Providing Easily-Accessible Card with Identifying Information for Bone Marrow Transplant Patients with Graft versus Host Disease

Louise Carroll, Shauna Collins, James Huang, Arnold Kim, Sedona ValentineProgram Design:

The need in the bone marrow transplant population was the lack of knowledge and understanding of developing Graft versus Host disease after transplant, as well as being able to identify the signs and symptoms of this disease. A survey was created to assess the patients’ knowledge and confidence concerning their newly acquired Graft versus Host disease. After surveying the patients, it was found that many patients felt confident of their understanding of Graft versus Host Disease. However, from a health provider standpoint, knowing the basics of this rapidly progressive and potentially fatal disease could be a life saving asset to every patient, caregiver, and future healthcare provider. A business size card was created for each patient, which included the following information about the patient: type of transplant, date of transplant, date complicated by Graft versus Host Disease, Type and Grade of Graft versus Host disease, and any allergies. This program was developed by input from Dr. Penza about the needs of this population of patients and surveying the patients in his clinic. The program was implemented by creating individualized business card for each patient. The business cards were implemented in the spring of 2013 in the clinic of Dr. Sam Penza.

We found that only 5/14 patients interviewed could accurately name both the type and the date of initial diagnosis and 5/14 patients could write down neither of the two when asked. With this new data, we redirected the course of our originally proposed intervention. The specific service to be developed for the patient population at Dr. Penza’s Bone Marrow Transplant clinic is a business card of quick information for patient utilization in health care settings to minimize confusion over the type of GVHD the patient is experiencing. The front of the card displays the specific type of GVHD the patient is experiencing and the date of the initial diagnosis. On the back of the card the patients can easily locate the number to Dr. Penza’s clinic so they can call if they have questions about signs or symptoms of GVHD. This card can be presented to Emergency Room physicians or personnel so that the patient can feel confident that they are giving the most accurate information about the GVHD type they have as well as direct physicians to Dr. Penza should they want to notify him or discuss with him the patient’s presentation.

The implementation of this program is largely reliant on student contact with patients in the clinic. Looking to the future we will provide the clinic with blank cards so that the nurses and Dr. Penza can continue the practice of providing the patient with one when they are diagnosed with GVHD. Since the patients already receive some literature when they visit the clinic following transplant, this card is only a small addition and should not disrupt clinic flow. The cards will be placed in the clinic with the other literature patients receive so that nurses can simply take one in addition to whichever pamphlets they find necessary to offer the patient.

The medical students worked with Dr. Penza to create the individualized business cards for each patient, and went over the cards with each patient. It was beneficial to go over the information on the card with the patient because it encouraged an open conversation between the patient and health care provider about the patient’s health, and allowed the patient to ask any questions that he or she may not have asked in the past. The patients welcomed the individualized business cards with the basic information about their health, and even went on to say that this could be helpful in times of emergency if the patient is unable to communicate with a healthcare provider about his or her health condition.

The challenging part about implementation was the time that it took to create the business cards for each individualized patient. In order to decrease the time in which Dr. Penza needed to spend helping us create the cards, the medical students learned how to find the information in the patients’ charts on their own. The implementation process allowed the medical students to become more familiar with the electronic medical records, become more knowledgeable about Graft versus Host disease, and gave the opportunity to work closely with patients concerning their health. The patients benefited from this program because it allowed them to review their health information, allowed for dialog between the physician and patient, and helped increase the overall knowledge and understanding of their individualized type of Graft versus Host disease.

Our group has developed the following methods to evaluate the effectiveness of the project. For formative evaluation, we tracked the number of the information cards given out to patients and adjusted the number of visits to Dr. Sam Penza’s clinic in order to ensure that the program benefits a sufficiently large patient population. We reached out to 17 previous/current GVHD patients by the end of August 2013. The number of cards given out per preceptor visit was recorded for the process evaluation. At the end of each visit, the number of surveys were collected (which corresponds to the number of cards handed out to the patients) was assessed and evaluated to streamline the distribution process for our program. For summative evaluation, the patient’s perceived level of knowledge about GVHD before/after receiving the card was measured using a short survey during each patient interview. Finally for outcome evaluation, each patient was asked, at the end of each session, if he/she was willing to keep the card in easily accessible place and if he/she would present the card to a healthcare provider should the need to do so arises (i.e. visit to emergency room).

Program Implementation

Program Evaluation

Our group developed the following methods to evaluate the effectiveness of the project. We tracked the number of the information cards given out to patients during each visit and adjusted the number of visits to Dr. Sam Penza’s clinic in order to ensure that the program benefits a sufficiently large patient population. At the end of each visit, the number of surveys collected (which corresponds to the number of cards handed out to the patients) was assessed and evaluated to streamline the distribution process for our program. In each patient encounter, patients were given a brief “quiz” in which they were ask to name the date of their bone marrow transplant, type of transplant received, type of GVHD symptoms they experienced, the date on which the symptom first presented itself, and allergies to gauge their level of knowledge about their GVHD without the information card. The patients then were presented with the information card, given some time to review it and asked to fill out a brief survey. The survey asked the patient’s perceived level of knowledge about their GVHD before/after receiving the card as well as their willingness to keep the card in an easily accessible place and to present the card to a healthcare provider should the need arise (i.e. visit to emergency room). 

