Effective Information Provision About the Side Effects of Treatment for Malignant Lymphoma: Protocol of a Randomized Controlled Trial Using Video Vignettes (Preprint)

BACKGROUND Informing patients with cancer about the possible implications of prospective treatment is a crucial yet challenging task. Unfortunately, patients’ recall of medical information is generally poor and their information needs are not met. Effective information giving entails that oncologists help patients understand and recall the implications of their treatment, meanwhile fostering a trusting physician-patient relationship. Communication strategies that are often suggested to be effective are structuring and tailoring (cognition-oriented) but also are oncologists’ expressions of caring or empathy (affect-oriented). OBJECTIVE The aim of this study is to provide evidence concerning the pathways linking physician communication to (improved) consultation outcomes for patients. More specifically, the aim is to determine the effects of information structuring and information tailoring, combined with physician caring, on information recall, satisfaction with information, and trust in the physician (primary objective) and on symptom distress (secondary objective). METHODS A randomized controlled trial, systematically testing the effects of information structuring and information tailoring, each combined with caring, in 2 video-vignette experiments (2×2 and 2×2×2 design). Using an online survey platform, participants will be randomly allocated (blinded) to 1 of 12 conditions in which they are asked to view a video vignette (intervention) in which an oncologist discusses a treatment plan for malignant lymphoma with a patient. The independent variables of interest are systematically varied across conditions. The outcome measures are assessed in a survey, using validated instruments. Study participants are (former) patients with cancer and their relatives recruited via online panels and patient organizations. This protocol discusses the trial design, including the video-vignette design, intervention pretesting, and a pilot study. RESULTS Data collection has now been completed, and preliminary analyses will be available in Spring 2019. A total of 470 participants completed the first part of the survey and were randomized to receive the intervention. CONCLUSIONS The results of the proposed trial will provide evidence concerning the pathways linking physician information, giving skills to (improved) consultation outcomes for patients. CLINICALTRIAL Netherlands Trial Register NTR6153; https://www.trialregister.nl/trial/6022 (Archived by Webcite at http://www.webcitation.org/76xVV9xC8). INTERNATIONAL REGISTERED REPOR DERR1-10.2196/12453

Comprehensive overview of computer-based health information tailoring: a scoping review protocol

IntroductionTailoring health information to the needs of individuals has become an important part of modern health communications. Tailoring has been addressed by researchers from different disciplines leading to the emergence of a wide range of approaches, making the newcomers confused. In order to address this, a comprehensive overview of the field with the indications of research gaps, tendencies and trends will be helpful. As a result, a systematic protocol was outlined to conduct a scoping review within the field of computer-based health information tailoring.Methods and analysisThis protocol is based on the York’s five-stage framework outlined by Arksey and O’Malley. A field-specific structure was defined as a basis for undertaking each stage. The structure comprised three main aspects:system design,information communicationandevaluation. Five leading databases were searched: PubMed, Scopus, Science Direct, EBSCO and IEEE and a broad search strategy was used with less strict inclusion criteria to cover the breadth of evidence. Theoretical frameworks were used to develop the data extraction form and a rigorous approach was introduced to identify the categories from data. Several explanatory-descriptive methods were considered to analyse the data, from which some were proposed to be employed for the first time in scoping studies.Ethics and disseminationThis study investigates the breadth and depth of existing literature on computer-tailoring and as a secondary analysis, does not require ethics approval. We anticipate that the results will identify research gaps and novel ideas for future studies and provide direction to combine methods from different disciplines. The research findings will be submitted for publication to relevant peer-reviewed journals and conferences targeting health promotion and patient education.

Aspects of User Profiling in Computer-based Health Information Tailoring Systems: A Narrative Review

Introduction: The recent shift from the conventional physician-centered approach to the more polpular approach that with the focuse on patient as the center of healthcare, emphaizes on the critical role of informing and educating patients. Studies shown that tailoring health information to the needs of individuals is more effective than generic materials. Recent improvements in the fields of computer science and Information Communication Technology have made it possible to computerize such an adaptation process. Information tailoring systems use an internal representation of user conditions and needs, which is referred to as a “user model” or “user profile.” A user profile represents the system’s beliefs about the user. Hence, it may simply contain demographic information or sophisticated factors such as the state of the disease, user’s attitude, interest, preference, and knowledge. The user profile is known as the basis for designing other system components and has a great impact on the acceptance of the system by the user and the quality of the tailored information. To the best of our knowledge, no studies have been conducted so far to analyze and classify user profile aspects and characteristics. In this systematic narrative review, we aim to provide aspects of profiling in health information tailoring systems based on literature from different disciplines. Methods: comprehensive searches of the PubMed and Scopus databases have been conducted. We searched among English papers with publishing dates ranging from 1990 onward; since that is when computer-tailoring first appeared within the literature. we have devised a list of terms pertinent to the main concepts of computer-tailoring and used a qualitative–interpretive approach for data extraction. Results: Analyzing the data from 32 eligible studies, we found three aspects in designing a tailoring user profile. Each aspect with its characteristics are provided below: 1-Identifying common factors used in profiles and classifying these factors thematically, which has three attributes: The number of factors used to design the user profile and their diversity (e.g. demographic,clinical,behavioral information, learning style and so forth) The approaches used to Identify effective factors in tailoring (e.g. evidence-based, avalible data sources) Attributes of the factors (e.g. long-term/short-term, static/dynamic) 2-Data collection tools and methods, which has two attributes: Data collection methods (e.g. explicit, implicit, mixed) Assessment tool (e.g. questionnaire, patient record) 3-Data interpretation that demonstrates to what extent the collected data needs to be analyzed to use in tailoring. we have also identified two main approaches regarding tailoring: public health and computational tailoring. Public Health communication researcher has relied greatly on health behavior models but generally has used simpler technological approaches, whereas computer science employed more advanced technological approaches but integrated behavior theory to a lesser extent. These two approaches complete each other to provide the necessary requirements for designing a practical tailoring system in future studies. Conclusion: In this study we investigate different aspects of designing a user profile in health information tailoring systems. The proposed model is a valuable guide for new researchers in the field. Results from this review provide a comprehensive overview of the field and will help researchers to combine effective methods from across the disciplines in future research.

Supporting Stroke Patients’ Autonomy During Rehabilitation

In a qualitative study, 22 stroke patients undergoing rehabilitation in three nursing homes were interviewed about constraints on and improvements in their autonomy and about approaches of health professionals regarding autonomy. The data were analysed using grounded theory, with a particular focus on the process of regaining autonomy. An approach by the health professionals that was responsive to changes in the patients’ autonomy was found to be helpful for restoration of their autonomy. Two patterns in health professionals’ approach appeared to be facilitatory: (1) from full support on admission through moderate support and supervision, to reduced supervision at discharge; and (2) from paternalism on admission through partial paternalism (regarding treatment) to shared decision making at discharge. The approach experienced by the patients did not always match their desires regarding their autonomy. Support and supervision were reduced over time, but paternalism was often continued too long. Additionally, the patients experienced a lack of information. Tailoring interventions to patients’ progress in autonomy would stimulate their active participation in rehabilitation and in decision making, and would improve patients’ preparation for autonomous living after discharge.