Darren A. DeWalt

One of the PROMIS (Patient-Reported Outcome Measurement Information System) network's primary goals is the development of a comprehensive item bank for patient-reported outcomes of chronic diseases. For its first set of item banks, PROMIS chose to focus on pain, fatigue, emotional distress, physical function, and social function. An essential step for the development of an item pool is the identification, evaluation, and revision of extant questionnaire items for the core item pool. In this work, we also describe the systematic process wherein items are classified for subsequent statistical processing by the PROMIS investigators. Six phases of item development are documented: identification of extant items, item classification and selection, item review and revision, focus group input on domain coverage, cognitive interviews with individual items, and final revision before field testing. Identification of items refers to the systematic search for existing items in currently available scales. Expert item review and revision was conducted by trained professionals who reviewed the wording of each item and revised as appropriate for conventions adopted by the PROMIS network. Focus groups were used to confirm domain definitions and to identify new areas of item development for future PROMIS item banks. Cognitive interviews were used to examine individual items. Items successfully screened through this process were sent to field testing and will be subjected to innovative scale construction procedures.

OBJECTIVES: To review the relationship between parent and child literacy and child health outcomes and interventions designed to improve child health outcomes for children or parents with low literacy skills. METHODS: We searched Medline and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) for articles published from 1980 through 2008 and included studies that reported original data, measured literacy and >or=1 health outcome, and assessed the relationship between literacy and health outcomes. Health outcomes included health knowledge, health behaviors, use of health care resources, intermediate markers of disease status, and measures of morbidity. Two abstractors reviewed each study for inclusion. Included studies were abstracted into evidence tables and were assessed by using an 11-item quality scale. RESULTS: We reviewed 4182 new titles and abstracts published since 2003. Fifty-eight articles were retained for full review, and 13 met the inclusion criteria. Eleven articles from the systematic review from 1980 to 2003 met the inclusion criteria, giving us a total of 24 articles. Children with low literacy generally had worse health behaviors. Parents with low literacy had less health knowledge and had behaviors that were less advantageous for their children's health compared with parents with higher literacy. Children whose parents had low literacy often had worse health outcomes, but we found mixed results for the relationship of literacy to the use of health care services. Interventions found that improving written materials can increase health knowledge, and combining good written materials with brief counseling can improve behaviors including adherence. The average quality of the studies was fair to good. CONCLUSIONS: Child and parent literacy seems associated with important health outcomes. Future research can help us understand under what circumstances this relationship is causal, how literacy and health outcomes are related in noncausal pathways, the relative importance of parent and child literacy, and what interventions effectively reduce health literacy-related disparities.