National Standards for CYSHCN Measures Compendium Layout 3

This measures compendium is a reference tool that highlights relevant quality measures aligned with key elements for a system of care for CYSHCN as outlined in the National Standards for CYSHCN.  This tool compiles existing data and quality measures from applicable and widely used measure sets.  Identification of data and quality measures can help states evaluate how well their system of care is serving CYSHCN.


How to Use This Compendium
The National Standards compendium categorizes critical data and quality measures from 13 measure sets into 10 system-level standards. Each standard features relevant measures. Each measure features hyperlinks that lead to more information about the measure. For survey-related measures, the hyperlink is accompanied by more information, such as the exact wording of the survey question posed, the confidence interval for the data collected, and the national trend for the question (if it is from a national survey). For composite measures, the hyperlink includes information about the measures and data that make up the composite measure.

Description of Measure Sets in the National Standards Measures Compendium

Measure SetDescriptionSourceFrequency of Updates and/or Reporting
Consumer Assessment of Healthcare Providers and Systems (CAHPS) Health Plan Survey 5.0A survey, developed by the Agency for Healthcare Research and Quality (AHRQ), that is commonly used by Medicaid agencies and health plans to assess health plan enrollees’ experiences, including access to appointments and care through their health plan, communication with doctors available through the plan, and customer service. Survey data Annually
CAHPS Survey: Children with Chronic ConditionsA supplemental CAHPS survey question set specifically assessing the experiences of children with chronic conditions with health plans and health care services. Survey data Annually
Family Experience with Care Coordination (FECC) A survey developed by the Center of Excellence on Quality of Care Measures for Children with Complex Needs that assesses care coordination for children with chronic and complex conditions. Survey data N/A
Healthcare Effectiveness Data and Information Set (HEDIS)A set of quality measures developed by the National Committee for Quality Assurance (NCQA) to measure health plan performance. Medicaid health plans accredited by NCQA must report on 35 select measures annually.Administrative, hybrid, and survey dataAnnually
Medicaid/CHIP Child Core SetA set of health care quality measures identified by the Centers for Medicare & Medicaid Services (CMS). State Medicaid and Children’s Health Insurance Program (CHIP) programs currently report on these measures voluntarily but will be required to submit data on all measures by 2024.Administrative, hybrid, and survey data Annually
Pediatric Integrated Care Survey (PICS)A validated survey, developed by Boston Children’s Hospital, that measures experiences of families with the integration of health care and related services for children with complex medical, behavioral, and developmental needs. Survey dataN/A
Pediatric Quality Measures Program (PQMP)A joint CMS and AHRQ program that is strengthening the Medicaid/CHIP Child Core Set and has developed new pediatric measures across diverse topics.Administrative and medical records dataN/A
National Survey of Children’s Health (NSCH)A national annual survey that measures many key topics concerning children’s health and well-being. NSCH is sponsored by the Health Resources and Services Administration, Maternal and Child Health Bureau, and conducted by the US Census Bureau. Survey dataAnnually
Adolescent Assessment of Preparation for Transition (ADAPT)A validated survey, developed by the Center of Excellence for Pediatric Quality Measurement, consisting of youth-reported measures of the quality of health care transition preparation. The survey is designed to be completed by 16- and 17-year-old patients receiving care from a pediatric-focused provider. Survey dataN/A
Individuals with Disabilities Education Act (IDEA) Child Count, Part CA measure set of state reported data related to children who are receiving services through the Part C Early Intervention program. States are required to submit this data to the US Department of Education annually. Hybrid of medical and educational records (paper or electronic) and administrative claimsAnnually
