""""""""Health and Literacy in Child and Adult Assessment,"""""""" a proposal to become a PROMIS Primary Research Site by The University of North Carolina at Chapel Hill and its partners, addresses 3 important problems in using computer adaptive testing (CAT) to measure patient-reported chronic diseases outcomes (PROs) in clinical research: (1) PRO assessment in children 8-17 years of age (Independent Project), (2) Development and testing items in low literacy populations in English and Spanish, and (3) Rigorous assessment of variables (e.g., many aspects of functional capacity or adherence to treatment) most appropriately conceptualized as dyadic (e.g., wife-husband, parent-child) rather than individual. Our Independent Project will (1) use IRT to evaluate item parameters for the PedsQLTM4.0 in 8,000 children in 4 core domains (physical, emotional, social, school/cognitive) and an asthma-specific domain, taking this widely used instrument as a starting point for a pediatric item bank, (2) develop new items and collect data in 1,060 children in North Carolina and Texas, using IRT to estimate item parameters, (3) develop and pilot test a CAT tool and use it to survey 375 children in NC and Texas. Our long-term objective is to develop CAT to assess PROs in clinical research across a wide range of chronic childhood diseases. However, this initial data collection will be in children with asthma and in healthy children. Our Network Project on literacy proposes developing a methodology for creating and testing PRO items in English and Spanish that function consistently across languages and literacy levels. We will provide leadership for (1) assessing patient literacy, (2) testing item comprehension in low literacy populations, (3) devising a strategy to develop new items that can be understood by people with low literacy, (4) testing all items in diverse samples of English- or Spanish-speaking people to evaluate differential item functioning by language or literacy in our large ethnically diverse patient population representing all literacy levels. Our Network Project on dyadic assessment proposes (1) specifying health variables that are largely interpersonal, (2) identifying existing measures of these and assessing their validity, (3) modifying measures that fail to assess interpersonal processes in a way that captures their interpersonal nature, (4) assisting the Network in collecting data on the modified measures and assessing their validity.

Agency
National Institute of Health (NIH)
Institute
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Type
Research Project--Cooperative Agreements (U01)
Project #
5U01AR052181-02
Application #
6954191
Study Section
Special Emphasis Panel (ZRG1-RPHB-F (51))
Program Officer
Serrate-Sztein, Susana
Project Start
2004-09-28
Project End
2009-07-31
Budget Start
2005-08-01
Budget End
2006-07-31
Support Year
2
Fiscal Year
2005
Total Cost
$744,924
Indirect Cost
Name
University of North Carolina Chapel Hill
Department
Public Health & Prev Medicine
Type
Schools of Public Health
DUNS #
608195277
City
Chapel Hill
State
NC
Country
United States
Zip Code
27599
Macpherson, Catherine F; Wang, Jichuan; DeWalt, Darren A et al. (2018) Comparison of Legacy Fatigue Measures With the PROMIS Pediatric Fatigue Short Form?. Oncol Nurs Forum 45:106-114
Reeve, Bryce B; Edwards, Lloyd J; Jaeger, Byron C et al. (2018) Assessing responsiveness over time of the PROMIS® pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease. Qual Life Res 27:249-257
Cunningham, Natoshia R; Kashikar-Zuck, Susmita; Mara, Constance et al. (2017) Development and validation of the self-reported PROMIS pediatric pain behavior item bank and short form scale. Pain 158:1323-1331
Selewski, David T; Thompson, Aliza; Kovacs, Sarrit et al. (2017) Patient-Reported Outcomes in Glomerular Disease. Clin J Am Soc Nephrol 12:140-148
Hedrick, Traci L; Harrigan, Amy M; Thiele, Robert H et al. (2017) A pilot study of patient-centered outcome assessment using PROMIS for patients undergoing colorectal surgery. Support Care Cancer 25:3103-3112
Brandon, Timothy G; Becker, Brandon D; Bevans, Katherine B et al. (2017) Patient-Reported Outcomes Measurement Information System Tools for Collecting Patient-Reported Outcomes in Children With Juvenile Arthritis. Arthritis Care Res (Hoboken) 69:393-402
Howell, Carrie R; Thompson, Lindsay A; Gross, Heather E et al. (2017) Association of consistently suboptimal quality of life with consistently poor asthma control in children with asthma. Ann Allergy Asthma Immunol 119:562-564.e1
Stephens, Helen E; Joyce, Nanette C; Oskarsson, Björn (2017) National Study of Muscle Cramps in ALS in the USA. Amyotroph Lateral Scler Frontotemporal Degener 18:32-36
Fischer, H Felix; Wahl, Inka; Nolte, Sandra et al. (2017) Language-related differential item functioning between English and German PROMIS Depression items is negligible. Int J Methods Psychiatr Res 26:
Li, Z; Leite, W L; Thompson, L A et al. (2017) Determinants of longitudinal health-related quality-of-life change in children with asthma from low-income families: a report from the PROMIS®Pediatric Asthma Study. Clin Exp Allergy 47:383-394

Showing the most recent 10 out of 124 publications