8 Facts We Learned about Lymphoma in 2014
Education & Research A recent patient survey by the Lymphoma Coalition revealed interesting insights about the lack of awareness surrounding blood cancers and the changing face of our health care system.
Fact 1: We need to raise more awareness.
Patient respondents in the U.S., Canada and Australia had the highest awareness about lymphoma prior to diagnosis, while six of the 11 countries surveyed had an awareness significantly below the global average of 27 percent.
Basic awareness prior to diagnosis:
- 38 percent in the United States
- 35 percent in Canada
- 34 percent in Australia
- 27 percent in Italy
- 24 percent in Brazil
- 22 percent in the United Kingdom
- 18 percent in Argentina
- 15 percent in Japan
- 6 percent in Colombia
Fact 2: Health care professionals need to make faster diagnoses.
Only 16 percent of all respondents were correctly diagnosed with lymphoma based on their initial symptoms. Moreover, patients were diagnosed later and less accurately in 2014 in that significantly fewer respondents were accurately diagnosed within the first four weeks of displaying their initial symptoms.
Fact 3: Knowing the symptoms is key.
In 2014, the top five most prevalent symptoms exhibited prior to their diagnosis were:
- Fatigue (17 percent)
- Painless swollen gland/lump (16 percent)
- Night sweats (14 percent)
- Weight loss (10 percent)
- Persistent itching (8 percent)
Fact 4: When it comes to diagnosis, accuracy is king.
Doctors' misdiagnoses for initial lymphoma symptoms included:
- Cold, virus, infection (13 percent)
- Dermatitis/ itchy skin/rash (9 percent)
- Glands/enlarged glands (9 percent)
- ‘Other’ (22 percent versus 14 percent in 2012)
- No diagnosis (9 percent versus 14 percent in 2012).
Fact 5: The dangers of misprescribing are very real.
Medication had been wrongly prescribed to 42 percent of those who had been misdiagnosed. Medication had been misprescribed to 68 percent of middle aged respondents, a far cry from the 16 percent of 10-29-year-olds and 17 percent of seniors.
Fact 6: The physical effects of lymphoma are varied.
In 2014, patients reported that the top three physical impacts of lymphoma are:
- Fatigue (50 percent)
- Hair loss (34 percent)
- Muscle weakness (31 percent)
Other respondents were affected by sleeplessness, changes in taste and smell, aching joints, trouble concentrating, nausea, changes in sexual function, loss of appetite, weight gain, and memory loss.
Fact 7: Lymphoma takes a strong emotional toll, as well.
Respondents were most impacted emotionally by:
- Changes in relationships with others (31 percent)
- Concerns about body image (27 percent)
- Financial stresses (24 percent)
Other concerns included depression, loss of self-esteem, isolation, difficulties with job performance, issues with insurance coverage and difficulty using the health system.
Fact 8: We must collectively work to remove the barriers to health care.
About 60 percent of patients indicated they had faced barriers to treatment. The top five barriers in access to care included:
- Lack of access to the most up-to-date therapies (49 percent)
- Lack of a locally available specialty physician (45 percent)
- Inability to give up their caregiver role (45 percent)
- Lack of access to a treatment center/prohibitive travel (44 percent)
- Lack of personal support (44 percent)