National Standards for CYSHCN Measures Compendium

This measures compendium highlights quality measures aligned with key elements for a system of care for children and youth with special health care needs (CYSHCN) outlined in the National Standards of Care for Children and Youth with Special Health Care Needs. This tool compiles 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. View the Compendium in PDF-icon PDF format.


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 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 Set Description Source Frequency of Updates and/or Reporting
Consumer Assessment of Healthcare Providers and Systems (CAHPS) Health Plan Survey 5.0 A 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 Conditions A 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 data Annually
Medicaid/CHIP Child Core Set A 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 data N/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 data N/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 data Annually
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 data N/A
Individuals with Disabilities Education Act (IDEA) Child Count, Part C A 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 claims Annually
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 claims Annually
NewSTEPs: Newborn screening quality indicators A 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 data Annually
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 data N/A
Foundational Standard 1: Children and Families Are Core Partners
Applicable Measures
CYSHCN and families are active, core partners in decision making in all levels of care. National Survey of Children’s Health   PHDS-PLUS CAHPS Health Plan Survey 5.0 CAHPS Chronic Condition Supplement Pediatric Integrated Care Survey Title V NOM (Data from NSCH)
Children whose families are partners in shared decision-making for their optimal health (composite)

Children who received family-centered care (composite)

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)

Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)

Doctors discussed range of health care/treatment options

Doctors helped parents feel like partners in child’s care

Doctors worked with parents to decide together health care/treatment options

Doctors listened carefully

Doctors made it easy for parents to raise concerns or disagree with recommendations

Doctors provided information specific to parents’ concerns

Doctors showed sensitivity to family’s values and customs

Doctors spent enough time with children

Doctor or health care provider actively worked with the child to make positive choices about his/her health, age 12-17 years

Doctor or health care provider actively worked with the child to think about and plan his/her future, age 12-17 years

Doctor or health care provider actively worked with the child to gain skills to manage his/her health and health care, age 12-17 years

 

Family-centered care that respects, listens to, and partners with parents (composite)

Helpfulness of care provided to parents (composite)

Assessment of parent concerns about child learning, development, and behavior and provision of specific information for parents with concerns (composite)

In the last 12 months, how often did (child’s) doctors or other health care providers:

Take time to understand the specific needs of (child)?

Respect you as an expert about (child)?

Build your confidence as a parent (if grandparent: grandparent)?

Help you feel like a partner in your child’s care?

Explain things in a way you can understand?

Show respect for your family’s values, customs, and how you prefer to raise your child?

In the last 12 months, did (child’s) doctors or other health care providers:

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 concerns [about (child’s) learning, development or behavior]?

In thinking about all of the care provided from (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)?

Doctor listened carefully to respondent

Doctor showed respect for what respondent had to say

Doctor spent enough time with child

 

Parents’ experiences with getting needed information about their child’s care (composite)

Family-centered care (composite)

Parents’ experiences with shared decision-making (composite)

Does your child’s personal doctor understand how these medical, behavioral, or other health conditions affect your child’s day-to-day life?

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?

In the last 6 months:

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?

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?

 

 

 

Family impact (composite)

Care team members (CTMs) treated family as a full partner

CTMs took the whole family into account

 

Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (composite)

 

 

Foundational Standard 2: Services Are Culturally Competent and Accessible 
All services and supports for CYSHCN are implemented and delivered in a culturally-competent, linguistically appropriate, and accessible manner to best serve CYSHCN and their families.

 

 

 

 

 

 

 

 

 

 

 

 

Applicable Measures
The National Survey of Children’s Health PHDS-PLUS CAHPS Health Plan Survey 5.0 FECC, PQMP Title V NOM (Data from NSCH) Title V NPM (Data from NSCH)
Children who received family-centered care (composite)

Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)

Effective care coordination among those who needed care coordination

Doctors helped parents feel like partners in child’s care

Doctors listened carefully

Doctors provided information specific to parents’ concerns

Doctors showed sensitivity to family’s values and customs

Doctors spent enough time with children

 

Family-centered care that respects, listens to, and partners with parents (composite)

Provision of written or other types of health information to parents on caring for their child, preventing injuries, and ensuring optimal development (composite)

In the last 12 months, how often did (child’s) doctors or other health care providers:

Take time to understand the specific needs of (child)?

Explain things in a way you can understand?

