Online Tool May Improve Outpatient Advance Care Planning

Veronica Hackethal, MD

March 11, 2020

Use of an interactive online tool called PREPARE (Prepare for Your Care) may help motivate and engage patients in advance care planning, according to a new study.

The study, published online March 9 in the Annals of Family Medicine, was conducted in outpatient cancer and primary care clinics in Canada.

"It was feasible to invite patients from family doctor's offices or their outpatient cancer clinics to use the PREPARE website on their own at home. After using the tool, patients were more knowledgeable about and engaged in advanced care planning," lead author Michelle Howard, PhD, told Medscape Medical News.

One of the main purposes of advance care planning is to ensure that a patient's wishes about medical care are known before the person becomes sick. However, many patients do not engage in advance care planning, either because they don't have enough time during a doctor visit or they aren't ready to discuss end-of-life issues.

The PREPARE tool may improve this situation because it was developed to be user friendly and less confusing to patients, said Howard, an associate professor at McMaster University in Hamilton, Ontario, Canada.

"In the past, information about advance care planning wasn't always user friendly. PREPARE was developed to be very user friendly. All different types of people are more likely to use tools that are more user friendly," she said.

PREPARE uses video stories and algorithms to guide patients through a multistep process. It generates a personalized summary about users' preferences and an advanced care directive.

It takes about 1 hour to complete and can be used at home on computers, tablets, and smartphones. Healthcare providers can print out the information, which is available in English and Spanish, for patients who may not be able to use a computer.

Past studies in research settings have found that PREPARE improved engagement in advance care planning. It's been tested among ethnically and sociodemographically diverse older adults with low computer literacy.

The tool was developed specifically for the US medical legal system; a Canadian version is also available. Howard notes that users from other countries will need to doublecheck local rules and regulations about advance care planning.

Prospective Study in Outpatient Clinics

To test PREPARE in a regular clinic setting, Howard and colleagues conducted a prospective study in 15 primary care clinics with patients aged 50 years or older and in two outpatient cancer clinics with patients aged 15 years or older.

After enrolling, participants were asked to access the PREPARE website on their own from home over the course of 6 weeks. Research assistants sent reminders at 2 and 4 weeks to participants who had not yet used the site.

Participants also completed surveys before and after using PREPARE to evaluate their experiences.

The surveys assessed behavior change and actions toward completing advance care planning using a 55-question validated questionnaire. On the basis of the answers to these questions, Howard and colleagues calculated an overall behavior change score on a scale of 0 to 5 and an overall action score on a scale of 0 to 21. Higher scores indicated greater engagement.

The average follow-up was 6.6 weeks. Results from 136 patients (mean age, 65.6 years) show that use of PREPARE had a moderate effect on behavior change (effect size, 0.5).

Participants significantly improved across all behavior measures, including those for knowledge, contemplation, self-efficacy, and readiness to engage in advance care planning.

Participants also showed a small improvement in actions related to advance care planning (effect size, 0.23).

Specifically, participants significantly improved in three of five action measures: engaging surrogate medical decision makers, considering medical decisions about the care they would like near the end of life, and considering flexibility for surrogate medical decision makers, such as the ability to change advance directives on the basis of context and the patient's best interest.

On most measures, results were similar for primary care and cancer care groups.

The authors note several study limitations, including a lack of a control group and the fact that clinics and participants were not chosen randomly, which could have biased results. In addition, 91.9% of participants were white and 81.6% had at least some college education, so results may not apply to more diverse populations.

The authors are currently testing PREPARE in more diverse settings in a large randomized trial in three University of California clinical sites.

The authors have disclosed no relevant financial relationships.

Ann Fam Med. Published online March 9, 2020. Abstract

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