Identifying Long-Term Unmet Needs in Survivorship Care

Meg Barbor, MPH

November 2017, Vol 7, No 11 - Survivorship


New Orleans, LA—The number of cancer survivors is increasing. To keep up with this trend, survivorship care must evolve and become more efficient, insists Jennifer R. Klemp, PhD, MPH, MA, Director, Cancer Survivorship, University of Kansas Cancer Center, Westwood. A growing number of patients are living with or through their disease, while the provider workforce is shrinking.

“It takes a village to deliver survivorship care,” Dr Klemp said at the 2017 Annual New Orleans Summer Cancer Meeting. “We can’t silo our patients anymore, and we can’t think an oncologist or hematologist is good at managing diabetes. We have to be practical with getting primary care involved.”

Late- and Long-Term Side Effects

Late effects of cancer treatment can occur immediately but have the potential to last into the future, whereas long-term effects are seen years down the road. Each modality (ie, chemotherapy, immunotherapy, radiation, and surgery) exposes the patient to different late- and long-term side effects, and there is crosscutting between the modalities. Therefore, better risk-stratification tools are needed to identify the patients most at risk for these potential side effects.

“The whole concept with survivorship, as we start risk-stratifying patients, is that we can fix one thing, but at the cost of what else?” asked Dr Klemp. “That cost is fine only if we provide expectations, interventions, and strategies to intervene and mitigate.”

For example, estrogen can be a good or a bad thing, she said. Some cancers thrive on estrogen, but depleting it can lead to poor quality of life and exacerbated menopausal symptoms. In addition, women who go through early menopause have been shown to display early signs of dementia, cardiovascular disease, and bone health problems.

Because women with breast cancer live longer as a result of excellent therapies but are still at increased risk for cardiovascular disease, they are now more likely to die from their cardiovascular disease than from cancer. “We can’t keep saying, ‘My job is only cancer,’ because we’re increasing the risk of other chronic conditions in these patients,” Dr Klemp emphasized. Oncologists must work with cardiologists and develop those relationships, she stressed.

“We all know that many of these patients who have problems after their diagnosis had problems before their diagnosis,” she continued. “You’re not going to fix all that, but you have to give some realistic expectations as to how we can cure the disease at the same time that we help manage some of these unwanted side effects.”

Promoting a Healthy Lifestyle

Approximately 66% of women are overweight or obese at cancer diagnosis, and sedentary and sarcopenic obesity can lead to increased risk for new and recurrent cancers and comorbid conditions, so the importance of promoting a healthy lifestyle cannot be overstated.

“We need to be telling our patients to keep moving and eat better every single time they come in,” Dr Klemp urged. “Inflammation and weight gain are risk factors and need to be part of the care plan.”

She encourages the use of patient education materials designed by the American Institute for Cancer Research, the American College of Sports Medicine, and the American Society of Clinical Oncology. “Don’t reinvent the wheel,” she said. “Add those materials to your care plan.”

The number one symptom in patients with cancer is cancer-related fatigue, and the gold standards for its management are exercise, sleep, and controlling depression. “If you make a checklist and try to get people moving, sleeping, and managing their psychosocial side effects, hopefully fatigue and their ability to function will improve.”

Cognitive impairment can occur as a result of the cancer itself, the treatment, lack of sleep, fatigue, depression, or a combination of these factors. “The reality is that a checklist works for managing a lot of these late- and long-term effects that patients may experience,” she added.

Medication adherence is an ongoing concern, and now that 50% of the cancer drugs in the pipeline are oral, dealing with adherence to oral drugs at home is a major challenge. Dr Klemp urges providers to ask open-ended questions, establishing a dialogue, and fostering honest communication. Patients often use therapy longer when their symptoms are well-managed, underscoring the importance of listening to the patient voice. “This is all of our responsibility,” she said. “If you don’t have a good oral adherence program, you need to address that.”

Second Cancers Risk and Genetic Testing

The risk for second primary cancers is higher in survivors and ranges from 2% to ≥30% with a hereditary cancer risk. Rates vary depending on the site of the original cancer, but risk factors include cancer treatment effects and genetic susceptibility, as well as common factors such as tobacco, obesity, inactivity, and environmental exposures.

A patient who has a germline mutation has a 65% chance of a second primary cancer, and the presence of the mutation greatly affects decisions regarding screening, surveillance, and preventive options.

“Every single discipline is using genetic and genomic testing to make treatment-related decisions, and we need to incorporate those into survivorship so we could educate our patients and foster informed decision-making,” Dr Klemp said. “This is not an option anymore; it needs to be a part of our understanding.”

The issue of episodic billing further highlights the importance of developing more efficient testing methods. “The dollar clock starts when you develop a treatment plan, so a lot of this testing needs to be started before that stopwatch starts,” she advised. If germline and somatic tests are completed before patients see their oncologist, more effective and tailored treatment can be immediately pursued, and if patients are aware of their mutations, they may very well choose different surgical options.

All patients with ovarian cancer qualify for hereditary cancer testing, as do almost 40% of patients with breast cancer, and 25% of patients with colorectal cancer. “This should be an ongoing assessment, not only done at the time of diagnosis. This becomes, once again, all of our responsibility,” Dr Klemp said.

The urgent question is where survivorship care will be delivered. “With the increasing number of survivors, we’d love to keep them in a cancer center, but we don’t have room in the inn,” Dr Klemp said, again stressing the importance of developing relationships with primary care and other providers.

“Survivorship is something that affects every patient living with and through the disease, so the key is, we have to start investing in this,” she said. “Thinking through and addressing the needs of our patients, survivors, and care teams is essential.”