Assessing the Quality of Decision Support Technologies Using the International Patient Decision Aid Standards instrument (IPDASi)

Elwyn, Glyn; O’Connor, Annette M.; Bennett, Carol; Newcombe, Robert G.; Politi, Mary C.; Durand, Marie-Anne; Drake, Elizabeth; Joseph‐Williams, Natalie; Khangura, Sara D.; Saarimaki, Anton; Sivell, Stephanie; Stiel, Mareike; Bernstein, Steven J.; Col, Nananda F.; Coulter, Angela; Eden, Karen; Härter, Martin; Rovner, Margaret Holmes; Moumjid, Nora; Stacey, Dawn; Thomson, Richard; Whelan, Timothy J.; Weijden, Trudy van der; Edwards, Adrian

doi:10.1371/journal.pone.0004705

Cited by 398 publications

(396 citation statements)

References 19 publications

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“…8,9 It provides information on chromosomal abnormalities, prenatal screening by FCT, and the prenatal tests offered in case of a high risk for fetal chromosomal abnormalities, that is, NIPT or invasive diagnostic testing through chorionic villus sampling or amniocentesis. Infographics, 2D and 3D animations were specifically designed for this decision aid to explain and visualise the prenatal testing trajectory, the concept of risk, the difference between a low-risk and high-risk result, and the key characteristics and test procedures of prenatal tests available.…”

Section: Methodsmentioning

confidence: 99%

The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial

et al. 2016

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Early in pregnancy women and their partners face the complex decision on whether or not to participate in prenatal testing for fetal chromosomal abnormalities. Several studies show that the majority of pregnant women currently do not make informed decisions regarding prenatal testing. As the range of prenatal tests is expanding due to the development of new techniques such as non-invasive prenatal testing (NIPT), autonomous reproductive decision-making is increasingly challenging. In this study, a randomised controlled trial was conducted to evaluate the effect of a web-based multimedia decision aid on decision-making regarding prenatal testing. The decision aid provided both written and audiovisual information on prenatal tests currently available, that is, prenatal screening by first-trimester combined testing, NIPT and invasive diagnostic testing through chorionic villus sampling or amniocentesis. Furthermore, it contained values clarification exercises encouraging pregnant women to reflect on the potential harms and benefits of having prenatal tests performed. The use of the decision aid improved informed decisionmaking regarding prenatal testing. Of pregnant women allocated to the intervention group (n = 130) 82.3% made an informed choice compared with 66.4% of women in the control group (n = 131), P = 0.004. As the vast majority of pregnant women made decisions consistent with their attitudes towards having prenatal testing performed, this improvement in informed decisionmaking could be attributed mainly to an increase in decision-relevant knowledge. This study shows that the implementation of a web-based multimedia decision aid directly facilitates the ultimate goal of prenatal testing for fetal chromosomal abnormalities, which is enabling informed autonomous reproductive choice. European Journal of Human Genetics (2016) 24, 1409-1416; doi:10.1038/ejhg.2016.39; published online 18 May 2016 INTRODUCTIONThe main purpose of prenatal testing for fetal chromosomal abnormalities is facilitating autonomous reproductive decision-making for pregnant women and their partners, rather than achieving high uptake rates or prevention of children with chromosomal abnormalities being born. 1,2 In order to achieve autonomous reproductive decisionmaking, the choice to accept or decline prenatal testing should be informed. An informed choice is made when a woman has adequate decision-relevant knowledge and when her participation or nonparticipation is consistent with her values and attitudes towards undergoing prenatal testing. 3,4 It requires healthcare professionals to provide accurate, comprehensive and neutral information about the options available. Subsequently, the pregnant woman has to be encouraged to integrate this knowledge with her personal values when reflecting on the possible implications of having prenatal testing performed. Most international evaluations show that the majority of pregnant women currently do not make informed decisions regarding prenatal testing. 5,6 With the development and introduction of n...

