Health professionals must have a multidimensional approach for patients with complex health conditions to regain stable health and function. Integrated Case Management is a highly personalized approach which addresses all segments of the health system, medical issues, behavioral issues, and social barriers. Current problems related to care of the complex patient result from fragmented communications and equally fragmented coordination of medical and behavioral conditions, and perhaps the presence of multiple chronic conditions (Chen et al. 2012). The Agency for Healthcare Quality and Research (AHRQ) defines a complex patient as a person with two or more active conditions (Chen et al. 2012). The Integrated Case Management Manual: Assisting Complex Patients Regain Physical and Mental Health defines complexity as the presence of concurrent medical and behavioral conditions, multiple chronic illnesses, social barriers, and/or non-communicating segments of health system (Kathol 2010).

Complexity occurs when one chronic condition effects the treatment or outcomes of another chronic condition, recognizing the burden of one condition may be greater than another. Complexity not only affects the potential for stability of the patient, but also effects families and caregivers psychologically, socially and financially. Adults with complex conditions have a unique set of challenges, but the pediatric patient with complex conditions can test the abilities of even the most seasoned health professional.

Children with complex conditions are often seen by multiple providers. Fragmented interaction among these providers leads to inconsistent and poorly managed care (Chen et al. 2012). The needs of patients with chronic conditions are not adequately met by the acute care system; they require a defined management plan that includes regular assessment, defined interventions, and well coordinated communication among patients, caregivers and the primary care team (Chen et al. 2012).

Integrated Pediatric Case Management is a relatively new concept, but the well-established foundation of adult integrated case management can be adapted to meet the needs of children and youth with complex conditions (Kathol 2010). Children and youth with complex health conditions are just as likely to experience treatment resistance, symptom persistence, social impairment and high healthcare utilization as the complex adult patient (Kathol 2010). And while there are additional considerations when working with the pediatric population, addressing all barriers to improvement is expected to result in overall progress. When working with pediatric patients with health complexity, additional considerations include the health of the family or caregiver, the child’s attendance and performance in school, which is available to provide assistance and additional support, and whether the child has a safe and nurturing environment. These issues are of equal value to the child’s medical or psychological conditions as they cannot be adequately managed without appropriate support and safety. The parent or caregiver of the complex pediatric patient may also need case management services if they are unstable medically or psychologically in order to ensure improvement in the child’s complexity (Kathol 2010). The pediatric population poses unique challenges, in those children and youth, not of the age of consent, are completely dependent on others like family and caregivers in order to have their needs met (Matlow et al. 2006).

Tips for Parents: It is important to bring to the attention of your care team all areas of challenge your child faces to help create the best plan of care, make sure to share the whole picture across your care providers as it could influence treatment decisions and collaborations.

Tips for HealthCare Professionals: Specialists need to step back and consider how their component of the treatment plan might influence others, and/or how the child’s environment relates to plan execution.

Poor care coordination is not a new or unique problem in healthcare and there are multiple efforts across areas of practice to improve. Care coordination should ensure collaboration and communication between the patient, family/caregiver and the healthcare team. When working with chronically ill and complex children, transition to the care of an adult parent or caregiver is an important facet in the process. Children with complex health conditions often are the victims of poor care coordination in both acute care and outpatient settings (Matlow et al. 2006). Often, no one is identified as a care coordinator, there are too many care coordinators, or those in place are poorly trained and incapable (Matlow et al. 2006).

Common opinion is that families and caregivers should take a leadership role in the care of the child, but often are ill-prepared due to health knowledge deficits (Matlow et al. 2006). As mentioned earlier, complex pediatric patients are often followed by multiple specialty providers and the primary pediatrician may also feel ill-equipped to play a pivotal role in the child’s care coordination due to a lack of knowledge of certain medical conditions and communication with specialists is lacking (Matlow et al. 2006). Improved care coordination is essential to reduce serious consequences such as medication errors, duplication of services, and delay in services, morbidity and mortality.

Care coordination is improved by enhancing relationships: physician, specialists, ancillary providers, patients, families, and caregivers. Enhancing relationships also requires defining what works well for the patient and defining what limitations may be present (Matlow et al. 2006). Some organizations will form care coordination teams with each member assigned a particular area to address. This process seems to make sense as every member of the team has unique areas of strength and knowledge. This team concept can be successful if every member approaches communication and collaboration unilaterally. However, if this is not the method or approach, fragmented communication and coordination will continue.

The authors of The Integrated Case Management Training Manual: Assisting Complex Patients Regain Physical and Mental Health advocate for one case manager working with a patient to assess, plan, and coordinate all care and services. The training itself provides a foundation for working with all health issues regardless of the clinician’s background. One case manager addressing the needs of the patient is essential to the development of a relationship not only with the patient and family/caregiver, but also enhances the relationship with providers and will better define limitations present and what strategies will work best for the patient. One case manager can more effectively communicate and collaborate with all involved to remove barriers to improvement and ensure cohesive care coordination and transitions. The challenges of working with this population are discussed in this section as well as those of families and caregivers. The goal is to learn more about the need for improved care coordination and meeting the needs of families and caregivers.

During the twentieth century, many effective therapies were developed to improve morbidity and mortality of life-threatening illnesses, infectious diseases, and congenital anomalies. Many children that suffered with these conditions did not survive to adolescence, but now often live to early adulthood and beyond (Lindsay and Grossman 2013). Chronic health conditions have biological, psychological, and social and health system implications for adults and children alike, but for children, developmental concerns are an equal implication. Historically, the approach taken to manage illness was organ system-based with emphasis on the physical disease; this does not address the non-biological aspects that are essential to attainment of optimal health.

Treatment of physical or biological conditions may result in cure, long-term improvement, or management of symptoms. Treatment for chronic conditions should be accompanied by preventative services, screenings, appropriate nutrition and physical activity. Often this involves the services of a case manager and/or care coordination team.

Tips for Parents: Ask the care provider team about training opportunities and about connection opportunities in the community.

Tips for HealthCare Professionals: Pediatric healthcare providers should, in collaboration with the family, prepare treatment strategies, monitor outcomes, coordinate visits with diagnostic tests, train caregivers, and educate other community service providers who will be involved with the child. Most important is to provide education and planning for emergencies to all involved in the child’s care.

As part of the comprehensive care plan, assessments and monitoring for the potential of child abuse and neglect as children with disabilities are at greater risk. Integrated into the care plan and in general when working with families and caregivers, are acknowledgement of the family or caregiver’s strengths, stressors that may be present, be ready to offer support and make referral for services that may provide parenting training, home health or respite care that may prevent any maltreatment of the child.

Children with special health care needs or complex conditions have very different experiences than those of healthy children. They are more likely to have altered development as a result of their condition. Developmental difficulties are more likely to occur during periods of normal transition like starting school or adolescence (Lindsay and Grossman 2013). An integrated case management assessment includes questions about a child’s formal education as it is an important aspect of their life. Thanks to the laws under the Individuals with Disabilities Educational Act (IDEA), all children in the United States have access to early intervention and school age education suited to their needs and environment (Lindsay and Grossman 2013). More information about IDEA can be found at: