Long-term data are lacking on how younger women feel about the decisions they made regarding fertility preservation prior to embarking on treatment for their breast cancer. Findings from a study presented at the 2017 Cancer Survivorship Symposium suggest that many of these women experience decisional regret about their choices, and that regret continues long after their initial diagnosis.

“The goal of this study was to ask, ‘What happens to feelings about that decision over time?’” explained study author H. Irene Su, MD, MSCE, associate professor of reproductive medicine at the University of California, San Diego School of Medicine.

“We were able to follow a smaller group of patients with breast cancer and found that nearly half of women will feel regret about their decision on fertility preservation and that the regret really persists over time. We also found that half of our participants worried about their future fertility.”

Su and her team at UC San Diego studied 169 young breast cancer survivors aged <45 years from 3 academic breast cancer programs. The women were recruited after diagnosis of stage I-III cancer between 2009 and 2012, and followed for ovarian function over 5 years.

During study visits every 6 months, the women were given questionnaires to complete on fertility preservation choices worry about future fertility that included the Decisional Regret Scale, which measures distress or remorse on a 0 (no regret) to 100 (highest regret).

Decisional Regret Scale data were available for 89 of the women. Of those, 48% reported decisional regret about fertility preservation and 52% were worried about future fertility. Thirty-one percent of the respondents had undergone fertility preservation, however, this was not associated with decisional regret, the authors reported.

“It turns out, in this group, regardless of whether you had fertility preservation or not, you still feel regret,” Su said. “I can see it both ways: the idea that you didn’t do it, now you regret it; or, that you did it, and perhaps, for reasons we didn’t ask, such as never needing to use your banked oocytes or embryos, you might regret that decision, too.”

Su added that it is important for patients to ask their healthcare providers questions like: What do you know about whether my cancer treatment will affect my ability to have children later? How does treatment for cancer affect my eggs? How will treatment potentially impact my health during pregnancy?

For women experiencing regret after treatment, Su said it may be best to seek medical advice from their oncologists and reproductive specialists about potentially starting their families and the best way to safely do that. She said it also helps to get peer support.

“We’re making strides in talking about fertility preservation at diagnosis, but actually this conversation should be happening into survivorship,” said Su. “It would be [desirable] to consider the idea of a ‘productive window’; despite knowing that it is narrower after treatment, can survivors consider fertility preservation if they didn’t seek it before treatment?”

 Dewald SR, Natarajan L, Su I. Fertility preservation and decisional regret in young breast cancer survivors: a longitudinal analysis. 

Articles

A study recently found that patients treated for breast cancer may experience decisional regret about their fertility choices.

Many Breast Cancer Survivors Experience Decisional Regret About Fertility

Aging comes with a wide range of health challenges, including muscle loss and the risk of falls. When you add a cancer diagnosis to the mix, those challenges increase. However, there are ways that patients with cancer can reduce their risk.

In a recent study presented at the 2017 Cancer Survivorship Symposium, researchers from MD Anderson Cancer Center in Houston examined the prevalence of vitamin D insufficiency and risk factors for falls in patients aged 65 or older undergoing active cancer care for gastrointestinal, urologic, breast, lung or gynecologic cancers.

They found that these patients were more likely to experience frailty, osteoporosis and vitamin D insufficiency, raising the possibility of injury-causing falls.

“Sixty percent of patients with cancer are over the age of 65, and that number is going to grow,” Beatrice J. Edwards, MD, MPH, FACP, associate professor geriatric medicine and author on the study, said in an interview with 

. “These unique issues that they present have to be addressed in order to give them the best quality of life possible.”

The study was conducted by giving 305 patients, both men and women, a comprehensive geriatric assessment, including cognitive, functional, nutritional, physical and comorbidity assessment. Researchers also examined bone density and vitamin D.

Eighty percent of patients had low bone mass and osteoporosis; 53% experienced frailty; 48.8% had vitamin D insufficiency; 37% experienced mild cognitive impairment; and 33% had dementia.

In addition, 26% of patients studied had one or more falls in the six months prior to the study; women had a higher fall rate.

“Some of the changes that they are experiencing with aging and cancer care are not necessarily irreversible,” she said. “There are things that the patients can advocate for themselves in order to remain on their feet, independent, for as long as they’re going to be here.”

Edwards said older patients can reduce their risk of frailty by seeking good nutrition, as well as engaging in exercise, both aerobic and resistance or weight training, Vitamin D insufficiency can be tackled by taking supplements. “Vitamin D reduces falls by 50%, and we know it has some anti-cancer effects,” Edwards said. “This is a treatable cause of falls. To me, it’s a no-brainer,” she added.

Edwards’ recommendation for vitamin D supplements is vitamin D3, 2000 units a day, which she said patients with cancer will not get in a multivitamin. If patients are deficient, then that regimen would need to be replaced with high-dose vitamin D.

Patients can take treatment for osteoporosis. Calcium, vitamin D and osteoporosis medications like denosumab (Prolia), zoledronic acid or oral bisphosphonates can reduce the risk of fractures by 50%.

Muscle loss or sarcopenia also affects older patients with cancer. “Even older adults without cancer will lose up to 40% of their skeletal muscle by the age of 70, unless they are doing weight training,” said Edwards. “When you add chemotherapy to their regimens, which they need in order to survive, you just aggravate the muscle wasting.”

If a patient notices changes such as memory loss, weight loss or balance problems they should tell a medical professional.

“If they feel unsafe on their feet — we call that ‘fear of falling’ &mdash; they should bring that up because then the oncologist can refer them to physical therapy, and hopefully check their vitamin D level,” Edwards said.

Overall, the authors on the study noted that greater awareness and targeted interventions would be beneficial in preventing falls that lead to injury.

A recent study found that older patients with cancer had a greater risk of frailty, osteoporosis, and vitamin D insufficiency.

A Lack of Vitamin D: Fear of Falling in Older Patients with Cancer

A new study has provided yet more evidence that survivors of endometrial cancer should be closely monitored for cardiovascular disease. These women are at higher risk for various long-term cardiovascular problems compared with their cancer-free counterparts, especially phlebitis and thrombophlebitis, pulmonary heart disease, hypotension, and atrial fibrillation.

In fact, even after 5-10 years, this elevated risk persisted in endometrial cancer survivors for 18 of 70 outcomes, a team led by researchers at the Huntsman Cancer Institute reported at the recent 2017 Cancer Survivorship Symposium.

Cardiovascular disease is the leading cause of death among the estimated 757,000 survivors of endometrial cancer in the United States. Against this backdrop, investigators used the Utah Population database to compare cardiovascular outcomes for 2648 survivors diagnosed with endometrial cancer between 1997 and 2012 and those of 10,503 age-matched, cancer-free counterparts. The majority of endometrial cancer cases (89.4%) were stage I or II.

For their analysis, researchers used clinical classification software to adapt ICD-9 diagnosis codes into cardiovascular disease categories. Statistical models that were adjusted for race, BMI, and comorbidity (using the Charlson Comorbidity Index) computed hazard ratios (HRs) for the cardiovascular outcomes at 2 time points: 1-5 years after diagnosis and 5-10 years.

Overall, the most common late effects seen in endometrial cancer survivors were hypertension, which occurred in approximately 47% of survivors 1-5 years after diagnosis and 33% of the survivors, 5-10 years later. Diseases of the heart occurred in approximately 36% and 25% of survivors at the 2 respective time points; diseases of lymphatics in approximately 24% and 14%, respectively, and diseases of arteries, arterioles, and capillaries, in 19% and 14%.

