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Journal of Pediatric Gastroenterology & Nutrition:
doi: 10.1097/MPG.0b013e3181e33b15
Invited Reviews

Munchausen Syndrome by Proxy: Ongoing Clinical Challenges

Squires, Janet E*; Squires, Robert H Jr

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Author Information

*Division of Child Advocacy, Department of Pediatrics, University of Pittsburgh, USA

Division of Gastroenterology, Hepatology, and Nutrition, Department of Pediatrics, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA, USA.

Received 15 January, 2010

Accepted 15 April, 2010

Address correspondence and reprint requests to Robert H. Squires Jr, MD, Children's Hospital of Pittsburgh of UPMC, 4401 Penn Ave, Faculty Pavilion, Floor 5, Pittsburgh, PA 15224 (e-mail: squiresr@upmc.edu).

The authors report no conflicts of interest.

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Abstract

In 1977, Roy Meadow, a pediatric nephrologist, first described a condition he subsequently coined Munchausen syndrome by proxy. The classic form involves a parent or other caregiver who inflicts injury or induces illness in a child, deceives the treating physician with fictitious or exaggerated information, and perpetrates the trickery for months or years. A related form of pathology is more insidious and more common but also damaging. It involves parents who fabricate or exaggerate symptoms of illness in children, causing overly aggressive medical evaluations and interventions. The common thread is that the treating physician plays a role in inflicting the abuse upon the child. Failure to recognize the problem is common because the condition is often not included in the differential diagnosis of challenging or confusing clinical problems. We believe that a heightened “self-awareness” of the physician's role in Munchausen syndrome by proxy will prevent or reduce the morbidity and mortality associated with this diagnosis. In addition, we believe contemporary developments within the modern health care system likely facilitate this condition.

Baron K.F.H. von Munchausen embellished his minor mercenary military adventures during 18th-century Turk-Russian clashes into intricate, self-aggrandizing tales of heroic adventure (1). Dr Richard Asher, a British psychiatrist, first invoked the term “Munchausen syndrome” in describing adults who presented histrionic and deceptive medical stories, which confounded many of his colleagues (2). In 1977, Roy Meadow, a British pediatric nephrologist, described 2 children with a fictitious illness: 1 with “hematuria” with mother's blood found in the urine and another who died of salt poisoning (3). Although the child was the subject of investigation, it was the adult who had the pathological need to be the caregiver of an ill child. In a clever adaptation of the term, Meadows invoked the term “Munchausen syndrome” and added the descriptor “by proxy” to emphasize the roles.

That a caregiver would intentionally inflict upon or fabricate an injury or illness about a child, deceive the treating physician with fictitious or exaggerated information, and perpetrate the trickery for months or years is inconceivable for those of us who care for children. Such disbelief complicates recognition and diagnosis of the condition, and the possibility of abuse or fabrication of symptoms is often not included in the differential diagnosis of challenging or confusing clinical problems. Since the original description, related pathological situations have been described. Parents or guardians may not actually inflict symptoms but may fabricate or exaggerate reports of symptoms, which result in excessive, unnecessary, or invasive medical interventions. These variations of abuse go beyond the original description of Munchausen syndrome by proxy (MSBP). Yet, a common thread is that physicians and the health care system actually participate in the abuse of the child, although with seemingly good intentions. We believe that a heightened “self-awareness” of the physician's role in MSBP will prevent or reduce the morbidity and mortality associated with this condition. In addition, we propose that contemporary developments within the modern health care system likely facilitate this pathology and, thus, the concept of MSBP should be reemphasized.

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DEFINITIONS

Our understanding of MSBP is evolving from its initial description in 1977. In fact, the term itself may soon become obsolete and serve only as a historical reminder of the “web of deceit” that the condition generates (1,4). Specifically, many child abuse experts recommend abandoning the term MSBP. In its place would be 2 categories of abuse: physical abuse, representing those children who were assaulted (eg, suffocation, poisoning) regardless of motive, and medical child abuse, describing acts that instigate excessive or harmful medical care. At present, MSBP continues to be a legitimate term in the medical literature, as well as in the child protection and legal systems. Current terminology relating to MSBP is important to review.

MSBP has been defined with following characteristics: an illness in a child that is factitious or induced by a caregiver, persistent interaction with the health care system often resulting in multiple medical procedures, denial of the caregiver as to the cause of the child's illness, and acute symptoms that abate when the child is separated from the caregiver (1). Many clinical presentations fit within this broad definition. During the years, specialists in child abuse and psychiatry have introduced a variety of terms to describe the pathology. Three specific terminology labels are currently used: factitious disorder by proxy (FDP), focusing on the characteristics and motivation of the caregiver who is instigating the process (5); pediatric condition falsification (PCF), focusing on the inaccurate medical history, which causes the child to become the victim (5,6); and medical child abuse (MCA), focusing on the harm inflicted upon a child by medical interventions and procedures that are invasive and essentially unnecessary (7).

FDP is a psychiatric diagnosis that is reserved for the perpetrating caregiver who falsifies or fabricates the child's signs and symptoms to meet his or her underlying, self-serving psychological need to have or be associated with a chronically or seriously ill child (5,6,8). Not all caregivers who exaggerate or fabricate symptoms have an underlying psychiatric disorder; there may be other motivations.

PCF is a form of child abuse in which an adult exaggerates, fabricates, or falsifies a child's clinical signs or symptoms to a degree that clinical illness is perceived by the treating physician (6). The child is subsequently subjected to invasive diagnostic tests or even surgical procedures in a futile search for the underlying cause of those symptoms. It is important to recognize that a diagnosis of PCF does not preclude a valid illness in the child, thus making the diagnosis particularly challenging.

MCA is a recent and evolving concept put forward by Roesler and Jenny (7). They propose this definition: medical child abuse occurs when a child receives unnecessary and harmful or potentially harmful medical care at the instigation of a caregiver. They stress that direct injury to a child by a parent to cause illness regardless of the clandestine nature of the presentation (eg, suffocation, poisoning) should be recognized and properly labeled as physical assault on a child. However, when symptoms are fabricated or grossly exaggerated and the harm to the child is a result of excessive medical care at the hands of well-intentioned but injudicious physicians, the proper terminology should be medical child abuse. This concept acknowledges the role of health care providers in the abuse of the child, as uncomfortable as that may be.

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EPIDEMIOLOGY

The incidence of MSBP is unknown but is widely believed to be underreported (9,10). MSBP occurs equally between boys and girls with an average age at diagnosis of 48.6 months (range <1–204 months) and an interval between the onset of symptoms and diagnosis of 21.8 months (range 0–195 months) (4). Although younger children are most commonly affected, it can occur in older children as well (11). Morbidity and mortality are due to either the direct actions of the caregiver or the invasive medical interventions, which occur in response to the caregiver's reports of symptoms. Mortality from MSBP is reported to range from 6% to 10%, but could be as high as 33% if either suffocation or poisoning is the mechanism of injury (12). Death of a known sibling was reported in 25% of index MSBP cases (4). Long-term psychological disorders are common and recidivism is high, particularly in the setting of FDP (13–15).

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GASTROINTESTINAL PRESENTATIONS

A recent review by de Ridder and Hoekstra (16) listed many of the pediatric gastroenterologic manifestation of MSBP. They include chronic diarrhea, failure to thrive, vomiting, hematemesis, hematochezia, cystic fibrosis, celiac disease (17), and a variety of central-line complications. The range of clinical presentations can be as wide as the imagination and creativity of the perpetrator. The problem of false or significantly exaggerated symptoms as associated with PCF is particularly problematic for the gastroenterologist; for example, cases of intestinal pseudoobstruction later recognized as MSBP are well described. In 1 retrospective analysis, MSBP was assessed to be the cause of intestinal pseudoobstruction in 8 of 39 (20.5%) patients (18,19). Intestinal transplantation for intestinal pseudoobstruction has occurred in patients found to have MSBP (20). Therefore, when a child has symptoms that are serious, chronic or recurrent, poorly explained, and not responsive to typical therapies, the gastroenterologist must have a heightened awareness of the possibility that an adult could be inducing, fabricating, or exaggerating the symptoms.

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THE PATIENT-PERPETRATOR-PHYSICIAN TRIAD

The people typically involved in this unique form of child abuse are the child, the caregiver, and the physician. The role of the child as victim and the role of the caregiver as perpetrator have received much of the attention of published reports and characterizations. Little is known of the factors that influence and foster the participation of physicians in this triangular relationship. Physicians inherently show a drive to find an answer to a seemingly complex problem and meet the perceived needs of the child and family. Once MSBP is recognized, the physician, understandably, takes the defensive role of being “duped” or “misled.” Although this may be the case, the fact remains that the child has been harmed.

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Patient

The patient is the child who is also the victim. In the absence of an induced or fabricated disease, it is not uncommon for the child victim to have an underlying condition such as gastroesophageal reflux, chronic diarrhea, or vomiting. The child may have been premature, survived an acute or life-threatening illness, or have other manifestations of the “vulnerable child” (21). An incomplete or unsatisfactory response of the presenting symptoms to management or reassurance engages a peculiar folie à deux between the physician and caregiver that results in extensive, often painful or dangerous laboratory, diagnostic, or surgical procedures (22). The combined actions of the caregiver and medical personnel account for 75% of the inflicted injuries, whereas medical personnel alone cause 25% (1). Long-term permanent disfigurement or impairment of function occurs in at least 8% of victims. Adverse, long-term psychological morbidities include immaturity, separation anxiety, and aggressiveness. As victims become older, they can adopt the mythic symptoms as genuine even after the discovery of the abuse (1,14,22).

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Perpetrator

The perpetrator is a caregiver to the child. Classically but not exclusively, the perpetrator is a friendly, attentive, observant, involved biological mother, often described as the “perfect mother.” In a recent review of 451 victims of MSBP, the majority of perpetrators were biological mothers (76.5%) or fathers (6.7%) (4). Grandparents and unrelated child-care providers are included in the list of potential perpetrators (5). The female perpetrator has some ties to the medical profession in between 14% and 30% of cases (1,4). She is comfortable in the hospital, friendly with staff, emotionally strong and calm despite medical setbacks, and receives admiration from medical personnel and other parents. Another variant is the woman who is demanding, aggressive, intimidating, and threatening. She is one who threatens to leave the system if requested services are not received. Not infrequently, the friendly, supportive woman can transition into a more hostile individual if medical personnel are seen as unresponsive or challenging to her concerns. When the mother is the perpetrator, the father is often found to be emotionally absent and passive to the mother in the medical decision-making process. When fathers were the perpetrators, they tended to be more demanding, overbearing, and antagonistic (9,23).

Not all perpetrators have the psychiatric features associated with FDP, and external incentives for their behavior can be present (5). It may be that the adult caregiver gets some reenforcement for being in the role of the parent of the sick child that is not driven by a deep psychological need. There may be overlap with other rewards, such as extra attention from family or friends, sympathy, excuses from the pressure of housework or unsatisfying employment, care by other family members, and the camaraderie of the hospital milieu including staff and parents of other hospitalized children.

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Physician

The typical profile is a subspecialist physician eager to identify the cause of and a treatment plan for the child's complex, persistent, or confusing symptoms. There may be a passion to explore rare and unusual diagnoses and a general tendency to use a large array of tests and procedures (24). The physician may have a unique or special relationship with the mother, who considers this physician as heroic and the only one capable of addressing the child's medical needs (25). If challenged by other staff who question overtreatment, the physician may display defensiveness about competency, judgment, and authority. Some writings describe the physician as a victim of falsehoods of the mother, and thus portray the physician as a perpetrator of abuse to the child unwittingly while being a victim at the same time (1,24,26). Although characterization of the child and the caregiver has received increasing attention, little is known whether a physician phenotype exists that fosters susceptibility to participation in this form of child abuse.

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RECOGNITION

As with many complex conditions, an alignment of circumstances is required for the condition to be fully manifested. The classic presentation of MSBP results from a perfect alignment of a mother with FDP, a vulnerable child, and an unwitting aggressive physician whose failure to recognize the underlying pathology perpetrates the condition. In the absence of these archetypal participants, a varied spectrum of the classic condition is displayed. The child becomes the victim after he or she is perceived as medically abnormal due to symptoms in 1 of 3 categories: symptoms literally induced by the perpetrator, symptoms fabricated by the perpetrator, and symptoms that are neither induced nor fabricated but are exaggerated in the context of a caregiver who is “unreassurable.”

Acts committed upon the child by a perpetrator, such as poisoning (eg, salt, phosphorous, ipecac, insulin, laxatives, sedatives, antidepressants) (27) or suffocation (28), should always be considered in the differential diagnosis of perplexing or life-threatening conditions. If it is not considered, it will never be diagnosed and the consequences of not making that diagnosis can result in the death of the child. If poisoning or suffocation become a priority of concern in the process of evaluation, confirmatory toxicology or appropriately arranged surveillance studies can be initiated to assist in the diagnosis (27,29).

Fabrication or falsification of symptoms requires a different level of diagnostic curiosity on the part of the physician. Physicians are not trained to doubt the family's history. Yet, a healthy skepticism about the medical history is important when the details of the story do not fit the patient. For example, multiple diapers filled with “blood” should be associated with some degree of tachycardia or fall in the hematocrit. If those objective findings are absent, then surreptitious placement of red dye or animal blood (eg, a chicken's red blood cells are nucleated) should at least be discussed. However, if the child's blood is surreptitiously extracted from an intravenous catheter and placed in the child's stool or gastrostomy tube, the degree of difficulty required to make the diagnosis is increased considerably. The clinician must be alert to situations when a reasonable diagnostic evaluation does not produce the expected findings associated with the clinical presentation. When that point is reached, a pause in the diagnostic pursuits coupled with a reexamination of the known facts, signs, symptoms, and history should be undertaken.

Finally, exaggerated symptoms reported by an unreassurable caregiver create great challenges for the clinician. Exaggeration of symptoms is in the eye of the beholder and is not by itself an unreasonable method for parents to use when they are concerned for the welfare of their child (30). It is well known that MSBP can occur in a child with a legitimate medical condition and may even coexist with organic disease. Thus, repeated and persistent exaggeration of symptoms should be met with a focused investigation of those symptoms, with an anticipated course leading to a denouement. Many pediatric conditions can be identified as functional or inconsequential, and a reasonable treatment plan should lead to reassurance and acceptance. Independent or personal confirmation of symptoms may be needed. A cautionary flag should be raised, however, when reassurance is unattainable and is followed by an ever-accelerating trajectory of interventions that are not clearly clinically indicated (Fig. 1) (30).

Figure 1
Figure 1
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The intricacies of early recognition of MSBP, especially involving the PCF subgroup, do not come naturally to the health care provider. Physicians are internally driven and externally expected to find the answer for the most challenging patients, and they depend upon the history provided to direct diagnostic studies and treatment strategies. This drive, associated with an ever-expanding diagnostic palate (eg, mitochondrial mutations, genetic polymorphisms, special histological staining), creates an environment in which a specific “diagnosis” can be achieved but its clinical relevance is uncertain. When one is pursuing symptoms in an attempt to satisfy what appears to be the insatiable anxiety of the caregiver, it is important to recall that the diagnosis of child abuse is related to the harm or potential harm to the child, rather than the intent of the perpetrators. Medical child abuse occurs when a child receives unnecessary and harmful or potentially harmful medical care at the instigation of a caregiver (7). In many cases, although the caregiver may be the “instigator,” it is the physician who perpetrates the harm by simultaneously reinforcing the cycle of a caregiver's focus on ever-increasing medical interventions and providing an ever-increasing list of potential investigative and intervention options.

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THE FACILITATING MEDICAL ENVIRONMENT

We argue in this section that a number of forces are evolving in the health care delivery system that may, to varying degrees, facilitate unintentional injury to the child by members of the healing professions. The potential role of the modern medical environment in influencing the recognition of MSBP and PCF, and facilitating medical child abuse, is a relatively new and not widely recognized concept. Little is written on these factors, but relevant literature will be cited when possible.

