Research Resources

CollaboRATE for patient engagement in decisions

A 3-item, patient-reported measure of shared decision-making. Focuses on core concept of patient being informed and involved in decision-making steps.

SURE measure for decisional conflict

4-item tool to screen for decisional conflict, which refers to an individual’s perception of uncertainty about the course of action to take when the choices involve risk, loss, or regret. SURE (Sure of myself; Understand information; Risk-Benefit ratio; Encouragement)

HCAHPS for patient satisfaction

The HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) survey measures patients’ perceptions of their hospital experience. We commonly use 4-8 questions from the provider behavior and communication and engagement sections.

Knowledge questions to assess patient understanding of
treatment options and their risks and benefits

Knowledge questions are often topic-specific, so there might not be a validated measure. The link is an example from breast cancer.

We commonly use true/false/unsure response options so as not to measure people’s comfort with multiple-choice tests, but instead to measure their knowledge of the health issues.  Items should include factors that differentiate options, and the wording should be tested with the population of interest. Items should avoid double negatives which can be confusing for people to answer.

Decision Quality Instruments (DQI)

The Decision Quality Instruments (DQIs) contain 3 parts:

1. Decision-specific knowledge questions that assess patient understanding of the options and outcomes.
2. Decision-specific goals and concerns that are used to examine the extent to which patients receive treatment that is concordant with their goals.
3. Involvement questions that asses the extent to which patients are meaningfully involved in the decision-making process with their health care provider.

Standards for Universal reporting of patient Decision Aid Evaluations (SUNDAE) 

SUNDAE checklist (Standards for Universal reporting of patient Decision Aid Evaluations) includes 26 items recommended for studies reporting evaluations of patient decision aids.

The 9-item Shared Decision Making Questionnaire (SDM-Q-9)

SDM-Q-9 can be used for studies investigating the effectiveness of interventions aimed at the implementation of Shared Decision Making (SDM) as a quality indicator in health services assessments.

Shared Decision-Making Process Scale

The Shared Decision-Making (SDM) Process scale uses 4-questions about decision-making behaviors: discussion of options, pros, cons, and preferences. Designed to assess the extent to which there was an interaction between provider and patient that would meet standards for shared decision-making.

Decision Self-Efficacy Scale (DSES)

The Decision Self-Efficacy Scale (DSES) measures self-confidence or belief in one’s abilities in decision making, including shared decision making.

Decision Regret Scale

The Decision Regret Scale is a 5-item scale that measures how people feel about a decision over time. It is most useful to measure many months (or longer) after a decision is made, when there has been enough time to reflect on the experience.

However, we use this measure with caution.  See this article for more information about some unexpected outcomes of measuring decision regret. In addition, there are several types, sources, and measures of regret to consider, and one measure does not fully capture the complexity of decision regret.

Patient Engagement in Research Scale (PEIRS) 

The Patient Engagement in Research Scale (PEIRS) is a 22-item scale that measures the degree of meaningful patient and family caregiver engagement in research.

CDC Gateway to Health Communication Inclusive Communication Principles

These principles provide preferred terms for specific demographic groups in attempts to move toward non-stigmatizing, inclusive language. Best practices include direct engagement with the group of focus to find out what they prefer.

The center recommends designing for dissemination and sustainability from the start of your study. Below are some measures and frameworks that you might consider as you plan for future implementation, dissemination, and sustainability. The Dissemination and Implementation Research Center can provide further guidance.

Clinician Perceptions of Acceptability, Appropriateness, and Feasibility

Acceptability of Intervention Measure (AIM), Intervention Appropriateness Measure (IAM), and Feasibility of Intervention Measure (FIM) to assess clinician perceptions of acceptability, appropriateness, and feasibility.

These four-item measures of implementation outcomes are often considered “leading indicators” of implementation success.

Health Equity Implementation Framework (HEIF)

The Health Equity Implementation Framework explains factors relevant to implementation and disparates in healthcare.

Consolidated Framework for Implementation Research (CFIR)

The CFIR provides a menu of constructs that have been associated with effective implementation. The menu is arranged across 5 domains that can be used in a range of applications such as providing a practical guide for systematically assessing potential barriers and facilitators in preparation for implementing an innovation. A recent paper updated the CFIR with extensive user feedback. Constructs can still be mapped back to the original CFIR to ensure consistency over time.

Normalization Process Theory (NPT)

Normalization Process Theory (NPT) is a sociological toolkit that we can use to explain and understand the dynamics of implementing, embedding, and integrating some new technology or complex intervention.

Patient and Family Engagement Framework

The Patient and Family Engagement Framework is a multidimensional framework that presents the forms and levels of engagement as well as the factors that influence whether and to what extent engagement occurs.

Measuring Dissemination Potential

The RE-AIM framework was developed to enhance the impact of health promotion interventions and has been used widely to assess the impact of individual interventions. The reach dimension refers to the percentage and characteristics of individuals receiving the intervention. Effectiveness refers to the impact of the intervention (includes anticipated and unanticipated outcomes). Adoption refers to the percentage and representativeness of settings that adopt the intervention. Implementation refers to the consistency and cost of delivering the intervention. Finally, maintenance refers to long-term sustainability at both the setting and individual levels.