Specialty care for children with special health care needs is a rapidly growing field and requires efforts from health care professionals, parents, policymakers and communities to establish and implement sufficient, well-rounded quality care.
The federal Maternal and Child Health Bureau defines children with special health care needs (CSHCN) as “those who have or are at an 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.”
An estimated 14.6 million children in the United States aged 0 to 17 years have special health care needs, accounting for 19.8% of the US population in that age group.
“These children account for a disproportionate number of hospital beds and have disproportionately long lengths of stay compared with children without special care needs,” David E. Hall, MD, a professor of clinical pediatrics at Vanderbilt University in Nashville, Tenn., told Infectious Diseases in Children.
Edward L. Schor, MD, senior
vice president of the Lucile
Packard Foundation for Children’s
Health, said a significant barrier
for CSHCN and their families
is access to care.
Photo courtesy of Doug Peck
The increasing number of CSHCN may be attributed to the advancement of the medical field, according to Hall.
“Medical advancements have allowed many of these children to survive. However, in many cases, we haven’t found cures, but formed a chronic disease that lasts over the child’s lifetime,” he said.
Managing various conditions and comorbidities
All CSHCN experience at least one ongoing health condition that requires “above routine need” for health and related services. The most prevalent conditions among CSHCN include asthma, attention-deficit/hyperactivity disorder and obesity. Beyond that, the number of chronic conditions these children experience can seem endless, which poses challenges for physicians.
“Once you take into account the relatively high prevalence of chronic conditions such as asthma, ADHD, and obesity, there are a relatively small number of children in each diagnostic category. It can be difficult for a primary care physician to stay up-to-date on longitudinal care for all of the various chronic conditions these children may have,” Richard C. Antonelli, MD, MS, FAAP, medical director for integrated care and physician relations and outreach at Boston Children’s Hospital, told Infectious Diseases in Children.
Many CSHCN experience multiple conditions and difficulties. When surveyed about 18 health issues, including autism, diabetes and learning disabilities, 41.1% of CSHCN reported experiencing two or more health issues, according to a report from the Data Resource Center for Child and Adolescent Health. Further, when surveyed about 14 functioning difficulties, including breathing and respiratory problems, repeated chronic physical pain and communicating, 91.2% of CSHCN reported having at least one functional difficulty; 72% experienced two or more; and 45.6% experienced four or more.
Neurologically impaired children, who make up a significant number of CSHCN, are often admitted to hospitals for respiratory problems, according to Hall.
“From an infectious disease point of view, problems with respiratory dynamics, such as the ability to cough effectively and take deep breaths, put this population at risk for respiratory problems of any kind. Swallowing dysfunction and gastroesophageal reflux may lead to admissions for aspiration pneumonia,” Hall said. “In addition, they may require treatment for infections of surgically implanted hardware.”
Another issue that can complicate care of these children is vaccine refusal. It is not uncommon for parents to refuse vaccination for their children, Hall said. The perceived connection between autism and measles-mumps-rubella vaccine has made administration of the vaccine particularly difficult for physicians; despite several studies that prove the vaccine is not associated with the onset of autism in children.
Caring for the family in addition to the child
Besides managing various comorbidities and complexities, one of the most difficult challenges for physicians is how to best support the families of CSHCN, according to Edward L. Schor, MD, senior vice president of the Lucile Packard Foundation for Children’s Health in Palo Alto, Calif.
“Having a child with a chronic condition can be very anxiety-provoking for parents,” Schor told Infectious Diseases in Children.
Diagnosis is followed by a seemingly never-ending path of new, unfamiliar experiences for children and families. Unfamiliarity is the root cause of this anxiety, according to Schor.
“Often, parents just do not have experience with chronic health conditions, so they are unsure of where to turn for information or support,” he said.
Approximately 23% of families of CSHCN reported always or usually experiencing parental stress, according to the 2011-2012 National Survey of Children’s Health.
Children require multiple appointments with numerous physicians and subspecialists. Parents miss days of work to take their child to multiple appointments, and many of these families cannot afford to miss a day of work, let alone transportation to the physician’s office. For some parents, caring for their child with special needs is a full-time job.
The appointments themselves can be stressful for children and their parents.
