Navigation Links
New Survey Highlights the Challenges of People Living with Rare Cancer
Date:12/14/2009

The CURE Rare Cancer Survey, sponsored by Novartis Oncology, was conducted independently for CURE magazine among 1,365 of its readers living with cancer, to uncover challenges facing patients today and better identify their needs. The Leukemia and Lymphoma Society, the National Organization for Rare Disorders, CancerCare, the Life Raft Group and GIST Support International react to survey results in videos which are included at the bottom of this release.

East Hanover, NJ (PRWEB) December 14, 2009 -- A new national survey shows that nearly one in three patients with rare cancers – twice the number as those with more common cancers – say they received multiple misdiagnoses when their cancer was first discovered. This delay in receiving a final, correct diagnosis leaves the vast majority of patients with rare cancers (75%) feeling very frustrated (1a). The online CURE Rare Cancer Survey, sponsored by Novartis Oncology, was conducted independently for CURE magazine among 1,365 of its readers living with cancer to uncover challenges facing patients today and better identify their needs (1b).

If you or a loved one are among the nearly 35,000 adults in the US who have a rare cancer (2, 3), you are familiar with these challenges. Rare cancers are difficult to diagnose because symptoms can be absent, masked or mimic those of more common diseases while overall awareness, research and treatment options typically lag behind those for more common cancers (4).

According to the survey results, patients with rare cancers are also more likely than those with more common cancers to say they lack access to credible and reliable information, causing them to feel alone in dealing with their disease (1c). In fact, 74% believe they must be their own treatment champions (1d). Acting as their own advocates, patients with rare cancers are two times more likely to search for disease information online than those with more common cancers (1e).

Online resources are increasingly available for those with rare cancers. Novartis Oncology developed programs to help patients become educated on two rare cancers mentioned by survey respondents – chronic myeloid leukemia (CML) and gastrointestinal stromal tumors (GIST):

 
  • The CML Alliance and GIST Alliance programs provide valuable information to people with CML and GIST such as information about the rare cancers, treatment goals, the importance of regular testing and check-ups and patient assistance programs.
  • CML Earth and GIST Earth are social networking communities designed to help patients feel less alone by providing a portal for them to privately share, support and connect with others like themselves. Patient discussion panels show that networking is important to patients with rare cancers who are looking to connect with people who have had similar experiences (5).
“These survey results show that patients with rare cancers have an urgent need for comprehensive, accurate information,” said John Hohneker, MD, Senior Vice President, US Clinical Development and Medical Affairs, Novartis Oncology. “Our online resources provide patients with CML and GIST accessible, reliable and multi-dimensional support so they can make informed decisions about their treatment options.”

Detailed results from the CURE Rare Cancer Survey were published in CURE’s fall 2009 issue available at www.CUREToday.com. The magazine and Web site also includes the first-ever ‘A Patient’s Guide to Rare Cancer,’ which is designed to address the issues raised in the survey and to help patients communicate more effectively with healthcare providers about their cancers.

“Surrounding patients with many levels of support can help them feel less alone in their disease management,” said Debu Tripathy, MD, CURE Editor-in-Chief. “Giving patients with rare cancers a better understanding of their disease can ease their frustration.”

The complete CURE Rare Cancer Survey report is available online at: CMLAlliance.com, GISTAlliance.com and CUREToday.com.

The Leukemia and Lymphoma Society, the National Organization for Rare Disorders, CancerCare, the Life Raft Group and GIST Support International discuss CURE magazine’s RARE Cancer Survey (click on individual video links):

 

References
(1.) CURE Media Group. CURE Rare Cancer Survey Report, May 15, 2009.
(1a.) Section 1, page 13, table 3
(1b.) Methodology, page 2, lines 1-6
(1c.) Section 7, page 20, table 1, line3
(1d.) Section 7, page 20, table 1, line 4
(1e.) Section 7, page 20, table 1, line 9
(2.) National Cancer Institute Web site. Common Cancer Types Fact Page. Available at National Cancer Institute Web site.
(3.) American Cancer Society: Cancer Facts and Figures 2009. Atlanta, GA: American Cancer Society, 2009. Available at American Cancer Society Web site.
(4.) National Institutes of Health, Rare Diseases Clinical Research Network Fact Sheet. Available at National Institutes of Health Web site.
(5.) Panel Intelligence, Discussion Panel Transcript: Journey of Survivorship – Round 2. Prepared for Novartis, October 2007.

