Strategies for distributing cancer screening decision aids in primary care

Objective

Decision aids (DAs) have been shown to facilitate shared decision making about cancer screening. However, little data exist on optimal strategies for dissemination. Our objective was to compare different decision aid distribution models.

Methods

Eligible patients received video decision aids for prostate cancer (PSA) or colon cancer screening (CRC) through 4 distribution methods. Outcome measures included DA loans (N), % of eligible patients receiving DA, and patient and provider satisfaction.

Results

Automatically mailing DAs to all age/gender appropriate patients led to near universal receipt by screening-eligible patients, but also led to ineligible patients receiving DAs. Three different elective (non-automatic) strategies led to low rates of receipt. Clinician satisfaction was higher when patients viewed the DA before the visit, and this model facilitated implementation of the screening choice. Regardless of timing or distribution method, patient satisfaction was high.

Conclusions

An automatic DA distribution method is more effective than relying on individual initiative. Enabling patients to view the DA before the visit is preferred.

Practice implications

Systematically offering DAs to all eligible patients before their appointments is the ideal strategy, but may be challenging to implement.     

Promoting shared decision making in advanced cancer: Development and piloting of a patient communication aid

Objective

To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.

Improving knowledge and decision readiness to participate in cancer clinical trials: Effects of a plain language decision aid for minority cancer survivors

ObjectiveTo evaluate the impact of a web-based, plain language decision aid (CHOICES DA) on minority cancer survivors’ knowledge of cancer clinical trials (CCTs), readiness for making decisions about clinical trial participation, and willingness to participate in a clinical trial.MethodsParticipants were 64 Black and Hispanic cancer survivors from Miami, Florida. In a single arm intervention study, participants completed self-report assessments of CCT knowledge, decision readiness regarding clinical trial participation, and willingness to participate at three time points.ResultsBlack and Hispanic participants did not differ on demographic characteristics. Post-test and follow-up measures of CCT knowledge and decision readiness were significantly greater than pre-test measures for the sample overall, and for Black and Hispanic participants separately. Few significant differences were observed between Black and Hispanic participant outcomes at each survey time point, and willingness to participate did not change overall and for either group independently.ConclusionsReviewing the CHOICES DA was associated with significantly improved knowledge and decision readiness to participate in a CCT immediately and at 2-week follow-up.Practical ImplicationsThese findings suggest that CHOICES DA may support informed decision making about CCT participation within an acute, yet clinically relevant window of time for minority cancer patients who are substantially under-represented in cancer research.     

Uncertainty and patients’ preferred role in decision making

Objective

Experts recommend that clinicians tailor their interactions according to each patient's preferred decision style. Because participation is associated with improved clinical outcomes, factors which modify preferred role should be addressed before determining the level at which patients wish to participate. The objective of this study was to determine if certainty related to initiating treatment is related to preferred role in decision making.

Methods

We conducted face-to-face interviews with 142 patients eligible for the treatment of hepatitis C. Preferred role in decision making was measured using the Control Preferences Scale and certainty was measured with 11-point numeric rating scale.

Results

Subjects who were uncertain whether they wanted to start treatment were more likely to prefer Role 2: “to make the final selection of my treatment after seriously considering my doctor's opinion” over Role 1 “to make the final selection about which treatment I will receive” compared to those who were certain [Adjusted OR (95% CI) = 4.9 (1.7-14.5)]. Subjects who were uncertain were also more likely to prefer sharing responsibility for decision making over Role 1 compared to those who were certain [Adjusted OR (95% CI) = 3.7 (1.3-10.4)].

Conclusions

Certainty is associated with preferred decision styles. Physicians should ascertain their patients’ levels of uncertainty and adjust their input accordingly.

Practice implication

Physicians should ascertain their patients’ levels of uncertainty and adjust their input accordingly.     

Communicating side effect risks in a tamoxifen prophylaxis decision aid: The debiasing influence of pictographs

Objective

To experimentally test whether using pictographs (image matrices), incremental risk formats, and varied risk denominators would influence perceptions and comprehension of side effect risks in an online decision aid about prophylactic use of tamoxifen to prevent primary breast cancers.

Methods

We recruited 631 women with elevated breast cancer risk from two healthcare organizations. Participants saw tailored estimates of the risks of 5 side effects: endometrial cancer, blood clotting, cataracts, hormonal symptoms, and sexual problems. Presentation format was randomly varied in a three factor design: (A) risk information was displayed either in pictographs or numeric text; (B) presentations either reported total risks with and without tamoxifen or highlighted the incremental risk most relevant for decision making; and (C) risk estimates used 100 or 1000 person denominators. Primary outcome measures included risk perceptions and gist knowledge.

Results

Incremental risk formats consistently lowered perceived risk of side effects but resulted in low knowledge when displayed by numeric text only. Adding pictographs, however, produced significantly higher comprehension levels.

Conclusions

Pictographs make risk statistics easier to interpret, reducing biases associated with incremental risk presentations.

Practice implications

Including graphs in risk communications is essential to support an informed treatment decision-making process.     

Disparities in patient reports of communications to inform decision making in the DECISIONS survey

Objective

To identify patient- and decision-type predictors of two key aspects of informed decision making: discussing the cons (not just the pros) of medical interventions and asking patients what they want to do.

Methods

Using data from 2473 members of the DECISIONS survey, a nationally representative sample of U.S. adults age 40+, we used logistic regression analysis to identify which patient characteristics predicted patient reports of healthcare providers discussing cons or eliciting preferences about one of 9 common medical decisions.

Results

Multiple demographic characteristics predicted both discussions of cons and elicitations of preferences, although the specific characteristics varied between decision contexts. In particular, African-American respondents reported being more likely to receive a discussion of the cons of cancer screening (OR = 1.69, p < 0.05) yet less likely to have been asked their opinion about either getting a cancer screening test (OR = 0.56, p < 0.05) or initiating medications (OR = 0.53, p < 0.05). Significant cross-decision variations remained even after controlling for patient characteristics.

Conclusions

Important disparities in patient communication and involvement appear to exist both between different types of medical decisions and between different types of patients.

Practice implications

Providers must make sure to consistently discuss the cons of treatment and to solicit input from all patients, especially African-Americans.     

Evaluation of a widely available patient decision aid for the treatment of prostate cancer

Background

The effectiveness of patient decision aids (PtDA) is rarely evaluated in the “real world” where patients vary in their preferences related to decision support.

The design of a decision aid about diabetes medications for use during the consultation with patients with type 2 diabetes

Objective

To describe the process used to develop a medication choice decision aid (DA) for patients with type 2 diabetes.

Methods

We developed the DA through active collaboration with patients, clinicians, and designers, direct observations of clinical encounters, literature review, and collaborative development of design criteria. Insights from these processes informed the iterative creation of prototypes that were reviewed and field tested in actual consultations.

Results

The goal of the DA was to facilitate a conversation between the clinician and the patient about diabetes medication options. Four iterations of the DA were developed and field-tested before arriving at issue cards that organized the data for five medications around glucose control, hypoglycemia, weight changes, daily routine, self-monitoring and side effects. These cards successfully generated conversations during consultations. An ongoing clinical trial will determine if this DA affects patient adherence and outcomes.

Conclusions

A collaboratively developed DA designed to create a conversation about diabetes medications may lead to more patient-centered treatment choices.

Practice implications

If effective, this DA could replace disease-centered treatment algorithms for patient-centered conversations that enhance the management of patients with type 2 diabetes.     

