Improving Independent Living Outcomes for Adults with I/DD
The Role of Oral Health and Wellness Devices and mHealth Applications
Authors:
Sean G. Boynes, DMD, MS; President GameShift Healthcare Solutions; Board of Directors Harmony Health; Weirton WV
Helen Hawkey, BS; Executive Director Pennsylvania Coalition for Oral Health; Delmont PA
Jill Malmgren, BS; Executive Director at America's ToothFairy: National Children's Oral Health Foundation; Charlotte NC
Brian Jones, MA; Chief Growth Officer; Avēsis; Alexandria VA
Vanessa Rastović, JD; Disability and Health Policy Director Achieva; Pittsburgh PA
Abstract Adults with intellectual and developmental disabilities (I/DD) transitioning to independent living face unique challenges, particularly in maintaining oral health. This study evaluates the effectiveness of the Oral Genome (Carlsbad, CA) salivary testing device and its accompanying mHealth application in improving oral health outcomes and facilitating independent living. Data from salivary biomarker analyses and surveys utilizing the MAUQ (7-point scale) and Physician Satisfaction Survey Implementation Subscale (5-point scale) were analyzed. The findings demonstrate the system’s potential to enhance self-management of oral health and support integration into independent living settings, contributing to the body of literature on health and wellness technologies for vulnerable populations.
Introduction
Independent living represents a pivotal milestone for adults with intellectual and developmental disabilities (I/DD), providing opportunities for autonomy, personal growth, and community integration. However, the transition to independent living often involves navigating challenges related to health maintenance, daily routines, and access to resources. (1) Oral health is a critical yet frequently overlooked component of this transition. Additionally, poor oral health has been shown to exacerbate chronic conditions, increase hospitalization rates, and contribute to overall healthcare costs, particularly for vulnerable populations. Ensuring adequate oral health care is therefore essential in promoting not only better oral outcomes but also overall health and quality of life for individuals with I/DD. (2) For individuals with I/DD, maintaining oral health is particularly vital, given the high prevalence of co-occurring medical conditions and the potential for oral health to impact overall quality of life.
Despite its significance, oral health management presents unique challenges in independent living scenarios. Barriers include limited access to dental care, inadequate training of healthcare providers to address the specific care of individuals with I/DD, and difficulties in establishing consistent oral hygiene habits. (3-4) A prior analysis found that 85% of caregivers reported that the adults in their care needed help with tooth cleaning, and more than 13% required "hand-over-hand" guidance to brush their teeth effectively, increasing the risk of neglecting oral health. (5) Oral health disparities among individuals with I/DD are well-documented, with barriers including access to care, social and economic barriers, inadequate provider training, and challenges in maintaining oral hygiene habits. Poor oral health is linked to systemic health issues, including cardiovascular disease, diabetes, and respiratory infections, which are particularly prevalent among this population.
Leach (2016) provides a comprehensive overview of housing and independent living for individuals with I/DD, highlighting the systemic barriers to integrating health services, including oral health. (6) Institutional biases and limited funding for community-based services result in disparities in access to dental care. Binkley et al. (2014) underscore the importance of oral hygiene as a fundamental aspect of health that is often overlooked in care plans, particularly for individuals transitioning to independent living. (7) A recent report to the Medicaid and CHIP Payment and Access Commission emphasizes critical gaps in information technology infrastructure within Medicaid systems serving individuals with I/DD, highlighting the limited integration and sharing of health data across care providers. It further underscores the need for robust data systems that support person-centered care, including oral health information, to improve health outcomes and address service disparities. (8) This fragmentation mirrors challenges in oral health management, where isolated systems hinder effective communication and care delivery.
Health and wellness technologies offer a promising solution to these challenges. Devices that integrate diagnostic tools with educational and behavioral support can empower individuals to take ownership of their oral health. By providing real-time insights into oral health status through biomarkers and personalized feedback, the system supports the development of sustainable oral hygiene habits. Health and wellness devices, particularly those that integrate diagnostic capabilities with user-friendly applications, present a transformative opportunity for improving care. By combining biomarker analysis with mHealth capabilities, these technologies not only enhance the understanding of oral-systemic health but also empower individuals with actionable insights. For adults transitioning to independent living, these tools can mitigate risks, establish sustainable habits, and reduce the burden on caregivers and healthcare systems.