# # #

Read the full story at http://www.prweb.com/releases/2009/12/prweb3322434.htm.


'/>"/>
Source: PRWeb
Copyright©2009 Vocus, Inc.
All rights reserved  

Related medicine news :

1. Survey reveals disparities in skin cancer knowledge, protection among high school students
2. New Survey Shows Americans are Still Concerned About Food Safety, Yet Still Not Smart About What They Like to Eat
3. One of the Largest Post-WHI Physician Surveys Shows More Education is Needed: Patient Misinformation About Hormone Therapy Remains High
4. Hospitals Could Improve Outcomes for Patients and Save Millions According to Hill-Rom 10th Annual Pressure Ulcer Survey
5. Youth Drug Use at a Five Year Low, New Survey Shows
6. Survey From The Partnership and MetLife Foundation Reveals Important Role Todays Grandparents Play in Teens Lives
7. Parental surveys boost diagnosis abilities of pediatricians
8. National Survey Shows Employee Fears About Consumer-Driven Health Plans on Decline
9. JHA Releases 2007 U.S. Group Disability Mid-Year Market Survey Results
10. PA Health Department Survey Shows Impact of Income, Gender, Other Factors on Health and Access to Health Care
11. Launch of second European Cancer Research Funding survey
Post Your Comments:
*Name:
*Comment:
*Email:
Related Image:
New Survey Highlights the Challenges of People Living with Rare Cancer
(Date:8/18/2017)... ... August 18, 2017 , ... August ... “Vision & Hearing,” advocating for active, healthy lifestyles and highlighting the importance of ... individuals with hearing impairments and shares the latest innovations in hearing aid technology. ...
(Date:8/18/2017)... ... August 18, 2017 , ... The Dawn Johnson Insurance Group, a ... charity drive to generate community support for efforts to educate the local population on ... for all types of cancer. , Each day in America, roughly 4,600 new ...
(Date:8/18/2017)... ... August 18, 2017 , ... Moore Insurance, a ... in east Texas, is launching a regional charity effort to provide publicity assistance ... the Pediatric Brain Tumor Foundation (PBTF) has raised nearly $30 million in donations ...
(Date:8/18/2017)... TX (PRWEB) , ... August 18, 2017 , ... ... management and financial planning firm that serves residential and commercial clients in the ... charity drive to raise community support for the fight against cancer. , Founded ...
(Date:8/18/2017)... ... August 18, 2017 , ... With over 16,000 active ... hormone replacement therapy and integrative medicine, has become a frontrunner for people seeking ... as menopause, andropause, thyroid disorder and adrenal insufficiencies. , Founded in 2003 ...
Breaking Medicine News(10 mins):
(Date:8/7/2017)... Aug. 7, 2017  Diplomat Pharmacy, Inc. (NYSE: DPLO), the ... quarter ended June 30, 2017.  All comparisons, unless otherwise noted, ... Second Quarter 2017 Highlights include: ... $1,089 million, an increase of 3.5% Total ... Gross margin of 7.5% versus 7.6% ...
(Date:8/3/2017)... 2017  Opioid addiction and other drugs of abuse, ... and threatening outcomes, were problems taken on directly as ... that support them, met this week. This according to ... drugs of abuse, procalcitonin and acute kidney injury were ... 69th meeting in San Diego, CA. ...
(Date:8/2/2017)... CaryRx, a next-generation full-service pharmacy, has announced the ... in the Washington D.C. metropolitan area. ... delivery of medications through the convenience of its patient-friendly mobile ... within one hour to any location in D.C. ... invaluable service to Washington D.C. ," says ...
Breaking Medicine Technology: