Table 1.

Developed FECC Quality of Care Measures

CARE COORDINATION SERVICES
Short measure description	Measure full text
Has care coordinator	Caregivers of children with complex needs should report that their child has a designated care coordinator.
Access to care coordinator	Caregivers of children with complex needs who report that their child has a designated care coordinator should report that they know how to access their care coordinator.
Care coordinator helped to obtain community services	Caregivers of children with complex needs who report having a designated care coordinator and who require community services should also report that their care coordinator helped their child to obtain needed community services in the last year.
Care coordinator contact in the last 3 months	Caregivers of children with complex needs who report having a care coordinator should also report that their care coordinator has contacted them (via face-to-face contact, telephone, email, or written correspondence) or attempted to contact them at least once in the last 3 months.
Care coordinator asked about concerns and health changes	Caregivers of children with complex needs who report having a care coordinator and who report that their care coordinator has contacted them in the last 3 months should also report that their care coordinator asked them about: (1) Caregiver concerns, and (2) Health changes of the child
Care coordinator asked about progress towards goals	Caregivers of children with complex needs who report the following: having a designated care coordinator, having a copy of a written shared care plan for their child, and having been contacted by their care coordinator in the last 3 months should also report that their care coordinator asked them about progress towards goals documented in the patient's shared care plan
Care coordinator assisted with specialist service referrals	Caregivers of children with complex needs who report having a care coordinator for their child should also report that the care coordinator assists them with specialty service referrals by ensuring that the appointment with the specialty service provider occurs
Care coordinator was knowledgeable, supportive and advocated for child’s needs	Caregivers of children with complex needs who report having a care coordinator should also report that their care coordinator: (1) Was knowledgeable about their child’s health, (2) Supported the caregiver, and (3) Advocated for the needs of the child
Caregiver has access to medical interpreter when needed	Caregivers of children with complex needs or children with complex needs who self-identify as having a preference for conducting medical visits in a language other than English should have access at all visits to a professional medical interpreter (live or telephonic).
MESSAGING
Short measure description	Measure full text
Appropriate written visit summary content	Caregivers who report receiving a written visit summary during the last 12 months from their child’s main provider’s office should report that it contained the following elements: (1) Current problem list, (2) Current medication list, (3) Drug allergies, (4) Specialists involved in the child’s care, (5) Planned follow-up, (6) What to do for problems related to outpatient visit
Written visit summary was useful and easy to understand	Caregivers who reported ever receiving a written visit summary in the last 12 months from their child’s main provider’s office should report that the summary: (1) Was easy to understand, and (2) Was useful
Invited to join hospital rounds	Caregivers should report having been invited to join in hospital rounds during their child’s last hospitalization
Appropriate written hospitalization summary content	Caregivers should report receiving a written visit summary of their child’s last hospitalization at the time of discharge, and they should report the summary contained the following elements: (1) Problem list at time of discharge, (2) Medication list at time of discharge, (3) Drug allergies, (4) Specialists involved during the hospitalization, (5) Planned follow-up, and (6) What to do for problems related to the hospitalization
Written hospitalization summary was easy to understand	Caregivers who received a written summary of their child’s hospitalization at discharge should report that the information contained in the visit summary was easy to understand
Caregiver has access to electronic health record	Caregivers of children with complex needs should report having access to an electronic health record to look up information about their child’s visits and health care.
Electronic health record has immunization and medication information	Caregivers of children with complex needs who report having access to an electronic health record should also report that it includes the following health information: (1) Immunization record and (2) List of child’s medications
Health care provider communicated with school staff about child’s condition	Caregivers of children with complex needs who report their child’s condition causes difficulty learning, understanding, or paying attention in class should also report that one of their child’s health care providers (i.e., primary care physician, specialist physician, care coordinator, nurse practitioner, nurse, social worker, etc.) communicated with school staff at least once a year about the educational impacts of the child’s condition.
PROTOCOLS/PLANS
Short measure description	Measure full text
Child has shared care plan	Caregivers of children with complex needs should report that their child’s primary care provider created a shared care plan for their child.
Child has written transition plan	Caregivers of children (age 15 years or older) with complex needs should report that their child’s main provider created a written transition plan for their child.
Child has emergency care plan	Caregivers of children with complex needs should report that their child’s main provider created an emergency care plan for their child.