescents (aged 16-19 years). Participants will include (1) parents of young children (aged 5-12 years) and (2) adolescents (aged 16-19 years). Participants will be recruited to participate in one of twelve in-person focus groups that will be conducted in the following cities: Detroit, Atlanta, Philadelphia, and Denver. There are no costs to the respondents other than time. The Total Estimated Annualized Burden is 197 hours.

Estimated Annualized Burden Hours

Type of respondents	Form name	Number of respondents	Responses per respondent	Avg. burden per response (in hours)
Parents of adolescents (aged 5-12) and parents of teens/young adults (aged 16-19) living with hemophilia	Participant Screener and Recruitment Script	120	1	12/60
Young adults aged 16-19 living with hemophilia.
Parents of adolescents (aged 5-12) and parents of teens/young adults (aged 16-19) living with hemophilia	Moderator's Guide	108 (12 groups × 9 participants per group)	1	1.5
Young adults aged 16-19 living with hemophilia.
Parents of adolescents (aged 5-12) and parents of teens/young adults (aged 16-19) living with hemophilia	Informed Consent	108 (12 groups × 9 participants per group)	1	6/60
Young adults aged 16-19 living with hemophilia.

Dated: April 21, 2010.

Maryam I. Daneshvar,

Acting Reports Clearance Officer, Centers for Disease Control and Prevention.