Chronic Condition Management:
New perspectives in care delivery for CSHCN
The role of the primary care physician
in providing a medical home is to utilize basic knowledge, professionally
endorsed policies, best practice models and community resources while
providing care that is accessible, coordinated, continuous, comprehensive,
family-centered, compassionate and culturally competent. This web content
provides the tools to enable physicians to do just that.
Identifying Children with Special Health Needs
Identifying children that have special health care needs within your practice
is a vital step in chronic condition management and the provision of a
medical home. Approximately 12 to 15% of patients in a typical primary
care setting have special health care needs. Who are the children that
will be the focus of enhanced services? The process of identification
yields several positive results:
- Increases knowledge of those children with chronic conditions for
all office staff;
- Improves communication between the family and practice staff;
- Allows for scheduling specific to the needs of the child and family
(longer appointments, time of day and any other special accommodations)
- Provides a means to “pull” certain high risk populations
or diagnoses for chronic condition management such as determining priority
for flu shots.
Developing a definition of CYSHCN to use in the identification process
helps to get this process rolling. There is a wide array of health conditions
that may cause physical and emotional challenges. The US Maternal and
Child Health Bureau offers this definition:
“Children with special health care needs are those who have
or are at increased risk for a chronic physical, developmental, behavioral,
or emotional condition and who also require health and related services
of a type or amount beyond that required by children generally.”
The definition you choose will guide which patients are included in your
special needs group. Those patients then have their charts identified
either by a different colored chart, a sticker or an electronic marker,
such as “CYSHCN”, or an alert box on the computer.
For most practices, the process of identification is ongoing as patients
are seen for appointments and complex needs are identified. It is also
important to recognize that not all children with chronic health conditions
require special services. Some children may have stable health conditions
and be functioning very well.
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Strategies for Developing a Practice Registry of
The following strategies are offered as easy and practical
ways that a practice can begin to define and identify children and youth
with special health care needs (CYSHCN) within their practice.
Practices frequently begin with staff recall - a personal recall of patients
whom they consider CYSHCN, as a starting point.
Computer Generated Lists
Practices have printed a list of all active patients, grouped by their
primary care physician, and asked each provider to identify the patients
that meet the defined selection criteria.
For practices with computerized systems and scheduling, The Center
for Medical Home Improvement provides a list
of ICD-9 codes that can be used in the identification process. This
list is very comprehensive, and can be overwhelming when first starting
the identification process. Rather than utilize the list in its entirety,
practices can choose those diagnoses that they feel are more complex and
most appropriate to initially focus medical home services. A practice
can then plan to run computer generated reports for certain codes/diagnoses
to identify patients who would benefit from a medical home.
with Special Health Care Needs (CSHCN) Screener is an easily administered
5-item parent survey which can be conducted in person or by telephone.
An affirmative response on any question identifies a child with special
Questionnaire for Identifying Children with Chronic Conditions-Revised
(QuICCC-R) is a 16-item validated interviewer-administered instrument
for identifying children with chronic and disabling conditions. It is
available in both English and Spanish and is administered either by telephone
or in person to the parents or guardians of children under the age of
Some children with chronic conditions may be functioning very well and
require few or no special services. Two examples of tools that rate the
complexity of a child's chronic condition and related service needs include:
These tools can be used to identify the level of complexity and/or intensity
involved in supporting and managing children with special health care
needs in your practice, which can then be used for planning proactive
care such as scheduling flu vaccinations, etc.
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The Clinical Risk Group Classification
Risk Groups (CRGs) use enrollment and claims or other encounter level
data to classify individuals into mutually exclusive categories and assign
each person to a severity level if they have a chronic health condition.
The commercial software for CRGs has been developed by 3M Health Information
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script—to enable staff to better serve families. A
simple script can be developed in which families are asked by the receptionist
if there are any special needs to consider or special requests which will
make the child’s visit go more smoothly. This information is documented
on the schedule for the day and in the child’s record for future
“Fast Track” to exam room - to help those
children who do not do well in a waiting room setting (either with other
children or with a wait). For example, an autistic child and parent are
escorted directly to an exam room to wait for their appointment.
