Choosing an Effective Healthcare Spokesperson: An Interactive Intervention

Not Applicable

Completed

Conditions: Surrogate Decision-making
Healthcare Spokesperson
Advance Care Planning

Registration Number: NCT04599166

Lead Sponsor: Milton S. Hershey Medical Center

Brief Summary: The investigators developed a "serious game" intervention called "Who Would You Choose: Serious Fun" (WWYC) to help people consider the key qualities healthcare spokespersons should have. The intervention uses a spinner, cards, and dice, along with a smart-phone App to prompt players (using scenarios and metaphors) to choose a spokesperson whose qualities are best suited to the role. Friendly competition is encouraged by having players receive points for correct answers, and additional points for good explanations of their choices. At the end of the game, players identify a real-life spokesperson based on the qualities considered during game-play. Then, using an associated smart-phone App, the intervention will help spark communication between the player and their chosen spokesperson.

Detailed Description: Advance care planning (ACP) is the process of thinking through and articulating in advance one's preferences for future medical care. It has long been promoted as a way for people to receive medical treatment consistent with their values, goals, and preferences. While ACP typically involves decision-making about specific life-sustaining treatments, choosing who will make medical decisions when the patient cannot is considered by many to be the single most important ACP action a person can take. When patients fail to designate a healthcare spokesperson (henceforth spokesperson), it leads to uncertainty about who will make medical decisions, what treatments are to be accepted or declined, and on what basis-which can lead to familial conflict, unwanted and costly medical care, and avoidable patient suffering. So, too, when patients choose the "wrong" person to represent them, the patient's wishes are less likely to be known or respected. The investigation team's own research suggests that when patients prefer fewer aggressive medical treatments, there is significantly lower concordance between spokespersons' decisions and patients' wishes.

Patients, families, and ACP experts have identified several qualities as being especially important for spokespersons to have. Ideally, spokespersons should know the patient's values, be available when needed, be trustworthy and caring, have good judgment, and be able to stand up under pressure. That said, many individuals (and state laws) assign spokespersons on the basis of relationship (spouse, parent, etc.) rather than personal qualities. Surprisingly, no interventions (to the team's knowledge) are explicitly designed to help people consider the actual qualities of the person chosen as spokesperson, much less engage this individual to confirm that this person can fully represent the patient's wishes should the need arise.

To address these gaps, the investigative team has developed a novel intervention that includes a "serious game" to help people consider the qualities desired in a spokesperson, then engage the person they choose for this role. Combining a serious topic with an enjoyable activity ("gamification") has been effective at changing health-related behaviors in multiple settings with the target population ("sandwich generation" and older adults). The game element of the intervention, "Who Would You Choose: Serious Fun" (WWYC), prompts players (using scenarios and metaphors) to choose a spokesperson whose qualities are best suited to the role. At the end of the game, players identify a real-life spokesperson based on the qualities considered during gameplay. Then, using an online interface, WWYC will spark communication between the player and their chosen spokesperson.

The long-term goal of this project is to help people make more thoughtful and informed choices when selecting a spokesperson, and to help these spokespersons be better prepared for the role of surrogate decision-maker. The current mixed methods study proposed here is designed to learn whether and how WWYC helps individuals select an appropriate spokesperson for healthcare decisions, as assessed via three specific aims:

Aim 1. To explore how playing the novel game Who Would You Choose affects people's choice of a spokesperson. Using qualitative methods including focus groups and one-on-one interviews, the investigative team will explore how WWYC affects individual players' thought process for choosing a spokesperson, and whether the player's choice changes as a result of game-play.

Aim 2. To establish that WWYC is a feasible way to help individuals choose and engage a spokesperson. The investigative team will judge it feasible if: 1) 100 individuals are recruited to play the game; 2) \>75% of game players report that playing the game is helpful for choosing a spokesperson; 3) \>75% of game players endorse the game; 4) \>75% of spokespersons engage with WWYC (using its online interface) following player request.

Aim 3. To integrate qualitative and quantitative data to explain how the experience of playing the game relates to their spokesperson's willingness to engage. The investigative team hypothesizes that a positive player experience with WWYC will be associated with successful engagement with their spokesperson.

Recruitment & Eligibility

Status: COMPLETED

Sex: All

Target Recruitment: 207

Inclusion Criteria

Able to read and write in English
18 years or older
Have a working smart phone

Exclusion Criteria

NOT able to read and write in English
Younger than 18 years old
Does NOT have a working smart phone

Study & Design

Study Type: INTERVENTIONAL

Study Design: SINGLE_GROUP

Primary Outcome Measures

Name	Time	Method
Number of Participants Who Changed Their Choice of Spokesperson	4 weeks	This measure involved a verbal response (during a follow-up telephone interview) to the question as to whether they have changed their choice for who should be their healthcare spokesperson in the event that someone else needed to make medical decisions for them.

Secondary Outcome Measures

Name	Time	Method
Endorsement of the WWYC Intervention	4 weeks	\>75% of WWYC participants endorse WWYC, as measured by the Net Promoter Score
Spokesperson Response (Percentage)	8 weeks	Percentage of spokespersons who responded to participant request following intervention
Participation Rate	Aug 2021 - Dec 2022	Participation rate was defined as the number of participants who completed the study. This number excludes the number of participants who were enrolled but could not complete the intervention due to problems with technology (n=80).