Patient decision aids in routine maternity care: Benefits, barriers, and new opportunities

Background and aim Participation in decision-making, supported by comprehensive and quality information provision, is increasingly emphasised as a priority for women in maternity care. Patient decision aids are tools that can offer women greater access to information and guidance to participate in maternity care decision-making. Relative to their evaluation in controlled settings, the implementation of patient decision aids in routine maternity care has received little attention and our understanding of which approaches may be effective is limited. This paper critically discusses the application of patient decision aids in routine maternity care and explores viable solutions for promoting their successful uptake. Discussion A range of patient decision aids have been developed for use within maternity care, and controlled trials have highlighted their positive impact on the decision-making process for women. Nevertheless, evidence of successful patient decision aid implementation in real world health care settings is lacking due to practical and ideological barriers that exist. Patient-directed social marketing campaigns are a relatively novel approach to patient decision aid delivery that may facilitate their adoption in maternity care, at least in the short-term, by overcoming common implementation barriers. Social marketing may also be particularly well suited to maternity care, given the unique characteristics of this health context. Conclusions The potential of social marketing campaigns to facilitate patient decision aid adoption in maternity care highlights the need for pragmatic trials to evaluate their effectiveness. Identifying which sub-groups of women are more or less likely to respond to these strategies will further direct implementation.

Patient perceptions of balance in prostate cancer screening decision aids

Purpose. Recent reports reveals that studies of decision aids reported concern about the balance and accuracy of information included in decision aids. This study explores measures of balance in patient decision aids through a review of prostate cancer screening decision aid studies and analysis of patients’ rating of a patient decision aid for prostate cancer screening. ^ Methods. A data-abstraction form was used to collect the key characteristics, pertaining to balance, of studies included in the review. The key characteristics included (1) sample characteristics (age, race, family history of prostate cancer, and education), (2) description of the decision aid and how it was implemented, and (3) if a measure of balance was used for process evaluation and the rating. A summary table was used to report the findings. Deidentified data was received from a decision aid control trial and logistic regression analysis was used to test the association between the dependent variable (balance) and the independent variables (age, family history, race, screening preference at baseline, education, health insurance status). ^ Conclusion. Three sociodemographic variables remained significant in the final regression model: African American race, education and PSA history. Further research is needed to determine if these variables can predict a man’s perception of balance in prostate cancer screening decision aids. If a patient’s perceptions of balance can be predicted based on specific characteristics, patient report may not be the most objective method of evaluating the acceptability of a decision.^

Decision aids for people considering taking part in clinical trials

Peer reviewed

Overdue choices : how information and role in decision-making influence women's preferences for induction for prolonged pregnancy

Background: Enabling women to make informed decisions is a crucial component of consumer-focused maternity care. Current evidence suggests that health care practitioners’ communication of care options may not facilitate patient involvement in decision-making. The aim of this study was to investigate the effect of specific variations in health caregiver communication on women’s preferences for induction of labor for prolonged pregnancy. Methods: A convenience sample of 595 female participants read a hypothetical scenario in which an obstetrician discusses induction of labor with a pregnant woman. Information provided on induction and the degree of encouragement for the woman’s involvement in decision-making was manipulated to create four experimental conditions. Participants indicated preference with respect to induction, their perceptions of the quality of information received, and other potential moderating factors. Results: Participants who received information that was directive in favor of medical intervention were significantly more likely to prefer induction than those given nondirective information. No effect of level of involvement in decision-making was found. Participants’ general trust in doctors moderated the relationship between health caregiver communication and preferences for induction, such that the influence of information provided on preferences for induction differed across levels of involvement in decision-making for women with a low trust in doctors, but not for those with high trust. Many women were not aware of the level of information required to make an informed decision. Conclusions: Our findings highlight the potential value of strategies such as patient decision aids and health care professional education to improve the quality of information available to women and their capacity for informed decision-making during pregnancy and birth. (BIRTH 39:3 September 2012)

