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Authors

  1. Rab, Bonnie D. ADN, RN, CPN

Article Content

IN ONE PEDIATRIC NEUROLOGY outpatient clinic connected to a large teaching hospital in the southeastern United States, about 6,500 patients from across the state of South Carolina are treated annually for epilepsy and other neurologic disorders. (See Epilepsy statistics.)

 

The information provided to parents in the clinic about how to take care of a child during a seizure was found to be inconsistent, couldn't be located easily in an emergency, and led to unnecessary ED visits. This article describes how an innovative tool was developed to educate and empower parents.

 

Initial steps

First, to standardize the information provided to parents, a seizure first-aid instruction sheet from the Epilepsy Foundation website was customized for this clinic, and clinic and after-hours emergency phone numbers were added.1

 

The nursing staff understood that families have to adjust to a new lifestyle when a child is diagnosed with a potentially chronic illness. Parents have a lot to learn about both the disorder and the care their child needs.2 Breaking down complex information into simple task-oriented instructions seems to help parents the most. Parents need to know how to act and feel confident that their actions are helping the child.2

 

The seizure first-aid handout provided basic facts about what to do when a seizure occurs. All parents were given this handout at every office visit. Staff discussed seizure first aid with the parents as well as the use of prescribed emergency medications, such as diazepam rectal gel (for children ages 2 years and over) and intranasal midazolam (for adolescent patients).3,4

 

Unfortunately, over time a pattern emerged: Parents weren't using the information provided by the clinic. A common thread heard repeatedly from parents was that they couldn't find this handout during a seizure. One parent said, "Watching my child have a seizure was so scary. I forgot everything you told me, and I couldn't find the handout you'd given me." Similar responses were given by many parents whose children were seen in the clinic for follow-up after being treated in the ED for seizure activity.

 

It also became apparent that many outpatient clinic visits were follow-ups for unnecessary ED visits. The hospital's analytics department has defined an unnecessary ED visit as a visit made to the ED for a seizure because the prescribed rescue medication hadn't been used. Clearly the practice of providing handouts wasn't having the desired impact.

 

One possible solution to these problems was including seizure first-aid instructions in the hospital's new electronic medical record (EMR). Working closely with the information technology department, we added the seizure first-aid instructions on the patients' after-visit summary (AVS), which is given to parents at the conclusion of the clinic visit. This seizure first-aid information was extensive, covering about three-fourths of a page in the AVS. It seemed reasonable to assume that including the seizure first-aid handout on the printed AVS would resolve the issues. However, this option failed to help patients because parents lost or misplaced this information as well.

 

Looking for answers

A corrective measure was needed to provide information that was quickly accessible and easy to understand and use during an emergency. After brainstorming some alternatives, the solution presented itself in the author's own kitchen. As in most homes, the refrigerator had several magnets for important phone numbers, including those of healthcare providers and dentists.

 

The kitchen is a central location that anyone can find in an emergency. Although no evidence-based literature recommends a home refrigerator as an ideal place to store emergency information, several organizations endorse this idea. In one article, the Mayo Clinic mentioned using a refrigerator to keep emergency health information within easy reach.5 Also, a project called The Vial of Life supplies emergency information kits.6 These kits contain a card for a patient's medical history and medication list; a plastic bag with a white cross on a red background, which holds the card and is taped to the refrigerator; and a matching decal to place on the front door to alert EMS that medical information is located on the refrigerator door.6

 

The refrigerator is a stationary object in a central location where a magnet could display seizure first-aid information. The information needs to be simple, to the point, and easy to understand and implement in an emergency. Easy-to-understand information is especially important because a friend, babysitter, or a younger sibling could be the person using the information in an emergency.

 

Magnetic appeal

Using the seizure first-aid guidelines provided by the Epilepsy Foundation, the author designed a 5.5 x 4.5-in (about 14 cm x 11.5 cm) magnet with pictures and instructions telling caregivers what to do when a child has a seizure. The magnet also includes when to call 911, along with the daytime phone number for the clinic and the clinic's after-hours emergency phone number.

 

After designing the magnet and gaining approval from the clinic leadership, the author applied for and received a grant to produce 1,000 magnets. The author's organization provides several grant opportunities throughout the year for employees who write proposals for items for their unit. The grant process included writing the proposal, explaining the need for the item, the cost of the item, and the proposed timeline if the grant were to be approved.

 

Implementing the project

Once the magnets were received, nurses and unlicensed assistive personnel were educated about the magnets' purpose, which patients should receive them, and how to document this in the medical record for tracking purposes. All 1,000 magnets were distributed within 11 months.

 

After distributing all magnets purchased with the first grant, additional funding was needed to obtain more magnets. Because of an increase in referrals of Hispanic patients, the magnet was also translated into Spanish. Working with the organization's interpreter services department, the magnet content was translated into Spanish at the same sixth grade reading level as the English version. After receiving a second grant, an additional 1,000 seizure first-aid magnets in English and 200 in Spanish were purchased.

 

Evaluating the results

The hospital's analytics department needed to determine the impact of the magnet on unnecessary ED visits. Medical record numbers of patients who'd received the magnet were given to the organization's data analyst. The analyst queried the electronic data warehouse for pediatric patients with an ICD9 diagnosis code of epilepsy and/or recurrent seizure disorder, 1 year prior to magnet distribution and 1 year postdistribution. Of the 343 patients identified with a primary diagnosis of epilepsy and/or recurrent seizure disorder, 96 patients were seen in the ED a total of 131 times during the year before the magnets' implementation. In the year following implementation, 48 patients were seen 66 times in the ED. The data showed a statistically significant reduction (P < 0.05) in average ED visits per patient, total number of ED visits, and the number of nonadmission visits postimplementation. Total ED visits were reduced by 50%. ED visits that led to an admission demonstrated the appropriate use of the ED. Nonadmission ED visits (which more than likely represented unnecessary ED use) decreased by 58%. (See Mean ED visits per patient pre- and postimplementation.)

 

Looking to the future

Education and empowerment of parents is crucial when caring for pediatric patients.7 Patients and families are empowered when they have a sense of control over their lives.8 Patient education is a key intervention for promoting family health and empowerment for parents with a child diagnosed with a chronic disorder.

 

Diminishing information overload was the primary focus of this project. This simple idea of using a refrigerator magnet to provide important emergency healthcare information has been successful in this outpatient clinic and has reduced unnecessary ED visits substantially. However, there are some limitations to the use of a refrigerator magnet because the seizure event has to occur in the home for the magnet to be useful. To take advantage of the advancement in smart phone technology, the Epilepsy Foundation has a helpful mobile app for seizure first aid that includes a timer along with brief first-aid instructions. This mobile app also has limitations: For example, not all people have smart phones and only immediate family members are likely to have the app downloaded, not necessarily friends, relatives, or babysitters.

 

The idea of an informational magnet can be adapted for use with other diagnoses and patient populations.

 

Epilepsy statistics

In the United States, epilepsy is the fourth most common neurologic problem after migraine, stroke, and Alzheimer disease. An estimated 3 million people have been diagnosed with epilepsy in the United States and 65 million people have been diagnosed around the world.9 About 150,000 new cases of epilepsy are diagnosed in the United States every year, and the cost of treatment is about $15.5 billion per year.10,11

 

REFERENCES

 

1. Epilepsy Foundation. http://www.epilepsy.com. [Context Link]

 

2. Kelo M, Martikainen M, Eriksson E. Patient education of children and their families: nurses' experiences. Pediatr Nurs. 2013;39(2):71-79. [Context Link]

 

3. Diastat C-IV (diazepam rectal gel) Rectal Delivery System [prescribing information.] Valeant Pharmaceuticals, Bridgewater, NJ; 2016. http://www.diastat.com. [Context Link]

 

4. Therapeutic intranasal drug delivery: needleless treatment options for medical problems. http://www.intranasal.net/seizure%20%20therapy%20at%20home%20directions/default.. [Context Link]

 

5. Mayo Clinic Staff. Emergency health information: keep your personal and family records within reach. Mayo Clinic. 2015. http://www.mayoclinic.org/first-aid/emergency-health-information/basics/art-2013. [Context Link]

 

6. Vial of Life Project. 2015. http://www.vialoflife.com/how_to_use_the_vial_of_life. [Context Link]

 

7. Panicker L. Nurses' perceptions of parent empowerment in chronic illness. Contemp Nurse. 2013;45(2):210-219. [Context Link]

 

8. Funnell MM, Anderson RM. Patient empowerment: a look back, a look ahead. Diabetes Educ. 2003;29(3):454-458, 460, 462. [Context Link]

 

9. Shafer PO, Sirven JI. Epilepsy statistics. 2013. http://www.epilepsy.com/learn/epilepsy-statistics. [Context Link]

 

10. Holland K. Epilepsy by the numbers: facts, statistics, and you. Healthline.com. 2014. http://www.healthline.com/health/epilepsy/facts-statistics-infographic#1. [Context Link]

 

11. Shafer PO. About epilepsy: the basics. Epilepsy.com. 2014. http://www.epilepsy.com/learn/about-epilepsy-basics. [Context Link]