After concerns of a cancer progressing or recurring and worrying about the future (56% and 53%, respectively), other top concerns among general patient registry participants were eating and nutrition (56%), exercising and being physically active (51%), feeling too tired to do the things they need or want to do, sleep problems, health insurance or money worries, body image, moving around, and changes or disruptions in other areas of life like at work, school, and home. In addition, 40% of participants were moderately to very seriously concerned about their ability to think clearly and developing “chemo brain” or “brain fog.”

The general patient registry reported on the quality of life, side effect and symptom management, treatment decision-making, clinical trials, financial impact, and practical concerns of 2,569 patients living with cancer and cancer survivors aged 18–97 years. Cancer types included breast cancer, gynecologic cancer, prostate cancer, lung cancer, leukemia, lymphoma, colorectal cancer, head and neck cancers, multiple myeloma, melanoma, stomach cancer, kidney cancer, esophageal cancer, and gastrointestinal stromal tumor, among others.

Patients Feel Inadequately Prepared to Manage and Discuss Treatment Side Effects and Options With Their Providers

Four out of 10 participants in the general patient registry reported that they felt inadequately prepared to manage side effects of their cancer experience, with the same number reporting that they did not recall receiving information about long-term side effects. Additionally, 9 out of 10 rated quality of life a very important factor when weighing treatment options and 1 out of 3 were not satisfied with how much they participated in making the treatment decision.

One out of 3 participants reported holding back from telling their healthcare team about their side effects and symptoms, and half of participants reported that they did not feel prepared to discuss treatment options with their physician. According to the American Cancer Society, patients should decide how much they want to know about their diagnosis and treatment by comfortably discussing with their healthcare team.

Patients Need Additional Information on Clinical Trials

Enrolling in a clinical trial can be a treatment decision-making option for some patients, although 51% of participants feared receiving a placebo in a cancer clinical trial and 54% were uncomfortable with random assignment of treatment.

The Academy of Oncology Nurse and Patients Navigators suggests assuring your patient that no matter their decision to participate in a clinical trial, they will continue to receive quality care. Nurses should also inform patients if the clinical trial involves unpleasant things, such as blood draws or magnetic resonance imaging, and provide information regarding how the patient will be compensated. If possible, offer an opportunity for the patient to talk to another study participant about their experience.

The registry results indicated that patients were concerned they would receive a placebo when participating in a clinical trial, but according to Memorial Sloan Kettering Cancer Center, “only a small fraction of cancer clinical trials use placebos. If a placebo is part of the trial a patient is considering, they will be fully informed of that fact ahead of time.”

Nurses Must Battle Financial Toxicity Concerns

Another key concern among patients is the financial impact of cancer care. As many as 7 out of 10 participants reported that no one from their healthcare team talked to them about the cost of their care, and 1 out of 3 depleted their savings or used money from retirement to cover treatment costs, with 1 out of 10 postponing filling prescriptions to reduce cost—a big factor in oral adherence.

Financial support models such as financial navigators are showing promise in decreasing the number of patients experiencing financial hardship, and experts recommend identifying patients and families at risk for financial toxicity for early referrals instead of addressing it after it becomes evident.

Findings From the Caregiver Registry

Data from the caregiver registry, launched in December 2014, indicated that nearly half have anxiety levels that are substantially higher than the national average. In addition, 34% reported substantially higher fatigue and depression levels, and CSC said that fatigue, in particular, is “consistent with the substantial support caregivers provide.”

Caregivers’ top 10 concerns are:

• The patient’s cancer progressing or recurring
• Worrying about the future and what lies ahead
• The patient’s pain or physical discomfort
• The patient’s eating and nutrition
• Changes in the patient’s mood or behavior
• Exercising and being physically active
• Eating and nutrition
• Balancing caregiving with other demands
• The patient’s sleeping problems
• Keeping up with their own healthcare needs

Nurses can support cancer caregivers by providing education and skills training, empowering them through appreciation and trust, and providing assistance through caregiver support programs.

The cancer registry is ongoing and allows patients with cancer, survivors, and caregivers to share their experiences with cancer treatment and the challenges faced after diagnosis. As of June 2020, more than 14,700 patients, survivors, and caregivers representing more than 50 cancer types have joined the registry. The data can help clinicians, researchers, and policymakers better understand patient and caregiver needs and develop programs, evidence, and funding to improve their cancer experience. Your patients and their caregivers can contribute by joining the Cancer Experience Registry.