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Electronic Medical Record

Although counterintuitive, the electronic medical record at present may not facilitate a complete viewing of the medical history. Much of this problem is likely time limited, and will be improving as electronic medical record keeping progresses. There are a number of issues. First, multiple information systems may not interface well, so records from outside clinics, hospitals, or other providers are often reviewed in summarized notes and not direct reading of the records. Second, electronic records can be massive, especially when it involves a chronically ill child. Sorting and scanning notes can be challenging on the computer screen, and notes are cluttered with unhelpful information that was inserted for documentation and billing purposes. Third, notes are easily subjected to copy-and-paste behaviors that may be carried forward without easy reference to the original author or observer. Fourth, health care systems are encouraging the use of templates for the components of the history and physical examination with relatively little attention or opportunity to document nuanced assessments of personal interactions.

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Barriers for Accessing Past Medical Information

Increasing concerns about the security and privacy of patient health records is affecting medical information access for physicians. The federal Health Insurance Portability and Accountability Act of 1996 established new standards and rules that give individuals added control over how protected health information is used and disclosed, and written consent is usually necessary for information sharing between health care systems. Multiple sections of the Health Insurance Portability and Accountability Act law address the disclosure of information around child abuse and neglect issues. Information disclosure is generally permitted to an appropriate government authority authorized by law to investigate and respond to concerns of child abuse or neglect (31). However, unless there is a legal report of possible child maltreatment and an ongoing Child Protection System investigation, complete access to past medical information on a child may not be possible for physicians without cooperation from a parent. Another related consequence is the skewing of published case reports of abused children in the medical literature. Unless there is an absolute guarantee that all details of a clinical case report can be de-identified, there are strong institutional barriers to publication of clinical experiences of MSBP or other forms of abuse without patient/family consent. For cases of child abuse, it is likely there will be more reports of conditions mistaken for abuse than of new reports of novel child abuse descriptions.

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Increased Reliance Upon Tests to Support a Diagnosis

There is no test that will make the diagnosis of PCF/MSBP. In fact, it is the incessant testing that can be the problem. It is well documented that biochemical test results can be misleading (32) and that the more tests that are performed, the more likely it is that a misleading test result will result in injudicious and dangerous interventions (33). Studies have identified risks associated with inappropriate cardiac imaging (34), variability in interpretation of abdominal radiographs (35), and unnecessary surgery (36,37); thus, testing and procedures should be approached with knowledge of their respective risks to the patient. This increased reliance upon tests is coupled with a growing anxiety that the skills required to perform an expert history and physical examination are waning (38,39) despite evidence of their importance (40).

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Drive for Patient Satisfaction

Patient satisfaction is always a worthy goal and it is currently an important outcome measure for hospital and physician care; however, it can come at the expense of the child if it is unbridled. With objective standards for assessing the quality of health care lacking in many areas, the “grade” given by a consumer often serves as a substituted standard for quality measurement. An unsatisfied parent will often demand a second, third, or fourth opinion, another test or diagnostic study, or even surgery to “find” the problem. The skills and experience of the physician must come to bear on those circumstances to make a reasoned, medically sound, and, if possible, evidence-based judgment as to whether to proceed with potentially painful or harmful tests or to address parental concerns in another fashion. There are pressures to proceed with testing that include the following: parents are at least temporarily satisfied, the hospital administration and the support staff are satisfied when the parents are satisfied, physicians are insecure about the decision to proceed with testing, physicians are anxious about “missing something” or “being wrong,” which could be grounds for future litigation, physicians have the naïve concept that “you are never wrong if you do something”, and financial incentives that favor testing and further consultation over thoughtful communication. Such are the dilemmas of clinical care.

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The Internet

Parents have an inexhaustible resource for medical knowledge. No longer is it necessary for the perpetrator to be in the health care field to have full access to health care information. Families will often present to the specialist having performed their own research and have decided upon the child's diagnosis, an outline of the expected diagnostic tests, and the management strategy that will follow. This presents another layer of challenges to the diagnostician who must establish his or her role in the child's care, negotiate with the family as to the relative merits of their diagnosis versus other possibilities, and decide upon the appropriateness of the diagnostic evaluation. The Internet can also serve as a mechanism to punish physicians with whom or hospitals with which families are not satisfied. Families can retaliate with vicious blogs demonizing the efforts of competent physicians whose focus was on the child's well being. Sensationalizing the exceptions rather than the rules through the Internet or 24-hour news shows is potentially damaging to all parties and often results in further isolation of the child from appropriate medical care. Adult perpetrators of MSBP are often articulate and can project public images of caring and concern, which generates public sympathy. Denial of all forms of child abuse remains common and the concept that excessive medical care has the potential to harm rather than benefit is rarely discussed.

