Welcome to the 2020 Cancer Experience Registry Report

What is the Cancer Experience Registry®?

The Cancer Experience Registry is an opportunity for any adult touched by cancer to share their experience so that others may learn. This online survey captures several parts of the patient and caregiver experience including physical, emotional, social, practical, and financial aspects of cancer. Doctors, nurses, researchers, policymakers, and others in the health care field use the findings in this report to help improve the cancer care journey.

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What is the 2020 Cancer Experience Registry Report?

The 2020 Cancer Experience Registry Report describes general findings among patients with any cancer type, findings among patients living with specific cancers, and findings among caregivers. Below are some key highlights.

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This is what people in the report tell us about living with cancer:

	SIDE EFFECT AND SYMPTOMS 4 out of 10 felt inadequately prepared to manage side effects of treatment 4 out of 10 did not recall receiving information about long-term side effects of treatment 1 out of 3 held back from telling their health care team about side effects and symptoms
	TREATMENT DECISION-MAKING 9 out of 10 rated quality of life as a very important factor when weighing treatment options 1 out of 3 were not satisfied with how much they participated in making the treatment decision 1 out of 2 did not feel prepared to discuss treatment options with their doctor
	COST OF CARE 1 out of 10 postponed filling prescriptions to reduce cost 7 out of 10 reported that no one from their health care team talked to them about the cost of their care 1 out of 3 depleted savings or used money from retirement to cover treatment costs
	PRACTICAL CONCERNS 41% were moderately to very seriously concerned about changes or disruptions in work, school, or home life 40% were moderately to very seriously concerned about thinking clearly (“chemo brain” or “brain fog”) 13% were moderately to very seriously concerned about transportation to treatment and appointments

This is what people who were caregivers tell us:

	CAREGIVER ROLES 89% were quite a bit/very much involved in providing emotional support 80% were quite a bit/very much involved in going to medical appointments with the patient 20% spent more than 100 hours per week caregiving 16% reported having received formal caregiving training 41% of those trained wanted additional training
	CAREGIVER NEEDS 3 out of 4 wanted help with understanding the patient’s medical condition and treatment More than 1 out of 2 wanted help managing health benefits and financial services Nearly 1 out of 2 reported at least sometimes experiencing a sense of loss of control over their own life

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CAREGIVER ROLES

89% were quite a bit/very much involved in providing emotional support

80% were quite a bit/very much involved in going to medical appointments with the patient

20% spent more than 100 hours per week caregiving

16% reported having received formal caregiving training

41% of those trained wanted additional training

CAREGIVER NEEDS

3 out of 4
wanted help with understanding the patient’s medical condition and treatment

More than 1 out of 2
wanted help managing health benefits and financial services

Nearly 1 out of 2
reported at least sometimes experiencing a sense of loss of control over their own life

Do you have questions about the findings or the report?

Email us: research@cancersupportcommunity.org

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Together we can improve cancer care.

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