This study explores the potential of the Oral Genome (Carlsbad, CA) salivary testing system and mHealth application to enhance oral health outcomes and foster independence among adults with I/DD. (9-10) By addressing critical gaps in care and leveraging data-driven insights, the system aims to improve the quality of life for this population. The findings contribute to the broader discourse on integrating health and wellness technologies into independent living frameworks, highlighting the role of oral health as a cornerstone of holistic well-being.
“Whatever it is, the way you tell your story This study explores the potential of the Oral Genome (Carlsbad, CA) salivary testing system and mHealth application to enhance oral health outcomes and foster independence among adults with I/DD. ”
Methods
The study involved 18 participants with intellectual and developmental disabilities (I/DD) from supported living facilities in Pennsylvania. Participants were recruited based on their transition readiness and ability to participate in the project, ensuring that each individual understood the nature of the study and consented to participate. Baseline characteristics of participants included a mean age of 27.7 years (ranging from 19-34 years), with 44.4% identifying as male and 55.6% as female. Most participants had moderate levels of support needs based on caregiver assessments. 55.6% of participants identified as White, 33.6% as Black or African American, 5.6% as Asian or Pacific Islander, and 5.6% selected "Other" or preferred not to disclose. Additionally, 16.7% identified as having Hispanic or Latino heritage. Due to the small sample size, conducting robust variable analyses based on age or race/ethnicity was not feasible, limiting the ability to assess potential subgroup differences.
While participants were individuals receiving services from a program focused on fostering independence and self-advocacy for individuals with I/DD, the sample may not fully represent the broader I/DD population. Factors such as socioeconomic status, caregiver access, and cognitive variability were not controlled, and participants had engagement with structured support services that may not reflect those with fewer resources. These limitations impact generalizability, highlighting the need for future studies with more diverse samples across different living arrangements and socioeconomic backgrounds.
Salivary Testing System
The Oral Genome salivary testing system played a central role in the intervention, offering a comprehensive point-of-care diagnostic platform. This system uses non-invasive salivary sampling to assess key biomarkers related to oral and systemic health. Participants provided salivary samples biweekly, which were analyzed for the following primary biomarkers:
Glucose: An indicator of metabolic dysregulation and a potential marker for diabetes risk.
pH Levels: Reflecting the oral environment, with lower pH values associated with increased caries risk.
Porphyromonas gingivalis (P. gingivalis): A bacterial marker commonly linked to periodontal disease. Periodontal disease, also known as gum disease, is an infection of the gums and bone that support your teeth. It starts with plaque (a sticky film of bacteria) building up on your teeth and can lead to swollen, bleeding gums, bad breath, and, if left untreated, tooth loss.
Matrix metalloproteinase-8 (MMP-8): A biomarker associated with periodontal inflammation and tissue breakdown.
The testing system provided real-time feedback, integrating biomarker results into personalized reports through the accompanying mHealth application. This approach enabled early identification of elevated risk levels for oral diseases and systemic conditions such as diabetes, guiding timely interventions.
mHealth Application
The mHealth app served as a digital companion to the Oral Genome testing system, facilitating continuous monitoring and patient engagement. The app included multiple features designed to support behavior modification and preventive care:
Caries Risk Assessment Tools: These tools evaluated factors such as salivary pH, biomarker levels, dietary habits, and brushing frequency to categorize individuals into low, rising or moderate, or high caries risk categories.
Diabetes Screening Tools: By analyzing glucose levels in saliva alongside self-reported family history and behavioral risk factors, the app provided preliminary assessments and flagged participants who may benefit from additional screening.
Personalized Insights and Recommendations: Based on salivary test results and behavioral data, the app generated actionable recommendations, including reminders for oral hygiene practices, dietary adjustments, and follow-up visits with healthcare providers. Educational prompts were tailored to empower individuals and caregivers to make informed decisions about their oral health and overall well-being.
