By: Leah Sarah Peer
Centuries ago, infectious diseases posed a major threat to health, but today, in developed nations, chronic health conditions take a greater toll on individuals, families and youth as well as the services and systems that care for them. In Canada alone, over half a million children are living with a long-term chronic or a mental illness. Although advancements in medicine and improvements in health management have allowed them to live longer, it is imperative that we address the determinants of well-being for a subpopulation of those living with complex chronic health conditions while placing an emphasis on improving existent care models employed at hospitals. The consequences of neglecting the unique challenges faced by children living with chronic illness are far reaching into adulthood and leave a long-lasting psychological, emotional, and economic impact on families and our society.
Children with chronic health conditions are referred to as children with special health care needs (CSHCN) and comprise a broad group of children who have medical, developmental, or psychiatric conditions. Additional healthcare services are a necessity for CSHCN who have varied conditions such as type 1 diabetes, attention-deficit hyperactivity disorder (ADHD) and cerebral palsy. The most complex cases of CSHCN are known as children with medical complexity (CMC) as they are dependent on the healthcare system to survive. As such, CMC individuals have high family-identified needs; complex chronic disease necessitating specialized care; functional disability; and high health care utilization. CMC are diagnosed with more than one complex chronic condition that is often multisystem and severe and are limited in their movement while reliant on technology such as feeding tubes. With multiple trips to the hospital and a diverse set of specialists to follow-up with, the clinical management of CMC presents significant social and financial challenges not only to their caregivers but also to the health providers who care for them.
Care Models for CSHCN:
With existing approved care models adopted by British Columbia’s Ministry of Health Services and Ontario’s Family Health Network, these models fail to address the unique factors present when treating CSHCN. This includes the awareness of the increased effect of a chronic condition on child development, the fragile emotional state of children, and the social ramifications a child faces when suffering from a complex medical condition. These care models also do not recognize the extent of interdisciplinary collaboration required in the treatment plans of CSHCN. Many different caregivers and organizations are consulted in the ongoing process of treating CSHCN. This is also impacted by an inherent difficulty in information sharing despite the use of electronic records.
In Canada, there are two types of care models that are applied to serving CSHCN. The chronic care model encourages patients to be informed and self-manage their symptoms while working with well-prepared caregivers. Although this model leads to favorable results in adults, it neglects the importance of the more sensitive factors present in treating children. The medical home care model, alternatively, is a family-centered approach that can yield positive results in CSHCN. However, the accessibility of a medical home is lacking, especially in the cases where they are most needed.
Comparison of Chronic Conditions in Adults and Children
The challenges of chronic conditions in children are different from adults. The main chronic conditions present in the adult population include a narrow range of illnesses from chronic obstructive pulmonary disease, arthritis, hypertension, and depression. Children, however, suffer from a larger number of uncommon conditions such as birth defects, developmental disabilities, rare diseases, diabetes, and cancer. In CSHCN and CMC, the unfamiliarity and confidence of primary care physicians in these cases make diagnoses and management more difficult, as standards of care are not well researched nor have guidelines been developed. Therefore, another disparity exists as CSHCN are underrepresented in medical literature, leaving little to no evidence available to inform practitioner decisions in the care of CSCHN. Even when the condition is the same, children are affected by added layers of complexity as treatments for a symptom or single issue may lead to negative consequences in other areas of health and well-being. Caring for CSHCN presents obstacles that are difficult for caregivers to navigate. CSCHN are at much higher risks of disruptions to social and emotional development, including family and peer relationships, behavior, and educational achievement. They are also more likely to face negative outcomes due to the complexity of their conditions at their age, as well as their high rate of interaction with health care systems. Approximately 78% of CMC are likely to be readmitted to the hospital within a short to medium timeframe after release within two years. Due to the lack of medical research on treating children with complex medical conditions, as well as the nature of these conditions presenting in children, there is a higher risk of medical error. Since CMC have 13 different physicians representing six subspecialties, there is a need for holistic care and communication amongst health care providers and facilities involved. With one-half of CMC families reporting an unmet medical service need, and one-third experiencing difficulty accessing non medical services, there is an urgency for healthcare systems to do better.
An Interdisciplinary Approach and Identifying the “Key Worker”
Due to the nature of chronic conditions, a single physician cannot provide care to cover all the needs of a patient. The use of a “care map” to provide a schema of the team of professionals consulted for a child’s health care was recommended by Dr. Dewan, as this method is oriented by the patient’s family and helps promote communication between caregivers, potentially leading to group appointments. Another suggested idea in the case of CSHCN is for members of the caregiving team to meet as a team to share information and discuss treatment strategies. To improve the efficacy of treating CMC, clinics can schedule days with longer appointments to treat complex conditions or treat multiple CMC on the same day to improve collaborative efforts. It is important to identify the “key worker” in a child’s health care plan. This practitioner will provide the most tailored care and serve as a point of contact. They will also be instrumental in coordinating care efforts and connecting health care to social services. A key worker does not necessarily have to remain the same person throughout a child’s care and does not need to be a specialized role. The key worker should be someone who makes sense in the schema of a child’s health care plan, such as someone at a health care location the child frequents.
The present era of health systems across Canada provides opportunity for us, as a nation, to address the unmet health needs of children and adolescents with complex chronic health conditions. In this particularly vulnerable patient population, care must be comprehensive, coordinated, and competent, allowing for integrated collaboration, management of clinical complexities and the empowerment of both the child and their family through written reports and dedicated discussion visits. Health professionals must ensure that the care they provide is child-specific and that it places an emphasis on coordination between tiers of the healthcare delivery system, as well as the health education sector training medical students and residents.
At the same time, we must raise awareness about our recommendations for health reform in Canada. As youth, this means advocating for CSHCN and CMC so that their quality of life continues to improve, ensuring that their health needs are not lost within the larger healthcare debates in our country. Given the impact of complex health conditions on child well-being and its potential to span a lifetime, systematic efforts are needed to build a child-focused chronic care model that places greater attention to the broader challenges faced by this population. Alongside the provision of medical care, there is also a need to create better support systems for families, and to develop unique methods for monitoring the quality of long-term chronic care - these amendments must be incorporated into our models of care serving CSHCNs.
Leah Sarah Peer is a medical student at Saint James School of Medicine in Chicago, USA. She holds a Bachelor of Science with a Specialization in Biology and a Minor in Human Rights from Concordia University in Montreal, Canada. Mingling her passion for medicine with her human rights endeavours, Leah aspires to serve humanity beyond the bounds of medical knowledge.