Oral Health Partnership Core Group Meeting April 21, 2017 Seven Hills Foundation and Tufts University School of Medicine

Agenda – April 21, 2017 Introductions Communication plan update Peter Demko Research question identification John Morgan Tier II – Tier III transition and next steps Paula Minihan

Research Question Overview National PCORI goal Determine which of the options available to patients (and health professionals who care for them) work best Individual PCORI project goals Identify gaps in knowledge about best ways to prevent or treat an important health problem Propose a research question (evidence-based) to fill information gap PICOTS framework Population Intervention Comparisons Outcomes Time period Setting

Research Questions from March 17th Meeting (PICOTS) Group A Intervention: Monitor toothbrushing at home Outcome: Reduction in caries Comparison: Compare adults with and without toothbrushing monitoring at home Group B Intervention: Reduce behavioral barriers to dental visits through patient-focused interventions (e.g., systematic desensitization) Outcome: Increase % patients with at least 1 dental cleaning/year Comparison: Compare adults with and without intervention Group C Dental varnish applications at least 2 times/year Outcome: Decrease in caries over time Comparison: Compare adults with at least 2 varnish applications/year with those without

Tooth Decay (Dental Caries) U.S. general population of dentate adults aged 20 or older (U.S. CDC) Approximately 91% had caries experience (at least one cavity) 23% had untreated caries Adults with intellectual and developmental disabilities in Massachusetts aged 20 or older with access to dental care* (Morgan et al 2012) 87.8% of dentate adults had caries experience 32.2% of dentate adults had untreated caries *4.6 preventive dental visits during study year

Cause of Tooth Decay For tooth decay to occur, bacteria (plaque) use sugars in your diet to produce acids which dissolve the tooth surface.

What Factors Can Modify Tooth Decay Process Saliva Frequency of sugar intake (diet, beverages, nutritional supplements, medications) Fluoride use Drinking fluoridated water Brushing with fluoridated toothpaste Having dental professionals apply fluoride

Caries - Adults with IDD What Can We Influence ? Community Access to dental care; Public policies, laws; regulations; Fluoridation Family/caregivers Competing demands; Oral health roles; Adaptive tools , Patients Level of disability; Anatomical considerations; Medications; Diet (sugar); Ability to cooperate with dental visits; Oral home care Caries - Adults with IDD

Scientific Evidence for Prevention of Tooth Decay/Caries PCORI requires we use evidence-based information to develop our research question Summary No studies to show effective prevention of caries in those with intellectual and developmental disabilities (IDD) Should we consider the evidence for prevention of caries in those without IDD ? What evidence do we have?

Studies – Evidence about Preventing Decay Children Fluorides prevent decay in children Toothpaste, rinses used at home are effective Gels and varnishes applied by dental professionals are effective Chronic disease management strategies - working with parents and caregivers – prevent early childhood caries Few studies for effective use of fluorides in adults Recent fluoride studies/medically compromised Veterans Self applied or professionally applied fluoride reduced caries No studies for fluoride use in those with disabilities No studies for chronic disease management in adults with disabilities

Chronic Disease Management (CDM) Interventions Package of strategies that – combined together - might help prevent or manage a disease Focus on health conditions in which patient’s/caregiver’s personal behaviors have major influence on disease process Preventive home care key Examples: Diabetes, Childhood asthma, Early childhood caries Approach is multi-disciplinary Involves community resources and supports Can involve clinical interventions like fluoride varnish application

CDM of Dental Caries: Prevents Early Childhood Caries CDM strategies reduced new cavities, dental pain, and referrals to OR in children compared to baseline (i.e., experiences before enrolling in research study). Relies on patient-specific prevention and focused management of the disease (diet, brushing, flossing, plus motivational interviewing and other caregiver supports) in addition to repairing/restoring teeth Individual Risk Assessment Examples: MySmileBuddy: IPad-based behavioral, family-based intervention to eradicate ECC ECC Collaborative

CDM of Dental Caries ECC Collaborative Pediatric hospital dental clinic-based (up to age 5) Caries risk assessment Effective communication with parents/hygienist Self-management goal setting/hygienist Caries charting Fluorides/remineralization strategies Restorative treatment Risk-based recare intervals MySmile Buddy Pediatric dental clinic-based (ages 2-6) Standard of care at clinic Technology-assisted ECC risk assessment & behavioral intervention tool (iPads) with families Diet, feeding practices, attitudes, fluoride, family hx Lay health worker and family create self-defined plan to reduce ECC risk Lay health worker provides community-based family support and monitoring using iPad interactive programming

Other Evidence Four studies have demonstrated that training caregivers in oral hygiene practices for adults with IDD was effective in improving daily oral hygiene practices Not known if improved daily oral hygiene translated into improved oral health outcomes

What is Best Way Forward Use the scientific evidence that is available and apply and tailor it to address the needs and circumstances of adults with IDD

Tier II – Tier III Transition and Next Steps Tier II Final Report and related documents due May 31 Communication Plan State, Regional, National Stakeholder document CER Question Governance document Tier III Proposal and Workplan due May 31 Tier III awardees announced mid-July Tier III begins August 1