CMS Annual Medicaid Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Participation report A set of data measures used by CMS to collect basic information about state Medicaid programs to assess the effectiveness of EPSDT services. States are required to submit this data to CMS annually.Hybrid of medical and educational records (paper or electronic) and administrative claimsAnnually
NewSTEPs: Newborn screening quality indicatorsA set of quality indicators on key aspects of state newborn screening systems, developed by the NewSTEPs organization. States that have a memorandum of understanding with NewSTEPs submit the data voluntarily on an annual basis. Newborn screening dataAnnually
Promoting Healthy Development Survey (PHDS-PLUS)The PHDS-PLUS survey measures whether young children are receiving nationally recommended preventive and developmental services, as well as certain other factors related to children’s health. The survey is designed for use by Medicaid and other programs, and was developed under the Child and Adolescent Health Measurement Initiative.Survey dataN/A
Standard 1: Children and Families are Core Partners 
National Survey of Children’s Health PHDS-PLUSCAHPS Health Plan Survey 5.0CAHPS Chronic Condition SupplementPediatric Integrated Care SurveyTitle V NOM (Data from NSCH)
Children whose families are partners in shared decision-making for their optimal health (composite)Family-centered care that respects, listens to, and partners with parents (composite)Doctor listened carefully to respondentParents' experiences with getting needed information about their child's care (composite)Family impact (composite)Percent of CSHCN, ages 0 through 17, who receive care in a well-functioning system (composite)
Children who received family-centered care (composite)Helpfulness of care provided to parents (composite)Doctor showed respect for what respondent had to sayFamily-centered care (composite)Care team members (CTMs) treated family as a full partner
Doctor or health care providers worked with youth to gain skills to manage health/health care or understand health care changes at age 18, age 12-17 years (composite)Assessment of parent concerns about child learning, development, and behavior and provision of specific information for parents with concerns (composite)Doctor spent enough time with childParents' experiences with shared decision-making (composite)CTMs took the whole family into account
Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)In the last 12 months, how often did (child’s) doctors or other health care providers:In the last 6 months:
Doctors discussed range of health care/treatment optionsTake time to understand the specific needs of (child)?Did your child’s doctor or other health provider talk with you about the pros and cons of each choice for your child’s treatment or health care?
Doctors helped parents feel like partners in child's careRespect you as an expert about (child)?Did your child’s doctor or other health provider talk with you about the pros and cons of each choice for your child’s treatment or health care?
Doctors worked with parents to decide together health care/treatment optionsBuild your confidence as a parent (if grandparent: grandparent)?When there was more than one choice for your child’s treatment or health care, did your child’s doctor or other health provider ask you which choice was best for your child?
Doctors listened carefullyHelp you feel like a partner in your child’s care?Does your child’s personal doctor understand how these medical, behavioral, or other health conditions affect your child’s day-to-day life?
Doctors made it easy for parents to raise concerns or disagree with recommendationsExplain things in a way you can understand?Does your child’s personal doctor understand how your child’s medical, behavioral, or other health conditions affect your family’s day-to-day life?
Doctors provided information specific to parents' concernsShow respect for your family’s values, customs, and how you prefer to raise your child?
Doctors showed sensitivity to family's values and customsIn the last 12 months, did (child’s) doctors or other health care providers:
Doctors spent enough time with childrenAsk you if you ever feel depressed, sad, or have crying spells?
