SUPPLEMENTARY INFORMATION:

Information Collection Request Title: National Marrow Donor Program Patient Support Center Survey, OMB No. 0906-0004—Revision.

Abstract: The C.W. Bill Young Cell Transplantation Program (CWBYCTP) was established by the Stem Cell Therapeutic and Research Act of 2005 (Public Law [Pub. L.] 109-129) and was reauthorized in 2010 (Pub. L. 111-264), 2015 (Pub. L. 114-104), and again in 2021 (Pub. L. 117-15). The CWBYCTP's ( printed page 61414) Office of Patient Advocacy (OPA) is operated by the National Marrow Donor Program, d.b.a. NMDP^SM . Through the OPA, NMDP^SM provides navigation services, educational resources, and support to people in need of or who have received an allogeneic hematopoietic cell transplant (HCT). As the contractor for the OPA, NMDP^SM is required to conduct surveys to evaluate patient satisfaction with the services provided. Accordingly, NMDP^SM will solicit feedback from HCT patients, caregivers, and family members who have contacted the NMDP^SM Patient Support Center (PSC). The survey is administered through a web-based system. In addition to questions that measure satisfaction, the survey also includes demographic questions to assess the representativeness of the findings.

A 60-day Notice was published in the Federal Register on July 1, 2026, vol. 91, No. 125, pp. 40004-40005. There were two public comments. The first commenter suggested that, for surveys administered repeatedly over time, previously submitted information be pre-populated to reduce respondent burden and improve the user experience. HRSA reviewed the comment and did not adopt this change, because this survey is not designed to collect longitudinal data. Although pre-populated information may reduce burden in some post-transplant follow-up contexts, this survey is specific to respondents who contact the NMDP^SM PSC immediately before and after transplant, generally within a 12-month period. Respondents generally receive the survey only once within that 12-month period after the first interaction. A subsequent survey is sent only if they have another contact with the NMDP^SM PSC after a 12-month period. Pre-populating the survey with prior responses would not be relevant to a subsequent survey because each survey measures satisfaction with a specific interaction. The second commenter recommended administering the survey in alternate formats (such as Short Message Service) and also suggested that survey response data should be presented in a way that clearly delineates the proportion of individuals served by the NMDP^SM PSC who received the survey, those that did not receive the survey because no email address was provided, those that responded to the survey, and those that received the survey but did not respond. HRSA reviewed this comment and determined that suggestions related to the presentation and interpretation of survey data are consistent with existing analysis and evaluation methodologies for this survey including delineation of surveyed and non-surveyed groups within the total population. HRSA also determined that the use of Short Message Service or other technologies for survey administration must be reviewed further for cost and implementation considerations. HRSA will complete this review and implement changes, if appropriate, by December 31, 2028. Therefore, no changes were made to the information collection in response to the two comments received.

Need and Proposed Use of the Information: HCT is a complex medical procedure that requires significant support before, during, and after the procedure. Many patients experience barriers that impede access to HCT. Barriers to HCT-related care and educational information are multifactorial. The NMDP^SM PSC offers programs and services to support patients, caregivers, and family members throughout their HCT journey. Feedback from recipients of NMDP^SM services is essential to understand the changing needs for services and information, as well as to assess the effectiveness of existing services. The primary use of information gathered through the survey is to assess the helpfulness of participants' initial contact with PSC patient navigators and to identify areas for improvement in service delivery. Patient navigators are nurses or oncology certified navigators, who respond to requests for information and support. Program managers and NMDP^SM leadership use this evaluation data to understand patient experiences and inform program and resource allocation decisions.

Web-based surveys will be administered to all participants (patients, caregivers, and family members) who have contact with the PSC. All participants for whom an email address is known will be invited to complete the survey online. Survey respondents will be notified via email invitation and in the survey instructions that participation is voluntary and that responses will be kept confidential. A follow-up invitation will be sent to non-respondents within 2 weeks.

The survey will include these items to measure: (1) their experience; (2) if the contact helped the participant feel more confident in coping with treatment; (3) if the contact helped the participant feel more hopeful; (4) if the contact helped the participant feel less alone; (5) increased awareness of available resources; (6) if the contact helped the participant feel more informed about treatment options; (7) if their questions were answered; and (8) types of challenges faced by participant. The survey data will be analyzed quarterly and annually, and results will be shared with program managers. Feedback indicating a need for improvement will be reviewed by program managers semiannually and implementation of resulting program changes or additions will be documented.

HRSA is revising some of the survey questions and phrasing to improve clarity, without changing the intent of the question. One response option has been added to the question about the respondent's education level. There are no changes to the instructions, frequency of collection, or use of the information.

Likely Respondents: Respondents will include patients, caregivers, and family members who have contact with the PSC via phone or email for HCT navigation services and support (advocacy). The decision to survey all participants was made based on the historically low response rate to this survey due to patients' frequent transitions in health status as well as transfers between home and the hospital for initial treatment and care for complications. Participants will receive the survey once in a 1-year cycle. If a participant contacts the PSC 1 or more years after the initial contact, the participants will receive a second survey. This is because participants' needs may change over time.

Burden Statement: Burden in this context means the time expended by persons to generate, maintain, retain, disclose, or provide the information requested. This includes the time needed to review instructions; to develop, acquire, install, and utilize technology and systems for the purpose of collecting, validating, and verifying information, processing and maintaining information, and disclosing and providing information; to train personnel and to be able to respond to a collection of information; to search data sources; to complete and review the collection of information; and to transmit or otherwise disclose the information. The total annual burden hours estimated for this ICR are summarized in the table below.

The total respondent burden for the customer satisfaction survey is estimated to be 75 hours. HRSA expects a total of 1,000 respondents to complete the NMDP^SM PSC Survey with an estimated 4.5 minutes to complete each survey. ( printed page 61415)

HRSA specifically requests comments on: (1) the necessity and utility of the proposed information collection for the proper performance of the agency's functions; (2) the accuracy of the estimated burden; (3) ways to enhance the quality, utility, and clarity of the information to be collected; and (4) the use of automated collection techniques or other forms of information technology to minimize the burden of the information collection.

91 FR 61413