A tale of two studies: the importance of setting, subjects and context in two randomized, controlled trials of a web-based decision support for perimenopausal and postmenopausal health decisions

OBJECTIVE: Knowledge relevant to women's peri- and postmenopausal health decisions has been evolving rapidly. Web-based decision supports can be rapidly updated and have the potential to improve the quality of patients' decisions. We developed and tested a web-based decision support for peri- and postmenopausal health decisionmaking. METHODS: We recruited 409 women aged 45-75 for one randomized, controlled trial and 54 women with an upcoming clinic appointment for a subsequent trial. Women were randomized to use the web-based decision support versus a printed brochure (first trial) and usual care (second trial). Outcomes were changes in decisional satisfaction, decisional conflict, and knowledge, both within each trial and compared across the trials. RESULTS: Intervention subjects had greater increases in decisional satisfaction in the second trial and knowledge in both trials. A high dropout rate among women randomized to the website in the first trial effectively negated benefits in that trial, but not in the second. CONCLUSIONS: The utility of this web-based decision support in two trials depended on a number of factors that appear related to the urgency of making a decision. PRACTICE IMPLICATIONS: Decision aids should be targeted to patients actively trying to make a decision.     

The effects of process-focused versus experience-focused narratives in a breast cancer treatment decision task

Objective

To examine the effect of patient narratives that discuss decision processes versus patient experiences on decisions about treatments for early stage breast cancer.

Methods

We recruited 300 women with no previous history of breast cancer to imagine that they had been diagnosed with early stage breast cancer and to choose between mastectomy and lumpectomy with radiation. Before learning about their treatment options, participants were randomly assigned to one of four conditions with videotaped stories from fictitious cancer survivors, using a 2 (content: experience versus process) × 2 (emotional valence: positive only vs. positive and negative) factorial design, or a control condition with no stories. We measured information search, treatment intentions, and decision satisfaction.

Results

Participants viewing process narratives spent more time searching for information. Participants viewing experience narratives reported a greater ability to imagine what it was like to experience the treatments; they also evaluated their decision more positively on several dimensions.

Conclusions

Process narratives appeared to guide information search, and experience narratives improved evaluations of the decision process.

Practice implications

There is no evidence that process and experience narratives ‘bias’ decisions in the same manner as outcome narratives. Further, their potential to focus patient attention on key information and increase patient confidence in decision making appears significant.     

A computerized decision support system for patient selection in dental education

A computerized decision support system is presented. The system is used to aid in the situation of patient selection for the purpose of dental education and utilizes the PERT/CPM methodology and decision tables. It runs on a microcomputer and written in Basic. The input is a list of patient's needs, and the output is a tentative treatment plan, the chair time needed to complete the treatment, its cost, and the probability that the student will finish it on time.     

A usability study of a computerized decision aid to help patients with, early stage papillary thyroid carcinoma in, decision-making on adjuvant radioactive iodine treatment

Objective

We tested the usability of a patient-directed decision aid (DA), intended for patients with early stage papillary thyroid carcinoma (PTC) deciding to accept or reject adjuvant radioactive iodine (RAI) treatment. This decision is complicated by uncertainty of the medical evidence relating to potential treatment benefits.

Methods

The DA was tested by 12 thyroid cancer survivors, 7 thyroid specialty physicians, and 30 lay individuals with no history of thyroid cancer. The participants completed the System Usability Scale for human-computer interaction questionnaire. The medical knowledge of lay participants was assessed before and after DA exposure. Qualitative participant feedback was obtained by thinking aloud during DA use, as well as from interviews.

Results

Participants generally found the usability of the DA acceptable. The DA significantly increased medical knowledge. In spite of some physicians’ concerns about disclosure of treatment controversy and evidence uncertainty, it was found to be acceptable to non-physicians.

Conclusion

A computerized DA on RAI treatment is acceptable to physicians and non-physicians and can improve medical knowledge.

Practice implications

In counseling patients about complex medical decisions, disclosure of uncertainty related to medical evidence may be acceptably conveyed using a DA.     

Decision support systems for choosing a primary health care provider in Sweden

Objective

To evaluate how patients are supported with information and other forms of Web-based decision support for making an informed choice of a primary health care provider.

Methods

The article is based on a comparative case study of recently developed tools provided by Web portals in Sweden (one national, three regional). The theoretical framework for analysis is the general calculation model, including the steps of isolating, examining, and ranking available options.

