PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Older adults with long-term illnesses may find it hard to cope or to access the health care they need, especially in low-income and minority communities.

One solution might be the patient-centered medical home, which is a way of providing care in which clinic staff get to know each patient to make sure each patient gets the right care at the right time. Researchers wanted to see if there was a way to set up a similar structure in patients’ communities, specifically in low-income neighborhoods and focusing on older adults. Researchers thought the structure could help older adults participate in the wellness services they need. The researchers call this potential solution a person-centered wellness home.

Project Purpose

The team had three goals. The team tested whether getting wellness coaching after completing a disease self-management course could help older patients with two or more diseases take care of their long-term illnesses.

The researchers also wanted to create a personal health record that patients could use to share their self-care and wellness goals with doctors, nurses, and wellness coaches.

The team also wanted to create an organizational structure for a person-centered wellness home.

Methods

The study had three parts.

Part 1: Researchers recruited 121 patients who had completed a six-week disease self-management course, were age 55 or older, and had two or more long-term illnesses. To join the study, participants also needed to speak English or Spanish, be able to walk on their own, and not have problems with thinking or memory. All of the participants lived in low-income public housing communities in the South Bronx in New York City.

Researchers divided the patients at random into two groups. One group of 61 patients worked with certified wellness coaches. The coaches split this group into three classes. Patients in each class participated in 24 weekly one-hour group phone sessions.

The second group of 60 people didn’t get any wellness coaching.

The researchers then looked at whether people who had a wellness coach and participants who did not have a coach differed in

• Exercise
• Waist size
• Smoking habits
• Physical functioning
• The number of times they had fallen in the past month
• Confidence that they could improve their health

All participants also answered a set of questions at the beginning of the study, after three months, and then again after six months. These questions helped researchers see whether any changes occurred in participants’ physical health, depression levels, energy levels, pain, and sleep. The researchers also studied how much participants socialized with their wellness coaches or other people who had been part of their disease self-management program.

Part 2: Researchers created a draft of the personal health record and interviewed doctors in New York City to get feedback on it. They asked doctors whether the information in the record might help with both wellness and medical care and whether the visual display of these records could be improved.

Part 3: The researchers held a workshop for doctors, community health planners, and policy experts to discuss the important elements of a person-centered wellness home for people in underserved communities. Based on information gathered at the workshop, the researchers created a list of important elements that should be part of a person-centered wellness home.

Findings

Part 1: Compared with patients who didn’t get coaching, patients who received coaching

• Improved more in physical functioning
• Were slightly more confident in their ability to improve their health

There was no difference between groups in

• Exercise
• How many and what types of social interactions participants had with other people from their disease management program
• Waist size
• Smoking habits
• Falls
• Depression
• Pain
• Sleep

Part 2: Doctors provided ideas for improving the personal health records’ content (for example, adding space to include reasons why a patient is unable to reach their wellness goals) and format. Doctors also suggested how best to use them. The doctors suggested sharing the record with nurses.

Part 3: According to workshop participants, a person-centered wellness home would

• Listen to the community’s wellness needs and then come up with a strategy to promote wellness
• Work with experts who can help patients get health insurance or connect them to a patient-centered medical home
• Create a directory of community health programs that have been shown to work
• Use community health workers—public health workers with a close connection and clear understanding of the community—to help patients get the wellness care they need
• Use community health workers to find out what each patient already knows—or doesn’t know—about wellness care
• Provide programs led by community health workers that make patients more confident that they can improve their health
• Offer ongoing, effective community programs run by community health workers
• Develop a wellness record that patients can share with their doctors and community health workers

Limitations

Most participants were Hispanic women with low levels of education. The results might be different for other groups of people. The researchers originally planned to provide 24 coaching sessions spread over one year but had to provide the 24 sessions over six months. Participants attended on average almost half of the coaching sessions. Results might be different for people who attended more sessions or had the 24 coaching sessions spread over a year.

Conclusions

Getting wellness coaching after attending a wellness course seemed to help patients improve their physical functioning and their confidence in their ability to improve their health.

Eight components of the person-centered wellness home were identified as important, especially in underserved communities. Older adults living in low-income, minority communities could use trained community health workers to help put many of these components into action. 

Sharing the Results

The researchers will write reports about their findings and share them with South Bronx residents.

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

The enormous burden of multiple chronic diseases is clear in older adults, especially among low-income and underserved minority populations. The researchers hypothesized that extending the patient-centered medical home (PCMH) model of care into the community would encourage person-centered wellness care as well as address the poor linkage between the medical clinics and communities. This project created this linkage by laying the groundwork for a new framework called the Person-Centered Wellness Home (PCWH).

Project Purpose

Aim 1. Evaluate the Stanford Small Group Self-Management Programs (SSGSMP) plus wellness coaching as a booster intervention in older adults with two or more chronic diseases.

Aim 2. Develop Personal Health Records (PHRs) prototype to record self-reported health information and set goals. An additional part of this aim included in-depth interviews on the PHR prototype.

Aim 3. Develop a new wellness framework called the PCWH, which complements the theme of relationship-centered care from the current PCMH model.

