Updated Cancer Registry to Provide Patients, Survivors and Caregivers a Tool to Highlight Unmet Needs

By better understanding survivor and caregiver experiences, positive change can be made on both the individual and systemic levels, according to an expert from the Cancer Support Community, a nonprofit that recently launched its 2022 Cancer Experience Registry.

“The research into the patient and caregiver experience has to keep pace with innovations in clinical care if we’re to meet the broad spectrum of patient and caregiver needs,” explained Heather Badt, the executive director of the Research and Training Institute at Cancer Support Community, in an interview with CURE®.

Cancer Support Community’s Cancer Experience Registry collects responses from patients, survivors and caregivers regarding the emotional, physical, practical and financial impacts of cancer. It also helps to identify critical unmet needs. The goal, according to Badt, is to “elevate the voice of all people impacted by cancer and to influence real-world outcomes to ensure patients, survivors and caregivers get needed support and resources.”

Anxiety and Depression in Patients and Caregivers

The previous Cancer Experience Registry, which was published in 2020, found that 49% of participants were at risk for clinically significant anxiety, and about 40% were at risk for clinically significant depression.

“This is really important because while new clinical guidelines and standards require that patients be screened more comprehensively for distress, others only require that patients be screened for depression,” Badt said. “A patient’s well-being can really have an impact on their care experience and outcomes.”

Patients and survivors were not the only ones who were experiencing distress. Registry data showed that 49% of cancer caregivers reported feelings of anxiety, while 34% reported fatigue, and 34% also reported symptoms of depression.

Some cancer caregivers even reported spending more than 100 hours each week caring for their loved one.

“The caregiver voice often is not elevated. We’re privileged to be able to do that through this work,” Badt said. “It’s well known that quality caregiving can lead to patient outcomes improving and that caregivers are at a critical point in decision making during treatment.”

Help Is Out There

Patients, survivors or caregivers who are struggling emotionally are encouraged to bring it up with their health care team, explained Badt. Additionally, they can turn to Cancer Support Community to talk with an expert or find an online community of others who may be going through similar experiences.

“We want patients to know that they’re not alone, and that there’s a community of people to help them. I’d encourage anyone who is struggling in any way to reach out to the Cancer Support Community helpline. We have licensed health care professionals who can help them get the resources they need to cope with this life-changing diagnosis,” Badt said.

The 2022 Cancer Experience Registry is currently open on Cancer Support Community’s website.

“Each person’s journey is unique and has an impact; we are appreciative of anyone who is willing to share their experience through the registry,” Badt said. “It helps us bring forward those programs and educational materials to support those impacted, as well as the policies to address those actual needs.”

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