Data Collection and Analysis
Behavioral data were collected via structured questionnaires integrated within the mHealth app, covering factors such as frequency of snacking (frequent eating, prolonged exposure, sugary/starchy intake, acid attack trigger, non-meal eating), timing of recent dental visits, family medical history, and adherence to brushing practices. The salivary biomarker data and behavioral information were automatically synchronized to a centralized database for analysis.
Statistical Analysis
Statistical analysis was performed using Python and SPSS. The following methodologies were applied:
Descriptive Statistics: Continuous variables such as glucose and pH levels were summarized using means, standard deviations, and ranges.
T-Tests and ANOVA: These tests were conducted to evaluate variations in biomarker levels across subgroups based on factors such as age, gender, and living arrangements.
Chi-Square Tests: Categorical data, including risk classifications and behavioral habits, were analyzed to identify associations between biomarker outcomes and participant characteristics.
Repeated Measures ANOVA: Longitudinal changes in key biomarkers over the course of the study were assessed to detect significant trends and intervention effects.
Correlation Analysis: Behavioral factors such as snacking frequency and brushing adherence were correlated with biomarker risk levels to explore behavioral determinants of oral health outcomes.
This comprehensive methodological approach ensured that the study captured both biological and behavioral dimensions of oral health, providing actionable insights to guide future interventions and personalized care strategies. This project was reviewed and approved by Sterling IRB.
Results
Behavioral Insights
The behavioral insights gathered from the study were obtained through the integrated mHealth application, which combines user-reported data with evidence-based assessment tools. This app incorporates and aligns with the American Dental Association (ADA) Caries Risk Assessment (10) and the American Diabetes Association Risk Assessment Tool (12) to provide a comprehensive evaluation of both oral and systemic health risks. A significant 60% of individuals reported frequent snacking between meals, a behavior that was strongly correlated with a heightened risk of dental caries (p < 0.01). Additionally, 45% of participants had not visited a dentist in over a year, and this group demonstrated notably higher glucose and pH risk levels (p < 0.05), suggesting that irregular dental visits may contribute to poor oral health outcomes. Self-reported family medical history also played a critical role, as participants with a family history of diabetes exhibited elevated glucose levels, underscoring the necessity of integrating systemic health considerations into comprehensive oral health strategies. Furthermore, brushing habits revealed concerning trends, with only 35% of participants adhering to the recommended practice of brushing at least twice daily for two minutes. This inadequate oral hygiene was significantly associated with increased levels of Porphyromonas gingivalis and poor pH balance (p < 0.01), both of which contribute to periodontal disease progression. These findings emphasize the need for targeted behavioral interventions that address dietary habits, encourage regular dental visits, and promote consistent oral hygiene practices while considering the impact of systemic health conditions.
Biomarker Analysis
Glucose Levels: The mean glucose value was 1.6 mg/dL (±0.9), with 75% of participants classified as low risk based on reference values indicating salivary glucose levels below 2.0 mg/dL are generally considered non-elevated in normoglycemic individuals. Significant differences were observed between individuals living independently and those in shared accommodations (p < 0.05), suggesting lifestyle factors influence metabolic biomarkers.
pH Levels: Mean pH value was 6.2 (±0.3). Normal salivary pH typically ranges between 6.7 and 7.4, with values below 6.5 indicating an increased risk for acid erosion and demineralization, reinforcing the correlation between dietary habits and acidogenic potential. Participants with high caries risk demonstrated significantly lower pH levels (p < 0.01), indicating a correlation between dietary habits and acidogenic potential.
P. gingivalis: Elevated levels were detected in 20% of participants, with higher prevalence among those with inadequate brushing frequency (p < 0.05). While no universally accepted threshold exists for pathogenic P. gingivalis levels in saliva, benchmarks suggest its presence at >10^5 CFU/mL is indicative of increased periodontal disease risk.
MMP-8 Levels: The mean value was 55.7 ng/mL (±12.3), with 80% of participants falling within optimal ranges. Research indicates that salivary MMP-8 levels below 20 ng/mL are generally associated with healthy periodontium, whereas values exceeding 50–80 ng/mL suggest active periodontal inflammation. Significant reductions in MMP-8 were noted over 12 weeks (p < 0.01), highlighting the intervention’s effectiveness in mitigating periodontal degradation.
