New study shows patient advocacy leads to better care, treatment and quality of life - Unique research points to value of patient information and support.
Key findings from a study released today by Kidney Cancer Canada (KCC), the first of its kind to be conducted among advanced kidney cancer patients and their caregivers, show that greater patient involvement in their care and treatment leads to better quality of life, and point to the value of patient information and support in giving patients hope.
"We've seen first-hand what can happen when patients get involved in their own care and treatment," says Deb Maskens, Chair, Kidney Cancer Canada. "This study proves there is a direct connection between empowering patients with information and support and improved access to the best available care."
Barriers to improved quality of life
The KCC Patient Care Study, conducted among Canadian patients and their caregivers living with the advanced form of kidney cancer known as metastatic renal cell carcinoma, uncovers the barriers they face and identifies opportunities to overcome them in fighting this disease. In the study, stress, fatigue, the lack of access to sequential treatment, and the fear of their cancer getting worse, are identified most often as the biggest barriers to improved quality of life.
"When I was diagnosed with kidney cancer, I was devastated. It had a huge effect on the quality of my life," says Dale Miron, kidney cancer survivor. "If I didn't get involved in my own care and treatment, I don't know if I would be here today. And, as a member of KCC, I also find comfort in knowing that should the cancer get worse, I can connect with other people and learn from their experience."
Overcoming barriers through support
KCC members who participated in the Patient Care Study rate their health higher, are more proactive in researching their health concerns, and say they are better able to deal with these concerns through support from other people with kidney cancer and from patient groups. In fact, KCC members report having a positive attitude (57 per cent), knowing other people with kidney cancer (47 per cent) and seeking support from cancer-focused non-profit groups (42 per cent) to ease kidney cancer difficulties more often than non-members (34 per cent, 20 per cent and 9 per cent, respectively).
Reaching out to others was also associated in the study with tangible health benefits and outcomes. For example, 82 per cent of KCC members say they are more likely to be treated primarily by an oncologist, compared with 61 per cent of non-members. Meanwhile, 55 per cent of KCC members sought second opinions, compared to 34 per cent of non-members, and receive second- and third-line treatment more quickly when first line treatments failed, than patients who were not involved with the KCC.
"Patients who advocate for themselves by taking an active role in their own care and treatment find the hope they need to fight back," says Maskens. "We urge anyone who has been diagnosed with kidney cancer, and those who care for them, to join the fight and contact us today."
About the Patient Care Study
The KCC Patient Care Study was conducted by Ipsos Health among patients living with advanced kidney cancer and their caregivers, in 2009. A total of 84 respondents (40 KCC members, 44 non-KCC members) participated in the study representing a range of ages and life stages, and most provinces across Canada.
About Kidney Cancer Canada
Kidney Cancer Canada is the first Canadian-based, patient-led registered charity established to improve the quality of life for patients and their families living with kidney cancer. Kidney Cancer Canada advocates for access to new treatments, provides support and information to patients, works to increase awareness of kidney cancer as a significant health issue and raises funds for much-needed kidney cancer research. For more information please visit: www.kidneycancercanada.ca
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