Find State ESMs

Measure Status: Active

Evidence Level: Emerging. Aligns with MCHbest strategy "Training/Educating Youth". Find other NPM 12 patient/youth-level strategies in MCHbest.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Direct services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: By 2025, 60% of young adults with medical complexity (YAMC) or their families enrolled in transfer of care intervention will participate in their scheduled preparation appointments.

Numerator: Number of enrolled YAMC patients/their families who participate in at least one of their preparation-to-transfer appointments.

Denominator: Number of enrolled YAMC patients/their families.

Significance: Patient/family engagement is an implementation characteristic that will affect the success of the intervention. This measure tracks patient/family engagement in the transition intervention. We are using a quality improvement framework for this work. Therefore, if patients/families are not engaging in our intervention, we will take steps to modify the intervention to increase its acceptability to the targets of the intervention.

Data Sources and Data Issues: The data source for this ESM is the Children with Medical Complexity (CMC) CoIIN project process tracking form. We established objectives at the time of block grant writing (June 2020). We are still learning how COVID-19 is affecting our partner’s ability to implement our CMC CoIIN quality improvement primary care clinical project and, as a result, may have to adjust our objectives in the future.

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: Emerging. Aligns with MCHbest strategy "Provider Training/Workforce Development" . Find other NPM 12 provider-level strategies in MCHbest.

Measurement Quadrant: Quadrant 1: Measuring quantity of effort (counts and "yes/no" activities)

Service Type: Enabling services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to professionals

Goal: Increase the number of providers who address transition to adult health care in their practice

Numerator: The number of providers who address transition to adult health care in their practice

Denominator: Count

Significance:

Data Sources and Data Issues: Health care transition planning is important as all teens should receive quality health care that is appropriate for their age. Teens should not go through a period of time without a primary care provider. Losing access to primary care, even for a short time, can affect the long-term health of a teen with special health care needs. Center for Health Care Transition Improvement, Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Health.

Year: 2021

Unit Type: 300, Unit Number: CSHCN Program, Oklahoma Department of Human Services & SoonerSuccess

Measure Status: Active

Evidence Level: Emerging. Aligns with MCHbest strategy "Training/Educating Youth". Find other NPM 12 patient/family-level strategies in MCHbest.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Enabling services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: The goal is to utilize school based presentations to increase awareness and knowledge regarding the importance of and process of transition into adult healthcare.

Numerator: Number of students and/or parents who indicate increased knowledge about the importance of transition after presentations.

Denominator: Number of students and/or parents who attend transition presentations.

Significance: Healthcare transition is defined by the American National Alliance to advance adolescents healthcare as the process of changing from a pediatric to an adult model of health care. This is critical for ensuring continuity of care and prioritization of key factors for health improvement. The benefits of transition include preparing the adolescent early for taking responsibility for his care by knowing his own condition, progress, medications and possible disease outcome.

Data Sources and Data Issues: A survey instrument will be utilized to collect data for report on this measure.

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: There is limited research in the evidence base for this NPM to support this strategy.

Measurement Quadrant: Quadrant 2: Measuring quality of effort (% of reach; satisfaction)

Service Type: Systems level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities related to systems-building

Goal: Developmental. Please refer to Significance box for Notes.

Numerator: Developmental. Please refer to Significance box for Notes.

Denominator: Developmental. Please refer to Significance box for Notes.

Significance: Due to the COVID-19 public health emergency, development of the new local MCAH Scope of Work, which will align with the 2021-25 action plan, has been delayed. Since this objective relies on information from the Scope of Work, it will be finalized after the Scope of Work is developed and vetted with local MCAH programs. The final measure will be submitted with next year’s Title V report.

Data Sources and Data Issues: Developmental. Please refer to Significance box for Notes.

Year: 2021

Unit Type: Count, Unit Number: 1

Measure Status: Active

Evidence Level: No similar strategy found in the established evidence for this NPM. See similar ESMs for this NPM.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Enabling services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: To increase the percent of adolescents with and without special health care needs who have received the services necessary to make transitions to adult health care.

Numerator: Number of individuals ages 14 through 21 receiving transition assessments in SHS multidisciplinary clinics annually.

Denominator: Number of individuals ages 14 through 21 served in SHS multidisciplinary clinics annually.

Significance: While North Dakota continually strives to improve upon transition, the state continues to trend below the national average on transition-related measures. This ESM focuses on ensuring TRAs are being completed by clinic grantees making it significant as it will provide valuable data to indicate the number of TRAs that are being completed within the clinics. This data will aid in determining the impact of these assessments, reveal any barriers or obstacles young adults are facing while in the transition phase, and will aid in activity and strategy development for stakeholders in North Dakota. Establishing, enhancing, and continuously building upon TRA processes by making evidence-based decisions will aid in process improvement and drive change to ensure all steps that are necessary for transition are being adequately addressed by clinic staff. Ensuring all clinic grantees are not only completing transition assessments with the child but taking the opportunity to provide transition education and address areas of concern is essential to certify young adults have the ability and confidence to take charge of their own health and develop a unique plan of care tailored to their own needs.

Data Sources and Data Issues: The North Dakota Department of Health. Division of Special Health Services (SHS). SHS will utilize State Fiscal Year Data as reported by SHS contract grantees to determine the number of transition assessments that were completed within the clinic for individuals ages 14 through 21.

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: Emerging. Aligns with "Training/Educating Youth". Find other NPM 12 youth-level strategies in MCHbest.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Enabling services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: Increase the percentage of children with special health care needs who report the transition plans assisted them (report a change in knowledge, skills or behavior) in transitioning to adulthood.

Numerator: Number of youth and adolescents with an active transition plan who report positive outcomes on stakeholder work group survey.

Denominator: Number of youth and adolescents surveyed.

Significance: Having a transition plan is critical for services to be seamlessly transferred to adult-serving providers. There is strong, recent evidence as summarized by the literature in Jones et al. (2017) and Lemke et al. (2018) that speak to the importance of sharing the plan with youth and families and for having a transition policy within a practice: Jones, M. R., Robbins, B. W., Augustine, M., Doyle, J., Mack-Fogg, J., Jones, H., & White, P. H. (2017). Transfer from pediatric to adult endocrinology. Endocrine Practice, 23(7), 822–830. https://doi.org/10.4158/EP171753.OR. Lemke, M., Kappel, R., McCarter, R., D’Angelo, L., & Tuchman, L. K. (2018). Perceptions of health care transition care coordination in patients with chronic illness. Pediatrics, 141(5). https://doi.org/10.1542/peds.2017-3168.

Data Sources and Data Issues: Stakeholder work group survey.

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: No similar strategy found in the established evidence for this NPM. See similar ESMs for this NPM or search for other strategies or promising practices ().

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Enabling services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: Increase the number of YSHCN who have a successful transition to an adult health care provider.

Numerator: Number of YSHCN 14 to 21 years of age receiving services at the RCPs who completed the Transition Readiness Assessment Tool.

Denominator: Number of YSHCN 14 to 21 years of age receiving services at the RCPs.

Significance: As youth get older, their ability to manage their medical needs becomes increasingly important, especially for YSHCN. The goals of a successful health care transition is to facilitate a proper process of transition from pediatric to an adult health care provider, and to improve the ability of YSHCN to manage their health care, based on their capacity to do so. The administration of the Transition Readiness Assessment Tool is the 3rd core element of the Evidence Based Got Transition Model. The purpose is to identify and discuss with youth and parent/caregiver their needs; concerns and aspirations in self-care and to jointly develop a written transition plan with goals, priorities and actions.

Data Sources and Data Issues: Data source: RPCs census. Data issues: No data issues are expected, but if issues arise, they would be discussed with the RPCs directors. When the EHR-IS is implemented, the method of data collection may be modified.

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: Strategy and ESM aligns with priority, however it is not in direct alignment with NPM. See other ESMs for this NPM (https://www.mchlibrary.org/evidence/state-esms-results.php?q=&NPM=12&State=&RBA_Category=&MCH_Pyramid=&Recipient=&Status=Active) or find other NPM 12 patient-level strategies in MCHbest.

Measurement Quadrant: Quadrant 2: Measuring quality of effort (% of reach; satisfaction)

Service Type: Enabling services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: Collaborate with inter-governmental agencies, business, and non-profits to provide CHSCHN with non-medical related services.

Numerator: Number of CSHCN youth registered for non-medical related services

Denominator: Total number of CSHCN youth in the registry

Significance: By involving business representatives on the council, it is our hope that the business community will learn more about the children and youths with special health care needs and the transition program and therefore provide them with employment opportunities.

Data Sources and Data Issues: Marshall Health Information System - CSHCN Registry

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: This ESM measures access to/receipt of care, thus doesn't align with a specific evidence-based strategy. Consider developing an ESM for one of the specific strategies in your state action plan to measure performance. Check MCHbest for examples to connect to the evidence.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Direct services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: Increase the percentage of youths/young adults enrolled in the Department's Title V program for Children and Youth with Special Health Care Needs (CYSHCN) that transfer to an adult provider.

Numerator: Number of youths/young adults enrolled in the Department's Title V program for CYSHCN that report successful transfer to an adult provider

Denominator: Number of youths/young adults enrolled in the Department's Title V program for CYSHCN who need to transfer to an adult provider

Significance: Health care transition is an importance process of changing from a pediatric to an adult model of health care. The goal of transition is to optimize health and assist youth in reaching their full potential. To achieve this goal requires an organized transition process to support youth in acquiring independent health care skills, preparing for an adult model of care, and transferring to new providers without disruption in care.

Data Sources and Data Issues: Data Source: Children's Medical Services Quarterly Report

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: Moderate. Aligns with MCHbest strategy 12.4 "Transition Care Coordination Services". Find other NPM 12 practice/patient-level strategies in MCHbest.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Direct services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: To ensure that youth with special health care needs are better equipped to transition into adult life

Numerator: Number of youth program participants with special healthcare needs, ages 12 to 21, who have one or more transition goals achieved on their action plan by the target completion date

Denominator: Number of youth program participants with special healthcare needs, ages 12 to 21

Significance: The transition of youth to adulthood, including the movement from a child to an adult model of healthcare, has become a priority issue nationwide as evidenced by the 2011 clinical report and algorithm developed jointly by the AAP, American Academy of Family Physicians and American College of Physicians to improve healthcare transitions for all youth and families. Poor health has the potential to impact negatively the youth and young adults’ academic and vocational outcomes. Over 90 percent of children with special health care needs now live to adulthood but are less likely than their non-disabled peers to complete high school, attend college or to be employed. Health and health care are cited as two of the major barriers to making successful transitions. American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002 Dec;110(6 Pt 2):1304-6. http://pediatrics.aappublications.org/content/110/Supplement_3/1304.

Data Sources and Data Issues: KS-SHCN Care Coordination Measurement Tool (Welligent)

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: Moderate. Aligns with MCHbest strategy "Transition Care Coordination Services" (https://www.mchevidence.org/tools/strategies/12-4.php). Find other NPM 12 patient-level strategies in MCHbest.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Direct services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: All families of youth with special health care needs (YSHCN) ages 14 and older who receive services from the DPH Care Coordination Program will receive the education and support necessary to assist and prepare their youth for successful health transi

Numerator: Number of YSHCN ages 14 and older who received services from the DPH Care Coordination Program that received health transition information and support

Denominator: Number of YSHCN ages 14 and older who received services from the DPH Care Coordination Program

Significance: As stated in the Clinical Report, Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home, jointly authored by the American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians, care coordination is part of transition planning for CYSHCN and may be instrumental in supporting the transfer of care from pediatric to adult medical subspecialists. Got Transition’s Six Core Elements cites care coordinators as key members of the collaborative team to support health care transition to adulthood. By providing information and support, DPH Care Coordinators can assist and complement the medical home’s work on transition readiness.

