CSC launches new educational program to enhance lymphoma patient, physician communication

The Cancer Support CommunitySep 14 2010

The Cancer Support Community (CSC), uniting The Wellness Community and Gilda's Club Worldwide, announced today the launch of Framing Life With Lymphoma, a new educational program designed to enhance lymphoma patient and physician communication.  This research-based program, led by the CSC with support from Cephalon, Inc., provides lymphoma patients with easy-to-use tip sheets outlining ways to approach each conversation with their healthcare team across the course of their cancer journey – from diagnosis through treatment.  The patient tip sheets and other campaign information were created through input from an expert Steering Committee, and a national survey fielded by Harris Interactive of 150 hematologists/oncologists and 133 indolent lymphoma patients, which found that almost all physicians (96 percent) and most patients (86 percent) felt their communication could be more efficient with some form of aid or assistance as a guide.  The patient tip sheets, survey results and other program information can be found at www.FramingLifeWithLymphoma.org.  

Non-Hodgkin lymphoma (NHL) is divided into two main groups - indolent and aggressive.  Aggressive NHL grows quickly as opposed to indolent NHL (iNHL), which grows slowly.  Although iNHL is not currently considered "curable," patients may live for many years after diagnosis.  Framing Life With Lymphoma was designed for cancer patients who need extended support and guidance through their cancer journey.  

"We are pleased to introduce Framing Life With Lymphoma and hope it will become an important resource for the lymphoma community," said Kim Thiboldeaux, President and CEO of the Cancer Support Community and advisor for Framing Life With Lymphoma.  "A clear majority of patients (70 percent) and physicians (78 percent) reported that discussion materials would improve their conversations.  That is exactly what this program aims to do – provide patients with valuable resources, such as our patient tip sheets, to ensure that areas of concerns are covered during appointments."

The national survey showed that nearly all iNHL patients (97 percent) and physicians who treat them (94 percent) agree that being an informed lymphoma patient is very important in ensuring effective patient-physician communication.  Despite the value of this communication, iNHL patients and treating physicians overwhelmingly agree (79 percent and 90 percent, respectively) that patients need guidance in learning how to communicate with their healthcare providers.  

The survey also found that nearly four out of five physicians and patients believed physician support had a major impact on a positive iNHL treatment experience (patients: 79 percent, physicians: 78 percent).  In addition, 23 percent of patients believe that receiving support from non-physician healthcare professionals such as a social worker or nurse or a caregiver such as a friend or family member could help them have more effective conversations with their physician.

"Non-Hodgkin lymphoma is the seventh most common cancer in the United States, yet the majority of people who are diagnosed have very little information on the disease and how it may impact their lives.  This survey shows that it is critical that patients have resources to help them understand their condition and treatment options so they can communicate more effectively with their physicians," said David Henry, MD, Hematologist/Oncologist, Clinical Professor of Medicine, Pennsylvania Hospital, and the physician advisor for Framing Life With Lymphoma.  "In addition to providing information, physicians need to work with their patients to create a team-based approach to treatment.  Working as a team creates an environment where informed patients are more comfortable addressing their concerns and questions, which can have a positive impact on their overall treatment experience."    

Key Survey Findings:

• 70 percent of patients and 78 percent of physicians indicated that discussion materials (including brochures, checklists, online tools or digital information) would help them to have more effective conversations with their physician.
• About two in five of the surveyed patients (44 percent) do not ask all of their questions during visits, and the most common reason for not asking all questions is that they do not remember to ask them (25 percent).
• While physicians generally recognize patients' concerns about symptoms, side effects and the impact on daily life, they miss opportunities to discuss other issues that worry patients at initial diagnosis:
  • 60 percent of patients indicated that treatment options were a main concern for them vs. 31 percent of physicians
  • 51 percent of patients indicated that the impact on their family was a concern vs. 22 percent of physicians
  • 48 percent of patients indicated that the chronic nature of iNHL was a concern vs. 15 percent of physicians
• Most physicians believe they are involving patients in treatment decisions (93 percent) and many patients (74 percent) said that they were involved.
• Additional findings are available in the survey results fact sheet available at: www.FramingLifeWithLymphoma.org.