More Healthy Days, Better Quality of Life: New Findings from Epilepsy Foundation New England’s EQOL Program
New survey results highlight encouraging improvements in health-related quality of life for people with epilepsy receiving support through EFNE’s EQOL initiative.
Living with epilepsy can affect more than physical health. It can also influence emotional well-being, daily activities, and a person’s ability to participate fully in work, recreation, and everyday life. Access to education, personalized support, and coordinated care can help people navigate these challenges and improve their overall quality of life.
New findings from Epilepsy Foundation New England’s (EFNE) Improving Quality of Life for People Living with Epilepsy through Multi-Sector Partnerships (EQOL) initiative offer encouraging evidence of progress. According to the program’s Year 5 Healthy Days assessment, many participants reported more healthy days and fewer days affected by poor physical health after receiving program services.
Measuring What Matters: More Healthy Days
Launched in September 2021 with funding through a cooperative agreement with the Centers for Disease Control and Prevention (CDC), EQOL works to strengthen health systems and improve quality of life for people living with epilepsy throughout New England.
The program connects individuals and families with resources, education, care management, and community support through Epilepsy Resource Rooms at two participating hospitals: the Children’s Neurodevelopment Center at Hasbro Children’s Hospital in Providence, Rhode Island, and Brigham and Women’s Hospital in Boston, Massachusetts.
Trained community health workers (CHWs) help clients navigate healthcare and community resources, connect with epilepsy self-management programs, and access support tailored to their needs.
To better understand how clients experience their health over time, EFNE introduced the CDC’s Healthy Days survey in Year 4 of the initiative. The brief, four-question assessment asks participants to reflect on their general health, physical health, mental health, and the extent to which health challenges interfere with their usual activities.
The primary measure is the number of healthy days in the past 30 days. By tracking days affected by poor physical or mental health, the assessment offers a practical way to understand changes in health-related quality of life.
Key Finding: Participants Reported More Healthy Days
The Year 5 analysis found a statistically significant increase in healthy days among clients who completed surveys at both the beginning of services and follow-up.
Of the 29 clients included in the analysis:
- 62% reported more healthy days at follow-up.
- 17% reported no change.
- 21% reported fewer healthy days.
The median number of healthy days increased from 18 per month at baseline to 22 at follow-up. On average, participants reported approximately four additional healthy days per month.
This improvement was statistically significant, suggesting that the increase was unlikely to be due to chance alone under the statistical test used.
For people living with epilepsy, more healthy days can represent meaningful progress in day-to-day well-being. While the survey does not explain the reasons behind each participant’s experience, these findings offer a positive indication of improved perceived health among clients with matched assessments.
Fewer Days Affected by Poor Physical Health
The assessment also revealed a significant improvement in participants’ reported physical health.
More than half of the clients (55%) reported fewer physically unhealthy days at follow-up. Nearly one-quarter (24%) reported no change, while 21% reported more days when their physical health was not good.
The median number of physically unhealthy days decreased from three days per month to one. This change was statistically significant.
These results highlight an important dimension of quality of life: how people feel physically over the course of a typical month. Although the survey does not establish what drove these changes, the findings are consistent with a positive shift in participants’ perceived physical health during the period they received EFNE services.
Mental Health and Daily Activities Remain Important Priorities
Health-related quality of life extends beyond physical well-being. Mental health and the ability to participate in everyday activities are also important parts of living well with epilepsy.
The mental health findings were mixed. Just over half of participants (52%) reported fewer mentally unhealthy days, 17% reported no change, and 31% reported more mentally unhealthy days. The median decreased from six days per month to five, but the overall change was not statistically significant.
Participants also reported changes in how often health problems prevented them from participating in usual activities, including self-care, work, and recreation.
At follow-up, 45% reported fewer days when their health limited their usual activities, 38% reported no change, and 17% reported more days with limitations. The median decreased from two days to zero, although this change was not statistically significant.
These findings underscore the importance of continuing to address the many dimensions of health and well-being. They also demonstrate why ongoing assessment matters: understanding where people are making progress, where challenges persist, and where additional support may be needed can help inform future program efforts.
How EQOL Supports People Living with Epilepsy
At the heart of EQOL is a commitment to connecting people with the services and support they need to manage epilepsy and improve their quality of life.
Through its hospital-based Epilepsy Resource Rooms, the program brings together healthcare providers, community health workers, and community resources to help make care more coordinated and accessible.
CHWs provide individualized care management, education, referrals, and connections to epilepsy self-management programs and other community supports. By serving as a central point of connection, the Resource Rooms help clients navigate available services and identify resources that may support their individual needs.
The Healthy Days findings provide encouraging insight into the experiences of clients receiving these services. While the evaluation cannot establish that EQOL alone caused the improvements, the results reinforce the value of measuring health-related quality of life alongside other program outcomes.
Understanding the Results
The findings are promising, but they should be interpreted with care.
The analysis included 29 clients who completed both baseline and follow-up surveys. Although 92 clients completed baseline surveys, only 32% had matched follow-up data available for analysis by September 29, 2026. Follow-up timing also varied among participants.
Because the matched sample was relatively small, it may not reflect the experiences of all EQOL clients. In addition, the evaluation did not include a comparison group, so the observed improvements cannot be attributed solely to participation in the program.
Even with these limitations, the results offer valuable information about participants’ reported health experiences during the period they received services.
Looking Ahead: Building on Progress
Improving quality of life for people living with epilepsy requires more than medical care alone. It also means helping individuals access information, navigate services, manage health challenges, and connect with support that meets their needs.
EFNE’s Year 5 Healthy Days findings offer an encouraging picture of progress. Among the 29 clients with matched surveys, nearly two-thirds reported more healthy days, and participants experienced a statistically significant reduction in days affected by poor physical health.
The findings also highlight opportunities to continue focusing on mental health and participation in everyday activities, areas where individual experiences varied and overall changes were not statistically significant.
As EFNE continues its work to strengthen partnerships across healthcare and community settings, these insights can help inform ongoing efforts to support people living with epilepsy.
Every healthy day matters. Through collaboration, accessible resources, and person-centered support, EFNE’s EQOL initiative continues to work toward a future in which people living with epilepsy have greater opportunities to manage their health, participate in daily life, and thrive.
Source: Epilepsy Foundation New England, Improving Quality of Life for People Living with Epilepsy through Multi-Sector Partnerships (EQOL), Year 5 Healthy Days Survey: Results Summary. Prepared by Pamela Kelley, PhD, October 19, 2026.