By the end of August 2013, we were able to hand out the information card to 17 previous bone marrow transplant patients who have experienced some form of GVHD. The surveys completed by the patients at the end of the encounters were collected, and the results were analyzed using Microsoft Excel.

Table 1. Test score vs. perceived level of confidence

*Low score = 1-3 questions correctly answered regarding their transplant and GVHD Hx**High Test Score = 4-5 questions correctly answered

 

Figure 3. Comfort level after receiving card. Figure 4. Comfort level of having contact information handy 

All card recipients said that they would keep the information card, and all but one said that they would present the card to physicians.

Table 1 shows that the card recipients’ subjective level of confidence does not always correlate to their actual knowledge about their own transplant and GVHD history, further justifying the need for this program. Figure 3 and 4 clearly show that the patients feel more comfortable having the information card handy. The success of this project was further supported with all card recipients saying that they will keep the information card and all but one saying that they will present the card to physicians in case of emergency). 

The information card would ideally be incorporated into the routine for every patient seen by Dr. Penza after bone marrow transplant. We will identify which team member is best suited to take on the task of filling out cards for patients. We would then like to expand the project to other physicians caring for bone marrow transplant patients and other transplant services. A future direction for this project would be to incorporate the Emergency Department so physicians, nurses, and other healthcare providers were aware that OSU bone marrow transplant patients may have this card of valuable information and to ask about it.

While we believe this card will be of great value to patients and is, in fact, a need in this population, each component of information on the card was directed by the team’s work with Dr. Penza rather than based directly on answers to our original survey. To revise this we would have made our needs assessment test these specific information components directly. We would also better identify how the project would be implemented long-term and the team members needed for its continuation after we are no longer in the clinic weekly.

ReferencesFraser, C.J., Bhatia, S., Ness, K., Carter, A., Francisco, L., Arora, M., Parker, P., Forman, S.,Weisdorf, D., Gurney, J.G., & Baker, K.S. (2006). Impact of chronic graft-versus-host disease on the health status of hematopoietic cell transplantation survivors: a report from the Bone Marrow Transplant Survivor Study. Blood, 108, 2867-2873. Lee, S.J., & Flowers, M.E. (2008). Recognizing and managing chronic graft-versus-host disease. Hematology Am Society of Hematology Education Program, 134-41.

Future Directions

Often times, a bone marrow transplant is the last treatment option for patients diagnosed with cancers such as leukemia, lymphoma, and multiple myeloma. When a bone marrow transplant is given to a patient, this patient has replaced the cancer he or she had with another disease called Graft versus Host disease. Patients who receive a bone marrow transplant many times do not realize that they are trading in one disease for another. Graft versus host disease occurs when immune cells in the transplanted bone marrow are not recognized by the patient’s own immune cells, and the patient’s immune cells then begin to attack the transplanted bone marrow.

For bone marrow transplant patients, the status of their Graft-versus-host disease (GVHD) plays an important role in their overall health.  The sooner GVHD can be resolved, the better the long-term health outcomes of patients (Fraser et al. 2006).  Correctly and promptly diagnosing GVHD symptoms allows health care providers to act sooner to reduce the intensity of the patient's symptoms and prevents irreversible damage to organs (Lee & Flowers, 2008). Educating patients about the common signs and symptoms of this disease can also help strengthen the patient-physician relationship by allowing the patient to be more directly involved in his or her treatment.  

A survey was distributed to patients to assess their education about GVHD.  In this survey patients were asked about their demographics, their type of cancer and if they had received a bone transplant, whether they felt they had a good understanding of their disease and whether they would like more information about the disease.

Needs Assessment Results:

Figure 1: Patients’ sense of understanding Figure 2: Patients who would like more information

The original Needs Assessment data did not strongly indicate that patients felt they lacked knowledge of the signs and symptoms of GVHD. Dr. Penza still felt strongly about providing patients with a reliable system for communicating the details of their disease to health care providers (for example, in case patients presented to an emergency room or outside facility whose physicians may not be as familiar with recognizing GVHD). Thus, we readdressed the potential needs of our patient population. We implemented a practice of asking the clinic patients to write down their specific type of GVHD and date of initial diagnosis.

Purpose Statement: This project will provide patients who have undergone a bone marrow transplant a card that identifies the type and date of their transplant and the type and grade of GVHD.   This will ensure all patients can identify their disease and can convey this to other medical professionals.Goals:1. The card will ensure that all patients know their transplant history and their GVHD status.  This will help them communicate their condition to unaware medical personnel.2. The card will provide medical information that is easily transportable.3. The card will provide patients with the comfort of knowing they will have important medical information on their persons in case of a medical emergency.4. The card will also provide an easily accessible contact number if they have any questions about their symptoms.SMART Objectives:

The GVHD information card intervention will decrease the likelihood of miscommunication between the patient and health care providers about the type of GVHD the patient experiences when presenting to an emergency room, primary care provider, or outside facility by acting as a reference guide for patients and the physician. This objective will be measured by oral report back to the clinic following a health care visit to determine if the patient used the card and if the patient felt they were better able to present the physician with the most accurate information about his or her GVHD.

The GVHD information card intervention will accelerate patient access to answers to GVHD concerns by providing the correct and most direct phone line number.

Needs Assessment Summary

Program Development/Planning

Introduction

Confidence Level

Low High

Quiz Score

Low* 4 5

High** 1 7

High84%

Low16%

Yes24%

No76%