Data Sources and Data Issues: Data will be accessed from the DPH Care Coordination database. Care Coordinators track service delivery and record in the database the types of services provided to each client who received CC services during the reporting period. The database will need to be modified to include a data element on provision of health transition information and support. Systems will need to be put in place to flag youth who should receive these services.

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: There is limited research in the evidence base to support this strategy.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Direct services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: Increase the percent of youth ages 12--21 served by Child Health Specialty Clinics who have completed a transition checklist

Numerator: Number of clients served who have a transition checklist documented

Denominator: Total number of clients served

Significance: The transition checklist is the tool that initiates transition services for youth served by Child Health Specialty Clinics

Data Sources and Data Issues: University of Iowa Health Care Electronic Medical Record

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: This ESM measures access to/receipt of care, thus doesn't align with a specific evidence-based strategy. Consider developing an ESM for one of the specific strategies in your state action plan to measure performance. Check MCHbest for examples to connect to the evidence.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Enabling services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: To increase the percent of adolescents with special health care needs, ages 14 – 20, who received services necessary to make transitions to adult health care

Numerator: the number of adolescents or family caregivers in the denominator who indicated their goal had been achieved, when reviewed at one year

Denominator: number of adolescents with special health care needs, ages 14 – 20, who identified a goal related to transition during TRAQ consultation with their health care coordinator

Significance: Effective transition from pediatric to adult health care promotes continuity of developmental and age-appropriate care for youth with special health care needs. Yet years of national, state and community studies continue to demonstrate that most youth with special health care needs (SHCN) and families do not receive the support they need in the transition from pediatric to adult health care. Improvements are needed to raise awareness of youth and their families that maintaining health and continuity of care are important to attaining broader adult goals. (Pediatrics November 2018, 142 (5) e20182587; DOI: https://doi.org/10.1542/peds.2018-2587)

Data Sources and Data Issues: BFCS will use the SMS database to collect data. Currently, the system allows for the health care coordinator to record transition encounters as “TRAQ sent” and/or “TRAQ completed”. A system update will be required to add options to record “Transition goal identified” and “Transition goal met”. Instructions will be provided to health care coordinators to require an encounter note be included in the documentation that identifies the goal.

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: Emerging. Aligns with MCHbest strategy "Provider Training/Workforce Development". Find other NPM 12 provider-level strategies in MCHbest.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Systems level of pyramid

Essential Public Health Services: 8. Build and support a workforce

Service Recipient: Activities directed to professionals

Goal: 80% of Regional Center information and referral staff, who have been in their position for one year or more, will self-evaluate at a minimum of 50% “competent” or “proficient” in Transition competencies.

Numerator: Number of Regional Center information and referral staff, who have been in their position for one year or more, who self-evaluate at a minimum of 50% “competent” or “proficient” in Transition competencies

Denominator: Number of Regional Center information and referral staff who have been in their position for one year or more who complete a self-evaluation

Significance: Based on the results of this self-assessment, staff from the Youth Health Transition Initiative will assist Regional Centers to ensure that the Network has the necessary skills and knowledge to address any questions that arise. As new staff are onboarded, this survey can be used as a thorough training guide, to assure the competency and effectiveness of the workforce.

Data Sources and Data Issues: Qualtrics tracking system will be used. The system was piloted in 2020 and no issues are anticipated.

