2011-9077. Agency Information Collection Activities: Submission for OMB Review; Comment Request

Periodically, the Health Resources and Services Administration (HRSA) publishes abstracts of information collection requests under review by the Office of Management and Budget (OMB), in compliance with the Paperwork Reduction Act of 1995 (44 U.S.C. Chapter 35). To request a copy of the clearance requests submitted to OMB for review, e-mail [e-mail] or call the HRSA Reports Clearance Office on [phone].

The following request has been submitted to the Office of Management and Budget for review under the Paperwork Reduction Act of 1995:

Proposed Project: Sickle Cell Disease Program Evaluations and Quality Improvement Activities—[NEW]

The Sickle Cell Disease and Newborn Screening Program (SCDNBSP) and the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) are both administered by the Genetic Services Branch (GSB) of the Division of Services for Children with Special Health Needs in the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau (MCHB). The SCDTDP is comprised of geographically distributed regional networks that provide coordinated, comprehensive, culturally competent, and family-centered care to families with sickle cell disease and a national coordinating center to support grantee activities. The SCDTDP is designed to improve access to services for individuals with sickle cell disease, improve/expand patient and provider education, and improve/expand the continuity and coordination of service delivery for individuals with sickle cell disease and carriers of the sickle cell gene mutation. The SCDNBSP is comprised of several national funded community-based sickle cell disease networks located in the U.S. and the National Coordinating and Evaluation Center. The community-based sickle cell disease networks partner with State newborn screening programs, comprehensive sickle cell treatment centers, and health care professionals to provide support to infants screened positive for sickle cell disease, carriers of the sickle cell gene mutation and their families.

HRSA seeks to conduct two evaluations (SCDTDP evaluation previously approved by OMB) and a quality improvement project, the purpose of which are to assess the service delivery processes and outcomes resulting from the systems of care delivered by the SCDNBSP and SCDTDP networks to individuals affected by sickle cell disease who present at their sites for care. The clients of the three programs will be the respondents for this data collection activity.

The annual estimate of burden for both the SCDNBSP and the SCDTDP evaluations and quality improvement effort is as follows:

Estimated Hour and Cost Burden of the Data Collection

Questionnaires	Number of respondents	Responses per respondent	Total responses	Average hours per response	Total hour burden	Wage rate	Total hour cost
MDP SCD Questionnaire	140	2	280	.45	126	$20.90	$2633.4
MDP SCT Questionnaire	1400	1	1400	.30	420	20.90	8778
Utilization Questionnaire (pre-demonstration)	900	1	900	.75	675	20.90	14,107.5
Utilization Questionnaire (post demonstration)	900	1	900	.50	450	20.90	9,405
SF-36 Health Survey for adults over 18 years of age	630	2	1260	.25	315	20.90	6,583.5
PedsQL for parents of children & adolescents 18 years or younger	270	2	540	.25	135	20.90	2,821.5
PedsQL for children & adolescents 18 years or younger	225	2	450	.25	112.5	20.90	2,351.25
The Medical Home Family Index (Health Care Satisfaction)	900	2	1800	.25	450	20.90	9,405
QI Instrument	9	12	108	4	432	20.90	9,028.80
Hemoglobinopathies Emerging Populations Form (Client Family Communication)	900	2	1800	.20	360	20.90	7,524
Total	6,274		9,438		3,475.5		72,637.95

Written comments and recommendations concerning the proposed information collection should be sent within 30 days of this notice to the desk officer for HRSA, either by e-mail to [e-mail] or by fax to 202-395-6974. Please direct all correspondence to the “attention of the desk officer for HRSA.”

Dated: April 8, 2011.

Reva Harris,

Acting Director, Division of Policy and Information Coordination.