Educating children with leukemia and their families about the disease is difficult, given the amount of information and the trying circumstances. Pharmacists are part of the team involved in education, along with physicians and nurses specializing in pediatric oncology.
Kidz with Leukemia: A Space Adventure is a successful attempt to support patient education. It combines games, videos, and text to teach the CD-ROM user about acute leukemia and the tests and treatments.
The CD-ROM uses cartoon-character “space buddies” to guide the viewer through its various sections: the Space Mall, The Get Better Place, Help Yourself, The Movies, Testing Center, and Fill-N-Fly. Accurate medical information is presented in a way that is educational but also fun. A user can choose to enter the program as a four- to six-year old, a child seven and up, or an adult. The games containing medical information are set up so that the viewer can choose from two or three levels of difficulty. The technology used for this CD-ROM requires downloading a free software (QuickTime), but clear instructions are provided. Minimal and recommended computer requirements are listed on the Web site and the CD-ROM.
The CD-ROM provides information covering a wide variety of topics for patients with acute myelogenous leukemia and acute lymphoblastic or lymphocytic leukemia and family members. Introductory topics include what leukemia is, what a research study is, definitions of medical terms, basic descriptions of major organs and their functions, a medical database, frequently asked questions for parents, and links to Internet sites for medical information, financial assistance, wish-fulfillment organizations, and the Candlelighters CHildhood Cancer Foundation. The medication database includes chemotherapy drugs as well as antimicrobials and ancillary drugs. It recommends that patients check with their doctor or pharmacist before taking new medications.
The CD-ROM includes a brief video tour of a typical hospital, including the pharmacy. It has a section with videotapes showing physicians, nurses, social workers, and occupational therapists at work and explaining who these health professionals are and what their role in a leukemia patient's care is. In a separate section, “I'm the Pharmacist,” a “space buddy” pharmacist explains antineoplastics, sedatives and local anesthetics for procedures, and routes of administration. Psychological issues are also addressed. Patients can click and drag objects to decorate their virtual hospital rooms, hear how other patients often feel, and color pictures. Two leukemia survivors describe what they have been through in one video. Another section is dedicated to siblings and discusses the concerns and feelings siblings have as their family members go through treatment.
The laboratory section includes videos that show various procedures (magnetic resonance imaging, computed tomography, etc) and methods for blood drawing. Another section discusses red blood cell and platelet tansfusions. Eating while undergoing chemotherapy, washing hands properly, and mouth care are also covered.
Kidz with Leukemia: A Space Adventure is educational for the whole family. It is geared to a wide range of ages. The information provided is accurate, and technology is used cleverly to make learning more fun and more complete. This CD-ROM is not a substitute for face-to-face education by health professionals, but it is an excellent aid. There are some weaknesses, though. The specifics of drug regimens are left out. A few drugs that might be covered, such as meropenem, are missing. The most obvious deficiency is a lack of information on monitoring for fevers and other adverse effects that may merit contacting a health professional. There is also no discussion of late effects: secondary leukemias or long-term toxicities of drugs. Division of the material into sections makes it easier to go back and review specific topics later. Overall, this CD-ROM provides a comprehensive, if basic, view of acute leukemia and treatment. It is a useful educational aid for children undergoing treatment for leukemia and their families.