Show respect for your family’s values, customs, and how you prefer to raise your child?

 

Enrollees’ rating of their health care

Doctor explained things in a way that was easy to understand

Doctor explained things in a way that was easy for child to understand

Doctor spent enough time with child

How often were the forms from your child’s health plan easy to fill out?

 

Caregiver has access to medical interpreter when needed

Written visit summary was useful and easy to understand

Invited to join hospital rounds

Written hospitalization summary was easy to understand

 

Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (composite)

Percent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling

Percent of children with and without special health care needs having a medical home (composite)

 

Foundational Standard 3: Insurance Coverage Is Comprehensive and Affordable
Insurance coverage for CYSHCN is accessible, affordable, comprehensive, and continuous. Applicable Measures
The National Survey of Children’s Health PHDS-PLUS CAHPS Health Plan Survey 5.0 CAHPS Chronic Condition Supplement  Pediatric Quality Measures Program Title 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

Why didn’t (child) receive care for [type of care]?

Was it because…
You could not afford it or had no health insurance?

You had no doctor to go to for (child)?

(Child’s) doctor had no one to refer (child) to?

Insurance did not cover the visit?

[Did you get care later than you would have liked because…]

You could not afford it or had no health insurance?

You had no doctor to go to for (child)?

(Child’s) doctor had no one to refer (child) to?

Insurance did not cover the visit?

Health plan customer service (composite)
Rating of health plan
Access to prescription medicines Duration of first observed enrollment
Duration of newborn’s first enrollment
Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (composite)     Percent of children without health insurance Percent of children ages 0 through 17 who are adequately insured (composite)
Standard Domain 1: Identification, Screening, Assessment, and Referral

Identification, Screening, Assessment, and Referral

Applicable Measures
National Survey of Children’s Health CAHPS Health Plan Survey 5.0 Pediatric Quality Measures Program Title V NOM (Data from NSCH) CMS Annual Medicaid EPSDT Participation Report NewSTEPS
Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)

Doctor asked about parental concerns about the child’s learning, development, or behavior, age 0-5 years

Doctor talked about how child feeling, growing, or behaving

 

Pediatric Medical Complexity Algorithm

Children with Disabilities Algorithm

 

Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (composite)

 

Screening ratio

Total eligibles referred for corrective treatment

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

Percent of disorders detected by newborn screening with a confirmed diagnosis by an appropriate medical professional

Percent of missed [newborn screening] cases, reported by disorder

 

Screening

Applicable Measures
PHDS-PLUS CMS Child Core Set HEDIS HEDIS, CMS Child Core Set FECC, PQMP Title V NPM (Data from NSCH) CMS Annual Medicaid EPSDT Participation Report NewSTEPS
Anticipatory guidance and parental education provided by doctors or other health care providers (composite)

Assessment of parent concerns about child learning, development, and behavior and provision of specific information for parents with concerns (composite)

Provision of written or other types of health information to parents on caring for their child, preventing injuries, and ensuring optimal development (composite)

In the last 12 months did (child’s) doctors or health providers:

Have you fill out a survey or checklist about concerns you may have had about (child’s) learning, development, or behavior?

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?

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?

Dental sealants for 6–9 year-old children at elevated caries risk

Developmental screening in the first three years of life

Percentage of eligibles who received preventive dental services

Audiological diagnosis no later than 3 months of age

Annual dental visit

Lead screening in children

 

Childhood immunization status (composite)

Immunizations for adolescents (composite)

Weight assessment and counseling for nutrition and physical activity for children/adolescents

Well-child visits in the first 15 months of life

Well-child visits in the third, fourth, fifth, and sixth years of life

Adolescent well-care visits

 

Electronic health record has immunization and medication information

 

Percent of children, ages 9 through 35 months, receiving a developmental screening using a parent-completed screening tool

 

 Total eligibles receiving at least one initial or periodic screen

 

Timeliness of newborn screening activities (composite)

Percent of eligible newborns not receiving a newborn screen, reported by dried blood spot or point of care screen(s)

Percent of infants that have no recorded final resolution (confirmed diagnosis or diagnosis ruled out by an appropriate medical professional) with the newborn screening program

 

 

Referral

Applicable Measures
National Survey of Children’s Health PHDS-PLUS Pediatric Quality Measures Program FECC, PQMP IDEA Child Count
Problems getting needed referrals, all children Follow-up for children at risk for developmental, behavioral, or social delays (composite)

In the last 12 months did (child’s) doctors or health providers do any of the following…

Refer (child) to another doctor or other health provider?

Refer (child) for speech-language or hearing testing?

 

Follow-up referral after positive developmental screen

Follow-up referral tracking

Follow-up with patient’s family after developmental screening

Care coordinator assisted with specialist service referrals

 

Number and percent of infants and toddlers receiving early intervention services under IDEA, Part C, by age and state.

Number and percent of at-risk infants and toddlers birth through 2 receiving early intervention services under IDEA, Part C, by race/ethnicity and state.

 

 

Standard Domain 3: Access to Care

Access to Care

Applicable Measures
 National Survey of Children’s Health

 

PHDS-PLUS HEDIS, CMS Child Core Set CAHPS Health Plan Survey 5.0 CAHPS Chronic Condition Supplement PICS

 

Title V NOM (Data from NSCH)
Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)

Current insurance benefits meet children’s needs

Children who were not able to receive needed health care in the past year

Children who were not able to receive needed mental health services during the past 12 months

Children who were not able to receive needed medical care during the past 12 months

Unmet need for health care because the service this child needed was not available in their area

Unmet need for health care because there were problems getting an appointment

Unmet need for health care because there were problems with getting transportation or child care

Unmet need for health care because child was not eligible

Unmet need for health care because the office was not open when the child needed care

Unmet need for health care due to cost

Family frustrated in efforts to get services for their children during the past 12 months

Family had problems paying for child’s medical or health care bills

Children who received any type of medical care during the past 12 months

Children who had one or more preventive medical care visits during past 12 months

Time with doctor during last preventive check-up

 

 

When (child) needed care right away for an illness or injury, how often did (child) get this care as soon as you wanted?

In the last 12 months (For children younger than 12 months, since child’s birth) was there any time that (child) needed health care but did not get it?

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 didn’t (child) receive care for [type of care]? Was it because…

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 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?

Children and adolescent’s access to primary care practitioners (composite)

 

Getting needed care (composite)

Getting care quickly (composite)

Child got non-urgent appointment as soon as needed

Child got care for illness/injury as soon as needed

Easy for child to get necessary care, tests, or treatment

Have a personal doctor

 

Access to prescription medicines

Did anyone from your child’s health plan, doctor’s office, or clinic help you get your child’s prescription medicines?

In the last 6 months, how often was it easy to get special medical equipment or devices for your child?

Did anyone from your child’s health plan, doctor’s office, or clinic help you get special medical equipment or devices for your child?

 

Delays: lack of sufficient services

 

Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (composite)

 

 

Access to Specialist Providers

Applicable Measures
National Survey of Children’s Health CAHPS Health Plan Survey 5.0 CAHPS Chronic Condition Supplement FECC, PQMP Title V NOM (Data from NSCH)
Received care from a specialist doctor other than a mental health professional during the past 12 months

Problem obtaining specialist care among those who received or needed a specialist care 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 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

 

Respondent got child an appointment with specialists as soon as needed Access to specialized services (composite)

In the last 6 months, how often was it easy to get this therapy for your child?

Did anyone from your child’s health plan, doctor’s office, or clinic help you get this therapy for your child?

In the last 6 months, how often was it easy to get this treatment or counseling for your child?

Care coordinator assisted with specialist service referrals

 

 

Percent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling

 

Standard Domain 4: Medical Homes and Care Coordination

Medical Home

Applicable Measures
National Survey of Children’s Health

 

PHDS-PLUS CAHPS Health Plan Survey 5.0

 

CAHPS Chronic Condition Supplement PQMP Title 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)

Children who receive coordinated, ongoing, comprehensive care within a medical home (composite)

Children whose families are partners in shared decision-making for their optimal health (composite)

Children who received family-centered care (composite)

Doctors discussed range of health care/treatment options

Doctors helped parents feel like partners in child’s care

Doctors listened carefully

Doctors made it easy for parents to raise concerns or disagree with recommendations

Doctors provided information specific to parents’ concerns

Doctors showed sensitivity to family’s values and customs

Doctors spent enough time with children

Doctors worked with parents to decide together health care/treatment options

Time with doctor during last preventive check-up

Family frustrated in efforts to get services for their children during the past 12 months

Children who were not able to receive needed health care in the past year

Children who were not able to receive needed other health services during the past 12 months

