How Do Subjective Health Literacy Measures Work in Young Adults? Specifying "Online" or "Paper-Based" Forms Impacts Results.

Purpose. There is no gold-standard health literacy measure. The Single Item Literacy Screener (SILS) and Subjective Literacy Screener (SLS) ask people to self-report ability to understand health information. They were developed in older adults, before common use of electronic health information. This study explored whether the SILS and SLS related to objective literacy, numeracy, and comprehension among young adults, and whether specifying "online" or "paper-based" wording affected these relationships. Methods. Eligible individuals (18-35 years of age, English-speaking, US residents) from an online survey company were randomized to 1) original measures; 2) measures adding "paper-based" to describe health information/forms; or 3) measures adding "online" to describe health information/forms. We examined how each measure related to e-Health Literacy (eHEALS), subjective numeracy (SNS), objective numeracy (ONS), and comprehension of a short passage. Results. A total of 848/1342 respondents correctly answered attention-checks and were analyzed. The validated SILS related to comprehension (P = 0.003), eHEALS (P = 0.04), and ONS (P < 0.001) but not SNS (P = 0.44). When adding "paper-based," SILS related to eHEALS (P < 0.001) and ONS (P = 0.003) but did not relate to comprehension (P = 0.25) or SNS (P = 0.35). When adding "online," SILS related to comprehension (P < 0.001), eHEALS (P < 0.001), ONS (P = 0.005), and SNS (P = 0.03). The validated SLS related to comprehension (P < 0.001), eHEALS (P < 0.001), ONS (P < 0.001), and SNS (P < 0.001). When adding "paper-based," the SLS only related to eHEALS (P = <0.001) and comprehension (P = 0.03) but did not relate to ONS (P = 0.13) or SNS (P = 0.33). When adding "online," the SLS related to comprehension (P < 0.001), eHEALS (P < 0.001), and SNS (P = 0.03) but not ONS (P = 0.06). Conclusions. Young adults might interpret subjective health literacy measures differently when prompted to think about electronic or paper-based information. Researchers should consider clearer instructions or modified wording when using these measures in this population.

A Randomized Controlled Trial Evaluating the BREASTChoice Tool for Personalized Decision Support About Breast Reconstruction After Mastectomy.

OBJECTIVE: To evaluate a web-based breast reconstruction decision aid, BREASTChoice. SUMMARY AND BACKGROUND DATA: Although postmastectomy breast reconstruction can restore quality of life and body image, its morbidity remains substantial. Many patients lack adequate knowledge to make informed choices. Decisions are often discordant with patients' preferences. METHODS: Adult women with stages 0-III breast cancer considering postmastectomy breast reconstruction with no previous reconstruction were randomized to BREASTChoice or enhanced usual care (EUC). RESULTS: Three hundred seventy-six patients were screened; 120 of 172 (69.8%) eligible patients enrolled. Mean age = 50.7 years (range 25-77). Most were Non-Hispanic White (86.3%) and had a college degree (64.3%). Controlling for health literacy and provider seen, BREASTChoice users had higher knowledge than those in EUC (84.6% vs. 58.2% questions correct; P < 0.001). Those using BREASTChoice were more likely to know that reconstruction typically requires more than 1 surgery, delayed reconstruction lowers one's risk, and implants may need replacement over time (all ps < 0.002). BREASTChoice compared to EUC participants also felt more confident understanding reconstruction information (P = 0.009). There were no differences between groups in decisional conflict, decision process quality, shared decision-making, quality of life, or preferences (all ps > 0.05). There were no differences in consultation length between BREASTChoice and EUC groups (mean = 29.7 vs. 30.0 minutes; P > 0.05). BREASTChoice had high usability (mean score = 6.3/7). Participants completed BREASTChoice in about 27 minutes. CONCLUSIONS: BREASTChoice can improve breast reconstruction decision quality by improving patients' knowledge and providing them with personalized risk estimates. More research is needed to facilitate point-of-care decision support and examine BREASTChoice's impact on patients' decisions over time.

The importance of shared decision-making in the neonatal intensive care unit.

OBJECTIVE: Neonatal intensive care unit (NICU) admissions are common and rising. Parents with infants in the NICU face difficult decisions about their infants' care. Few studies have investigated parents' engagement in NICU decisions and its effects on decision regret. STUDY DESIGN: We surveyed parents of children who had a NICU stay in the past 3 years. We explored whether sociodemographic characteristics affected preferred decision involvement, shared decision-making with NICU clinicians, or decision regret. Multivariable linear regression analyses examined the relationship between shared decision-making and decision regret. RESULTS: Most parents preferred an active (212/405, 52.3%) or shared (139/405, 34.3%) approach to decision-making. No sociodemographic characteristics related to preferred decision involvement or shared decision-making (p's > 0.05). In multivariable analyses, shared decision-making, education and health literacy related to less decision regret (p's < 0.05). CONCLUSIONS: These data suggest the importance of shared decision-making during NICU stays. Studies should identify ways to support parents through NICU decision-making.

Importance of Shared Decision-Making for Vulnerable Populations: Examples from Postmastectomy Breast Reconstruction.

Shared decision-making (SDM) is a process through which patients and providers collaborate to select a treatment option that aligns with patients' preferences and clinical context. SDM can improve patients' decision quality and satisfaction. However, vulnerable populations face barriers to participation in SDM, which exacerbates disparities in decision quality. This perspective article discusses SDM with vulnerable patients, using examples from patients who made decisions about postmastectomy breast reconstruction. We offer several strategies for clinical practice, medical education, and research to ensure that movements to engage patients in SDM do not exclude already marginalized groups.