“Anything that is new or different for these children can cause stress,” Ann Reynolds, MD, associate professor of clinical pediatrics at the University of Colorado School of Medicine in Aurora, Colo., told Infectious Diseases in Children. “Waiting in a new doctor’s waiting room can be stressful for children because it’s new or loud and busy. Waiting for a long period of time can cause unrest.”
Besides emotional and financial stress, a significant issue for parents is access to and awareness of care resources. Stemming from unfamiliarity and inexperience, many families are unaware of what resources are available to them.
Providing group care to families of CSHCN not only educates families but also provides a kind of therapy. Meeting families in similar circumstances shows parents they are not alone. The more knowledge and support parents have, the less anxiety they may feel.
“Pairing families of CSHCN with a care coordinator or a family in similar circumstances can educate parents on what resources exist and provide a wider view of opportunities and options,” Schor said. “Many families find it helpful to meet other families in similar circumstances. Getting families together and providing group care is beneficial for families and physicians. Parents find it exceedingly valuable.”
Many families experience geographical barriers as well. Those in rural areas may experience difficulty traveling to necessary appointments because of distance or even a lack of local subspecialists.
David E. Hall
“Coordinated scheduling that enables families to see all specialists in one day can make a huge difference in the lives of these families,” according to Schor. “We simply need to improve telemedicine services in addition to ensuring families who live in rural, isolated areas have a system of transportation to medical centers.”
Benefits of care coordination
Coordinated scheduling is just one of the many benefits of care coordination.
Care coordination “enables the achievement of the triple aim — better care, better health, and lower cost,” according to an AAP policy statement from the Council on Children with Disabilities and the Medical Home Implementation Project Advisory Committee.
Antonelli, echoing the AAP policy statement, told Infectious Diseases in Children: “Care coordination is the set of activities that occur in the space between; the space between providers, between visits, between hospitalizations and the space between organizations.”
There are a number of frameworks of care coordination, but the essential activities are carried out by a dedicated, trained person who is responsible for the coordination of patient care across specialties. This includes maintaining communication between a patient’s multiple specialists to avoid overmedication or conflicting treatment advice; ensuring the patient and family are able to obtain necessary appointments in a timely fashion; educating parents and families on available resources and tips on navigating the payment system; and much more. Ultimately, care coordinators aim to maximize quality and reduce costs for all of those involved in specialty care.
On a technical level, “care coordination involves conducting a prospective needs assessment to define a plan of care, and then having the ability to assure that those goals are achieved by implementing the elements of a care plan,” Antonelli said. “On a strategic level, care coordination is a set of activities and functions that focuses on the assessment of needs for a patient, youth and family to optimize care outcomes.”
For the provider, care coordination is best thought of within a multidisciplinary framework of accountability, according to Antonelli. Because CSHCN have a diverse range of chronic conditions, caring for these children requires a wide range of knowledge, and no individual provider can do everything. Nonetheless, there needs to be a well-defined locus of responsibility for implementing care coordination.
“Sometimes, the more providers that are responsible for a child’s care, the more likely nobody is responsible for overall care. Fragmented care often results, as do expensive, poor quality outcomes,” he said.
For patients, parents and families, care coordination provides resources that enhance their ability to self-manage and have a higher quality of life.
Some frameworks of care coordination involve the broader, non-medical community. To support those needs, there are efforts in many states to develop a capacity of community health workers, according to Antonelli: “Sometimes, these community health workers will have a focus on primary or secondary preventive services, such as obesity interventions with exercise and food security.”
Ultimately, care coordination activities must project into the public and community health sectors, resulting in more accountable outcomes in the medical sector, Antonelli said.
Health care technology may have a pivotal role in care coordination.
Telemedicine, which involves examination via webcam, electronic records and virtual house calls, “can facilitate information sharing among parents/families and their health care teams, and subsequently, health care teams, community partners, and medical and nonmedical providers,” the Council on Children with Disabilities and the Medical Home Implementation Project Advisory Committee said in an AAP policy statement.
Patient registries that track and monitor patients can aid care coordination activities while improving patient safety. These registries can be incorporated using electronic health records and other software tools, according to the advisory committee.