The comparative risk analysis showed that at the 1-5 year—interval, phlebitis and thrombophlebitis posed the highest cardiovascular risk for endometrial cancer survivors (HR, 3.11; 99% CI, 1.83-5.28). Other high-risk outcomes observed were lymphatic diseases (HR, 1.89; CI, 1.64-2.19), hypotension (HR, 1.85%; 99% CI, 1.29-2.65), pulmonary heart disease (HR, 1.71; 99% CI, 1.24-2.36), and hypertension with complications (HR, 1.66; CI, 1.17-2.35). Notably, the elevated risk for this population held 5-10 years later for 18 of the 70 outcomes overall.

“This study presents sufficient evidence to suggest that increased monitoring is necessary for women diagnosed with endometrial cancer in the first several years after diagnosis, and out 10 years as well,” study authors concluded.

There are currently no globally accepted guidelines for follow-up cardiac monitoring in cancer survivors, despite the fact that cancer treatments can lead to various cardiovascular toxicities, such as left ventricular dysfunction and radiation-induced heart disease, according to researchers on a related study presented at the survivorship symposium.

 They reported on a 2-part cardiac assessment protocol, building on consensus statements from the American Society of Echocardiography and the European Association of Cardiovascular Imaging.

In providing a rationale for their study, the research team from New York Presbyterian/Lawrence Hospital, Northwestern Medicine, and the Lurie Comprehensive Cancer Center, pointed to the “particularly concerning effect” posed by cancer therapy—related cardiac dysfunction now that survivors are living longer.

Although researchers said more data are needed to assess how well the protocol measures long-term cardiac and survival outcomes, the first assessment tool they developed shows potential for deployment in the pretreatment setting by an oncologist when agents known for cardiotoxicity are part of the treatment plan. The second part would be used to stratify cardiac risk and develop an appropriate monitoring plan during survivorship.

Soisson SP, Ganz PA, Rowe KG, et al. Cardiovascular late effects among endometrial cancer survivors in a cohort study. 

Veneruso A, Slocum MR, Kircher SM, et al. Developing a cardiac monitoring plan in at-risk cancer survivors. 

Survivors of endometrial cancer are at higher risk for long-term cardiovascular problems such as phlebitis, thrombophlebitis, pulmonary heart disease, hypotension and atrial fibrillation. 

After Endometrial Cancer, Survivors Need Careful Monitoring for Cardiotoxicity

When patients with high-risk cancer have limited access to registered dieticians, it may be difficult for them to follow through on a nutrition plan set by their healthcare team. However, a recent study of a program launched by the Levine Cancer Institute (LCI) found that telenutrition services can offer a beneficial alternative.

“As we started adding the regional sites, we knew that we weren’t going to be able to physically place a dietician out there because we didn’t have a large enough patient population, but we knew that they had a need,” said Michele Szafranski, MS, RD, CSO, LDN, clinical nutrition manager at LCI said in an interview with 

. Every other Tuesday, Szafranski conducts video conferences with patients who are being treated in one of the Carolinas HealthCare System’s satellite locations.

The telenutrition video conferences are conducted while the patient is at their own doctor’s office and are completely HIPPA-compliant.

“Since we’re doing it doctor’s office to doctor’s office, if I need the doctor to write orders, I could do that immediately,” Szafranski said. “It brings the professionalism up a notch and allows us to do what we haven’t done before.”

Connecting electronically allows oncology-certified dieticians like Szafranski to communicate with patients who may not otherwise be able to receive such services close to home. Conducting the conferences using video may prove to be more useful than phone calls because it allows Szafranski to conduct nutrition-focused physical exams—observing things such as fat pads under patients’ eyes and temporal wasting&mdash;that she would not have been able to do otherwise.

Overall, patients and their healthcare providers reported that they were satisfied with the services and were particularly happy with the quick access to oncology-certified nutrition specialists via virtual conference. The video conference allowed dieticians to assess muscle or fat wasting, the skin, mouth and nails on their patients. In addition, dieticians were able to better coach patients through tube feeding techniques and share screens of written information.

“The patients have been very open to telenutrition because I think they’d rather do that than drive an hour or two to see me in real life,” Szafranski said.

