Dataset Information

Development of a web-based patient decision aid for initiating disease modifying anti-rheumatic drugs using user-centred design methods.

ABSTRACT:

Background

A main element of patient-centred care, Patient Decision Aids (PtDAs) facilitate shared decision-making (SDM). A recent update of the International Patient Decision Aids Standards (IPDAS) emphasised patient involvement during PtDA development, but omitted a methodology for doing so. This article reports on the value of user-centred design (UCD) methods for the development of a PtDA that aims to support inflammatory arthritis patients in their choice between disease modifying anti-rheumatic drugs (DMARDs).

Methods

The IPDAS development process model in combination with UCD methods were applied. The process was overseen by an eight-member multidisciplinary steering group. Patients and health professionals were iteratively consulted. Qualitative in-depth interviews combined with rapid prototyping were conducted with patients to assess their needs for specific functionality, content and design of the PtDA. Group meetings with health professionals were organized to assess patients' needs and to determine how the PtDA should be integrated into patient pathways. The current literature was reviewed to determine the clinical evidence to include in the PtDA. To evaluate usability among patients, they were observed using the PtDA while thinking aloud and then interviewed.

Results

The combination of patient interviews with rapid prototyping revealed that patients wanted to compare multiple DMARDs both for their clinical aspects and implications for daily life. Health professionals mainly wanted to refer patients to a reliable, easily adjustable source of information about DMARDs. A web-based PtDA was constructed consisting of four parts: 1) general information about SDM, inflammatory arthritis and DMARDs; 2) an application to compare particular DMARDs; 3) value clarification exercises; and 4) a printed summary of patients' notes, preferences, worries and questions that they could bring to discuss with their rheumatologist.

Conclusions

The study demonstrated that UCD methods can be of great value for the development of PtDAs. The early, iterative involvement of patients and health professionals was helpful in developing a novel user-friendly PtDA that allowed patients to choose between DMARDs. The PtDA fits the values of all stakeholders and easily integrates with the patient pathway and daily workflow of health professionals. This collaborative designed PtDA may improve SDM and patient participation in arthritis care.

SUBMITTER: Nota I

PROVIDER: S-EPMC5405550 | biostudies-literature | 2017 Apr

REPOSITORIES: biostudies-literature

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Development of a web-based patient decision aid for initiating disease modifying anti-rheumatic drugs using user-centred design methods.

Nota Ingrid I Drossaert Constance H C CHC Melissant Heleen C HC Taal Erik E Vonkeman Harald E HE Haagsma Cees J CJ van de Laar Mart A F J MAFJ

BMC medical informatics and decision making 20170426 1

<h4>Background</h4>A main element of patient-centred care, Patient Decision Aids (PtDAs) facilitate shared decision-making (SDM). A recent update of the International Patient Decision Aids Standards (IPDAS) emphasised patient involvement during PtDA development, but omitted a methodology for doing so. This article reports on the value of user-centred design (UCD) methods for the development of a PtDA that aims to support inflammatory arthritis patients in their choice between disease modifying a ...[more]