Doctor or health care provider actively worked with the child to make positive choices about his/her health, age 12-17 yearsAsk if you have concerns about (child’s) learning, development, or behavior?
Doctor or health care provider actively worked with the child to think about and plan his/her future, age 12-17 yearsGive you specific information to address these concerns [about (child’s) learning, development or behavior]?
Doctor or health care provider actively worked with the child to gain skills to manage his/her health and health care, age 12-17 yearsIn thinking about all of the care provided by (child’s) doctors or health providers in the last 12 months, how helpful has it been in the following areas:
Understanding (child's) behavior?
Learning how to protect (child) from injuries?
Giving you the information you needed when you needed it?
Learning how to meet your own needs while caring for (child)?
Standard 2: Services are Culturally Competent and Accessible 
National Survey of Children’s Health PHDS-PLUSCAHPS Health Plan Survey 5.0FECC, PQMPTitle V NOM (Data from NSCH)Title V NPM (Data from NSCH)
Children who received family-centered care (composite)Family-centered care that respects, listens to, and partners with parents (composite)Enrollees’ rating of their health careCaregiver has access to medical interpreter when neededPercent of CSHCN, ages 0 through 17, who receive care in a well-functioning system (composite)Percent of CSHCN having a medical home (composite)
Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)Helpfulness of care provided to parents (composite)Doctor explained things in a way that was easy to understandWritten visit summary was useful and easy to understandPercent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling
Effective care coordination among those who needed care coordinationAssessment of parent concerns about child learning, development, and behavior and provision of specific information for parents with concerns (composite)Doctor explained things in a way that was easy for child to understandInvited to join hospital rounds
Doctors helped parents feel like partners in child's careIn the last 12 months, how often did (child’s) doctors or other health care providers:Doctor spent enough time with childWritten hospitalization summary was easy to understand
Doctors listened carefullyTake time to understand the specific needs of (child)?How often were the forms from your child’s health plan easy to fill out?
Doctors provided information specific to parents' concernsRespect you as an expert about (child)?
Doctors showed sensitivity to family's values and customs
Doctors spent enough time with children
Standard 3: Insurance Coverage is Comprehensive and Affordable
National Survey of Children’s Health PHDS-PLUSCAHPS Health Plan Survey 5.0CAHPS Chronic Condition Supplement Pediatric Quality Measures ProgramTitle V NOM (Data from NSCH)Title V NPM (Data from NSCH)
Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)
Adequacy of current insurance coverage (composite)
Consistent and adequate insurance coverage (composite)
Type of health insurance at time of the survey
Health insurance status at time of survey
Children who had consistent health insurance coverage during the past 12 months
Children who were not covered by health insurance due to change in parent's employment status
Dropped health insurance coverage because it was unaffordable
Dropped health insurance coverage because benefits were inadequate
Dropped health insurance coverage because choice of health care provider was inadequate
Child was not covered by insurance due to problems with application or renewal process
Child was not covered by insurance due to other reasons
Children whose family member(s) avoided changing jobs because of concerns about maintaining health insurance
Family had problems paying for child's medical or health care bills
Current insurance out-of-pocket expenses are reasonable
Unmet need for health care due to cost
Out-of-pocket payment for child's health care including medical, dental and vision care during the past 12 months
Current insurance benefits meet children’s needs
Current insurance coverage allows children to see needed providers
Insurance coverage for mental or behavioral health care
Family frustrated in efforts to get services for their children during the past 12 months
Doctors have discussed future insurance needs, age 12-17 years
Standard 4: Identification, Screening, Assessment, and Referral

Identification, Screening, Assessment, and Referral

National Survey of Children’s Health CAHPS Health Plan Survey 5.0Pediatric Quality Measures ProgramTitle V NOM (Data from NSCH)CMS Annual Medicaid EPSDT Participation ReportNewSTEPS
Percent of CSHCN receiving care in a well-functioning system (composite)Doctor talked about how child feeling, growing, or behavingPediatric Medical Complexity AlgorithmPercent of CSHCN, ages 0 through 17, who receive care in a well-functioning system (composite)Screening ratioPercent of disorders detected by newborn screening with a confirmed diagnosis by an appropriate medical professional
Doctor asked about parental concerns about the child's learning, development, or behavior, age 0-5 yearsChildren with Disabilities AlgorithmTotal eligibles referred for corrective treatmentPercent of missed [newborn screening] cases, reported by disorder
Total eligibles receiving any dental services
Total eligibles receiving preventive dental services
Total eligibles receiving dental treatment services
Total eligibles receiving a sealant on a permanent molar tooth
Total eligibles receiving diagnostic dental services
Total number of screening blood lead tests

Screening

PHDS-PLUS CMS Child Core SetHEDISHEDIS, CMS Child Core SetFECC, PQMPTitle V NPM (Data from NSCH)CMS Annual Medicaid EPSDT Participation ReportNewSTEPS
Anticipatory guidance and parental education provided by doctors or other health care providers (composite)Dental sealants for 6–9 year-old children at elevated caries riskAnnual dental visitChildhood immunization status (composite)Electronic health record has immunization and medication informationPercent of children, ages 9 through 35 months, receiving a developmental screening using a parent-completed screening toolTotal eligibles receiving at least one initial or periodic screenTimeliness of newborn screening activities (composite)
Assessment of parent concerns about child learning, development, and behavior and provision of specific information for parents with concerns (composite)Developmental screening in the first three years of lifeLead screening in childrenImmunizations for adolescents (composite)Percent of eligible newborns not receiving a newborn screen, reported by dried blood spot or point of care screen(s)
Provision of written or other types of health information to parents on caring for their child, preventing injuries, and ensuring optimal development (composite)Percentage of eligibles who received preventive dental servicesWeight assessment and counseling for nutrition and physical activity for children/adolescentsPercent of infants that have no recorded final resolution (confirmed diagnosis or diagnosis ruled out by an appropriate medical professional) with the newborn screening program
In the last 12 months did (child’s) doctors or health providers:Audiological diagnosis no later than 3 months of ageWell-child visits in the first 15 months of life
Have you fill out a survey or checklist about concerns you may have had about (child’s) learning, development, or behavior?Well-child visits in the third, fourth, fifth, and sixth years of life
Have you fill out a survey or checklist about activities that (child) may be able to do such as certain physical tasks, whether (child) can draw certain objects, or ways (child) can communicate with you?Adolescent well-care visits
Ask you if you or someone in your household smokes?
Ask you if you or someone in your household drinks alcohol or uses other substances?
Ask you if you have any firearms in your home?
Talk with you about the kinds of behaviors you can expect to see in (child) as he/she gets older?
Tell you that they were doing an assessment or test of your child's development?
Talk with you about things you can do to help (child) grow and learn?
Ask you if you ever feel depressed, sad, or have crying spells?
Ask if you have concerns about (child’s) learning, development, or behavior?
Give you specific information to address these [behavior] concerns?
Test (child's) learning and behavior?

Referral

National Survey of Children’s HealthPHDS-PLUSPediatric Quality Measures ProgramFECC, PQMPIDEA Child Count
Problems getting needed referrals, all childrenFollow-up for children at risk for developmental, behavioral, or social delays (composite)Follow-up referral after positive developmental screenCare coordinator assisted with specialist service referralsNumber and percent of infants and toddlers receiving early intervention services under IDEA, Part C, by age and state.
In the last 12 months did (child’s) doctors or health providers do any of the following…Follow-up referral trackingNumber and percent of at-risk infants and toddlers birth through age 2 receiving early intervention services under IDEA, Part C, by race/ethnicity and state.
Refer (child) to another doctor or other health provider?Follow-up with patient’s family after developmental screening
Refer (child) for speech-language or hearing testing?
Standard 6: Access to Care

