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BackgroundDecision aids (DAs) may be used to facilitate an autonomous, informed decision to cease smoking and promote the uptake of evidence-based cessation assistance (ie, behavioral support, nicotine replacement therapy, or prescription medication). However, knowledge is lacking regarding their effective elements and (cost-)effectiveness. ObjectiveWe describe the development process of an online DA (called “VISOR”) that helps smokers to choose evidence-based cessation assistance. Additionally, we provide a description of the protocol of an ongoing randomized controlled trial in which the DA containing an explicit value clarification method (VCM) and tailored advice is compared with a DA without an explicit VCM and tailored advice. MethodsThe development of “VISOR” was based on the International Patient Decision Aid Standards guidelines. Viewpoints of end users (collected through 20 interviews with smokers) and clinical and scientific experts (assessed using 2 Delphi studies with 24 scientists and 38 clinicians) were assessed regarding cessation tool decision making and preferred DA content. These findings, together with principles from the Self-Determination Theory, served as input for the development of the online DA. A first DA prototype was alpha-tested in September 2019 and beta-tested for usability in December 2019; feedback was incorporated and resulted in a final version. The final DA contains (1) an information section, (2) an optional knowledge quiz, (3) a brief smoking assessment, (4) intuitive decision, (5) intermediate advice, (6) an explicit VCM, (7) tailored advice, and (8) access information. A randomized controlled trial is currently being conducted to assess the DA’s (cost-)effectiveness compared to a DA that does not include the explicit VCM and the tailored advice; specifically, the DA’s effect on smoking abstinence, uptake of evidence-based cessation assistance, smoking abstinence mediated through uptake of evidence-based cessation assistance, and decisional conflict are investigated. Participants are randomly allocated to receive access to 1 of the 2 DAs and are asked to complete 5 questionnaires (including the baseline questionnaire) over a period of 12 months. To evaluate the effects of the DA on the outcome measures, logistic and linear regression analyses as well as mediation analyses will be carried out. An economic evaluation will be performed to assess the cost-effectiveness. ResultsData regarding the effect of the VISOR DA are currently being collected, and data collection is expected to be concluded in 2021. ConclusionsBy making use of an iterative process that integrated different stakeholders’ perspectives (including end users), we were able to systematically design an evidence-based DA. The study will contribute to the current knowledge regarding smoking cessation DA application, the added value of explicit VCMs, and the effect of behavioral and informed decision-making outcomes. Trial RegistrationNetherlands Trial Register NL8270; https://www.trialregister.nl/trial/8270 International Registered Report Identifier (IRRID)DERR1-10.2196/21772

There is a growing recognition that research and implementation projects should be carried out "with" or "by" young people with chronic conditions, instead of "about" or "for" them. The current study aimed to explore how young people with chronic conditions experience their involvement in a participatory youth panel. This panel was a structural part of a three-year program addressing the social position of young people with chronic conditions in the Netherlands. It hosted 45 research and implementation projects to improve the social position of young people with chronic conditions in five areas: care, school, work, sport, and personal strength. Output from these projects were, for example, a tool to improve self-management, an evidence-based method to facilitate the transition to adult-care, and a digital platform about performing physical activity with a disability. During the program, six focus groups consisting of four to eleven panel members were conducted. The transcripts were analysed using the principles of thematic analysis. The results show panel members took part in multiple projects and activities, such as assessing project applications, evaluating the progress of projects and organizing a political lobby. They were enthusiastic about their role in the panel. The structural nature of the panel enabled them to achieve personal growth and professionalization of their participation. Consequently, panel members experienced an increasing impact on the program and separate projects, and on national politics. Therefore, it is suggested that a structural form of participation, such as a participatory panel, is suitable to facilitate meaningful participation of young people with chronic conditions.