PMID: 28441950

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Project description:BackgroundMobile health tools can support shared decision-making. We developed a computer-based decision aid (DA) to help pregnant women and their partners make informed, value-congruent decisions regarding prenatal screening for trisomy.ObjectiveThis study aims to assess the usability and usefulness of computer-based DA among pregnant women, clinicians, and policy makers.MethodsFor this mixed methods sequential explanatory study, we planned to recruit a convenience sample of 45 pregnant women, 45 clinicians from 3 clinical sites, and 15 policy makers. Eligible women were aged >18 years and >16 weeks pregnant or had recently given birth. Eligible clinicians and policy makers were involved in prenatal care. We asked the participants to navigate a computer-based DA. We asked the women about the usefulness of the DA and their self-confidence in decision-making. We asked all participants about usability, quality, acceptability, satisfaction with the content of the DA, and collected sociodemographic data. We explored participants' reactions to the computer-based DA and solicited suggestions. Our interview guide was based on the Mobile App Rating Scale. We performed descriptive analyses of the quantitative data and thematic deductive and inductive analyses of the qualitative data for each participant category.ResultsA total of 45 pregnant women, 14 clinicians, and 8 policy makers participated. Most pregnant women were aged between 25 and 34 years (34/45, 75%) and White (42/45, 94%). Most clinicians were aged between 35 and 44 years (5/14, 36%) and women (11/14, 79%), and all were White (14/14, 100%); the largest proportion of policy makers was aged between 45 and 54 years (4/8, 50%), women (5/8, 62%), and White (8/8, 100%). The mean usefulness score for preparing for decision-making for women was 80/100 (SD 13), and the mean self-efficacy score was 88/100 (SD 11). The mean usability score was 84/100 (SD 14) for pregnant women, 77/100 (SD 14) for clinicians, and 79/100 (SD 23) for policy makers. The mean global score for quality was 80/100 (SD 9) for pregnant women, 72/100 (SD 12) for clinicians, and 80/100 (SD 9) for policy makers. Regarding acceptability, participants found the amount of information just right (52/66, 79%), balanced (58/66, 88%), useful (38/66, 58%), and sufficient (50/66, 76%). The mean satisfaction score with the content was 84/100 (SD 13) for pregnant women, 73/100 (SD 16) for clinicians, and 73/100 (SD 20) for policy makers. Participants thought the DA could be more engaging (eg, more customizable) and suggested strategies for implementation, such as incorporating it into clinical guidelines.ConclusionsPregnant women, clinicians, and policy makers found the DA usable and useful. The next steps are to incorporate user suggestions for improving engagement and implementing the computer-based DA in clinical practice.

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Project description:BackgroundMild cognitive impairment (MCI) is often considered a transitional state between normal and pathologic (eg, dementia) cognitive aging. Although its prognosis varies largely, the diagnosis carries the risk of causing uncertainty and overtreatment of older adults with MCI who may never progress to dementia. Decision aids help people become better informed and more involved in decision making by providing evidence-based information about options and possible outcomes and by assisting them in clarifying their personal values in relation to the decision to be made.ObjectiveThis study aimed to incorporate features that best support values clarification and adjust the level of detail of a web-based decision aid for individuals with MCI.MethodsWe conducted a rapid review to identify options to maintain or improve cognitive functions in individuals with MCI. The evidence was structured into a novel web-based decision aid designed in collaboration with digital specialists and graphic designers. Qualitative and user-centered evaluations were used to draw on users' knowledge, clarify values, and inform potential adoption in routine clinical practice. We invited clinicians, older adults with MCI, and their caregivers to evaluate the decision aid in 6 consecutive rounds, with new participants in each round. Quantitative data were collected using the Values Clarity and Informed subscales of the Decisional Conflict Scale, the System Usability Scale, the Ottawa Acceptability questionnaire, and a 5-point satisfaction rating scale. We verified their comprehension using a teach-back method and recorded usability issues. We recorded the audio and computer screen during the session. An inductive thematic qualitative analysis approach was used to identify and describe the issues that arose. After each round, an expert panel met to prioritize and find solutions to mitigate the issues. An integrated analysis was conducted to confirm our choices.ResultsA total of 7 clinicians (social workers, nurses, family physicians, psychologists) and 12 older (≥60 years) community-dwelling individuals with MCI, half of them women, with education levels going from none to university diploma, were recruited and completed testing. The thematic analysis revealed 3 major issues. First, the user should be guided through the decision-making process by tailoring the presentation of options to users' priorities using the values clarification exercise. Second, its content should be simple, but not simplistic, notably by using information layering, plain language, and pictograms. Third, the interface should be intuitive and user friendly, utilize pop-up windows and information tips, avoid drop-down menus, and limit the need to scroll down. The quantitative assessments corroborated the qualitative findings.ConclusionsThis project resulted in a promising web-based decision aid that can support decision making for MCI intervention, based on the personal values and preferences of the users. Further ongoing research will allow its implementation to be tested in clinical settings.

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Dataset Information

Development of a web-based patient decision aid for initiating disease modifying anti-rheumatic drugs using user-centred design methods.

Background

Methods

Results

Conclusions

Publications

Development of a web-based patient decision aid for initiating disease modifying anti-rheumatic drugs using user-centred design methods.

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