Access to Care

National Survey of Children’s HealthPHDS-PLUSHEDIS, CMS Child Core SetCAHPS Health Plan Survey 5.0CAHPS Chronic Condition SupplementPICSTitle V NOM (Data from NSCH) 
Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)When (child) needed care right away for an illness or injury, how often did (child) get this care as soon as you wanted?Children and adolescent's access to primary care practitioners (composite)Getting needed care (composite)Access to prescription medicinesDelays: lack of sufficient servicesPercent of CSHCN, ages 0 through 17, who receive care in a well-functioning system (composite)
Current insurance benefits meet children’s needsIn the last 12 months (or if younger than 12 months, since child’s birth) was there any time that (child) needed health care but did not get it?Getting care quickly (composite)Did anyone from your child’s health plan, doctor’s office, or clinic help you get your child’s prescription medicines?
Children who were not able to receive needed health care in the past yearWhy did (child) need health care? Was it for a…Child got non-urgent appointment as soon as neededIn the last 6 months, how often was it easy to get special medical equipment or devices for your child?
Children who were not able to receive needed mental health services during the past 12 monthsRegular or routine visit?Child got care for illness/injury as soon as neededDid anyone from your child’s health plan, doctor’s office, or clinic help you get special medical equipment or devices for your child?
Children who were not able to receive needed medical care during the past 12 monthsA medical problem or concern?Easy for child to get necessary care, tests, or treatment
Unmet need for health care because the service this child needed was not available in their areaA behavioral problem or concern?Have a personal doctor
Unmet need for health care because there were problems getting an appointmentA speech and/or language problem or concern?
Unmet need for health care because there were problems with getting transportation or child careFor another reason?
Unmet need for health care because child was not eligibleWhy didn’t (child) receive care for [type of care]? Was it because…
Unmet need for health care because the office was not open when the child needed careYou could not afford it or had no health insurance?
Unmet need for health care due to costYou had no doctor to go to for (child)?
Family frustrated in efforts to get services for their children during the past 12 months(Child's) doctor did not consider it a problem?
Family had problems paying for child's medical or health care bills(Child's) doctor had no one to refer (child) to?
Children who received any type of medical care during the past 12 monthsYou had transportation/childcare problems?
Children who had one or more preventive medical care visits during past 12 monthsProblems related to work?
Time with doctor during last preventive check-upInsurance did not cover the visit?
Doctor's schedule was full/no free appointments?
Did the lack of health care for (child’s) medical problem ...
Create concerns about (child’s) future development?
Create problems for (child) attending day care?
Create problems for you and/or your spouse/partner meeting work responsibilities?
In the last 12 months (For children younger than 12 months, since child’s birth) was there any time that (child) received care, but got the care later than you would have liked?
Why did (child) need health care? Was it for a…
Regular or routine visit?
A medical problem or concern?
A behavioral problem or concern?
A speech and/or language problem or concern?
For another reason?
Why was (child’s) care for [type of care] delayed?
You could not afford it or had no health insurance?
You had no doctor to go to for (child)?
(Child's) doctor did not consider it a problem?
(Child's) doctor had no one to refer (child) to?
You had transportation/childcare problems?
Problems related to work?
Insurance did not cover the visit?
Doctor's schedule was full/no appointments?
Did the delay in health care for (child’s) medical problem ...
Create concerns about (child’s) future development?
Create problems for (child) attending day care?
Create problems for you and/or your spouse/partner meeting work responsibilities?

Access to Specialist Providers

National Survey of Children’s HealthCAHPS Health Plan Survey 5.0CAHPS Chronic Condition SupplementFECC, PQMPTitle V NOM (Data from NSCH)
Received care from a specialist doctor other than a mental health professional during the past 12 monthsRespondent got child an appointment with specialists as soon as neededAccess to specialized services (composite)Care coordinator assisted with specialist service referralsPercent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling
Problem obtaining specialist care among those who received or needed a specialist care during the past 12 monthsIn the last 6 months, how often was it easy to get this therapy for your child?
Children who received treatment or counseling from a mental health professional during the past 12 months, age 3-17 yearsDid anyone from your child’s health plan, doctor’s office, or clinic help you get this therapy for your child?
Problems obtaining mental health care among those who received or needed care, age 3-17 yearsIn the last 6 months, how often was it easy to get this treatment or counseling for your child?
Children who were not able to receive needed vision care during the past 12 months
Children who were not able to receive needed dental care during the past 12 months
Children who were not able to receive needed hearing care during the past 12 months
Children who were not able to receive needed other health services during the past 12 months
Standard 7: Medical Home and Care Coordination

