Having a solid patient/physician relationship may seem like a luxury, but for those who are being treated for diseases like lymphoma, it’s a necessity. Many people living with cancer are unsure how to work with their health care team to do this.
Effective communication is a critical part of cancer care, but a survey conducted online by Harris Interactive on behalf of Cephalon consisting of 133 patients diagnosed with indolent non-Hodgkin lymphoma (NHL) and 150 hematologist/oncologists, reveals crucial communication gaps and misconceptions that can affect the quantity, quality and types of information doctors and patients share during limited appointment times. Further, 25 percent of the surveyed patients said they don’t remember their questions when seeing the doctor and more than three-quarters of them (79 percent) wanted guidance on how to communicate more effectively with their physicians.
Based on findings from the Harris Interactive survey, patient focus groups and a team of health care professionals and patients, the Cancer Support Community with support from Cephalon, Inc., developed the Framing Life with Lymphoma program. This newly developed web-based program, available at www.FramingLifeWithLymphoma.org, includes communication tips for cancer patients who are newly diagnosed and who are beginning or finishing cancer treatment. The tips are divided into two patient categories – newly diagnosed and those going through treatment. Some of the tips include:
• Be informed. Patients and family members can find information on lymphoma and other cancers through the Leukemia and Lymphoma Society, National Cancer Institute and the CSC.
• Allow yourself time. Being diagnosed with cancer can be overwhelming, making it difficult at the beginning to process information provided by a doctor.
• Voice your concerns. If a patient is worried about something specific, share it with the doctor, who may provide additional guidance.
• Keep a journal. It can help to write down physical and emotional feelings, treatments received, side effects and questions patients want to ask at their next visit. The CSC’s Frankly Speaking About Cancer Treatment booklet and journal are available free at www.cancersupportcommunity.org.
• Understand your health care team. When it comes to treatment, keeping track of who is handling what can be stressful. Work with the doctor to identify a health care “captain” who will be the patient’s go-to person during treatment and beyond.
“By narrowing these gaps and overcoming misconceptions, we may be able to improve the overall quality of the experience for cancer patients from the time of diagnosis through treatment and beyond,” said David Henry, MD, hematologist/oncologist, Clinical Professor of Medicine, Pennsylvania Hospital, and the physician adviser for Framing Life with Lymphoma. “But patients and physicians both need the right tools and information to effectively communicate their needs.”
Approximately 30 different types of NHL are known and are divided into two categories, indolent and aggressive. Indolent lymphomas are slow-growing with a median survival of about 10 years. An estimated 452,723 people in the U.S. are living with, or in remission from NHL, the seventh most common cancer.