For many of these patients, the only other options besides a long car ride include seeing and paying for a local dietician who may not be oncology certified, or patients may go without the service altogether. The telenutrition conferences are included in the price of being treated at the Carolinas HealthCare System.

“We’re trying to target the highest risk in the cancer population,” said Szafranski, “the people who we could help the most.”

Patients who participated in the study had to have experienced 10% or more involuntary weight loss prior to the start of cancer treatment or were on tube feeding or intravenous nutrition. They also needed to have shown the following for more than 5 days: poor appetite or intake; difficulty chewing or swallowing; nausea or vomiting; mucositis/esophagitis; unresolved chronic constipation or diarrhea, or had progressive weight loss.

Szafranski said that programs like these have potential to be used in centers across the United States. The only consideration, though, is that registered dieticians must be registered in the state where they are seeing patients.

“I absolutely want to grow the program,” Szafranski said. “It does have national potential.”

 Szafranski ML, York B, Eaton T, et al. Telenutrition in oncology: a novel model of care in a geographically diverse network. 

A recent study found that telenutrition services may be beneficial for patients with high-risk cancer. 

Making the Connection: Videoconferencing Delivers Oncology Nutrition Services to Rural Patients

With more than one third of patients with cancer reporting physical dysfunction, there has been a growing need for programs geared toward improving overall physical wellbeing for this population. A group of researchers from the Roswell Park Cancer Institute and the Indiana University School of Medicine conducted a study to see if one particular program —  run by LIVESTRONG and the YMCA – is beneficial.

“It’s a huge need for the cancer survivor population,” Erin L. Ratterman, MS2 at Indiana University School of Medicine and author on the study said in an interview with 

. “We have a growing population of cancer survivors. People are living longer after a cancer diagnosis and we’re all aware that there are long term effects of chemotherapy and radiation. This program is a great way to address the problems of this growing population and get them closer to where they were before cancer.”

The study observed 158 participants who attended 1.5-hour training sessions twice a week for 12 weeks. The sessions, which included group exercise, yoga, meditation and education on healthy eating, were led by YMCA trainers with a LIVESTRONG certification. Functional Assessments were recorded before and after the program.

Data was available for 112 participants, 100 females and 12 males. The majority of them were between the ages of 51 to 64 (48%). Thirty-four percent were over 65, and 19% were under 40 years old. While the majority of the patients had breast cancer (about 52%), there was also a range of other diagnoses, including lymphoma, ovarian cancer, lung cancer, leukemia, uterine cancer and more.

“Most of these cancer survivors have had some kind of surgical or chemotherapy treatment. They have a common background of making it through something so difficult and they all want to improve on their functionality in the end,” Ratterman said.

Similar to other exercise programs, the study explained, the LIVESTRONG and YMCA program improved all measures within the Functional Assessment. These were: upper and lower body strength, flexibility, balance and 6-minute walking test.

Besides from the physical aspect of the program that was beneficial, researchers also noted that the sense of community also promoted socialization — and sticking to their exercise plan. A post-program potluck brunch was hosted at the conclusion of the experience, and more than half of the participants attended.

“There’s accountability that brings you to the gym when you have friends expecting you to be there,” Ratterman explained. “People can encourage you and become accountability partners in the future, not just during the program.”

The program was hosted at a local YMCA, and even after the 12 weeks were over, 75% of the participants continued to go to the YMCA for exercise, which can have long-term benefits that reach far beyond the 12 weeks of the program.

“Promotion of peer support and education on healthy lifestyle behaviors by the LIVESTRONG at the YMCA program may have an impact on long-term adherence to exercise among cancer survivors,” the study reads.

Group exercise programs are beneficial to survivors of cancer, and can offer motivation from peers to continue living a healthy lifestyle.

Group Exercise Provides Benefits to Patients with Cancer

Caregivers have their own set of concerns and worries as their loved one transitions from cancer treatment to survivorship. These needs should be taken into account in the overall survivorship care planning, according to the findings of a recent study presented at the 2017 Cancer Survivorship Symposium.