Longer appointment times - to promote more effective
time management. Knowing that CYSHCN typically require more time, longer
appointments are automatically scheduled.
Visit preparation - to prepare for the child’s
office visit provides benefits for the child and family as well as the
practice staff. The primary benefit is improved communication to promote
pro-active primary care. Practices can gather individualized information
about the strengths and needs of families at office visits to better meet
these needs and more effectively coordinate services.
Available tools for this Preparation
- Medical Home Visit Card - this handout for families addresses important
points to help them prepare for their child’s medical appointment
and “Make each doctor’s appointment work for you!”
(one side in English
and one side in Spanish.)
questionnaire - this questionnaire is given to patients and families
to complete in the waiting room prior to the appointment. It solicits
areas of concern and or discussion. Office staff can review the questionnaire
before the child sees the physician so that they can prepare for specific
needs/concerns, such as the need for care coordinator assistance or
educational materials. Families should be asked if assistance is needed
in completing the form. This sample was developed by Exeter Pediatrics,
VT and is included in the Medical Home Improvement Toolkit created
by the Center for Medical Home Improvement.
Visit Form - this tool can be used to help families document their
concerns and issues about their child’s health (changes in medication,
referral needs, updated therapy or specialty visits, etc) that they
wish to discuss at the visit.
Summary Form - this form, developed by Pediatric Health Associates,
IL, can be used to outline the treatment plan and what follow-up care
is needed. Both the family and the practice staff receive a copy of
the Visit Summary to help clarify "next steps" and define
follow-up responsibilities. This helps to promote family-centered,
comprehensive and coordinated health care.
questionnaire - this form is a companion to the pre-visit questionnaire
that allows families the opportunity to provide feedback on the office
visit and how well the needs and concerns were addressed. This sample
was developed by Exeter Pediatrics, VT and is included in the Medical
Home Improvement Toolkit created by the Center for Medical Home Improvement.
Care Plan development - to systematically outline the
child's health care needs, treatment plans, medications, specialty health
care providers and more. The care plan should reflect the needs and priorities
of the child, as perceived by the parents, and address all of the necessary
medical services that require future attention or follow-up. The plan
should be regularly updated, as changes occur, and shared with all of
the health care providers caring for the child. This tool can be used
to help those caring for a child to communicate and plan care collaboratively.
There are many different care plans that have been developed, here are
two that we offer as examples:
Having a staff person who serves as a Care Coordinator can help the practice
more efficiently provide care to CYSHCN and their families. The Care Coordinator
can work with families to identify needs, develop a plan of care and coordinate
care with other health care providers and community resources.
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“scripts” - to promote family-centered coordinated
care. Families are given a referral form that identifies who they will
be seeing, why they are being referred and where they need to go. These
forms can be used with referrals to community agencies, medical equipment
back forms - to facilitate communication between the pediatrician
and specialty care providers. They are given to families for appointments
with the child’s specialist and the specialist then faxes back the
recommendations for further care to the pediatrician.
“Valet” parking - to improve access for
families. A staff member meets the family as they arrive for their appointment
and stays with the child while the parent parks the car or parks the car
for the parent as they go into the office to sign in their child.
Bulletin boards in the waiting area - to share educational
information with families as well as post information about helpful community
resources including support groups. Suggested topics could include information
about asthma, ADHD, diet related to obesity prevention, epilepsy, transition
to adult health care, autism and other commonly seen chronic health conditions.
Educational handouts on these issues may also be helpful.
Internet access for families - to support those families
that do not have internet access. Some practices have placed a computer
in the waiting area, so families are able to obtain diagnosis-specific
information, family support networks, and additional state and local resource
information. Web sites could be saved as favorites on topics related to
autism, ADHD, epilepsy, diet related to obesity prevention, transition
issues and links to the DSCC web site to learn about available services
and information (financial assistance, care coordination, home care waiver
program, transition assistance, and the principles of medical home).
