Children with medical complexity and victims of medical child abuse may have similar clinical presentations. Atypical or unexplained signs and symptoms due to rare diseases may lead providers to suspect medical child abuse when not present. Conversely, medical child abuse may be the cause of or coexist with medical complexity. Careful consideration of whether or not medical child abuse is present is essential when assessing a child with medical complexity since either diagnosis has significant consequences for children and families.
Key points
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Medical complexity and medical child abuse (MCA) may present similarly.
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Unusual and/or unfamiliar conditions or disease presentations may raise concerns about MCA when none is present.
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Recognizing MCA when a child presents with apparent medical complexity requires a high index of suspicion.
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In both conditions, clinical judgment, longitudinal observation, and consultation with appropriate specialists are often needed to arrive at a diagnosis while avoiding unnecessary medical diagnostic testing.
Introduction
Defining Children with Medical Complexity and Medical Child Abuse
Children with medical complexity (CMC) and children who are victims of MCA often have similar clinical presentations. This can lead to an erroneous diagnosis of MCA when not present or a missed diagnosis of MCA when it is an underlying or coexisting condition in a case of apparent medical complexity. Either of these outcomes results in harm to the child and family. The purpose of this article is to describe CMC and MCA, discuss factors that may complicate these diagnoses, and propose an approach to the assessment of CMC designed to avoid either an erroneous or missed diagnosis of MCA.
CMC are a heterogeneous subset of children and youth with special health care needs who typically have multiple chronic medical conditions. Estimates of the prevalence of CMC are generally less than 1% of the US pediatric population but may be as high as 5%, depending on the number of chronic medical conditions and level of resource utilization used to define the population. CMC often have neurologic impairment, functional limitations, and technology dependence and may have unusual diagnoses and treatments. Their care and treatment typically require multiple medications, multiple specialists, and significant home nursing or other specialized care. CMC also have high tertiary center resource use and very high health care costs, accounting for 30% to 40% of pediatric health care dollars. Social determinants of health, such as language barriers, poverty, and poor access to care as well as mental or behavioral health problems, exacerbate the difficulties faced by CMC and their families in seeking care. Studies indicate there are multiple unmet needs for the children and considerable stress in the lives of families of CMC.
MCA, often termed, Munchausen syndrome by proxy , is a form of child maltreatment in which a child receives unnecessary and harmful or potentially harmful medical care at the instigation of a caregiver. Known by many names since it was first recognized ( Box 1 ), MCA involves a caregiver who exaggerates or fabricates symptoms that cannot be independently verified or who intentionally induces symptoms or signs in a child. As in other types of child maltreatment, the abnormal caregiver-child relationship in MCA causes significant neurodevelopmental harm to the child that results in short-term and long-term negative health consequences of chronic toxic stress. In addition, MCA causes physical harm through unnecessary medical testing or procedures, including phlebotomy, repeated physical examinations, hospitalizations, surgeries, and medications with resulting pain, injury, and risk of complications. These unnecessary medical interventions result in a morbidity rate of 100% (eg, medical complications and disabilities) and mortality rate as high as 9%. Regardless of a caregiver’s underlying motivation, the child is harmed by the caregiver using the practitioner as the instrument of abuse.
| Other Names for Medical Child Abuse | First Used by | Characteristics |
|---|---|---|
| Munchausen syndrome by proxy | Meadow, 1977 | Identified Munchausen syndrome by proxy as a form of child abuse, focused on caregiver motive |
| Factitious disorder by proxy | American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) (1994) | Psychiatric disorder in caregivers who falsify illness in a child for their own needs, focused on caregiver motive |
| Pediatric condition falsification | American Professional Society on the Abuse of Children (2002) | A child abused in this manner is a victim of pediatric condition falsification; focused on caregiver action |
| Child abuse in a medical setting | American Academy of Pediatrics Committee on Child Abuse and Neglect (2007) | Focused on the harm caused to the child |
| MCA | Roesler & Jenny, 2009 | Focused on the harm caused to the child |
| Caregiver-fabricated illness in a child | American Academy of Pediatrics Committee on Child Abuse and Neglect (2013) | Focused on caregiver action |
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