Dr. Lidia Schapira, a medical oncologist at Massachusetts General Hospital, learned three harsh realities of cancer diagnosis after inviting her breast cancer patients to answer a free online survey to become part of the Cancer Experience Registry, a website that went live last spring:
-- 54 percent of the more than 6,000 cancer patients in the national registry said they wish they received more help dealing with emotions related to cancer.
-- 58 percent reported that they wished they had more help managing long term side effects like fatigue and anxiety.
-- 41 percent said engaging in sex since their diagnosis has been a source of distress.
“The registry is aimed at survivors to enable them to share their experiences with the disease,” Schapira said. But, she added, data collected on the site—each survey is kept private from the public—can be culled and used to better inform doctors and researchers about what patients contend with medically and what resources they lack for managing their disease.
Anyone who has ever been diagnosed with cancer can join the Cancer Experience Registry and fill out a 30 to 45 minute survey asking about their diagnosis, treatment, ongoing symptoms, and level of emotional support.
“It’s very user friendly and enables us to understand the needs and challenges at each point along the care continuum,” said Joanne Buzaglo, vice president of research and training at the Cancer Support Community, an nonprofit patient advocacy organization that runs the registry. In June, the site will allow caregivers of cancer patients to also share their experiences.Deborah Kotz can be reached at email@example.com. Follow her on Twitter @debkotz2.