Unmet need for health care because child was not eligible

Unmet need for health care because the office was not open when the child needed care

Unmet need for health care because the service this child needed was not available in their area

Unmet need for health care because there were problems getting an appointment

Unmet need for health care because there were problems with getting transportation or child care

Number of hospital emergency room visits for any health reason in the past 12 months

 

 

Family-centered care that respects, listens to, and partners with parents (composite)

Provision of written or other types of health information to parents on caring for their child, preventing injuries, and ensuring optimal development (composite)

Anticipatory guidance and parental education provided by doctors or other health care providers (composite)

Helpfulness of care provided to parents (composite)

Do you have one person you think of as your child’s personal doctor or nurse?

In the last 12 months:

How often did (child’s) doctors or other health providers take time to understand the specific needs of (child)?

How often did (child’s) doctors or other health providers respect you as an expert about (child)?

How often did (child’s) doctors or other health providers build your confidence as a parent (if grandparent: grandparent)?

How often did (child’s) doctors or other health providers help you feel like a partner in your child’s care?

How often did (child’s) doctors or other health providers explain things in a way you can understand?

How 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?

In 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:

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)?

In the last 12 months did you see or hear any information about the following:

Safety information, such as how to make your house and car safe for (child)

Health care information, such as when and how often (child) should see the doctor or reminders about immunizations

Developmental information, such as things you can do with (child) to help (him/her) grow and learn

 

Doctor explained things in a way that was easy to understand Family-centered care (composite) Follow-up referral after positive developmental screen

Follow-up with patient’s family after developmental screening

Developmental screening follow-up: follow-up referral tracking

 

Percent of children with special health care needs (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)

Medical Home Management

Applicable Measures
CAHPS Health Plan Survey 5.0 PICS FECC, PQMP
How well the child’s doctors communicate (composite)

 

Care team members (CTMs) had access to same medical record

 

Caregiver 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

Applicable Measures
National Survey of Children’s Health PHDS-PLUS HEDIS HEDIS, CMS Child Core Set CAHPS Health Plan Survey 5.0 CAHPS Chronic Condition Supplement Title V NPM (Data from NSCH) Title V NOM (Data from NSCH)
Children who received any type of medical
care during the past 12 months
Children with a personal doctor or nurseUsual source for sick careUsual source for preventive care

Children who had one or more preventive medical care visits during past 12 months

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

Percent of children with a mental/behavioral condition who receive treatment or counseling Annual dental visit

Lead screening in children

 

 

Childhood immunization status (composite)

Immunizations for adolescents (composite)

Follow-up after hospitalization for mental Illness

 

Rating of specialist

Have a personal doctor

Rating of personal doctor

Easy for child to get necessary care, tests, or treatment  

Child got non-urgent appointment as soon as needed

 

Composite: access to specialized services

Did anyone from your child’s health plan, doctor’s office, or clinic help you get your child’s prescription medicines?

 

Percent of children, ages 1 through 17 who had a preventive dental visit in the past year Percent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling

 

Care Coordination

Applicable Measures
National Survey of Children’s Health PHDS-PLUS CAHPS Chronic Condition Supplement PICS FECC, PQMP
Effective care coordination, all children (composite)

Family needed extra help to coordinate child’s health care

Family gets help with coordinating child’s health care among those who needed

Got all needed extra help with care coordination

Time spent coordinating health care for child in an average week

Effective care coordination among those who needed care coordination

Satisfaction with communication among child’s doctor and other health care provider

Health care provider communicated with child’s school, child care provider, or special education program

Satisfaction with communication among child’s doctors and school, child care provider, or special education program

Children who needed a referral to see any doctors or receive any services

Problems getting needed referrals, all children

 

Coordination of care for children requiring multiple types of health care services or seeing more than one health care provider (composite)

In 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?

 

Coordination of care and services (composite)

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?

In 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?

