The design of patient decision support interventions: addressing the theory-practice gap.

BACKGROUND: Although an increasing number of decision support interventions for patients (including decision aids) are produced, few make explicit use of theory. We argue the importance of using theory to guide design. The aim of this work was to address this theory-practice gap and to examine how a range of selected decision-making theories could inform the design and evaluation of decision support interventions. METHODS: We reviewed the decision-making literature and selected relevant theories. We assessed their key principles, theoretical pathways and predictions in order to determine how they could inform the design of two core components of decision support interventions, namely, information and deliberation components and to specify theory-based outcome measures. RESULTS: Eight theories were selected: (1) the expected utility theory; (2) the conflict model of decision making; (3) prospect theory; (4) fuzzy-trace theory; (5) the differentiation and consolidation theory; (6) the ecological rationality theory; (7) the rational-emotional model of decision avoidance; and finally, (8) the Attend, React, Explain, Adapt model of affective forecasting. Some theories have strong relevance to the information design (e.g. prospect theory); some are more relevant to deliberation processes (conflict theory, differentiation theory and ecological validity). None of the theories in isolation was sufficient to inform the design of all the necessary components of decision support interventions. It was also clear that most work in theory-building has focused on explaining or describing how humans think rather than on how tools could be designed to help humans make good decisions. It is not surprising therefore that a large theory-practice gap exists as we consider decision support for patients. There was no relevant theory that integrated all the necessary contributions to the task of making good decisions in collaborative interactions. DISCUSSION: Initiatives such as the International Patient Decision Aids Standards Collaboration influence standards for the design of decision support interventions. However, this analysis points to the need to undertake more work in providing theoretical foundations for these interventions.

Information and decision support needs of parents considering amniocentesis: interviews with pregnant women and health professionals.

OBJECTIVE: Our aim was to clarify and categorize information and decision support needs of pregnant women deciding about amniocentesis. BACKGROUND: Prenatal screening for Down's syndrome (implemented in routine practice) generates a quantifiable risk of chromosome abnormality. To increase certainty, chromosomal material needs to be obtained through amniocentesis or other diagnostic test. Amniocentesis carries risks of pregnancy loss. METHODS: Semi-structured interviews were conducted with health professionals and pregnant women who had considered amniocentesis. The data were qualitatively analysed using a two-step thematic content analysis. RESULTS: A sample of 17 health professionals and 17 pregnant women were interviewed. Professionals demonstrated little consensus regarding the miscarriage rate, the potential consequences of amniocentesis testing and the uncertainty associated with the tests. Furthermore, methods employed to communicate risks varied between professionals. Pregnant women reported heightened stress and anxiety. Twelve out of 17 women described the decision as complex and difficult to make while five participants were satisfied with the information and support provided. Women would have liked more information about the risks involved, the results, the consequences of an amniocentesis and associated emotional difficulties. Women highlighted the need for personalized information, presented in multiple ways, while remaining simple and unbiased. CONCLUSIONS: There is variation in the provision of information related to amniocentesis testing. The majority of pregnant women reported difficulties making a decision and identified dimensions of information and decision support where improvements were needed.

Pre-birth characteristics and 5-year follow-up of women with cryopreserved embryos after successful in vitro fertilisation treatment.

Many patients do not make a decision about the disposition of their surplus embryos until they are compelled to do so by statutory limits. In the current study, the characteristics of women who had conceived through in vitro fertilisation (IVF) and who still had embryos stored (E-S; n = 26) 5 years after IVF were compared to a cohort comparison group (C-C; n = 40). At time 1 (T1, 28 weeks pregnant) women completed questionnaires on personality traits (anxiety, locus of control and dependency) and participated in an interview on socio-demographic characteristics, family composition and stored embryos. At T2 (5 years later) women were re-interviewed and asked about beliefs about the embryos. Women in the E-S group were significantly younger, had been married or living with their partner for fewer years and had had more children than the C-C group. Further, women in the E-S group were more likely to have an external locus of control and a dependent personality than women in the C-C group. Almost all women in the E-S group (88.5%) thought of their embryos as siblings to existing children, and reported thinking about the embryos occasionally (61.5%) or frequently (34.6%). The personality differences identified may suggest that women who still have embryos after the end of fertility treatment may be in need of decision support.

Assessing the quality of decision support technologies using the International Patient Decision Aid Standards instrument (IPDASi).

OBJECTIVES: To describe the development, validation and inter-rater reliability of an instrument to measure the quality of patient decision support technologies (decision aids). DESIGN: Scale development study, involving construct, item and scale development, validation and reliability testing. SETTING: There has been increasing use of decision support technologies--adjuncts to the discussions clinicians have with patients about difficult decisions. A global interest in developing these interventions exists among both for-profit and not-for-profit organisations. It is therefore essential to have internationally accepted standards to assess the quality of their development, process, content, potential bias and method of field testing and evaluation. METHODS: Scale development study, involving construct, item and scale development, validation and reliability testing. PARTICIPANTS: Twenty-five researcher-members of the International Patient Decision Aid Standards Collaboration worked together to develop the instrument (IPDASi). In the fourth Stage (reliability study), eight raters assessed thirty randomly selected decision support technologies. RESULTS: IPDASi measures quality in 10 dimensions, using 47 items, and provides an overall quality score (scaled from 0 to 100) for each intervention. Overall IPDASi scores ranged from 33 to 82 across the decision support technologies sampled (n = 30), enabling discrimination. The inter-rater intraclass correlation for the overall quality score was 0.80. Correlations of dimension scores with the overall score were all positive (0.31 to 0.68). Cronbach's alpha values for the 8 raters ranged from 0.72 to 0.93. Cronbach's alphas based on the dimension means ranged from 0.50 to 0.81, indicating that the dimensions, although well correlated, measure different aspects of decision support technology quality. A short version (19 items) was also developed that had very similar mean scores to IPDASi and high correlation between short score and overall score 0.87 (CI 0.79 to 0.92). CONCLUSIONS: This work demonstrates that IPDASi has the ability to assess the quality of decision support technologies. The existing IPDASi provides an assessment of the quality of a DST's components and will be used as a tool to provide formative advice to DSTs developers and summative assessments for those who want to compare their tools against an existing benchmark.

Where is the theory? Evaluating the theoretical frameworks described in decision support technologies.

OBJECTIVE: To identify and describe the extent to which theory or theoretical frameworks informed the development and evaluation of decision support technologies (DSTs). METHODS: The analysis was based on the decision technologies used in studies included in the Cochrane systematic review of patient decision aids for people facing health screening or treatment decisions. The assumption was made that DSTs evaluated by randomized controlled trials, and therefore included in the updated Cochrane review have been the most rigorously developed. RESULTS: Of the 50 DSTs evaluated only 17 (34%) were based on a theoretical framework. Amongst these, 11 decision-making theories were described but the extent to which theory informed the development, field-testing and evaluation of these interventions was highly variable between DSTs. The majority of the 17 DSTs that relied on a theory was not explicit about how theory had guided their design and evaluation. Many had superficial descriptions of the theory or theories involved. Furthermore, based on the analysis of those 17 DSTs, none had reported field-testing prior to evaluation. CONCLUSION: The use of decision-making theory in DST development is rare and poorly described. The lack of theoretical underpinning to the design and development of DSTs most likely reflects the early development stage of the DST field. PRACTICE IMPLICATIONS: The findings clearly indicate the need to give more attention to how the most important decision-making theories could be better used to guide the design of key decision support components and their modes of action.