VITAL study phase 1: Values, preferences, priorities

Phase 1: Understanding the values, preferences, and priorities of patients and their families

Our methods

To learn about what matters most to people with multiple chronic conditions and their families, the VITAL study used purposely non-traditional research methods, including home interviews aided by photo elicitation:

• Study team members with expertise in human-centered and interaction design visited the homes of 31 people living with multiple chronic illness. Each visit lasted about two hours and included a semi-structured interview.  In 19 of those interviews, a family member participated, as well.
• Prior to the home visits, participants took up to 10 photos to represent the things they considered most important to their health and well-being. Then each interview began with patients describing the photos and why they took them.
• Using traditional research methods, the study team then sifted through transcripts of all the interviews to identify themes of personal values.

To inform the design of interventions to support patient-provider conversations about patient values, we also observed 21 clinic visits and interviewed 16 care team members.

Our findings so far

Understanding What Is Most Important to Individuals with Multiple Chronic Conditions: A Qualitative Study of Patients’ Perspectives 

Click headline for link (full text from Springer). Click "view more" to see abstract.

Abstract

Background
To improve care for individuals living with multiple chronic conditions, patients and providers must align care planning with what is most important to patients in their daily lives. We have a limited understanding of how to effectively encourage communication about patients’ personal values during clinical care.

Objective
To identify what patients with multiple chronic conditions describe as most important to their well-being and health.

Design
We interviewed individuals with multiple chronic conditions in their homes and analyzed results qualitatively, guided by grounded theory.

Participants
A total of 31 patients (mean age 68.7 years) participated in the study, 19 of which included the participation of family members. Participants were from Kaiser Permanente Washington, an integrated health care system in Washington state.

Approach
Qualitative analysis of home visits, which consisted of semi-structured interviews aided by photo elicitation.

Key Results
Analysis revealed six domains of what patients described as most important for their well-being and health: principles, relationships, emotions, activities, abilities, and possessions. Personal values were interrelated and rarely expressed as individual values in isolation.

Conclusions
The domains describe the range and types of personal values multimorbid older adults deem important to well-being and health. Understanding patients’ personal values across these domains may be useful for providers when developing, sharing, and following up on care plans.

Creating Conditions for Patients' Values to Emerge in Clinical Conversations: Perspectives of Health Care Team Members 

Click headline for link (full text from PubMed Central). Click "view more" to see abstract. 

Abstract

Eliciting, understanding, and honoring patients’ values— the things most important to them in daily life—is a cornerstone of patient-centered care. However, this rarely occurs explicitly as a routine part of clinical practice. This is particularly problematic for individuals with multiple chronic conditions (MCC) because they face difficult choices about how to balance competing demands for self-care in accordance with their values. In this study, we sought to inform the design of interventions to support conversations about patient values between patients with MCC and their health care providers. We conducted a field study that included observations of 21 clinic visits for patients who have MCC, and interviews with 16 care team members involved in those visits. This paper contributes a practice-based account of ways in which providers engage with patient values and discusses how future work in interactive systems design might extend and enrich these engagements.

“It just seems outside my health”: How Patients with Chronic Conditions Perceive Communication Boundaries with Providers 

Click headline for link (full text from PubMed Central). Click "view more" to see abstract. 

Abstract

To improve care for the growing number of older adults with multiple chronic conditions, physicians and other healthcare providers need to better understand what is most important in the lives of these patients. In a qualitative study of home visits with patients and family caregivers, we found that patients withhold information from providers when communicating about what they deem important to their health and well-being. We examine the various motivations and factors that explain communication boundaries between patients and their healthcare providers. Patients’ disclosures reflected perceptions of what was pertinent to share, assumptions about the consequences of sharing, and the influence of interpersonal relationships with providers. Our findings revealed limitations of existing approaches to support patient-provider communication and identified challenges for the design of systems that honor patient needs and preferences.

“It's good to know you're not a stranger every time”: Communication about Values Between Patients with Multiple Chronic Conditions and Healthcare Providers

Click headline for personal-use PDF. Click "view more" to see abstract. 

Abstract

When patients’ decisions about health care priorities conflict with those of their health care providers, patients’ health outcomes suffer. Patients’ values for health and well-being influence their healthcare priorities, but recent work suggests that the values discussed in clinical settings do not reflect the full breadth of patients’ values. To address an evidence gap regarding how discussions about values occur in clinical settings, we conducted a field study with patients with multiple chronic conditions and their health care providers, including clinical observations, interviews, and home visits. We report on the extent to which certain categories of patients’ values identified in prior research were discussed in clinic visits. We then discuss how patients and providers coordinated their perspectives to establish connections among patients’ values and health concerns. These findings have implications for the design of systems to support patient-provider communication to incorporate patients’ values and promote concordant priorities for health care.

Eliciting Values of Patients with Multiple Chronic Conditions: Evaluation of a Patient-centered Framework

Click headline for personal-use PDF. Click "view more" to see abstract. 

Abstract

Patients with multiple chronic conditions often face competing demands for care, and they often do not agree with physicians on priorities for care. Patients’ values shape their healthcare priorities, but existing methods for eliciting values do not necessarily meet patients’ care planning needs. We developed a patient-centered values framework based on a field study with patients and caregivers. In this paper we report on a survey to evaluate how the framework generalizes beyond field study participants, and how well the framework supports values elicitation. We found that respondents frame values in a way that is consistent with the framework, and that domains of the framework can be used to elicit a breadth of potential values individuals with MCC express. These findings demonstrate how a patient-centered perspective on values can expand on the domains considered in values clarification methods and facilitate patient-provider communication in establishing shared care priorities.

How Values Shape Collaboration Between Patients with Multiple Chronic Conditions and Spousal Caregivers

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Abstract

Individuals with multiple chronic conditions (MCC) collaborate with spousal caregivers daily to pursue what is most important to their health and well-being. Previous research in human-computer interaction has supported individuals with chronic conditions or their caregivers, but little has supported both as a unit. We conducted a field study with 12 patient-caregiver dyads, all married and living together, to identify partners’ values and how they shape collaborative management of MCC. Partners’

coinciding values motivated them to empathize with and support each other in the face of challenges related to health and well-being. When their values were asymmetric, they perceived tensions between individual autonomy and their ability to coordinate with their partner. Systems to support partners in this context could help them overcome asymmetric values, but should balance this with support for individual autonomy.

Getting Traction When Overwhelmed: Implications for Supporting Patient-Provider Communication

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Abstract

Patients who fail to reach shared understanding with their providers about their health care priorities can have poorer health outcomes and quality of life. Because patients’ priorities often reflect their values—things important and meaningful in their lives—it is important to incorporate values into patient-provider conversations. However, patients often withhold values from providers when they do not perceive them to be pertinent. In a field study with 24 patients with multiple chronic conditions, we sought to understand how participants perceived relationships among their values and their health concerns. We found that participants felt overwhelmed by multiple concerns but were able to surmount these feelings when they pursued values that were linked to self-care. We discuss implications for incorporating values into patient-provider communication.