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Increased Availability and Exposure to Specialists

Important clinical and social factors may not be easily captured by the specialists in the hospital setting. Hospitalists have replaced the primary care physician in many institutions, which disrupts the important continuity of care between the outpatient and inpatient setting. Continuity within the hospital is also challenged by shortened service obligations by the specialists, making it difficult to “connect the dots” when expected outcomes are not achieved. Communication with the primary care physician, particularly as it relates to the child's social environment, is not easily engaged. Even within the hospital setting, communication between specialists and nurses has become less verbal, more electronic, and crafted in a Twitter style or documented by checking boxes. In addition, “doctor shopping” can be easily pursued by families, yet missed by treating physicians (41).

Finally, reconciliation by the treating physician that MSBP is the root cause for the child's symptoms is not easy. Following months or years of aggressive investigation and treatments from a specialist physician, insights from another physician that suggest the treating physician was duped by false or exaggerated information are often rejected or denounced by the child's health care team. Thus, it is not surprising that a physician's efforts to protect a child by daring to allege that a caregiver contributed to circumstances resulting in medical care that harmed the child can be met with misunderstanding, misinterpretation, and mistrust.

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MANAGEMENT

Management strategies directly related to engaging the child protection and legal systems are beyond the scope of this presentation and are outlined in other sources (1,9,22,26,30,42–44). We believe that physicians can recognize caregiver-induced illness cases of MSBP if they maintain a reasonable awareness of the condition. Some cases of PCF/MCA may even be preventable. When a child's disease is chronic, recurring, confusing, incomprehensible, and unresponsive to typical treatments, MSBP should receive consideration. Appropriate tests and surveillance modalities are needed. Information about symptoms should be sought from other sources besides the parents. These sources include reports from other family members, day care or school staff, or previous medical caregivers. The focus should be on objective observations, unfiltered by the perception of the parent or guardian. The caregiver who cannot be reassured by normal tests or examinations may become insistent for more testing. However, the physician must assess the risks of those procedures and ask, “Am I doing this because the family wants this, or because I feel the child needs this procedure?” If physicians can interrupt the cycle of reacting indiscriminately to a report of medical symptoms with procedures or tests for “completeness” and substitute additional objective observations and clinical judgment, then perhaps we can alter the environment that is conducive to medical child abuse. Preventive efforts may be most effective for parents with chronically ill children early in the clinical course, in which thoughtful physicians direct a comprehensive care plan reassuring the parents of beneficial services while cognizant of the potential harm of all medical interventions.

If a hospital-based Child Protection Team is available, then a referral to these specialists can be helpful. A review of the medical record by an experienced child maltreatment physician can provide an independent and objective assessment of the medical history and treatment plan. Of note, the field of child abuse pediatrics became the fourteenth approved subspecialty of the Board of Pediatrics in 2009, recognizing the expertise needed for this complex field.

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CONCLUSIONS

Cases of MSBP are serious forms of child abuse associated with high morbidity and mortality. Current reports underrepresent the extent of the problem. There are myriad presentations of MSBP, some with induced illness or injury, but probably more children are harmed by diagnostic tests and surgical procedures that occur in response to fabricated or overly exaggerated symptoms. Unlike other forms of child abuse, the physician and the health care system can serve as an agent of the abuse. Many authors have begun to shine some light upon the health care system in general and physicians in particular regarding their critical role in these disorders (7,24,44,45). Recognizing and accepting that the health care system, including the actions of physicians, are integral to the harm to the child in MSBP is an important step toward early recognition and prevention in at least some cases.

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Back to Top | Article Outline
Keywords:

child abuse; disease falsification; medical child abuse; Munchausen syndrome by proxy; pediatric condition falsification

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