Short measure description / Quality measure full text / Quality of evidence* / Supporting literature
CARE COORDINATION SERVICES
Has care coordinator / Caregivers of children with complex needs should report that their child has a designated care coordinator. / 2
2
1
2
2
5
2
4 / Peter et al., 20111
Gordon et al., 20072
Farmer et al., 20113
Palfrey et al., 20044
Farmer et al., 20055
McAllister et al., 20096
Wood et al., 20097
Cady et al. 20098
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. / 2
2
1
2
2
5
2
4 / Peter et al., 20111
Gordon et al., 20072
Farmer et al., 20113
Palfrey et al., 20044
Farmer et al., 20055
McAllister et al., 20096
Wood et al., 20097
Cady et al. 20098
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. / 2
1
4 / Gordon et al., 20072
Farmer et al., 20113
Cady et al. 20098
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. / 2
1 / Peter et al., 20111
Farmer et al., 20113
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 the following:
· Caregiver concerns
· Health changes of the child / 2
1 / Peter et al., 20111
Farmer et al., 20113
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 / 2
1 / Peter et al., 20111
Farmer et al., 20113
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 / 2
2
1
2
4 / Peter et al., 20111
Gordon et al., 20072
Farmer et al., 20113
Palfrey et al., 20044
Cady et al. 20098
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:
· Was knowledgeable about their child’s health
· Supported the caregiver
· Advocated for the needs of the child / 2
1
2
2 / Gordon et al., 20072
Farmer et al., 20113
Palfrey et al., 20044
Farmer et al., 20055
MESSAGING
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:
· Current problem list
· Current medication list
· Drug allergies
· Specialists involved in the child’s care
· Planned follow-up
· What to do for problems related to outpatient visit / 2
5
5 / Palfrey 20044
AAP 20059
NCQA 201110
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:
· Was easy to understand
· Was useful / 5
5 / AAP 20059
IOM 200111
Invited to join hospital rounds / Caregivers should report having been invited to join in hospital rounds during their child’s last hospitalization / 2a-3b / Davidson 200712
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:
· Problem list at time of discharge
· Medication list at time of discharge
· Drug allergies
· Specialists involved during the hospitalization
· Planned follow-up
· What to do for problems related to the hospitalization / 5 / NCQA 201110 (extrapolated from outpatient standards)
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 / 5 / NCQA 201110 (extrapolated from outpatient standards)
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. / 4
5 / Palfrey et al., 20044
AAP, 201113
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:
· Immunization record
· List of child’s medications / 4
5 / Palfrey et al., 20044
AAP, 201113
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. / 5 / Savage et al, 200114
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 to a professional medical interpreter (live or telephonic) at all visits for which an interpreter is needed / 2 / Raphael et al., 200915
PROTOCOLS/PLANS
Child has a shared care plan / Caregivers of children with complex needs should report having participated in developing or updating a written shared care plan with their child’s primary care provider in the previous year and receiving a copy of the shared care plan. / 5
4
4
4
4
4
4
4
4
2
2
1
1
1
1
1
1 / AAP, 200216
Gordon et al., 20072
Farmer et al., 20055
Palfrey et al., 20044
Casey et al., 201117
Cady et al., 2009 8
Chen et al., 200018
Weiland et al., 200319
Rocco et al., 201120
Farmer et al., 20113
Dorr et al., 200821
Counsell et al., 200722
Lozano et al., 200423
Unutzer et al., 200224
Katon et al., 200125
Katon et al., 201026
Aiken et al., 200627
Child has written transition plan / Caregivers of children with complex needs, who are age 15 years or older, should report that they participated in developing or updating a written plan for transitioning pediatric medical services over to adult medical services in the previous year and that they were given a copy of that plan. / 5
5
4 / AAP, 200228
Cooley et al., 201129
Kelly et al., 200230
Child has emergency care plan / Caregivers of children with complex needs should report having participated in developing or updating a written emergency care plan within the previous year, and that they were given a copy of the plan they can show to emergency care providers when their child requires emergency room/urgent care services. / 5 / AAP, 201031
Appropriate emergency care plan content / Caregivers of children with complex needs who report that they have an emergency care plan for their child should also report that it includes all of the following:
· A list of medical problems or diagnoses
· A list of current medications and medication allergies
· Their primary care provider’s contact information
· Special considerations for their child (e.g. usual signs suggesting the child is in pain, the child’s baseline mental status, etc.)
· Advance directives / 5 / AAP, 201031
* Quality of Evidence Codes:
1: RCT
2: Cohort studies
3: Case-control studies
4: Case-series
5: Consensus, opinions or “first principles” research
References
1. Peter S, Chaney G, Zappia T, et al. Care coordination for children with complex care needs significantly reduces hospital utilization. J Spec Pediatr Nurs. 2011;16:305–312.
2. Gordon JB, Colby HH, Bartelt T, et al. A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs. Arch Pediatr Adolesc Med. 2007;161:937–944.
3. Farmer J, Clark M, Drewel E, et al. Consultative care coordination through the medical home for CSHCN: Arandomized controlled trial. Matern Child Health J. 2011;15:1110–1118.
4. Palfrey JS, Sofis LA, Davidson EJ, et al. The Pediatric Alliance for Coordinated Care: evaluation of a medical home model. Pediatrics. 2004;113:1507–1516.
5. Farmer JE, Clark MJ, Sherman A, et al. Comprehensive primary care for children with special health care needs in rural areas. Pediatrics. 2005;116:649–656.
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8. Cady R, Finkelstein S, Kelly A. A telehealth nursing intervention reduces hospitalizations in children with complex health conditions. J Telemed Telecare. 2009;15:317–320.
9. American Academy of Pediatrics. Care coordination in the medical home: integrating health and related systems of care for children with special health care needs. Pediatrics. 2005;116:1238–1244.
10. National Committee for Quality Assurance. Patient-Centered Medical Home. Available at: http://www.ncqa.org/programs/recognition/practices/patient-centered-medical-home-pcmh. Accessed May 15, 2017.
11. Institute of Medicine Committee on Quality of Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001.
12. Davidson JE, Powers K, Hedayat KM, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004- 2005. Crit Care Med. 2007;35:605–622.
13. American Academy of Pediatrics. Health information technology and the medical home. Pediatrics. 2011;127:978–982.
14. Savage RC, Pearson S, McDonald H, et al. After hospital: working with schools and families to support the long term needs of children with brain injuries. NeuroRehabilitation. 2001;16:49–58.
15. Raphael JL, Guadagnolo BA, Beal AC, et al. Racial and ethnic disparities in indicators of a primary care medical home for children. Acad Pediatr. 2009;9:221–227.
16. American Academy of Pediatrics. The medical home. Pediatrics. 2002;110:184–186.
17. Casey PH, Lyle RE, Bird TM, et al. Effect of hospital-based comprehensive care clinic on health costs for Medicaid-insured medically complex children. Arch Pediatr Adolesc Med. 2011;165:392–398.
18. Chen A, Brown R, Archibald N, et al. Best Practices in Care Coordination. Baltimore, MD: Health Care Financing Administration, Division of Demonstration Programs, Center for Health Plans and Providers; 2000.
19. Weiland J, Schoettker PJ, Byczkowski T, et al. Individualized daily schedules for hospitalized adolescents with cystic fibrosis. J Pediatr Health Care. 2003;17:284–289.
20. Rocco N, Scher K, Basberg B, et al. Patient-centered plan-of-care tool for improving clinical outcomes. Qual Manag Health Care. 2011;20: 89–97.
21. Dorr DA, Wilcox AB, Brunker CP, et al. The effect of technologysupported, multidisease care management on the mortality and hospitalization of seniors. J Am Geriatr Soc. 2008;56:2195–2202.
22. Counsell SR, Callahan CM, Clark DO, et al. Geriatric care management for low-income seniors: a randomized controlled trial. JAMA. 2007;298:2623–2633.
23. Lozano P, Finkelstein JA, Carey VJ, et al. A multisite randomized trial of the effects of physician education and organizational change in chronic-asthma care: health outcomes of the Pediatric Asthma Care Patient Outcomes Research Team II Study. Arch Pediatr Adolesc Med. 2004;158:875–883.
24. Unutzer J, Katon W, Callahan CM, et al. Collaborative care management of late-life depression in the primary care setting: a randomized controlled trial. JAMA. 2002;288:2836–2845.
25. Katon W, Rutter C, Ludman EJ, et al. A randomized trial of relapse prevention of depression in primary care. Arch Gen Psychiatry. 2001;58:241–247.
26. Katon WJ, Lin EH, Von KorffM, et al. Collaborative care for patients with depression and chronic illnesses. N Engl J Med. 2010;363: 2611–2620.
27. Aiken LS, Butner J, Lockhart CA, et al. Outcome evaluation of a randomized trial of the PhoenixCare intervention: program of case management and coordinated care for the seriously chronically ill. J Palliat Med. 2006;9:111–126.
28. American Academy of Pediatrics. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110:1304–1306.
29. Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128: 182–200.
30. Kelly AM, Kratz B, Bielski M, et al. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics. 2002;110:1322–1327.
31. American Academy of Pediatrics. Policy statement–emergency information forms and emergency preparedness for children with special health care needs. Pediatrics. 2010;125:829–837