Renee M. Turchi, MD, MPH, medical director of the Center for Children with Special Health Care Needs atSt. Christopher’s Hospital in Philadelphia, has witnessed the benefits of telemedicine firsthand. Although she does not require telemedicine services due to her urban location, “I’ve seen many of my colleagues in rural areas, who do not have access to comprehensive specialty services, forced to manage things that I’ve never managed because I have such access to specialists in a children’s hospital setting,” she told Infectious Diseases in Children. “Telemedicine affords the ability to obtain timely access and improve quality in cases where families would otherwise not be able to see specialists due to geographic or accessibility constraints.”
For parents, telemedicine increases access without making families and children travel great distances, Schor said. However, there are legal barriers to the use of telemedicine across state lines.
“If a patient lives in California and the physician is in Nevada, they’re 50 miles away, but the physician can’t bill for their services because they are not licensed in California,” he said, adding that physicians can only provide care within their state.
Although telemedicine has the potential to be a significant component of care coordination, it cannot be used to its full potential under current laws.
“Resolving the issue of crossing state lines to receive and provide care would be helpful for some of these children,” Schor said.
Challenges of coordination
Care coordination is a valuable solution to fragmented, cost-inefficient care, but various roadblocks limit its implementation.
Although it is possible to have successful office visits with CSHCN, “it takes a lot of pre-planning,” according to Reynolds.
“A lot of specialty care, like care coordination, occurs during non-billable hours,” Hall said. Physicians need time to properly care for CSHCN. Because the health care system runs on a pay-per-visit reimbursement framework, “it seems physicians must often choose between doing an inadequate job in the time you’re allowed or taking the time you need and not being adequately reimbursed, or skewing the day’s schedule.”
Certain treatments may not be covered by insurance, and insurers often determine which facilities patients have access.
“If a specialist feels a child will receive the best care from a specific hospital, but the hospital is not covered by the patient’s insurance, the child receives care from another facility that the referring physician may feel is not the best choice,” Schor said.
The current framework of the US health care system is not conducive to delivering quality care for CSHCN. Health care and insurance systems focus on the handful of diseases that make up the major health concerns of millions of older adults, Schor said.
“The health care system is driven by adult care and chronic disease management for adults. Because they are so common and include such a small list of conditions, the system is designed for a different animal. Regarding children’s health, we have a need for care for a wide diversity of conditions. This makes it difficult to standardize and organize everything,” he said.
Reframing the health care system
“The implementation of care coordination requires consideration of financing models, workforce development, and the development and implementation of tools supporting the provision of care coordination,” according to the AAP policy statement.
Although the current system provides care to a maximum number of patients in a minimum amount of time, true quality care calls for a health care system that focuses more on outcomes rather than number of visits.
The health care system is moving to operationalize an accountability framework for outcomes of cost and quality, according to Antonelli. A focus on quality over quantity enables health care systems and care coordination to work together rather than against each other. Balancing quality-driven care with the volume-based demand of the population is essential. It is likely that the only way to achieve this balance is by developing high-performing patient and family-centered care teams, not only to CSHCN, but all patients.
“When I talk about care coordination, I often use the term value,” Antonelli said. “Care coordination is not only recognized by patients, families and delivery systems, but by purchasers of health care. Care coordination is viewed strategically by various key stakeholders as a way of achieving high value outcomes.”
When considering financial outcomes, fragmented care leads to unnecessary spending.
“One method of achieving these financial outcomes is reduction in care fragmentation and inefficiency within and across health care systems. Fragmentation can be addressed with care coordination,” the Council on Children with Disabilities and the Medical Home Implementation Project Advisory Committee said in its policy statement.
New money is not the solution, according to Antonelli. “Allocating the existing health care dollars into rigorous and thorough care coordination services will lead to better outcomes,” he said.
An accountability framework can “add workforce development for care coordinators, community health workers and other members of the provider team — social workers, nurse practitioners, physician’s assistants, and physicians in general. We can allocate the activities of care coordination across the care team,” Antonelli said.
Shifting the focus from quantity to quality enables providers to deliver the care that CSHCN need while receiving adequate reimbursement for their efforts. Redesigning the health care system to function on an accountability framework may be an arduous task, but all roles in the medical and public health sectors can benefit from a system that delivers quality care in a cost-efficient manner, he said. – by Amanda Oldt
Child and Adolescent Health Measurement Initiative. US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau; 2012 and 2013. Available at: www.childhealthdata.org. Accessed July 11, 2014.
Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee. Pediatrics. 2014; doi:10.1542/peds.2014-0318.