 

Communication with care team members (CTMs) (composite)

Care goal creation/planning (composite)

Team functioning/quality (composite)

CTMs explained things in understandable manner

Family comfortable voicing concerns with CTMs

CTMs listened carefully to what family had to say

CTMs treated family as a full partner

CTMs discussed things that cause family stress

CTMs discussed things that made it hard to care for child

CTMs took the whole family into account

CTMs 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

Has care coordinator

Access to care coordinator

Care coordinator contact in the last 3 months

Care coordinator assisted with specialist service referrals

Care coordinator helped to obtain community services

Care coordinator asked about concerns and health changes

Care coordinator asked about progress towards goals

Care coordinator was knowledgeable, supportive and advocated for child’s needs

Health care provider communicated with school staff about child’s condition

 

Standard Domain 5: Community-Based Services and Supports
  Applicable Measures
Community-Based Services and Supports  The National Survey of Children’s Health CAHPS Chronic Condition Supplement FECC, PQMP Title V NOM (Data from NSCH) IDEA Child Count
Family frustrated in efforts to get services for their children during the past 12 months

Children who ever received special education or early intervention plan, age 1-17 years

Age started special education or early intervention plan, age 1-17 years

Age started receiving special services to meet child’s developmental needs such as speech, occupational or behavioral therapy

Time spent providing health care at home for child in an average week

Family members stopped working/ reduced work hours due to child’s health

 

In the last 6 months, did you get the help you needed from your child’s doctors or other health providers in contacting your child’s school or daycare?

Did anyone from your child’s health plan, doctor’s office, or clinic help you get special medical equipment or devices for your child?

 

Care coordinator helped to obtain community services

 

Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (composite)

Percent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling

 

 

 

 

Number and percent of infants and toddlers receiving early intervention services under IDEA, Part C, by age and state

Number and percent of at-risk infants and toddlers birth through 2 receiving early intervention services under IDEA, Part C, by race/ethnicity and state

 

Standard Domain 6: Transition to Adulthood
Transitions to Adulthood Applicable Measures
The National Survey of Children’s Health FECC, PQMP Adolescent Assessment of Preparation for Transition, PQMP

 

Title V NOM (Data from NSCH)
Children received care in a well-functioning system, age 12-17 years (composite)

Youth received necessary services for transition to adulthood, age 12-17 years (composite)

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)

Percent of adolescents, ages 12 through 17, with a preventive medical visit in the past year.

Children who had time alone with health care provider at last preventive visit, age 12-17 years

Provider discussed shift to adult health care providers if needed, age 12-17 years

Doctors have discussed future insurance needs, age 12-17 years

Doctor or health care provider actively worked with the child to make positive choices about his/her health, age 12-17 years

Doctor or health care provider actively worked with the child to gain skills to manage his/her health and health care, age 12-17 years

Doctor or health care provider actively worked with the child to think about and plan his/her future, age 12-17 years

Youth currently has an up-to-date written plan to meet specific health goals and needs, age 12-17 years

Child has written transition plan Counseling on transition self-management (composite)

Counseling on prescription medication (composite)

Transfer planning (composite)

In the last 12 months:

Did you talk with this [main] provider without your parent or guardian in the room?

Did you and this [main] provider talk about you being more in charge of your health?

Did you and this provider talk about you scheduling your own appointments with this provider instead of your parent or guardian?

How often did you schedule your own appointments with this provider?

How often did you and this provider talk about all of your prescription medicines at each visit?

Did you and this provider talk about remembering to take your medicines?

Did you and this provider talk about you refilling your own prescriptions instead of your parent or guardian?

Did you and this provider talk about whether you may need to change to a new provider who treats mostly adults?

Did this provider ask if you had any questions or concerns about changing to a new provider who treats mostly adults?

Did you and this provider talk about a specific plan for changing to a new provider who treats mostly adults?
Did you and this provider talk about how your health insurance might change as you get older?

Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (composite)
Standard Domain 7: Health Information Technology
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 is a critical component of many state programs, including Medicaid, the Children’s Health Insurance Program (CHIP), and state Title V CYSHCN programs. 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. It compiles current data and quality measures – and avoids creating new measures — given the availability of numerous existing measure sets and states’ limited capacity and infrastructure to design or test new measures.[4] The measures listed in this compendium summarize relevant measures from the most applicable and widely used measure sets, and are 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 the organization who created or maintains the measure, 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.”

Acknowledgments 

This resource was developed by Hannah Eichner, Miara Handler, Kate Honsberger, and Becky Normile from NASHP and Paige Bussanich from AMCHP.  The developers would like to acknowledge guidance and support from Karen VanLandeghem (NASHP) and Kate Taft and Cheryl Clark (AMCHP).

Funded by a grant from the Lucile Packard Foundation for Children’s Health, Palo Alto, California.