Researchers at the Johns Hopkins Bloomberg School of Public Health and the Johns Hopkins University School of Medicine recorded discussions with adult survivors of breast, prostate and colorectal cancer, as well as their caregivers to find out their concerns with the transition. This project was part of a larger study about cancer survivorship that is currently enrolling patients.

Half a dozen themes emerged, and while some were shared by both survivors and their caregivers, others were caregiver-specific and unique to that population. The two groups shared the following concerns: the need for information on side effects and follow-up care recommendations, confusion regarding the role each provider plays once treatment is complete, and the need for resources and support to help deal with issues such as physical and emotional distress and living a healthy lifestyle.

Caregivers themselves had some of their own concerns, such as uncertainty about their role as a caregiver, their own mental and emotional health needs and adjusting to the idea of their new role as their loved one enters the realm of survivorship.

“Being in this position is not just a new normal for the patient, but it’s also a new normal for the caregiver,” said Elliott Tolbert, PhD, Research Associate Department of Health, Behavior and Society Bloomberg School of Public Health Johns Hopkins University and author on the study said in an interview with 

Moving forward, the researchers noted that support for caregiver-specific issues should be addressed in the overall survivorship planning process.

“I think that incorporating caregiver needs and support into survivorship as best as the clinician or clinical setting can would be ideal,” Tolbert said. “We’re still working on getting survivorship processes in place for patients, and caregivers should go hand in hand with that process because a lot of time, that caregiver has been right there by the patient through the whole process. Everyone comes out stronger if they have their issues and what they need addressed.”

Based on these findings, Tolbert said that resources will be available for all survivors and their caregivers in the larger, impending trial. However, he also recognized that providing comprehensive care and resources for caregivers of cancer survivors might not by the easiest policy to incorporate in hospital settings across the United States.

“When you think about a hospital, it’s difficult to provide resources for the patients, because you’re focused on the care. The caregiver, who is not the patient, is in a situation where things could fall through the cracks,” Tolbert said, mentioning that clinicians should refer caregivers to outside resources — such as those found online and in the community – if they cannot provide them themselves.

“It’s kind of been like putting the pieces of the puzzle together and putting everyone on the same page—that’s what we’re aiming to do,” he said.

Caregivers of cancer survivors have unique and specific needs as their loved ones with cancer enter into survivorship care.

Survivorship Care Should Consider Caregiver Needs

Deborah K. Mayer, PhD, ANP-BC, recalls the breast cancer patient she counseled about treatment options. “She wanted to know which treatment, a mastectomy or lumpectomy and radiation, would keep her away from home the least amount of time since her husband was on hospice, dying of lung cancer.” Mayer shared with her that the mastectomy would be less time since the daily radiation treatments would require travel and treatment time each day. This is a snapshot of patient-centered care, Mayer says.

Mayer, the Director of Cancer Survivorship for the University of North Carolina Lineberger Comprehensive Cancer Center, also serves as the 2017 chair of ASCO’s Survivorship Committee. At this weekend’s meeting, she has focused on the importance of the survivorship care plan, as well as the role of the primary care provider (PCP) in follow-up care.   

Mayer says that providing the SCP at the end of treatment is insufficient, and that it should be provided as a treatment plan at diagnosis and then filled out as the treatment progresses. She also recognizes that this is probably a pointless fight since getting the plan introduced at the end of treatment has been hard enough. She presently estimates that somewhere around 70% of patients don’t receive a care plan and in too many cases when they do, it’s a piece of paper with little meaning because there was little discussion.

When they sit down with the nurse or oncologist, it is a time to review questions and concerns that may not have been raised during treatment.

“In one instance I had a patient who had numerous side effects that affected her treatment. Peripheral neuropathy and fatigue, both of which she understood were connected to treatment, but she didn’t know whether she could expect the side effects to resolve on their own and if so, how long it would take.” Mayer also says that the discussion helps to normalize what recovery looks like and help them process what they had been through psychologically, which could take a year to resolve.   