Choosing a model of maternity care: decision support needs of Australian women

- BACKGROUND Access to information on the features and outcomes associated with the various models of maternity care available in Australia is vital for women's informed decision-making. This study sought to identify women's preferences for information access and decision-making involvement, as well as their priority information needs, for model of care decision-making. - METHODS A convenience sample of adult women of childbearing age in Queensland, Australia were recruited to complete an online survey assessing their model of care decision support needs. Knowledge on models of care and socio-demographic characteristics were also assessed. - RESULTS Altogether, 641 women provided usable survey data. Of these women, 26.7 percent had heard of all available models of care before starting the survey. Most women wanted access to information on models of care (90.4%) and an active role in decision-making (99.0%). Nine priority information needs were identified: cost, access to choice of mode of birth and care provider, after hours provider contact, continuity of carer in labor/birth, mobility during labor, discussion of the pros/cons of medical procedures, rates of skin-to-skin contact after birth, and availability at a preferred birth location. This information encompassed the priority needs of women across age, birth history, and insurance status subgroups. - CONCLUSIONS This study demonstrates Australian women's unmet needs for information that supports them to effectively compare available options for model of maternity care. Findings provide clear direction on what information should be prioritized and ideal channels for information access to support quality decision-making in practice.

Shortening the decision distance: Selecting decision aids for improved technology investment performance

Deciding which technology to invest in is a recurring issue for technology managers, and the ability to successfully identify the right technology can be a make or break decision for a company. The effects of globalisation have made this issue even more imperative. Not only do companies have to be competitive by global standards but increasingly they have to source technological capabilities from overseas as well. Technology managers already have a variety of decision aids to draw upon, including valuation tools, for example DCF and real options; decision trees; and technology roadmapping. However little theory exists on when, where, why or even how to best apply particular decision aids. Rather than developing further techniques, this paper reviews the relevance and limitations of existing techniques. This is drawn from an on going research project which seeks to support technology managers in selecting and applying existing decision aids and potentially in the design of future decision aids. It is intended that through improving the selection of decision aids, decision performance can be increased, leading to more effective allocation of resources and hence competitive advantage. (c) 2006 PICMET.

[Drug-induced Stevens-Johnson syndrome in a patient with AIDS]

The Stevens-Johnson syndrome is a severe potentially life-threatening form of the erythema multiforme, affecting both skin and mucous membranes. We present a case of a 49-year-old male patient with AIDS who developed a Stevens-Johnson syndrome while being treated with pyrimethamine, sulfadiazine and phenytoin for cerebral toxoplasmosis. Further diagnostic evaluation of this dangerous cutaneous affection may prove difficult for several reasons. In particular, in patients with AIDS who are more susceptible for adverse drug reactions and who are simultaneously receiving a variety of drugs with a considerable potential of cutaneous side effects, therapy cannot be withhold for lack of therapeutic alternatives. Moreover, the low lymphocyte count in this case may have made reliable testing with lymphocyte transformation studies impossible. The evaluation and the differential diagnosis of the drug-induced Stevens-Johnson syndrome are discussed. Especially long- and moderately long-acting sulfonamides belong to the most important agents that can cause a drug-induced Stevens-Johnson syndrome. The pathogenesis and the risk factors for cutaneous hypersensitivity reactions in HIV-infected patients are only poorly understood. These kind of reactions, however, seem to occur more often in patients with a more advanced immunodeficiency.

Information giving and decision-making in patients with advanced cancer: A systematic review

Patients with advanced, non-curable cancer face difficult decisions on further treatment, where a small increase in survival time must be balanced against: the toxicity of the treatment. If patients want to be involved in these decisions, in keeping with current notions of autonomy and empowerment, they also require to be adequately informed both on the treatments proposed and on their own disease status and prognosis. A systematic review was performed on decision-making and information provision in patients with advanced cancer. Studies of interventions to improve information giving and encourage participation in decision-making were reviewed, including both randomised controlled trials and uncontrolled studies. Almost all patients expressed a desire for full information, but only about two-thirds wished to participate actively in decision-making. Higher educational level, younger age and female sex were predictive of a desire to participate in decision-making. Active decision-making was more common in patients with certain cancers (e.g. breast) than others (e.g. prostate). A number of simple interventions including question prompt sheets, audio-taping of consultations and patient decision aids have been shown to facilitate such involvement. (c) 2005 Elsevier Ltd. All rights reserved.

