```

[Federal Register Volume 78, Number 75 (Thursday, April 18, 2013)]
[Notices]
[Pages 23260-23261]
From the Federal Register Online via the Government Printing Office [www.gpo.gov]
[FR Doc No: 2013-08937]

[[Page 23260]]

-----------------------------------------------------------------------

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Agency for Healthcare Research and Quality

Request for Measures and Domains To Use in Development of a 
Standardized Instrument for Use in Public Reporting of the Quality of 
Transition From Child-focused to Adult-focused Care in Young Adults 
With Chronic Conditions

AGENCY: Agency for Healthcare Research and Quality (AHRQ), HHS.

ACTION: Notice of request for measures and domains.

-----------------------------------------------------------------------

SUMMARY: Section 401(a) of the Children's Health Insurance Program 
Reauthorization Act of 2009 (CHIPRA), Public Law 111-3, amended the 
Social Security Act (the Act) to enact section 1139A (42 U.S.C. 1320b-
9a). Section 1139A(b) charged the Department of Health and Human 
Services with improving pediatric health care quality measures. The 
Agency for Healthcare Research and Quality (AHRQ) is requesting the 
submission of instruments or domains (for example, key concepts) 
measuring aspects of the transition from child-focused to adult-focused 
care in young adults with chronic health conditions from all 
researchers, vendors, hospitals, stakeholders, and other interested 
parties. AHRQ is interested in instruments and items through which 
young adults or parent proxies may assess experiences they have with 
the health care system, including the transition from pediatric to 
adult health care. The goal is to develop a standardized instrument for 
use in assessing the quality of transition from child-focused to adult-
focused care in young adults with chronic health conditions.

DATES: Please submit materials May 20, 2013. AHRQ will not respond to 
individual submissions, but will consider all suggestions.

ADDRESSES: Electronic submissions are encouraged, preferably as an 
email with an electronic file in a standard word processing format as 
an email attachment. Submissions may also be in the form of a letter 
to: Maushami DeSoto, M.Sc., Ph.D., MHA. Office of Extramural Research, 
Education and Priority Populations, Agency for Healthcare Research and 
Quality, 540 Gaither Rd., Rockville, MD 20850, Phone: (301) 427-1546, 
Fax: (301) 427-1238, Email: Maushami.Desoto@AHRQ.hhs.gov.
    All submissions must include a written statement from the submitter 
that it will grant AHRQ the necessary rights to use, modify, and adapt 
the submitted instruments, domains, items, and their documentation for 
the development of this survey and its dissemination for AHRQ purposes. 
The statement must also address the instrument's proprietary and/or 
confidentiality status. In accordance with CHIPRA's charge to improve 
pediatric quality care measures, and consistent with AHRQ's mandate to 
disseminate research results, 42 U.S.C. 299c-3, AHRQ purposes include 
public disclosure and dissemination (e.g., on the AHRQ Web site) of 
AHRQ products and the results of AHRQ-sponsored research and 
activities. The written statement must be signed by the copyright 
holder or an individual authorized to act for any holder of copyright 
and/or data rights on each submitted measure or instrument. The 
authority of the signatory to provide such authorization should be 
described in the letter. If the submitted measure or instrument is 
selected for further development AHRQ will request that the submitter 
execute a license granting all of the above-referenced rights to the 
Department of Health and Human Services.

Submission Guidelines

    When submitting instruments, please include, to the extent that it 
is available:

--Name of the instrument;
--Copies of the full instrument, in all languages available;
--Domains or key concepts included in the instrument;
--Instrument reliability (internal consistency, test-retest, etc) and 
validity (content, construct, criterion-related);
--Results of cognitive testing;
--Results of field-testing;
--Current use of the instrument (who is using it, what it is being used 
for, how instrument findings are reported, and by whom the findings are 
used); and,
--Relevant peer-reviewed journal articles or full citations.

    When submitting domains, please include, to the extent available:

--Detailed descriptions of question domain and specific purpose;
--Sample questions, in all languages available; and,
--Relevant peer-reviewed journal articles or full citations.

    For all submissions, please also include:
    A brief cover letter summarizing the information requested above 
for submitted instruments and domains, respectively;
    Complete information about the person submitting the material, 
including:
    (a) Name;
    (b) Title;
    (c) Organization;
    (d) Mailing address;
    (e) Telephone number;
    (f) Email address; and,
    (g) A written statement of intent that the submitter will grant to 
AHRQ the necessary rights to use, modify, and adapt the submitted 
instruments, items, and their supporting documentation for the 
development of the survey and its dissemination for AHRQ purposes, as 
described above.

FOR FURTHER INFORMATION CONTACT: Maushami DeSoto, M.Sc., Ph.D., MHA.

SUPPLEMENTARY INFORMATION: Section 401(a) of the Children's Health 
Insurance Program Reauthorization Act of 2009 (CHIPRA), Public Law 111-
3, amended the Social Security Act (the Act) to enact section 1139A (42 
U.S.C. 1320b-9a). Since the law was passed, the Agency for Healthcare 
Research and Quality (AHRQ) and the Centers for Medicare & Medicaid 
Services (CMS) have been working together to implement selected 
provisions of the legislation related to children's health care 
quality. Section 1139A(b) of the Act charged the Department of Health 
and Human Services with improving pediatric health care quality 
measures. To implement the law, AHRQ and CMS have established the 
CHIPRA Pediatric Quality Measures Program (PQMP), which is designed to 
enhance select pediatric quality measures and develop new measures as 
needed.
    The information sought in this Notice is being collected pursuant 
to the needs of the Children's Hospital Boston Center of Excellence for 
Pediatric Quality Measurement (CEPQM). It is one of the seven CHIPRA 
Pediatric Quality Measures Program (PQMP) Centers of Excellence and has 
been assigned the task of developing measures to assess aspects of the 
transition from child-focused to adult-focused care in young adults 
with chronic health conditions. To thoroughly carry out this task, the 
Center needs to identify and assess instruments or domains which 
already exist on this subject. Such measures will be considered in the 
development of a standardized instrument for voluntary public reporting 
by State Medicaid and CHIP programs and used by providers, consumers, 
other public and private purchasers, and others.
    Existing instruments or domains submitted should capture 
adolescents' experiences with their health care, including the 
transition from pediatric

[[Page 23261]]

to adult health care (for example, preparation readiness or evaluation 
of transfer). The survey development team is looking for items for 
which young adults or their parent proxies are generally the best or 
only judge; for example, the young adult or parent proxy can best say 
if the provider spent sufficient time with them or explained things in 
ways they could understand. Existing instruments that have been tested 
should have a high degree of reliability and validity; and evidence of 
wide use will be helpful.

    Dated: April 8, 2013.
Carolyn M. Clancy,
AHRQ Director.
[FR Doc. 2013-08937 Filed 4-17-13; 8:45 am]
BILLING CODE 4160-90-M
```