Background Multimorbidity is a growing problem. The number and complexity of (non-)pharmaceutical treatments create a great burden for patients. Treatment burden refers to the perception of the weight of these treatments, and is associated with multimorbidity. Measurement of treatment burden is of great value for optimizing treatment and health-related outcomes. Objective We aim to translate and validate the Multimorbidity Treatment Burden Questionnaire (MTBQ) for use in the Dutch population with multimorbidity and explore the level of treatment burden. Methods Translating the MTBQ into Dutch included forward–backward translation, piloting, and cognitive interviewing (n = 8). Psychometric properties of the questionnaire were assessed in a cross-sectional study of patients with multimorbidity recruited from a panel in the Netherlands (n = 959). We examined item properties, dimensionality, internal consistency reliability, and construct validity. The level of treatment burden in the population was assessed. Results The mean age among 959 participants with multimorbidity was 69.9 (17–96) years. Median global NL-MTBQ score was 3.85 (interquartile range 0–9.62), representing low treatment burden. Significant floor effects were found for all 13 items of the instrument. Factor analysis supported a single-factor structure. The NL-MTBQ had high internal consistency (α = 0.845), and provided good evidence on the construct validity of the scale. Conclusion The Dutch version of the 13-item MTBQ is a single-structured, valid, and compact patient-reported outcome measure to assess treatment burden in primary care patients with multimorbidity. It could identify patients experiencing high treatment burden, with great potential to enhance shared decision-making and offer additional support. [ABSTRACT FROM AUTHOR]

Objectives: Most currently available medication self-management support tools do not meet the needs of patients with limited health literacy. Recently, tools that are better tailored to the needs of patients with limited health literacy have been developed. This study aimed to assess the usability of an animated diabetes information tool by patients with diabetes with limited and adequate health literacy levels. Methods: Participants with limited and adequate health literacy levels were selected based on three health literacy questions in a screening interview, and asked to use the tool three times a week, after which individual semistructured interviews were conducted. The interview topics were based on the technology acceptance model (i.e. perceived ease of use, perceived usefulness, and intention to use). Twenty-five patients with diabetes were included in the study. Key findings: All participants perceived the tool as easy to use due to a clear overview of topics and only personalized information being provided. Those with limited health literacy indicated that they had learned from the tool and had the intention to continue using it in the future. These participants also expressed the need for the tool to be more actively offered by healthcare professionals, while participants with adequate health literacy expressed the need for more in-depth information. Conclusion: The tailored self-management support tool was perceived as usable by all participants. To better serve them, the tool could be further improved by addressing the additional needs of people with limited as well as adequate health literacy. [ABSTRACT FROM AUTHOR]

Objectives We studied discordance between health literacy of people with rheumatic and musculoskeletal diseases (RMDs) and assessment of health literacy by their treating health professionals, and explored whether discordance is associated with the patients' socioeconomic background. Methods Patients with RA, spondyloarthritis (SpA) or gout from three Dutch outpatient rheumatology clinics completed the nine-domain Health Literacy Questionnaire (HLQ). Treating health professionals assessed their patients on each HLQ domain. Discordance per domain was defined as a ≥2-point difference on a 0–10 scale (except if both scores were below three or above seven), leading to three categories: 'negative discordance' (i.e. professional scored lower), 'probably the same' or 'positive discordance' (i.e. professional scored higher). We used multivariable multilevel multinomial regression models with patients clustered by health professionals to test associations with socioeconomic factors (age, gender, education level, migration background, employment, disability for work, living alone). Results We observed considerable discordance (21–40% of patients) across HLQ domains. Most discordance occurred for 'Critically appraising information' (40.5%, domain 5). Comparatively, positive discordance occurred more frequently. Negative discordance was more frequently and strongly associated with socioeconomic factors, specifically lower education level and non-Western migration background (for five HLQ domains). Associations between socioeconomic factors and positive discordance were less consistent. Conclusion Frequent discordance between patients' scores and professionals' estimations indicates there may be hidden challenges in communication and care, which differ between socioeconomic groups. Successfully addressing patients' health literacy needs cannot solely depend on health professionals' estimations but will require measurement and dialogue. Video Abstract A video abstract of this article can be found at https://www.youtube.com/watch?v=ggnB1rATdQ4. [ABSTRACT FROM AUTHOR]