Usability and Satisfaction
The usability of the Oral Genome mHealth application was assessed using the Mobile Application Usability Questionnaire (MAUQ) (13) and a custom Physician Satisfaction Survey focused on the ease of implementation subscale (14). The MAUQ evaluates user experience across dimensions such as ease of use, learning, navigation, and overall satisfaction, using a 7-point Likert scale. The Physician Satisfaction Survey captures feedback on implementation, clinical efficiency, and alignment with diagnostic processes, using a 5-point scale. These tools provide a comprehensive understanding of both end-user and clinician perspectives.
Participants rated the app’s ease of use highly, with a mean MAUQ score of 6.8/7. Key features such as reminders and data visualization received significant praise, while navigation consistency was rated 6.7/7. Feedback adequacy and interpretability scored slightly lower, with averages of 6.5 and 5.8 respectively, highlighting areas for potential improvement, especially for users with cognitive challenges.
Comparatively, similar mHealth applications for chronic disease management, such as diabetes tracking apps, report MAUQ ease-of-use scores ranging from 6.0 to 6.4, suggesting excellent usability and indicating a user-friendly experience. Moreover, alignment with clinical diagnoses and feedback adequacy reflects parity with established apps, emphasizing the system’s competitive performance in the healthcare technology space.
Physicians reported an 85% satisfaction rate with system implementation, and 70% noted significant improvements in clinical efficiency. While alignment with clinical diagnoses was rated neutral to positive, 25% of respondents suggested further calibration of the app’s analytics for greater accuracy. These insights align with satisfaction rates for other mHealth platforms, where implementation ease often scores between 75% and 80% among healthcare providers.
Here is the table summarizing the MAUQ and Satisfaction Survey results:
These findings highlight the Oral Genome system’s robust usability and acceptance, exceeding benchmarks for similar technologies. While areas for improvement remain, particularly in feedback interpretability, the high overall satisfaction scores among both users and clinicians underscore its potential to enhance oral health outcomes and support independent living.
Longitudinal Trends
Analysis of longitudinal data revealed distinct patterns in the improvement of pH and MMP-8 biomarkers over the course of the 12-week intervention. Participants demonstrated significant progress in the increase of their pH levels, with 40% transitioning from high-risk to moderate or low-risk categories by week 12. This improvement is statistically significant (p < 0.05), reflecting the relatively quick response of oral acidity to dietary modifications and adherence to oral hygiene protocols facilitated by the mHealth app.
In contrast, MMP-8 levels exhibited a more gradual decline over the same period. While the mean MMP-8 value decreased steadily from 70 ng/mL to 55 ng/mL, the change did not achieve statistical significance for the pilot population of 18 participants (p > 0.05). This outcome is consistent with the biological nature of MMP-8, a biomarker associated with periodontal degradation, which requires sustained intervention to show marked improvements. The extended timeline for MMP-8 reduction underscores the importance of long-term adherence to oral health practices for mitigating periodontal risks.
The differential rates of improvement between pH and MMP-8 highlight the multifaceted nature of oral health management. While pH levels can respond relatively quickly to changes in diet and hygiene with fluoride, reflecting short-term modifications in the oral environment, MMP-8 levels necessitate prolonged and consistent efforts. The significant improvement in pH levels suggests a relatively rapid response to dietary modifications and improved oral hygiene, as salivary pH is sensitive to changes in food intake and brushing frequency. (15) In contrast, the downward trend in MMP-8, while not statistically significant within the 12-week period, aligns with the longer biological response required for periodontal health improvements. (16-17) Future studies with longer follow-up durations may better capture the full impact of behavioral changes on periodontal health. These findings emphasize the need for tailored interventions that account for both immediate and long-term goals in oral health maintenance.
Other biomarkers analyzed included glucose levels and P. gingivalis presence, both of which demonstrated positive trends. Mean glucose levels decreased modestly from 1.8 mg/dL to 1.6 mg/dL, with 75% of participants maintaining low-risk profiles throughout the study. P. gingivalis levels exhibited reductions in 20% of participants initially classified as high-risk, suggesting enhanced adherence to brushing protocols and reduced microbial loads. While these improvements did not achieve statistical significance (p > 0.05), they highlighted the potential of the intervention to promote incremental but meaningful changes in overall oral health.