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: Moderate. Aligns with MCHbest strategy "Six Core Elements Adaptation with Quality Improvement (QI)". Find other NPM 12 practice-level strategies in MCHbest.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Enabling services level of pyramid

Essential Public Health Services: 8. Build and support a workforce

Service Recipient: Activities directed to professionals

Goal: To increase the number of providers who have incorporated the six Core Elements of Transition into their practices through training, support, and technical assistance offered by DSCC

Numerator: # provider practices receiving technical assistance related to transition who have incorporated the six Core Elements of Transition into their practices

Denominator: # provider practices receiving technical assistance related to transition

Significance: This ESM will measure an output of strategy #6-D: Partner with health care providers to educate and support practice initiatives focused on preparation for transition to adulthood, including providing technical assistance to practices on using the 6 Core Elements of Transition 3.0 Toolkit for Providers, and developing youth- focused educational resources for provider practices. This measure will specifically measure the “success” of the technical assistance provided by DSCC to determine the proportion of provider practices that subsequently adopt six Core Elements of Transition.

Data Sources and Data Issues: DATA SOURCE: UIC Division of Specialized Care for Children

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: There is limited research in the evidence base for this NPM to support this strategy.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Direct services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: To enhance and expand transition in care/services for CYSHCN from pediatric/adolescent to adulthool.

Numerator: Number of pediatric providers that use telehealth to assist CYSHCN transition to adult care

Denominator: Total number of pediatric care providers in SC

Significance: Needs assessment results show a gap in transition care for CYSHCN; one strategy for increased transition care services is to promote and support telehealth efforts among pediatric providers.

Data Sources and Data Issues: MCH Program in collaboration with multi-sector partners

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: Moderate. Aligns with MCHbest strategy "Six Core Elements Adaptation with Quality Improvement (QI)". Find other NPM 12 practice-level strategies in MCHbest.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Direct services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: To increase the number of Arkansas Medicaid Pediatric & Family Practice providers who develop a Transition Policy within their practice by implementing the Six Core Elements of Health Care Transition. Related to Disability and Health (DH) Objective 5

Numerator: The number of PCP practices of transition age children (12 through 17) receiving Title V CSHCN services that participate in the Six Core Elements of Health Care Transition self-assessment

Denominator: The number of PCP practices of transition age children (12 through 17) receiving Title V CSHCN services

Significance: Will enable CSHCN providers with the ability to be able to assist and teach families the Six Core Elements of Transition to optimize their ability to assume adult roles & activities to ensure that health care services are available in an uninterrupted manner. The transition of youth to adulthood has become a priority issue nationwide as evidenced by the clinical report and algorithm developed jointly by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians to improve healthcare transitions for all youth and families. Over 90 percent of children with special health care needs now live to adulthood, but are less likely than their non-disabled peers to complete high school, attend college or to be employed. Health and health care are cited as two of the major barriers to making successful transitions.

Data Sources and Data Issues: Therap reports of Title V CSHCN PCPs

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: Moderate. Aligns with MCHbest strategy "Six Core Elements Adaptation with Quality Improvement (QI)". Find other NPM 12 strategies in MCHbest.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Enabling services level of pyramid

Essential Public Health Services: 8. Build and support a workforce

Service Recipient: Activities directed to professionals

Goal: Increase the percent of transition training participants with a change in knowledge

Numerator: Number of transition training participants who reported a change in knowledge, practice, or policy

Denominator: Number of transition training participants

Significance: The transition of youth to adulthood, including the movement from a child to an adult model of healthcare, has become a statewide priority issue based on the 2020 Needs Assessment. Poor health has the potential to impact negatively the youth and young adults’ academic and vocational outcomes. Over 90 percent of children with special health care needs now live to adulthood, but are less likely than their non-disabled peers to complete high school, attend college or to be employed. Health and health care are cited as two of the major barriers to making successful transitions.

Data Sources and Data Issues: Title V MCH Program. The results of the pre- and post-test surveys administered to Health Care Transition training participants.

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: This ESM is based on state data and measures access to/receipt of care, thus doesn't align with a specific evidence-based strategy. Consider developing an ESM for one of the specific strategies in your state action plan to measure performance. Check MCHbest for examples to connect to the evidence.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type: Direct services level of pyramid

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient: Activities directed to families/children/youth

Goal: The baseline value for this measure, from the 2018-19 program grant cycle, is 40.3%. The program has set an improvement target of 5% for 2022, to 42.3%.