Medical Home

National Survey of Children’s HealthPHDS-PLUSCAHPS Health Plan Survey 5.0CAHPS Chronic Condition SupplementPQMPTitle V NOM (Data from NSCH)Title V NPM (Data from NSCH)
Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)Family-centered care that respects, listens to, and partners with parents (composite)Doctor explained things in a way that was easy to understandFamily-centered care (composite)Follow-up referral after positive developmental screenPercent of CSHCN, ages 0 through 17, who receive care in a well-functioning system (composite)Percent of children with and without special health care needs having a medical home (composite)
Children who receive coordinated, ongoing, comprehensive care within a medical home (composite)Provision of written or other types of health information to parents on caring for their child, preventing injuries, and ensuring optimal development (composite)Follow-up with patient’s family after developmental screening
Children whose families are partners in shared decision-making for their optimal health (composite)Anticipatory guidance and parental education provided by doctors or other health care providers (composite)Developmental screening follow-up: follow-up referral tracking
Children who received family-centered care (composite)Helpfulness of care provided to parents (composite)
Doctors discussed range of health care/treatment optionsDo you have one person you think of as your child’s personal doctor or nurse?
Doctors helped parents feel like partners in child's careIn the last 12 months:
Doctors listened carefullyHow often did (child’s) doctors or other health providers take time to understand the specific needs of (child)?
Doctors made it easy for parents to raise concerns or disagree with recommendationsHow often did (child’s) doctors or other health providers respect you as an expert about (child)?
Doctors provided information specific to parents' concernsHow often did (child’s) doctors or other health providers build your confidence as a parent (if grandparent: grandparent)?
Doctors showed sensitivity to family's values and customsHow often did (child’s) doctors or other health providers help you feel like a partner in your child’s care?
Doctors spent enough time with childrenHow often did (child’s) doctors or other health providers explain things in a way you can understand?
Doctors worked with parents to decide together health care/treatment optionsHow often did (child’s) doctors or other health providers show respect for your family’s values, customs, and how you prefer to raise your child?
Time with doctor during last preventive check-upIn thinking about all of the care provided from (child’s) doctors or other health providers in the last 12 months, how helpful has it been in the following areas:
Family frustrated in efforts to get services for their children during the past 12 monthsUnderstanding (child’s) behavior?
Children who were not able to receive needed health care in the past yearLearning how to protect (child) from injuries?
Children who were not able to receive needed other health services during the past 12 monthsGiving you the information you needed when you needed it?
Unmet need for health care because child was not eligibleLearning how to meet your own needs while caring for (child)?
Unmet need for health care because the office was not open when the child needed careIn the last 12 months did you see or hear any information about the following:
Unmet need for health care because the service this child needed was not available in their areaSafety information, such as how to make your house and car safe for (child)
Unmet need for health care because there were problems getting an appointmentHealth care information, such as when and how often (child) should see the doctor or reminders about immunizations
Unmet need for health care because there were problems with getting transportation or child careDevelopmental information, such as things you can do with (child) to help (him/her) grow and learn
Number of hospital emergency room visits for any health reason in the past 12 months

Medical Home Management

CAHPS Health Plan Survey 5.0PICSFECC, PQMP
How well the child’s doctors communicate (composite)Care team members (CTMs) had access to same medical recordCaregiver has access to medical interpreter when needed
Electronic health record has immunization and medication information
Caregiver has access to electronic health record
Appropriate written visit summary content
Appropriate written hospitalization summary content
Written visit summary was useful and easy to understand
Child has shared care plan
Child has emergency care plan

Preventative, Primary and Specialty Care

National Survey of Children’s HealthPHDS-PLUSHEDISHEDIS, CMS Child Core SetCAHPS Health Plan Survey 5.0CAHPS Chronic Condition SupplementTitle V NPM (Data from NSCH)Title V NOM (Data from NSCH)
Children who received any type of medical care during the past 12 monthsPercent of children with a mental/behavioral condition who receive treatment or counselingAnnual dental visitChildhood immunization status (composite)Rating of specialistComposite: access to specialized services Percent of children, ages 1 through 17 who had a preventive dental visit in the past yearPercent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling
Children with a personal doctor or nurseLead screening in childrenImmunizations for adolescents (composite)Have a personal doctorDid anyone from your child’s health plan, doctor’s office, or clinic help you get your child’s prescription medicines?
Usual source for sick careFollow-up after hospitalization for mental IllnessRating of personal doctor
Usual source for preventive careEasy for child to get necessary care, tests, or treatment  
Children who had one or more preventive medical care visits during past 12 monthsChild got non-urgent appointment as soon as needed
Children who had time alone with health care provider at last preventive visit, age 12-17 years
Received care from a specialist doctor other than a mental health professional during the past 12 months
Children who received treatment or counseling from a mental health professional during the past 12 months, age 3-17 years
Problems obtaining mental health care among those who received or needed care, age 3-17 years
Children who received any type of dental care during the past 12 months, age 1-17 years
Children who had one or more preventive dental care visits during the past 12 months, age 1-17 years
Children who were not able to receive needed dental care during the past 12 months
Children who received vision screening ever (0-5 years)/ during the past 2 years (6-17 years)
Children who were not able to receive needed vision care during the past 12 months
Children who were not able to receive needed hearing care during the past 12 months