General Practitioner Antimicrobial Stewardship Programme Study (GAPS): protocol for a cluster randomised controlled trial

Background There is a strong link between antibiotic consumption and the rate of antibiotic resistance. In Australia, the vast majority of antibiotics are prescribed by general practitioners, and the most common indication is for acute respiratory infections. The aim of this study is to assess if implementing a package of integrated, multifaceted interventions reduces antibiotic prescribing for acute respiratory infections in general practice. Methods/design This is a cluster randomised trial comparing two parallel groups of general practitioners in 28 urban general practices in Queensland, Australia: 14 intervention and 14 control practices. The protocol was peer-reviewed by content experts who were nominated by the funding organization. This study evaluates an integrated, multifaceted evidence-based package of interventions implemented over a six month period. The included interventions, which have previously been demonstrated to be effective at reducing antibiotic prescribing for acute respiratory infections, are: delayed prescribing; patient decision aids; communication training; commitment to a practice prescribing policy for antibiotics; patient information leaflet; and near patient testing with C-reactive protein. In addition, two sub-studies are nested in the main study: (1) point prevalence estimation carriage of bacterial upper respiratory pathogens in practice staff and asymptomatic patients; (2) feasibility of direct measures of antibiotic resistance by nose/throat swabbing. The main outcome data are from Australia’s national health insurance scheme, Medicare, which will be accessed after the completion of the intervention phase. They include the number of antibiotic prescriptions and the number of patient visits per general practitioner for periods before and during the intervention. The incidence of antibiotic prescriptions will be modelled using the numbers of patients as the denominator and seasonal and other factors as explanatory variables. Results will compare the change in prescription rates before and during the intervention in the two groups of practices. Semi-structured interviews will be conducted with the general practitioners and practice staff (practice nurse and/or practice manager) from the intervention practices on conclusion of the intervention phase to assess the feasibility and uptake of the interventions. An economic evaluation will be conducted to estimate the costs of implementing the package, and its cost-effectiveness in terms of cost per unit reduction in prescribing. Discussion The results on the effectiveness, cost-effectiveness, acceptability and feasibility of this package of interventions will inform the policy for any national implementation.

Développement d'un outil d'aide à la communication: Parler aux enfants mineurs du résultat d'un test BRCA1/2

Les individus porteurs d’une mutation des gènes BRCA1/2 s’inquiètent généralement du risque de leurs enfants d’avoir hérité de la mutation génétique familiale. Malgré l’absence d’avantages médicaux pour les enfants mineurs et l’impossibilité pour eux d’être testés avant d’être adultes, une majorité des parents leur communiquent néanmoins le résultat du test génétique BRCA1/2. Les parents confrontés à cette situation disent avoir besoin d’être accompagnés dans cette décision. L’objectif de ce projet, à devis qualitatif, était de développer un outil d’aide à la décision à l’intention des individus porteurs quant à la communication du résultat de test BRCA1/2 à leurs enfants mineurs. Développé conformément aux critères de l’International Patient Decision Aids Standards, le prototype a été évalué lors de groupes de discussion et d’entrevues individuelles menés auprès de mères porteuses d’une mutation des gènes BRCA1/2 (n=9). Des professionnels de la santé l’ont également commenté (n=3). Une analyse thématique a été effectuée à partir des transcriptions des entrevues. Globalement, les résultats de cette étude suggèrent que les mères ne présentent pas de besoin quant à la décision de communiquer ou non le résultat BRCA1/2 à leurs enfants mineurs, puisqu’elles semblent déjà avoir choisi d’en parler. Elles désirent un outil pour les préparer et les aider à communiquer l’information à leurs enfants. La visée de l’outil a donc été modifiée afin de répondre aux besoins des mères. L’outil d’aide à la communication est présenté sous la forme d’un livret. Il comprend les avantages et les inconvénients de communiquer, des étapes afin de s’y préparer, des conseils et des témoignages de parents. D’autres études seront nécessaires afin d’évaluer l’effet de cet outil pour les parents porteurs dans leur processus de communication.