Discussion
The findings of our analysis underscore the transformative potential of health and wellness devices in supporting the transition to independent living for adults with I/DD. The Oral Genome system’s dual functionality—diagnostic precision and educational support—addresses key barriers to oral health management. By providing actionable insights and fostering autonomy, the system aligns with person-centered care principles. (6,18-19)
The behavioral insights highlight critical areas for intervention. Frequent snacking, irregular dental visits, and inadequate brushing habits contribute significantly to caries risk and periodontal degradation. These behaviors are often shaped by environmental and educational factors, underscoring the need for comprehensive, tailored support.
The implications extend beyond oral health. Improved biomarker profiles suggest potential benefits for systemic health, reducing healthcare costs associated with preventable conditions. Additionally, the system’s scalability and adaptability make it a viable solution for broader public health initiatives. Future research could explore integrating additional biomarkers, to provide a more comprehensive view of oral and systemic health. Longitudinal follow-up beyond the 12-week period is necessary to evaluate the sustainability of behavioral changes and long-term health outcomes.
Usability and Satisfaction with Health Technologies
The significance of usability and user satisfaction in health technologies is well-documented. High usability scores are associated with sustained engagement and adherence to health interventions. For instance, the development of the "Experienced Usability and Satisfaction with Self-monitoring in the Home Setting" (GEMS) questionnaire underscores the importance of usability in patient engagement with digital health solutions. (20) Similarly, the usability testing of the PACE-App, designed to support family caregivers in managing pain for individuals with dementia, demonstrated that favorable usability and strong satisfaction among users can enhance the effectiveness of health interventions. (21) These findings align with the MAUQ and Physician Satisfaction Survey results from this study, which demonstrates the user-friendly nature of the Oral Genome system and its positive reception by both individuals with I/DD and healthcare providers.
Behavioral and Educational Interventions
Research consistently highlights the importance of tailored educational interventions in improving health outcomes for individuals with intellectual and developmental disabilities (I/DD) by addressing unique behavioral and environmental challenges. (4) Tailored interventions that provide personalized feedback are more effective in driving long-term behavior change, particularly when combined with accessible digital health solutions. Studies emphasize that health promotion efforts among individuals with I/DD require user-centered approaches to address barriers such as limited health literacy and environmental inequities, which often restrict their access to conventional health programs. (22-23)
The Oral Genome mHealth application integrates personalized feedback mechanisms and educational prompts based on real-time data from salivary testing, allowing for dynamic, behavior-specific interventions. By providing users with actionable insights on oral health and overall well-being, such as reminders for oral hygiene practices or dietary modifications, the application addresses key determinants of health, including health literacy and self-efficacy. This integration aligns with broader findings that sustained behavioral improvements are most successful when interventions are adapted to individual needs and supported by educational feedback. (4,24-27) Through this personalized approach, the Oral Genome system enhances its effectiveness as a behavioral tool, empowering individuals to take control of their oral health.
Biomarker-Driven Oral Health Management
Biomarker-Driven Oral Health Management utilizes measurable biological indicators, such as salivary pH, glucose, and inflammatory enzymes like MMP-8, to assess oral and systemic health risks. By integrating biomarker data with digital health tools, individuals receive personalized feedback, enabling early intervention and targeted preventive care. This method enhances traditional oral health management by providing objective, real-time insights that support both patients and healthcare providers in making informed decisions. The findings emphasize the critical roles of pH and matrix metalloproteinase-8 (MMP-8) in oral health management, particularly for individuals with intellectual and developmental disabilities (I/DD). Salivary pH reflects the balance between demineralization and remineralization, with acidic environments increasing the risk of dental caries. (28-29) In this study, participants demonstrated significant improvements in pH levels (p < 0.01) within 12 weeks, attributed to dietary changes and improved brushing protocols. Elevated pH creates an alkaline environment conducive to enamel remineralization and reduced microbial acid production, which aligns with evidence showing that pH modulation effectively mitigates caries risk.
