I am a parent of a child with Spina Bifida. We are in the military and move often. Do you know what type of technology is available that condenses all of my child's medical history so we do not have to pay for films and carry huge files?

Because Spina Bifida is such a complex medical condition affecting so many different parts of the body, there is a considerable amount of medical information that rapidly accumulates. Most individuals with Spina Bifida see multiple providers, have numerous radiographic procedures and surgeries, and use equipment for bracing and mobility. Thus, it is important for families to keep track of significant information whether they move frequently, vacation out of town, or simply try to communicate and coordinate services among multiple medical providers.

The type and amount of information to keep and carry with you can vary from the basics to vary detailed, comprehensive records. The format used can be paper, electronic hard storage (i.e. CD-ROM or Thumbdrive) or internet-based.

When traveling from one city to the next, either permanently or for vacation, the most basic information to take is:

1. The names, telephone numbers, and addresses of: 
   
   
   1. All medical providers
       
      1. Indicate their specialty (i.e. neurosurgery, urology, orthopedics, OT/PT)
          
         
   2. All hospitals where surgeries occurred
       
      1. New physicians can contact the medical record departments for reports
          
         
   3. All locations (hospital and private facilities) where radiographic studies were performed
       
   4. Orthotic, mobility, and DME (catheters, diapers) providers
       
2. A list of medication names, strengths, and dosing recommendations
    
3. A list of medication, latex, and other allergies and the reactions
    

While this basic list can facilitate transferring records to another provider, there are many inefficiencies that often result in incomplete information for the new medical team. Maintaining a personal health record can help during this transition of care.

Personal health records are now available in paper, digital, and virtual/internet formats. For those who prefer paper format, two popular choices are:

1. Health Guide for Parents of Children Living with Spina Bifida
Available from the SBA Marketplace, this guide has a sample personal health record which guides the user to document the important information. In addition, there is useful information for parents and for providers who may be less familiar with Spina Bifida.

2. The National Center for Medical Home Initiatives for Children with Special Health Care Needs has a section on their website for creating Care Notebooks. These notebooks are not Spina Bifida specific, but can be tailored to the family's needs. The website for these Care Notebooks is:

http://www.medicalhomeinfo.org/tools/care_notebook.html

For those who wish to use electronic format, the paper forms above can be scanned onto a CD-ROM or thumbdrive which decreases the bulk of the files. It is important to clearly label each scanned file for ease of retrieval. The file format should be one that is universally used, such as .pdf.

There are software programs, either free or for purchase, that create personal health records. Some have the ability to upload images. Most allow for multiple records so there is access for the whole family. None is specifically designed for Spina Bifida, so it may be useful to use the sample health record from the Health Guide for Parents of Children Living with Spina Bifida as a guide of what information to save.

Many institutions now have CD-ROM discs available for radiographic studies. The actual images in addition to the reports can be scanned onto the disc. This is ideal for the receiving surgical specialists to be able to visually compare future studies to the previous ones.

I strongly recommend all of my families to have a scanned disc of the last stable brain scan (CT or MRI) with them whenever they travel in case of the need to “rule out shunt malfunction.”

For the truly mobile, there are virtual personal health records that can be stored on the internet. Different companies offer additional services, such as medical alert bracelets which contain the identification number, a useful feature if there is an emergency when the primary caregiver is not present.

For more guidance about creating a personal health record and for a list of software programs and internet sites that offer free and for purchase personal health records, go the The American Health Information Management Association (www.myPHR.com) and select “ Tools and Resources ” followed by “ PHR Tools and Services ” or click on this link:

http://www.myphr.com/resources/phr_search.asp

For more information on the genetics and factors associated with Spina Bifida, please visit the Spina Bifida Association fact sheet.

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