Cancer Care Experiences

NCCS asked patients and caregivers several questions in this year’s survey to better understand their experiences throughout the continuum of care.

This year, 80% of patients, 87% of caregivers, and 59% of NCCS-connected individuals reported receiving a care plan from their health care team that helped them understand what to expect. Patients currently in treatment are more likely to say their health care team provided a care plan, while those who completed treatment are more likely to say they did not or are unsure. Further exploration for next year’s survey will be to understand the nature of the care plan, whether it was oral or in writing, and how detailed it was.

Most patients remain very satisfied with each stage of their care, and satisfaction has increased this year on several dimensions. Most patients with Stage IV cancer (56%) who were asked about their satisfaction with end-of-life planning and care were unable to comment, which may indicate that they have not had these conversations as part of their care. Ninety percent (90%) of caregivers said they attended all or most appointments with their loved ones. They were significantly less satisfied and more critical of the care their loved one received. Caregivers’ satisfaction with care is at least 10 points lower at nearly every phase of the cancer journey. However, both caregiver and patient satisfaction is higher among those who received a care plan.

Consistent with previous years, patients largely report positive experiences with their health care team, but certain groups report less satisfaction with their care. Eighty-two percent (82%) of patients say they completely trust their health care team to act in their best interest. However, this is lower among Black (74%) and Hispanic (73%) patients. Further, 69% of patients say they felt their health care provider always listened and respected their questions and concerns, but only 51% of young adults agree. At the same time, only 63% of caregivers trusted their health care team to act in their loved one’s best interest, while just 53% felt the health care provider always listened and respected their or their loved one’s questions and concerns.

In this year’s survey, 90% of patients say they experienced at least one symptom during treatment. As in previous years, feeling overly tired and mental health concerns are still the primary symptoms experienced, both of which increased since last year. Women, Black and Hispanic patients, and young adults are more likely to experience a variety of symptoms, with six-in-ten young adults reporting mental health issues. Patients who have completed treatment are most likely to report still experiencing sexual concerns, fatigue, mental health issues, and neuropathy. LGBTQ patients are significantly more likely to say they still experience mental health issues (34% compared to 18% overall).

Most patients and caregivers say they felt very informed about side effects from treatment, compared to only 44% of NCCS-connected individuals. However, less than half of patients say their health care team was very helpful in addressing some of the most common side effects. Specifically, patients report that their health care teams were less helpful in addressing memory loss and cognitive issues, insomnia or sleeplessness, and sexual concerns. Patients who received a care plan felt more informed and that their care team was helpful.

During the post-treatment stage, 44% of patients report seeing their oncologist for follow-up care, compared to 30% of patients who see their primary care physician. During these visits, patients primarily discuss follow-up tests to monitor their cancer with their health care provider. Far fewer discuss other issues, nor do they express interest in doing so. Patients who continue to see their oncologist during post-treatment care are more likely to discuss follow-up tests, quality of life, support groups, and a survivorship care plan than those who see their primary care provider.

Patients also express experiencing financial impacts because of their cancer. The number of patients impacted financially decreased nationally to 43% (compared to 47% in 2022), but young, Black, Hispanic, and NCCS-connected patients, as well as patients with Stage IV cancer, continue to report more financial hardship. Caregivers also have higher rates of financial consequences. Overall, patients were more likely to say that they had to spend savings or retirement money to cover living expenses, apply for government financial assistance, or borrow money from family or friends.

Read more detailed data about experiences in cancer care in the full 2023 report. Download it Here »