MMP-8, a biomarker associated with periodontal disease, reflects collagen breakdown and inflammation. (30) Although participants showed a gradual decrease in MMP-8 levels (mean reduction from 70 ng/mL to 55 ng/mL), the change was not statistically significant (p > 0.05) within the study period, emphasizing the need for sustained oral hygiene practices and long-term interventions. Managing pH for short-term benefits while targeting MMP-8 reduction over time presents a dual strategy for mitigating both caries and periodontal risks. Given the connection between periodontal disease and systemic health conditions, this integrated approach can contribute to improved overall health outcomes for individuals with I/DD.
Challenges and Limitations
The small sample size of 18 participants, limited to a specific population of individuals with intellectual and developmental disabilities (I/DD) in supported living facilities in Pennsylvania, restricts the generalizability of the findings. As a small pilot study, the results should be interpreted with caution, and future research with larger, more diverse populations across different regions is necessary to validate the outcomes and assess scalability.
Some participants experienced difficulties interpreting test results independently, necessitating additional caregiver involvement. Given that the pilot site already integrates mHealth applications and screening tools into routine care, site leadership determined that the device and process fell within the scope of its standard consent procedures for healthcare management. As such, participants or their legal representatives provided consent in alignment with existing protocols, ensuring that individuals requiring caregiver assistance had appropriate support. Furthermore, behavioral data on dietary habits and oral hygiene practices were self-reported, which introduces the potential for recall bias and over- or under-reporting. Future studies should consider objective measures, such as electronic brushing monitors or dietary logs, to enhance the accuracy of behavioral assessments. This highlights the need for more intuitive interfaces and simplified result explanations to improve usability for individuals with varying cognitive abilities. The app’s reliance on internet connectivity posed significant barriers, particularly in rural settings where reliable access may be limited. Future iterations should prioritize offline functionality to enhance accessibility.
A key limitation of this study is the lack of longitudinal tracking of behavioral changes over the 12-week period. While self-reported dietary and oral hygiene habits were collected at baseline, the study did not include follow-up assessments to evaluate potential shifts in behavior over time. Future research should incorporate repeated measures or objective tracking tools to assess whether the intervention leads to sustained improvements in oral health behaviors. Additionally, the study did not extensively explore the long-term sustainability of behavioral changes beyond the 12-week intervention period. Further studies should incorporate follow-up assessments to determine the persistence of improvements and identify potential relapse points. Enhanced educational content tailored to cognitive abilities, along with caregiver training, may also be necessary to ensure long-term adherence and success.
Conclusion
The Oral Genome salivary testing device and mHealth application represent a significant advancement in health technology for individuals with I/DD. By addressing oral health disparities and fostering independence, the system contributes to the broader goals of health equity and person-centered care. The observed improvements in pH and potential long-term impact on MMP-8 highlighted its effectiveness, though challenges such as small pilot size and the need for caregiver support warrant further exploration. Ongoing research and development will be critical in optimizing its impact, ensuring accessibility, and adapting the system for larger-scale public health programs. Its potential to address oral health disparities and reduce healthcare burdens suggests its applicability not only for individuals with I/DD but also for other underserved or high-risk populations.
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Conflict of Interest:
The pilot program was funded and conducted in collaboration with America’s ToothFairy, the Pennsylvania Coalition for Oral Health, Achieva, and Harmony Health.
Dr. Sean Boynes is a paid contractor for Oral Genome evaluating business and community development as well as research and analytics.
About the Authors:
Dr. Sean Boynes is a parent disability advocate and President of GameShift Healthcare Solutions, LLC and serves on the Board of Directors of Harmony Health Foundation in Weirton, WV
Helen Hawkey serves as the Executive Director for the PA Coalition for Oral Health, a statewide and community non-profit organization focused on increasing oral health care access for all.
Jill Malmgren is the Executive Director of America’s ToothFairy and serves on the Board of Directors for People Advocating for Optimal Health.
Brian Jones is an advocate for patients with special needs and serves as the Chief Growth Officer of Avesis, an oral and eye healthcare organization. He also serves on the Board of Team Smile.
Vanessa Rastovic' is a universal inclusion advocate and is the Policy Manager, Disability Healthcare Initiative for The Arc of Greater Pittsburgh / Achieva in Pittsburgh, PA.