Results

The provision of information and other forms of support is reasonable when it comes to isolating a particular alternative or presenting a general view of alternatives. As for examining and ranking, one regional system and one national system offer support based on information from patient surveys and waiting times, and one regional system offers support based on provider competencies.

Conclusion

One design alternative is to represent the opinions of patients about care centers, another is to represent the characteristics of care centers, and a third is to combine the two. The general calculation model is relevant as a framework for analysis from a practical as well as a theoretical viewpoint.

Practical implications

The study provides practical examples of decision support for patient choice in primary health care.     

A generic tool for development of decision aids based on clinical practice guidelines

Objective

Patient involvement in medical decision making has been suggested to contribute to patients’ satisfaction and better patient outcomes. Decision aids are particularly useful for preference-sensitive decisions. Ideally, these should be based on up-to-date evidence-based guidelines. The objective of this project was to develop a generic format for development and maintenance of decision aids based on evidence-based guidelines.

Methods

Decision aids, evidence-based guidelines and IPDAS standards were used for development of a generic format for decision aids. Patient focus groups were used to assess patients’ information needs, expectations, personal values and preferences for presentation of information.

Results

We developed a generic format for decision aids and six specific decision aids derived from evidence-based guidelines. The decision aids were published on the Dutch national health care portal. Furthermore, we reached formal agreement on ownership and maintenance of the decision aids with all stakeholders. We achieved these results within 12 months.

Conclusion

Our generic format facilitated the efficient production of specific decision aids based on evidence-based guidelines.

Practice implications

If guidelines and decision aids are developed in parallel, high-quality patient information can be produced within a short time frame. The process of development should include adequate patient involvement and a strategy for maintenance.     

The Complementary Medicine Education and Outcomes (CAMEO) program: A foundation for patient and health professional education and decision support programs

Objective

This paper describes the background, design and evaluation of a theory-informed education and decision support program for cancer patients considering complementary medicine (CM).

Methods

The program was informed by the Shared Decision Making theory, the Ottawa Decision Support Framework and the Supportive Care Framework. Previous empirical evidence and baseline research were used to identify patients’ and health professionals’ (HPs) information and decision support needs related to CM.

Results

To address the continuum of CM needs, a variety of education and decision support interventions were developed, including basic CM information and resources for patients and HPs, a group education program and one-on-one decision support coaching for patients, and an on-line education module for HPs. Evaluation of the program and individual interventions is underway.

Conclusions

This education and decision support program addresses a significant gap in care and offers an evidence-informed framework in which to translate CM evidence to conventional care settings and promote communication about CM.

Practice implications

Evidence-informed CM education and decision support interventions are needed to shift the culture around CM within conventional care settings and promote open communication that will lead to CM therapies being safely integrated into care.     

A prospective cohort study of shared decision making in lung cancer diagnostics: Impact of using a patient decision aid

ObjectiveThe objective of this study was to describe the impact on patient-reported outcomes of introducing Shared Decision Making (SDM) and a Patient Decision Aid (PtDA) in the initial process of lung cancer diagnostics.MethodsWe conducted a prospective cohort study, where a control cohort was consulted according to usual clinical practice. After introducing SDM through a PtDA and training of the staff, the SDM cohort was enrolled in the study. All patients completed four questionnaires: the Decisional Conflict Scale (DCS) before and after the consultation, the CollaboRATE scale after the consultation, and the Decision Regret Scale (DRS).ResultsPatients exposed to SDM and a PtDA had significantly improved DCS scores after the consultation compared to the control group (a difference of 10.26, p = 0.0128) and significantly lower DRS scores (a difference of 8.98, p = 0.0197). Of the 82 control patients and 52 SDM patients 29% and 54%, respectively, gave the maximum score on the CollaboRATE scale (Pearson’s chi² 8.0946, p = 0.004).ConclusionThe use of SDM and a PtDA had significant positive impact on patient-reported outcomes.Practice implicationsOur results may encourage the increased uptake of SDM in the initial process of lung cancer diagnostics.