L’implication des populations vulnérables dans le développement d’outils d’aide à la décision pour patients

Il est recommandé que les utilisateurs des outils d’aide à la décision soient impliqués dans le processus de développement, mais à ce jour, on ne sait pas jusqu’à quel point ni de quelle manière les personnes vulnérables sont impliquées. L’objectif était de décrire les enjeux entourant l’implication des populations vulnérables dans le développement d’outils d’aide à la décision et de comparer leur implication avec celle de la population en général. Cette étude s’inscrivait dans un plus vaste projet de recherche débutant par une revue systématique des écrits. Une série de critères a été élaborée afin d’identifier, lors de l’extraction des données, les articles décrivant un outil d’aide à la décision ayant impliqué des personnes vulnérables au cours du développement. Des entrevues téléphoniques semi-dirigées ont également été effectuées avec 10 développeurs de d’outils d’aide à la décision, 6 d’entre eux ont impliquées des populations vulnérables et les 4 autres ont impliqué des membres de la population en général. Les résultats de ce mémoire suggèrent que les pratiques de développement d’outils d’aide à la décision changent lorsque les populations vulnérables sont impliquées dans le processus. Les populations vulnérables sont généralement impliquées dans le même type d’activités de développement, mais un accent est mis sur les activités qui permettent de mieux comprendre leurs besoins et sur les activités qui favorisent une bonne relation de confiance entre elles et l’équipe de développement. Contrairement à l’implication de la population en générale, le recrutement des populations vulnérables se déroule le plus souvent en partenariat avec des groupes communautaires et les activités de recherche prennent place dans la communauté.

Development and usability testing of a Web-based decision aid for families of patients receiving prolonged mechanical ventilation.

BACKGROUND: Web-based decision aids are increasingly important in medical research and clinical care. However, few have been studied in an intensive care unit setting. The objectives of this study were to develop a Web-based decision aid for family members of patients receiving prolonged mechanical ventilation and to evaluate its usability and acceptability. METHODS: Using an iterative process involving 48 critical illness survivors, family surrogate decision makers, and intensivists, we developed a Web-based decision aid addressing goals of care preferences for surrogate decision makers of patients with prolonged mechanical ventilation that could be either administered by study staff or completed independently by family members (Development Phase). After piloting the decision aid among 13 surrogate decision makers and seven intensivists, we assessed the decision aid's usability in the Evaluation Phase among a cohort of 30 surrogate decision makers using the Systems Usability Scale (SUS). Acceptability was assessed using measures of satisfaction and preference for electronic Collaborative Decision Support (eCODES) versus the original printed decision aid. RESULTS: The final decision aid, termed 'electronic Collaborative Decision Support', provides a framework for shared decision making, elicits relevant values and preferences, incorporates clinical data to personalize prognostic estimates generated from the ProVent prediction model, generates a printable document summarizing the user's interaction with the decision aid, and can digitally archive each user session. Usability was excellent (mean SUS, 80 ± 10) overall, but lower among those 56 years and older (73 ± 7) versus those who were younger (84 ± 9); p = 0.03. A total of 93% of users reported a preference for electronic versus printed versions. CONCLUSIONS: The Web-based decision aid for ICU surrogate decision makers can facilitate highly individualized information sharing with excellent usability and acceptability. Decision aids that employ an electronic format such as eCODES represent a strategy that could enhance patient-clinician collaboration and decision making quality in intensive care.

Knowledge translation for effective consumers

With the emergence of patient-centered care, consumers are becoming more effective managers of their care—in other words, “effective consumers.” To support patients to become effective consumers, a number of strategies to translate knowledge to action (KTA) have been used with varying success. The use of a KTA framework can be helpful to researchers and implementers when framing, planning, and evaluating knowledge translation activities and can potentially lead to more successful activities. This article briefly describes the KTA framework and its use by a team based out of the University of Ottawa to translate evidence-based knowledge to consumers. Using the framework, tailored consumer summaries, decision aids, and a scale to measure consumer effectiveness were created in collaboration with consumers. Strategies to translate the products into action then were selected and implemented. Evaluation of the knowledge tools and products indicates that the products are useful to consumers. Current research is in place to monitor the use of these products, and future research is planned to evaluate the effect of using the knowledge on health outcomes. The KTA framework provides a useful and valuable approach to knowledge translation.