Development of the Japanese version of an information aid to provide accurate information on prognosis to patients with advanced non-small-cell lung cancer receiving chemotherapy: a pilot study.

BACKGROUND: Without explicit prognostic information, patients may overestimate their life expectancy and make poor choices at the end of life. We sought to design the Japanese version of an information aid (IA) to provide accurate information on prognosis to patients with advanced non-small-cell lung cancer (NSCLC) and to assess the effects of the IA on hope, psychosocial status, and perception of curability. METHODS: We developed the Japanese version of an IA, which provided information on survival and cure rates as well as numerical survival estimates for patients with metastatic NSCLC receiving first-line chemotherapy. We then assessed the pre- and post-intervention effects of the IA on hope, anxiety, and perception of curability and treatment benefits. RESULTS: A total of 20 (95%) of 21 patients (65% male; median age, 72 years) completed the IA pilot test. Based on the results, scores on the Distress and Impact Thermometer screening tool for adjustment disorders and major depression tended to decrease (from 4.5 to 2.5; P = 0.204), whereas no significant changes were seen in scores for anxiety on the Japanese version of the Support Team Assessment Schedule or in scores on the Hearth Hope Index (from 41.9 to 41.5; p = 0.204). The majority of the patients (16/20, 80%) had high expectations regarding the curative effects of chemotherapy. CONCLUSION: The Japanese version of the IA appeared to help patients with NSCLC maintain hope, and did not increase their anxiety when they were given explicit prognostic information; however, the IA did not appear to help such patients understand the goal of chemotherapy. Further research is needed to test the findings in a larger sample and measure the outcomes of explicit prognostic information on hope, psychological status, and perception of curability.

Implementation of the 'Sapere Migliora' information aid for newly diagnosed people with multiple sclerosis in routine clinical practice: a late-phase controlled trial.

BACKGROUND: The SIMS-Trial showed that the 'Sapere Migliora' information aid (IA) for newly diagnosed people with multiple sclerosis (PwMS) effectively improved patient knowledge and satisfaction with care. OBJECTIVES: The objectives of this paper are to assess the effectiveness of the IA in clinical practice and to compare the whole IA with the take-home booklet/website component alone. METHODS: After updating the IA and replacing the CD with a website, a prospective, open-label non-randomised controlled trial compared the whole IA (group A, five SIMS-Trial centres) to take-home (group B, 16 centres). One month after the intervention, participants completed the MS Knowledge Questionnaire (MSKQ), care satisfaction questionnaire (COSM-R) (primary study outcomes), Hospital and Anxiety Depression Scale, and ad hoc questionnaire appraising the IA. RESULTS: We enrolled 159 newly diagnosed PwMS (May 2012-March 2013). Drop-outs were four of 77 (5%, group A) and 11/82 (13%, group B). Primary endpoint (highest tertile both for MSKQ and COSM-R section 2 scores) was achieved by 38/77 (49%) group A and 33/82 (40%) group B (p = 0.25). Attainment of secondary outcomes was also similar between groups. CONCLUSIONS: This study shows that the entire IA is not superior to the booklet/website alone, and that both are comparable in efficacy to the intervention arm of the SIMS-Trial. TRIAL REGISTRATION NUMBER: ISRCTN78940214.

Assessing the role of interactivity: An evaluation of information aids to support the enrollment of precision medicine research programs.

OBJECTIVE: Recruiting diverse participants for precision medicine (PM) research programs should overcome low literacy and varied expectations. Information aids (IA) can address these barriers through patient-centered education. The purpose of this study was to evaluate the effectiveness of three information aids (IA) on participating in PM. METHODS: An experiment with 290 U.S. participants recruited from Mturk was conducted to compare the effects of three IAs on the outcomes related to participation. Three conditions included an interactive IA (i.e., providing PM-related information responding to each participant's questions), a static IA (i.e., providing uniform PM-related information), and a control condition (i.e., providing non-interactive information irrelevant to PM). RESULTS: Both interactive and non-interactive IAs increased attitudes and information-seeking intentions, but not knowledge or participation intention. Perceived control and responsiveness mediated the effects of interactive IA. CONCLUSION: Both interactive and static IAs supported enrollment efforts for PM through fostering attitudes and follow-up information-seeking. Increased perceived control and responsiveness are key to the effects of interactive IA. PRACTICE IMPLICATIONS: IAs provide effective education and enrollment support for PM. Interactive IA can respond to individuals' inquiries and control the learning process.

Untangling interactivity's effects: The role of cognitive absorption, perceived visual informativeness, and cancer information overload.

OBJECTIVE: Learning about clinical trials is as stressful and challenging for cancer patients as it is for the clinical staff who provide education to patients. Information aids (IAs) can support both discussions and patients' decision-making, especially when IAs offer interactive features that provide information based on individuals' needs and experiences. However, it is not clear which factors contribute to interactive IAs' effectiveness. METHODS: An experiment with cancer patients and survivors (n = 313) compared the effects of two IAs about clinical trial participation: one with modality (i.e. website/technological) interactivity only and one with both modality and message interactivity (i.e. provides information contingent on individual users' information needs). RESULTS: The IA with both modality and message interactivity features elicited the higher perceived visual informativeness (PVI) and cognitive absorption (CA) scores. The model supports the moderating role of PVI and cancer information overload (CIO), and the mediating role of CA. CONCLUSION: The IA with both modality and message interactivity better supported individuals' decision-making and improved attitudes and knowledge scores. CIO was experienced more by participants using the modality interactivity-only IA. PRACTICE IMPLICATIONS: Message interactivity may simplify individuals' cognitive processes. IAs about clinical trial participation should include both message and modality interactivity.