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Policies and Best Practice Guidelines
The following is a brief list of the more pertinent clinical policies
and best practice models that can be used as a guide to make change and
improve health care quality. It is not a complete list. Recognizing that
practices are already busy providing care and that change is challenging,
choose one at a time and slowly integrate the recommendations into your
for the Diagnosis and Management of Asthma in Children is intended
to help pediatricians, primary care physicians, and other clinicians/health
care professionals diagnose and manage patients with allergic diseases.
It was developed by the Pediatric Asthma Committee, a multidisciplinary
and multi-organizational group of US asthma and health care experts. The
guide includes the recommendations from the NHLBI "Guidelines for
the Diagnosis and Management of Asthma - Update on Selected Topics."
Asthma: Emergency Care for Emergency Care Professionals is an online
slide presentation for nurses, physicians, prehospital providers developed
by the Illinois Emergency Medical Services for Children (EMSC). This educational
module provides an overview of the essential components of pediatric asthma
management in the emergency department, including patient/family education
resources. It addresses evidence-based best practice guidelines, national
and local asthma statistics, barriers and misconceptions, patient/family
education, and numerous statewide asthma resources. The course has been
approved for 2.5 hours of nursing CEU/Category II CME credits.
Managing Childhood Asthma in Primary Care: A Quality Improvement
Program is an online slide presentation, and podcast for primary
care physicians, and nurses developed by the Illinois Academy of Family
Physicians for the Your
Healthcare Plus program, sponsored by the Illinois Department of Healthcare
& Family Services (HFS). This educational module provides information
on the prevalence of diagnosed asthma and asthma symptoms in children
and young adults; it discusses the guidelines used for diagnosis of childhood
asthma and helps users evaluate appropriate use of pharmacologic agents
and non-pharmacologic therapies for acute and long-term therapy. This
module also includes information on how to educate patients and caregivers
on how to reduce environmental asthma triggers and improve self-management
with action plans. A quality improvement tool is included to help practices
implement and sustain changes in their practice which will improve the
care of asthma patients.
Attention-deficit/hyperactivity disorder (ADHD) is the most common neurobehavioral
disorder of childhood. ADHD is also among the most prevalent chronic health
conditions affecting school-aged children. The core symptoms of ADHD include
inattention, hyperactivity, and impulsivity. Diagnosis
and Evaluation of the Child With Attention-Deficit/Hyperactivity Disorder
provides recommendations for the assessment and diagnosis of school-aged
children with attention-deficit/hyperactivity disorder (ADHD). Treatment
of the School-Aged Child With Attention-Deficit/Hyperactivity Disorder
provides evidence-based recommendations for the treatment of children
diagnosed with attention-deficit/hyperactivity disorder (ADHD). This guideline
primarily addresses children with ADHD but without major coexisting conditions.
The management of epilepsy in the pediatric patient requires careful evaluation,
classification, and pharmacologic treatment. Behavioral
and Cognitive Effects of Anticonvulsant Therapy presents an overview
of pediatric studies of antiepileptic drugs and behavioral/cognitive function.
Pediatric Epilepsy Syndromes with New Antiepileptic Drugs reviews
available case reports and clinical trial data related to the use of newer
anti-epileptic drugs in the chronic management of epilepsy syndromes in
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Care Coordination is a collaborative process that links children and families
to services and resources in a coordinated manner to maximize the potential
of children and provide them optimal health care. Care coordination is
a vital component of the medical home.
Care Coordination includes assessing, planning, implementing, and evaluating
options and services to meet the child and family's individual needs.
To learn more about care coordination and how it can be implemented within
a practice, please visit the following web sites:
National Center for Medical Home Implementation
Provides tools to assist in the coordination of care at the practice,
community, and state level.
Care Coordination: Integrating Health and Related Systems of Care
for Children with Special Health Care Needs. PEDIATRICS Vol. 104
No. 4 October 1999, pp. 978-981.
- Care Notebooks
A common problem facing the parents of children with special health
care needs (CSHCN) is keeping records of their children’s medical
history and current treatment plans so that they can be easily accessible.
As a result, the American Academy of Pediatrics' National Center for Medical Home Implementation has developed an Online Care Notebook that gives parents
of CSHCN the opportunity to create a personal notebook that fits their family
and child’s needs.
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Transition to Adulthood
Policy Statement on the Age Limit of Pediatrics indicates the purview
of pediatrics includes the physical and psychosocial growth, development,
and health of the individual. This commitment begins prior to birth when
conception is apparent and continues throughout infancy, childhood, adolescence,
and early adulthood when the growth and developmental processes are generally
completed. The responsibility of pediatrics may, therefore, begin with
the fetus and continue through 21 years of age. Anticipating this transition
point can be accomplished by having signs in examining rooms indicating
that your practice wants adolescents to make the transition to adult health
care providers by the age of 21 years. There are special circumstances
(e.g., a chronic illness and/or disability) in which, if mutually agreeable
to the pediatrician, the patient, and when appropriate the patient’s
family, the services of the pediatrician may continue to be the optimal
source of healthcare past the age of 21 years.
Role of the Pediatrician in Transitioning Children with Disabilities and
Chronic Illnesses from School to Work or College is to provide anticipatory
guidance and to promote self-advocacy and self-determination. Knowledge
of the provisions of the key federal laws affecting vocational education
is essential for the pediatrician's successful advocacy for patients.
Pediatricians can bring much strength to this transition process, including
a longitudinal relationship with the family that offers multiple opportunities
for providing anticipatory guidance and constructive interventions.
Research shows the transition of children and youth with special health
care needs from pediatric health care systems to adult health care systems
is disproportionate when compared to the transition of typical adolescents.
Transition to adult health care may be difficult. Parents and health care
providers need to work in a collaborative team approach with the needs
and desires of the child at the center of the plan. Physicians can be
proactive in assisting CYSHCN to make the transition to adult health care
by age 21 years by arranging consultations with pre-arranged adult primary
care physicians beginning at the age of 12 and continuing this process
every two years thereafter. It gives the adolescent the opportunity to
experience adult health care and be a self spokesperson and advocate for
Transitions involve changes, such as adding new expectations, responsibilities
and resources while letting go of others. Transition is an important part
of the medical home process. Visit the UIC-DSCC
Transition web site for more detailed information and valuable tools
and resources for successful transitions.
Newborn Genetic Screening
Illinois, along with 6 other states, is a member of the Region 4 Genetics
Collaborative. This collaborative provides a forum for these states to
share available newborn screening and genetic resources, an advancement
that will result in improved geographic distribution of genetics expertise
throughout the region. The Region
4 Genetics Collaborative web site has comprehensive information about
newborn screening and providing a medical home for children with genetic
Newborn Hearing Screening
Each year about 500 children in Illinois are born with congenital hearing
loss. The technology now exists to detect hearing loss in newborns that
are only a few hours old. This simple, non-invasive test can save hundreds
of thousands of dollars in special education costs. Research has shown
that infants who have congenital hearing loss can have normal language
skills and cognitive development by the time they are ready for school
if amplification devices and therapy are provided by 6 months of age.
Early identification, therefore, is imperative. The Illinois
Newborn Hearing Screening Program web site has more information about
the programs efforts and the services provided.
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Both the Illinois Chapter of the American Academy of Pediatrics (ICAAP)
and the Illinois Academy of Family Physicians (IAFP) provide opportunities
for ongoing educational training. In addition to professional development
experience, participation in these programs allows practices to promote
healthy patients and families and also instructs families on your commitment
to quality care.
The Illinois Chapter of the American Academy of Pediatrics provides an
office-based educational program on asthma. For more information about
the asthma program and other available preventive-type educational programs,
refer to the ICAAP
Illinois Academy of Family Physicians provides continuing medical education
(CME) programs throughout Illinois and with the national Academy. The
website provides a listing of all IAFP meetings, including many CME opportunities,
the AAFP courses and conferences, and CME meetings around the state. For
more information about these programs, refer to the IAFP
The medical home care model has been adapted from the Chronic
Care Model for improving chronic illness care in primary care settings.
Six domains organize the model; each represents numerous change concepts
and innovative action ideas for a strong health care environment supportive
of a medical home for every child and youth with special health care needs
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