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Section: Methodsmentioning

confidence: 99%

The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial

et al. 2016

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“…There were in total four different brochures: a general brochure about breast cancer treatment and FP, and a separate brochure for each of the FP-options (cryopreservation of ovarian tissue, embryos and oocytes). Both the brochures and the DA fulfilled the six minimal qualifying criteria for DAs (Elwyn et al, 2009;Joseph-Williams et al, 2014).…”

Section: Intervention and Controlmentioning

confidence: 99%

Feasibility and effects of a decision aid about fertility preservation

et al. 2016

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This paper reports on the feasibility and preliminary effects of a decision aid (DA) about female fertility preservation (FP). We conducted a pilot multicentre randomized controlled trial of women with breast cancer aged 18-40 who were randomized to brochures or the DA. Over 18 months, 62 women were eligible, of which 42 were invited by their healthcare provider (74%) to participate in the study. A total of 36 women signed up for participation and 26 (72%) were randomized to brochures (n ¼ 13) or the DA (n ¼ 13). In both groups, many women (87%) read the brochures and eight women used all available brochures. In the intervention group, 7/13 women logged in to the DA. Women who received brochures had slightly less decisional conflict, whereas knowledge improved in both groups. Our results indicate that both brochures about FP and a detailed DA have beneficial effects with regard to knowledge, but the DA seemed to introduce slightly more decisional conflict (DC) than the brochures. Although we encountered challenges with recruitment, our design and measurements seem feasible and the effects of the information materials seem promising, hence justifying conducting a larger study. ARTICLE HISTORY

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“…DAs are structured approaches guiding clinicians and patients through information about a decision and helping patients understand personal values. The International Patient Decision Aid Standards instrument (IPDASi) checklist includes clarifying values as one key component of DAs, requiring that DAs help patients imagine experiencing the physical, psychological, and social effects of different options and consider which positive and negative features of the choice matter most [7]. While DAs can help patients gain clarity about values and lead to decisions that are more in line with their values [8,9], only 55% of DAs include value clarification exercises [8].…”

Section: Introductionmentioning

confidence: 99%

Value Assessment at the Point of Care: Incorporating Patient Values throughout Care Delivery and a Draft Taxonomy of Patient Values

Armstrong

Mullins

2017

Value in Health

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Incorporation of patient values is a key element of patient-centered care, but consistent incorporation of patient values at the point of care is lacking. Shared decision making encourages incorporation of patient values in decision making, but associated tools often lack guidance on value assessment. Additionally, focusing on patient values relating only to specific decisions misses an opportunity for a more holistic approach to value assessment which could impact other aspects of clinical encounters, including health care planning, communication, and stakeholder involvement. In this commentary, we propose a taxonomy of values underlying patient decisionmaking and provide examples of how these impact provision of healthcare. The taxonomy describes four categories of patient values: global, decisional, situational, and external. Global values are personal values impacting decision-making at a universal level and can include value traits and life priorities. Decisional values are the values traditionally conceptualized in decision making, including considerations such as efficacy, toxicity, quality of life, convenience, and cost. Situational values are values tied to a specific moment in time that modify patients' existing global and decisional values. Finally, discussion of external values acknowledges that many patients consider values other than their own when making decisions. Recognizing the breadth of values impacting patient decision making has implications for both for overall healthcare delivery and for shared decision making, as value assessments focusing only on decisional values may miss important patient considerations. This draft taxonomy highlights different values impacting decision-making and facilitates a more complete value assessment at the point of care.

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Assessing the Quality of Decision Support Technologies Using the International Patient Decision Aid Standards instrument (IPDASi)

Cited by 398 publications

References 19 publications

The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial

The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial

Feasibility and effects of a decision aid about fertility preservation

Value Assessment at the Point of Care: Incorporating Patient Values throughout Care Delivery and a Draft Taxonomy of Patient Values

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