Proxy Project

Applied to PCORI $1.5 mil/3 yrs Current Project / Health Policy / Informatics 2012

We now have over 100 posts helping readers understand the scientific literature and the personal experience surrounding Munchausen Syndrome by Proxy (MSbP).

The Proxy Project recently completed a book chapter on patient-centered approaches to dealing with MSbP in the healthcare system.

Objective
  • To end child abuse through research.
  • To develop an evidence-based, public health response to prevent and stop Munchausen Syndrome by Proxy (MSbP) abuse.
Impact
  • MSbP has not been studied adequately.  Some call it “medical abuse”, where a caregiver tries to get unnecessary treatments for a child by lying about the child’s symptoms.
  • Unfortunately, MSbP goes beyond “medical abuse” of children.  It can happen with adults who have a caregiver, and it also can involve sexual abuse and physical abuse by the caregiver.  However, these aspects of MSbP have never been studied.
  • The death rate of pediatric MSbP victims has been estimated to be between 10% to 30%.  Most of the time, when a pediatric MSbP victim is identified, this child has one or more dead siblings.
  • Currently, most medical establishments do not have policies to identify MSbP perpetrators and victims.  Yet, most victims die at the hand of clinicians, not perpetrators, as a result of unnecessary medical treatments given to them.
  • It is not acknowledged in the medical literature that many victims live to be adults (obviously, the 70-90% who do not die).  These adults may have severe complications from the childhood abuse, but to date, there has only be one study of adult survivors of childhood MSbP.
Surgical instruments.
Company Role
 

Blog
  • DPS has led the development of the new Proxy Project Blog.
  • This blog provides a public presence for the Proxy Project, and provides a basis for building an online community.
Crowdfunding
  • DPS is leading the development of a MedStartr campaign.
  • The MedStartr campaign will seek funding for the Proxy Project efforts, such as the blog, discussion board, scientific writing, and grantwriting activities.
Peer-reviewed Science
  • The Proxy Project has the goal of developing and publishing several peer-reviewed works.
  • Topics planned include a patient-centered literature review, and an examination of whether perpetrators have anti-social personality disorder.
PCORI Grant Application
  • Monika Wahi, President of DethWench Professional Services, serves as Principal Investigator (PI) of this grant application, which was unsuccessfully submitted to PCORI in January 2014.
  • The research team includes adult MSbP survivors as well as experts in various disciplines.
Online Registry
  • The grant application seeks to fund the development of an online self-report registry of adult MSbP survivors.
  • Data will be analyzed to help survivors choose the best treatments for their co-morbidities.
Discussion Board
  • It also seeks to fund a highly private patient discussion board associated with the registry.
  • This is because many adult survivors are too afraid to use conventional patient boards because they are afraid their perpetrator will find them – even if their perpetrator is dead…
Related Publications
Munchausen by proxy victims in adulthood:  A first look:  This 1995 paper remains the only published study of adult survivors of MSbP.  Ten adult survivors were interviewed and tested, and the author reported “problems in adulthood including insecurity, reality-testing issues, avoidance of medical treatment, and posttraumatic stress symptoms.”
The role of nonperpetrating fathers in Munchausen Syndrome by Proxy:  A review of the literature:  This 2013 review article does not offer new data, but reviews the hundreds of case studies reported in the literature of children rescued (or not rescued) from MSbP perpetrators, who are overwhelmingly their mothers.
The last frontier:  Myths and the female psychopathic killer:  This 2010 article in the Forensic Examiner summarizes the evidence of psychopathy seen in the behavior of female serial killers.  The authors specifically describe the psychopathic behavior and reasoning reported by convicted MSbP mothers who were shown to have killed at least one child.
Munchausen Syndrome by Proxy:  An adult dyad:  This 2012 article describes two case reports in which the MSbP mother kills her child after the child has become an adult (ages 21 and 23).  Intervention by hospital personnel who identified the behavior in both cases did not result in protection of the victims.
Photos by B. N. Wahi and Saltanat ebli.  Page last updated January 8, 2017.