Care Coordination

National Survey of Children’s HealthPHDS-PLUSCAHPS Chronic Condition SupplementPICSFECC, PQMP
Effective care coordination, all children (composite)Coordination of care for children requiring multiple types of health care services or seeing more than one health care provider (composite)Coordination of care and services (composite)Communication with care team members (CTMs) (composite)Has care coordinator
Family needed extra help to coordinate child's health careIn the last 12 months, did anyone from your child’s doctor’s office or clinic help coordinate your child’s care among these different providers or services?In the last 6 months, did you need your child’s doctors or other health providers to contact a school or daycare center about your child’s health or health care?Care goal creation/planning (composite)Access to care coordinator
Family gets help with coordinating child's health care among those who neededIn the last 6 months, did anyone from your child’s health plan, doctor’s office, or clinic help coordinate your child’s care among these different providers or services?Team functioning/quality (composite)Care coordinator contact in the last 3 months
Got all needed extra help with care coordinationCTMs explained things in understandable mannerCare coordinator assisted with specialist service referrals
Time spent coordinating health care for child in an average weekFamily comfortable voicing concerns with CTMsCare coordinator helped to obtain community services
Effective care coordination among those who needed care coordinationCTMs listened carefully to what family had to sayCare coordinator asked about concerns and health changes
Satisfaction with communication among child’s doctor and other health care providerCTMs treated family as a full partnerCare coordinator asked about progress towards goals
Health care provider communicate with child’s school, child care provider, or special education programCTMs discussed things that cause family stressCare coordinator was knowledgeable, supportive and advocated for child’s needs
Satisfaction with communication among child’s doctors and school, child care provider, or special education programCTMs discussed things that made it hard to care for childHealth care provider communicated with school staff about child’s condition
Children who needed a referral to see any doctors or receive any servicesCTMs took the whole family into account
Problems getting needed referrals, all childrenCTMs considered “big picture”
CTMs offered other than in-person communication
CTMs offered peer connections
CTMs created short-term care goals
CTMs created long-term care goals
CTMs knew about advice from other CTMs
CTMs aware of tests and evaluations
CTMs assigned and explained responsibility
CTMs followed through on responsibilities
Standard 8: Community-Based Services and Supports
Standard 9: Transition to Adulthood
National Survey of Children’s HealthPHDS-PLUSHEDISHEDIS, CMS Child Core SetCAHPS Health Plan Survey 5.0CAHPS Chronic Condition SupplementTitle V NPM (Data from NSCH)Title V NOM (Data from NSCH)
Children who received any type of medical care during the past 12 monthsPercent of children with a mental/behavioral condition who receive treatment or counselingAnnual dental visitChildhood immunization status (composite)Rating of specialistComposite: access to specialized services Percent of children, ages 1 through 17 who had a preventive dental visit in the past yearPercent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling
Children with a personal doctor or nurseLead screening in childrenImmunizations for adolescents (composite)Have a personal doctorDid anyone from your child’s health plan, doctor’s office, or clinic help you get your child’s prescription medicines?
Usual source for sick careFollow-up after hospitalization for mental IllnessRating of personal doctor
Usual source for preventive careEasy for child to get necessary care, tests, or treatment  
Children who had one or more preventive medical care visits during past 12 monthsChild got non-urgent appointment as soon as needed
Children who had time alone with health care provider at last preventive visit, age 12-17 years
Received care from a specialist doctor other than a mental health professional during the past 12 months
Children who received treatment or counseling from a mental health professional during the past 12 months, age 3-17 years
Problems obtaining mental health care among those who received or needed care, age 3-17 years
Children who received any type of dental care during the past 12 months, age 1-17 years
Children who had one or more preventive dental care visits during the past 12 months, age 1-17 years
Children who were not able to receive needed dental care during the past 12 months
Children who received vision screening ever (0-5 years)/ during the past 2 years (6-17 years)
Children who were not able to receive needed vision care during the past 12 months
Background

Creating a comprehensive, high quality system of care for children and youth with special health care needs (CYSHCN) is a key priority for many state health policy leaders. Key national stakeholders participating in the National Consensus Framework for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs project identified optimal capacity and performance benchmarks for systems of care serving CYSHCN, resulting in the National Standards for Systems of Care for CYSHCN, to help state leaders transform and improve systems of care for CYSHCN and their families. Since its publication in 2014, the National Standards have been used by national, state, and local stakeholder groups, including state Title V CYSHCN programs, health plans, state Medicaid and CHIP agencies, pediatric provider organizations, children’s hospitals, insurers, health services researchers, families, consumers, and others.

Nearly 20 percent of all US children up to 18 years (more than 14 million) have chronic and/or complex health care needs (e.g., asthma, diabetes, spina bifida) requiring health care services and supports beyond what children require normally.[1] Among them, about 3 million children have complex health care needs (representing about 0.5 percent of all US children and their numbers are growing) and require the highest levels of need.[2]

Quality measurement tools to evaluate programs are critical components of many state programs, including Medicaid, the Children’s Health Insurance Program (CHIP), and state Title V CYSHCN. The federal Title V MCH Services Block Grant program requires states to report annually on a set of National Performance Measures and the Centers for Medicare & Medicaid Services asks states to voluntarily report on the Child Core Set of measures on an annual basis. In 2024, states will be required to report on all measures in the Child Core Set. Measuring the quality of care that CYSHCN receive is a growing priority for state and national health policymakers and public and private health plans and providers. As states implement health system reforms, including linking performance and quality to payment for services, interest in quality measurement for programs serving specialized populations, including children with chronic and complex health care needs, is increasing. States’ increased use of Medicaid managed care delivery systems to serve CYSHCN[3] also presents an opportunity to hone and refine quality measurement strategies. Identification of data and quality measures that align with the National Standards can help states better implement the standards and evaluate how well their systems of care are serving CYSHCN.

This measures compendium is designed to provide states and other key stakeholders with a reference tool that highlights relevant quality measures aligned with key domains of the National Standards for CYSHCN.[4] The measures listed in this compendium summarize relevant measures from the most applicable and widely used measure sets, and is not intended to be an exhaustive list of all available measures or to provide quality measures that focus on specific medical conditions.


[1] “2016 National Survey of Children’s Health,” Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health, accessed April 2018, www.childhealthdata.org.

[2]  Turchi R and Mann M. “Building a Medical Home for Children and Youth with Special Health Care Needs,” in Handbook of Children With Special Health Care Needs, ed. David Hollar, (Philadelphia: Springer Publishing, 2012), 399–418.

[3] Kate Honsberger and Karen VanLandeghem, State Medicaid Managed Care Enrollment and Design for Children and Youth with Special Health Care Needs: A 50-state Review of Medicaid Managed Care Contracts (Washington, DC: National Academy for State Health Policy, October 2017).

[4] Becky Normile, et al. State Strategies for Medicaid Quality Improvement for Children and Youth with Special Health Care Needs (Washington, DC: National Academy for State Health Policy, November 2017).

Methodology

The National Academy for State Heath Policy (NASHP), in partnership with the Association of Maternal and Child Health Programs (AMCHP), conducted an environmental scan of measures from the following sources: national data measures and quality measurement sets, regularly conducted national and health plan surveys, patient survey instruments, and National and State Title V Performance and Outcome Measures as required by the federal Title V MCH Services Block Grant program. Following a review of these sources, key measure sets that align with the National Standards were identified and relevant measures from these sets were compiled in an index of more than 250 measures. When selecting relevant measures, the goal was to cast a wide net so that states could identify the measures that most closely met their needs. The index also listed key information about each measure, including measure steward organization, target population, level of analysis, and data source. Each individual measure was then reviewed to determine which National Standard domain (or domains) it should be attributed to. A description of the resulting measure sets is described in “How to Use This Compendium.”