The Importance of Complex Care Coordination
Some diseases follow a direct cause and effect – one genetic or environmental cause results in one physiological response. Others are more complicated and are accompanied by a variety of different symptoms affecting various organs and tissues. These complex diseases demand complex care, which often involves appointments with several specialists and can easily take a toll on the lives of patients and their families. This is particularly true in the case of pediatric complex care patients. In these cases, medical appointments and special care needs are often organized and spearheaded by parents. One way of relieving some of the stress placed on families and restoring some organization and quality to the lives of children and parents may lie in the development and proliferation of complex care coordination programs.
Complex care patients require treatment for a variety of symptoms and conditions from different healthcare providers, often at multiple facilities.1 This results in unique challenges that can be difficult for patients, families, and medical professionals to manage. Mitochondrial diseases, for example, manifest themselves in a variety of systems across multiple organs and tissues.2 Children with mitochondrial diseases, therefore, need to see specialists for each part of the body affected and, as a result, have multifaceted needs when it comes to care. Parents of children with complex care needs frequently report feeling stressed and uncertain, likely due to the multiple hats they must wear as both parent and primary caregiver. Acting as a caregiver is no simple task, requiring organization, attention to detail, and a myriad of other skills.3 Additionally, the challenges experienced by their children are not merely physical, and over 20% of children experience emotional and behavioural changes related to hospitalization.4 Psychiatric diagnoses often occur, with 40% of children in pediatric care developing depression.4 With necessary care affecting the mental health of both children and their caregivers, something must be done to improve how care is administered. One potential area of improvement is the coordination of complex care.
When not properly organized, the many facets of complex care only serve to intensify the hardships associated with caring for a child with complex needs. This adds another layer of complexity to these already difficult diseases. Not only are patients experiencing several symptoms and forced to see several specialists, but there may be improper communication between these specialists, resulting in confusion or the unnecessary repetition of diagnostic tests. A 2011 study surveyed a random sample of adults requiring medical attention for serious chronic conditions across 11 developed countries, finding that over one-fifth of them reported instances of miscommunication between healthcare providers.5 There is the potential to further increase stress and decrease the quality of life for caregivers desperately attempting to act as middlemen between medical specialists.
In order to mitigate the burden of complex care organization felt by many parents, a variety of healthcare facilities have begun employing complex care coordinators. SickKids hospital in Toronto, Canada is one of these facilities, offering a variety of services for children and their families.6 The complex care coordinators at SickKids ensure proper communication between medical specialists and provide parents a single point of contact for their questions and concerns. The team also helps to organize diagnostic tests and procedures in an attempt to limit the number of needles, injections, and doctors’ appointments needed. A child seeing multiple specialists may previously have been subject to constant blood tests, each ordered by different professionals. A complex care coordinator can ensure that multiple tests are done at one time, limiting the number of needles a child receives and trips to the clinic a family makes. This simple act can make a world of difference to children and their families. Additionally, the complex care coordination team works together with specialists to create a document detailing the child’s medical history such that emergency workers and new physicians may read the document and gain a better understanding of the child’s unique needs. The document aims to relieve errors due to miscommunication and takes a small burden off parents and caregivers, who previously may have been solely responsible for explaining their child’s condition in emergency situations. These benefits are by no means restricted to patients living in the Toronto area as a variety of other hospitals, including Montreal Children’s Hospital and Boston Children’s Hospital, offer similar services, with a goal of improving quality of care and relieving some of the stress placed on the families and caregivers of children with complex medical needs.7,8
Caring for a child with complex needs is an incredibly difficult task. In many cases, these children see a variety of medical professionals and undergo several tests. Scheduling appointments, organizing hospital trips, and explaining the child’s unique needs is a burden often placed on parents and families. By improving communication between specialists, optimizing appointment scheduling, and reducing the number of invasive procedures necessary, complex care specialists play a tremendous role in minimizing this burden. Though there will always be challenges associated with caring for a child with unique needs, these services can help make the task feel more manageable, resulting in a more comfortable lifestyle for children and families.
1. Sevick MA, Trauth JM, Ling BS, et al. Patients with Complex Chronic Diseases: Perspectives on Supporting Self-Management. J Gen Intern Med. 2007;22(Suppl 3):438-444. doi:10.1007/s11606-007-0316-z.
2. Haas RH, Parikh S, Falk MJ, et al. Mitochondrial Disease: A Practical Approach for Primary Care Physicians. Pediatrics. 2007;120(6):1326-1333. doi:10.1542/peds.2007-0391.
3. Senger BA, Ward LD, Barbosa-Leiker C, Bindler RC. The Parent Experience of Caring for a Child with Mitochondrial Disease. J Pediatr Nurs. 2016;31(1):32-41. doi:10.1016/j.pedn.2015.08.007.
4. Sieben-Hein D, Steinmiller EA. Working with complex care patients. J Pediatr Nurs. 2005;20(5):389-395. doi:10.1016/j.pedn.2005.06.011.
5. Schoen C, Osborn R, Squires D, Doty M, Pierson R, Applebaum S. New 2011 Survey Of Patients With Complex Care Needs In Eleven Countries Finds That Care Is Often Poorly Coordinated. Health Aff (Millwood). 2011;30(12):2437-2448. doi:10.1377/hlthaff.2011.0923.
6. The Hospital for Sick Children. Complex Care Program. http://www.sickkids.ca/PaediatricMedicine/What-we-do/Complex-Care-Program/Index.html.
7. The Montreal Children’s Hospital. Complex Care Service. Montreal Children’s Hospital. http://www.thechildren.com/departments-and-staff/departments/department-of-complex-care-service. Published March 21, 2013.
8. Boston Children’s Hospital. Complex Care Service Overview. http://www.childrenshospital.org/centers-and-services/complex-care-service-program.
Cite This Article:
Coles V., Chan G., Palczewski K., Lewis K., Ho J. The Importance of Complex Care Coordination. Illustrated by C. Scavuzzo. Rare Disease Review. March 2018. DOI:10.13140/RG.2.2.31979.44324.