For more information:
Richard C. Antonelli, MD, FS, FAAP, can be reached at Boston Children’s Hospital, 300 Longwood Ave., Boston, MA 02115; email: Richard.Antonelli@childrens.harvard.edu.
David E. Hall, MD, can be reached at Monroe Carell Jr. Children’s Hospital at Vanderbilt University, 2200 Children’s Way, Nashville, TN 37232-9452; email: email@example.com.
Ann Reynolds, MD, did not provide contact information or financial disclosures.
Edward L. Schor, MD, can be reached at the Lucile Packard Foundation for Children’s Health, 400 Hamilton Ave., Suite 340, Palo Alto, CA 94301; email: Edward.Schor@LPFCH.org.
Renee M. Turchi, MD, MPH, FAAP, can be reached at St. Christopher’s Hospital for Children, 3635 North Front Street, Philadelphia, PA 19134; email: Renee.Turchi@DrexelMed.edu.
Disclosure: Antonelli, Hall, Schor, Turchi report no relevant financial disclosures.
Is the medical home physician or care coordinator most helpful in achieving quality care for children with special needs?
The care coordinator is most important.
Cross-sectional analysis of the national survey of children with special health care needs (CSHCN) demonstrates that the 55.2% who receive care coordination have less unmet needs for specialty care than the 44.8% who do not. Receiving care coordination outside of a medical home is associated with less unmet need than getting no care coordination at all. Receiving care coordination in a medical home is associated with the lowest level of unmet need, but the relationship is strongest in higher income groups, suggesting that these families are the ones most able to access and take advantage of the services provided by the medical home.
So shouldn’t these data mean that all care coordination should occur in the medical home? Maybe, if every child could access one. Only 39.3% of CSHCN actually receive care in a medical home. In fact, separate surveys of pediatricians from two different states found that a majority of pediatricians do not want additional CSHCN in their practices. For the majority of CSHCN who do not have access to a medical home, some care coordination is better than none. We should not let the conceptually perfect be the enemy of the practical good that can be done by care coordinators based in Title V programs, waiver programs and children’s hospitals. For the foreseeable future, we will need a mixture of care coordination both inside and outside of the medical home to improve the quality of care for CSHCN.
Rishi Agrawal, MD, MPH, is an assistant professor of pediatrics at Northwestern University Feinberg School of Medicine, in Chicago, and a hospitalist at Ann and Robert H. Lurie Children’s Hospital and La Rabida Children’s Hospital in Chicago. He can be reached at Ann and Robert H. Lurie Children’s Medical Hospital, 225 E. Chicago Ave., Chicago, IL 60611; email: firstname.lastname@example.org. Disclosure: Agrawal reports no relevant financial disclosures.
The medical home is most important.
Every home is a little bit different. The rooms are different, the family members are different, and how the family members use the rooms is different. In any case, a home works best when there is a “head of household” to lead the family. The medical home is the same way. For children with special health care needs (CSHCN), the “head of household” in their medical home is a lead clinician, often a physician.
There is plenty of evidence and consensus that care coordination provided by someone who is not a lead clinician is an essential function for the care of many CSHCN. Designated care coordinators have special knowledge of many resources needed by children and families, including local knowledge that is valuable in helping connect them to these resources. They also have the time to spend with families that lead clinicians often do not.
For many clinicians active in caring for a large number of CSHCN, a care coordinator is on par with activated, informed family members as the most valuable player on their medical home team.
But what if the head of household didn’t know some of their family members or were unaware of how they worked within the family? As the concept of care coordination is embraced by more and more health care organizations, payers and other groups, more families have contact with “coordinators” external to the medical home that they and their medical home team members do not know well, if at all.
Services provided by these coordinators may not be based on needs identified by the child, family or medical home team members, and their activities often are not well integrated into a comprehensive care plan. Health care policy and payment must promote the integration of the work of care coordinators and team leaders underneath the roof of the medical home and discourage care coordination activities external to the larger medical home team.
Christopher Stille, MD, MPH, is the head director and a professor of general academic pediatrics at the University of Colorado School of Medicine, in Aurora, Colo. He can be reached at Children’s Hospital Colorado, 13123 E. 16th Ave., B032, Aurora, CO 80045; email: email@example.com. Disclosure: Stille reports no relevant financial disclosures.