Study Design

Aim 1. Researchers conducted a pragmatic randomized controlled trial (RCT) with complete block design using two intervention arms with older adults (n = 121): (1) SSGSMP and (2) SSGSMP plus wellness coaching initiated as a booster after SSGSMP completion. Researchers evaluated the outcomes in the RCT using appropriate general linear models to test directly the joint effects of SSGSMP and the wellness coaching as a booster. Researchers looked at the social networks, ties between wellness coaches and participants, and a simple model of motivation to comply with behavior change at the individual level using a social cognitive theory approach.

Aim 2. Using a list of PCMH–certified physicians and practices registered with the Primary Care Information Project in New York City, researchers purposively selected physicians for 90-minute in-depth interviews (IDIs) to evaluate the utility of the PHR prototype.

Aim 3. An adaptation from the traditional scientific consensus-workshop model was used.

Participants, Interventions, Settings, and Outcomes

Aim 1. In addition to completion of a six-week SSGSMP course, inclusion criteria for participation in the RCT included (1) aged 55 or older, (2) resident of the settings described below, (3) self-report of two or more chronic diseases, (4) cognitively competent, (5) ambulatory (independently or walker/canes), and (6) English or Spanish speaking.

Aim 2. Participants were enrolled from five South Bronx New York City Housing Authority communities.

Participants were either randomized to a control group or to an intervention group. The intervention was a wellness-coaching program provided by certified wellness coaches. These coaches led three separate classes, each class consisting of 24 one-hour conference calls.

Physical activity was the primary outcome of the RCT, measured by the Community Health Activities Model Program for Seniors and by the Behavioral Risk Factor Surveillance System. Secondary outcome measures included medical care questions, waist circumference, smoking status, self-efficacy for exercise scale, count of falls in the past month, and the following Patient-Reported Outcomes Measurement Information System (PROMIS) health domains: depression, fatigue, pain behavior, pain intensity, pain interference, physical function, and sleep disturbance.

Data Sources

Aim 1. For the RCT, participant surveys were completed at baseline, three-month, and six-month time points. A roster method was used for social networking data collection, and data were collected monthly.

Aim 2. Researchers conducted 90-minute IDIs with physicians who were registered with the Primary Care Information Project. These IDIs were conducted using a moderator’s guide, assessing the utility of the information contained in the PHR prototype and the overall appeal of the prototype format. Discussions were audio recorded and transcribed.

Aim 3. The Consensus-Workshop was audio recorded and transcribed for the qualitative analysis.

Data Analysis

Aim 1. RCT data were analyzed using SAS 9.3. Individual growth models were employed to compare the slope differences for each outcome measure between the intervention and control groups. These models were adjusted for age, sex, education, living status, comorbidities, and baseline scores. In the RCT, all members of the data team (including data collectors and analyzers) were blinded to group allocation, and intent-to-treat analyses were conducted. The social networking analysis included network visualizations that were created by NetDraw.

Aim 2. NVivo software was used to conduct a thematic analysis of the IDI transcripts. Key sections of the interviews were sorted into thematic categories and subcategories (comprehension/usability, content, format, usage, and questions).

Aim 3. After the Consensus-Workshop was convened, researchers summarized the highest priority PCWH items that were discussed by the group.

Findings

Aim 1. At baseline, the only difference between the control and intervention groups was that more participants in the intervention group reported living alone. During the RCT, the 61 participants (62 were allocated) in the wellness-coaching intervention differed from the 60 control participants (63 were allocated) in the trend over time for improvement in self-reported physical functioning (1.3 units higher, p = 0.03 on the PROMIS Physical Function SF 20a), but the intervention and control groups did not differ in the trend over time on physical activity. From the social networking analysis, researchers found that connections were fairly stable over time with other wellness intervention and SSGSMP participants.

Aim 2. Physicians provided many valuable suggestions for how to improve PHR prototype usability, content, and format.

Aim 3. The Consensus Workshop identified eight major components of the PCWH: (1) community-based prevention marketing, (2) personal navigators to obtain insurance or connect to a PCMH, (3) catalog of evidence-based programs (EBP) in the community, (4) Community Health Workers (CHW) base the relationship center of the PCWH, (5) assessment of knowledge completed by CHW, (6) build self-efficacy through a primer EBP taught by CHW to change culture of health, (7) ongoing EBP by CHW, and (8) personal health record dashboard.

Limitations

Participants were largely Hispanic and female with low educational attainment levels, so generalizability to other populations is limited. An additional limitation was that the 24-session wellness-coaching intervention had to be condensed from one year to six months. Attendance ranged from 0–22 sessions with a mean attendance of about half (11 sessions).

Conclusions

Wellness coaching post-SSGSMP was a booster to physical function, a plausible upstream outcome for physical activity. Weekly wellness coaching has the potential to be a self-efficacy booster. During the Consensus Conference, community-based prevention marketing (i.e., a framework that uses social marketing for self-management interventions) and personal navigators to obtain insurance or connect to a PCMH emerged as novel components of the PCWH. A community health worker trained in SSGSMP or equivalent evidence-based program is capable of implementing the majority of the remaining PCWH components (three through seven), which can be compensated under the Affordable Care Act. Direct linkage to a PCMH is required only for the personal health record dashboard component, illustrating how community health workers can be cost-effective wellness providers for low-income and disadvantaged communities.