Misinformation mushrooms with uninformed patients

Patient’s knowledge of diagnosis is important

Phone calls to patients who had filled out request forms for information about their cancer at the Duke University Medical Center’s resource library became routine because it would be unclear what the patient wanted to know.

"I would really feel unsure that they knew enough about their cancer to provide me with the information that I needed to give them the answers they wanted," says Kerry Harwood, RN, MSN, director of the Durham, NC-based center’s cancer patient education program.

To determine if there was a problem, Harwood conducted an informal survey. With patients’ permission, she took 20 sequential requests and compared their requests with their on-line records, which included their pathology report, X-ray results, and physician notes. Every request had information that was not applicable to their diagnosis.

"They would write that they had bone cancer, but what they had was metastatic disease from another primary to their bone. If we gave them information about the treatment of their disease based on what they had written, it would be incorrect," says Harwood. All the metastatic sites that are common such as liver, lung, and bone would be identified in the request forms as primary cancers.

Following the survey, the resource center staff concluded that it would be dangerous to give patients very focused information about the treatment of a certain stage of a certain disease when they weren’t clear what the patients’ diagnoses were. Therefore, written request forms are no longer accepted. People requesting information must do so in person so staff can ask questions.

For example, if a patient says he or she has been diagnosed with bone cancer and requests information, staff will take time to discuss the patient’s cancer history to determine if he or she has been diagnosed with the disease before.

"Sometimes I will give them two different types of information and actually write down the questions they need to ask their doctor to determine which information applies to them," says Harwood.

Cancer is a complicated subject because there are hundreds of different illnesses. People don’t understand the basics of cancer treatment before they are diagnosed; and once they are, they are usually in crisis and find learning difficult. How-ever, in the past when Harwood determined that patients from certain services were consistently unclear about their diagnosis, she worked with the nurse clinicians and practitioners in those areas to improve patient education and tried to enhance the resources they had for their patients.

The best approach is for the resource center to support the clinical teams, says Harwood. In this scenario, the resource center manager would work with the clinical team to identify resources that would be the most helpful for their patients so that the clinicians could refer the patients for those specific resources. For example, Harwood worked closely with the nurses in the breast program, showing them materials appropriate for the variety of patients that they serve.

In this way, they can write prescriptions for the materials and send their patients to the resource center. "Also, they know that when they have an unusual situation and they need a different kind of resource, they can call me and explain what they are looking for," says Harwood.

Many physicians are beginning to give their patients education notebooks that prompt patients to record their cancer diagnosis, stage, and pathology. "When they have that information, it empowers them to get additional information that is appropriate for their situation," says Harwood.

For more information about ensuring patients are asking appropriate questions at resource centers before giving out materials, contact:

Kerry Harwood, RN, MSN, Director, Cancer Patient Education Program, Duke University Medical Center, DUMC Box 3677, Durham, NC 27710. Telephone: (919) 681-5288. Fax: (919) 681-7473. E-mail: kerry.harwood@duke.edu.