Numerator: Individuals ages 14-21 with sickle cell disease who had transition readiness assessments completed

Denominator: Individuals ages 14-21 with sickle cell disease who were served through the Sickle Cell Disease Care Transition program and kept a routine medical appointment

Significance: Sickle cell disease (SCD) grantees at three (3) Hemoglobinopathy Centers (HC) work directly and exclusively with youth in support services. HCs conduct peer support groups to gauge barriers to care and transition for youth and young adults with SCD. Transition navigators at HCs engage youth with SCD to ensure compliance with care regimens and to understand that barriers youth experience in caring for themselves. In studies by Treadwell et al. (2011) and Telfair (2004) participants with SCD voiced a fear of leaving their pediatric health care providers, expressing concern that adult care providers might not understand their needs and might not believe their complaints of pain. The youth also expressed concerns about having limited information about transition and about adult health care programs. There is increased risk for individuals with SCD during this transition period.

Data Sources and Data Issues: Sickle Cell Disease Care Transition contractor reports

Year: 2021

Unit Type: Percentage, Unit Number: 100

Measure Status: Active

Evidence Level: This ESM measures access to/receipt of care, thus doesn't align with a specific evidence-based strategy. Consider developing an ESM for one of the specific strategies in your state action plan to measure performance. Check MCHbest for examples to connect to the evidence.

Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")

Service Type:

Essential Public Health Services: 7. Assure effective and equitable health systems

Service Recipient:

Goal: Assess the provision of transition services to evaluate provider education, outreach and promotion of best practices, and to inform efforts to support providers and families.

Numerator: Number of families of transition-aged youth with special health care needs (12 years+) surveyed who indicated they received professional help with transition services

Denominator: Total number of families of transition-aged youth with special health care needs (12 years+) surveyed

Significance: The AAP outlined guidelines to promote successful transition from pediatric to adult health care in a 2011 Clinical Report. The Got Transition Six Core Elements operationalized the components of health care transition support by establishing evidence-based tools for use by providers and families. According to the 2017-2018 NSCH, 87.0% percent of the Texas CSHCN population did not receive the services necessary to transition to adult health care compared to 81.1 percent of CSHCN in the United States. In the Title V CSHCN Parental Outreach Survey, 75% of respondents said that they did not feel prepared for their child’s transition. Only 7.0% of respondents prepared for transition in at least four out of seven transition areas with a professional. Most respondents who indicated that they had prepared for their child’s transition had done so by themselves. The percent of families of transition-age youth who indicate they received professional help with transition services for their child is derived from the CYSHCN Outreach Survey. Data collected reflects the number of survey respondents who indicate that a professional helped them with four or more of the following areas of transition needs: medical, educational, independent living, financial, social, employment, and legal. Successful provider education, outreach, and promotion of best practices, including Got Transition’s Six Core Elements, will lead to increased knowledge, attitudes, and implementation skills for providing transition support. Successful family education, outreach, and support will lead to increased demand for quality transition services.

Data Sources and Data Issues: Data Source: CYSHCN Outreach Survey Responses to the CYSHCN Outreach Survey will be collected on a biennial basis. The survey will be mailed out and dispersed electronically to families served by HHSC CSHCN health care benefits and MCHS contractors in both English and Spanish formats. The survey will be promoted through email communication, newsletters, and webpages. According to the 2019 CYSHCN Outreach Survey as part of the 2020 Title V Five Year Needs Assessment, 15 of 214 respondents with transition-aged youth (7.0%) indicated they received professional help with four or more of the seven areas of transition services. Data Issues: Challenges associated with surveying a convenience sample include the potential to underrepresent subsets of the CYSHCN population in Texas according to geographical location or language spoken. The CYSHCN Outreach Survey seeks to combat these challenges by providing both online and paper access to the survey in English and Spanish. Geographical data is also gathered in order to examine areas of need for additional ongoing needs assessment activities including focus groups and interviews.

Year: 2021

Unit Type: Percentage, Unit Number: 100