For follow up, Mayer says the cancer community is struggling with the roles in follow up for the oncologist and PCP. “We have created a dynamic where the patient wants to be followed by the oncologist; it’s good for provider and patient to have a close connection, but it isn’t sufficient,” Mayer says.

In addition to leaving out the PCP, it can create distrust, which makes it harder for the patient to return for continuation of care in areas not related to cancer, Mayer says. It is important not to diminish the role of the PCP or to think the oncologist is the only one who can do follow up. 

We sit in our own camps and that is not acceptable. It should be that patients are told by their oncologist that they need to go to their PCP for primary care throughout cancer care.   

Patients have multiple comorbid conditions and we are not managing them during treatment.   

Depending on the cancer and the care needed, the transition may be longer or shorter. but there needs to be a gradual transition from oncologist to primary care.   

“We need to improve cancer care to add survivorship,” Mayer says. “And we can’t wait the decades that it usually takes to get this right. We need to be aware that we are delivering care to the best of our ability and moving the system forward. Patients don’t get 'do-overs.’ We get them with every patient we see and we need to make it better each time.”

Deborah K. Mayer discusses the future of survivorship care for patients with cancer.

Expert Urges No Silos in Providing Survivorship Care

There are large gaps in supportive and survivorship care for patients with lung cancer, revealed a new study presented at the 2017 Cancer Survivorship Symposium held January 27-28 in San Diego.

Researchers from Lung Cancer Alliance found that the majority of patients and caregivers did not have values-based discussions with their oncologist, nor did they receive palliative care, survivorship care plans or psychosocial support.

“We want to raise awareness that there are these problems, these conversations need to start happening and health care infrastructure could be changed,” Jennifer King, Ph.D., director of Science and Research at Lung Cancer Alliance and one of the authors on the study, tells 

 in an interview. “This was eye-opening for us of how big the gaps were in some areas. There is certainly a lot that can be done in the lung cancer community.”

An electronic survey was delivered to patients with lung cancer and caregivers, and 820 people responded (471 patients, 349 caregivers). The study states that less than half of patients reported having a conversation about their values and care goals with a treatment team before a treatment plan was determined. Additionally, less than 30 percent of patients reported having a mental health professional, social worker, nurse navigator or palliative care specialist as part of their care team.

Research shows that palliative care can actually help patients with cancer live longer and improve quality of life, this is especially true in patients with lung cancer. A 2010 study published in the 

 found that patients with non-small cell lung cancer, who received palliative care, lived almost two months longer than those who received standard care. 

However, this study found that only 26.9 percent of patients had even discussed palliative care and just over 20 percent reported receiving it.

To help close these gaps, King advises every patient with cancer to become informed and to ask questions during visits to their oncologist’s office.

“We fully believe in empowering patients with as much information as possible,” she says. “We, as an advocacy group, have different materials on educational topics, things you should be asking about, things you should be learning.”

As far as the caregivers who participated in the survey, they had cared for loved ones with advanced cancer, who often did not survive. For patients who did complete treatment and survived more than five years beyond diagnosis, only 22 percent of patients and 15 percent of caregivers reported having a survivorship care plan.

“For survivorship care planning, specifically, we often hear ‘Well, lung cancer has a poor survival rate. Why would you do survivorship care planning?’” King says. “Some of it is the attitude and the stigma around the disease that people sometimes don’t think to include a survivorship care plan.”

King hopes to further research on this by looking into rural communities, and communities where patients are underserved. While Lung Cancer Alliance continues to build patient-centered educational programs around these gaps, she wants to raise awareness within the health care industry.

“The tide is turning for patients with lung cancer in terms of treatment,” she says. “It’s an interesting new day, where there is a lot more hope and a lot more options than just a couple of years ago.”

At the 2017 Cancer Survivorship Symposium, findings from a study were shared which suggested patients with lung cancer do not receive supportive and survivorship care.

Lack of Survivorship Care for Patients with Lung Cancer

There was no significant increase of survivorship care plans (SCPs) given to patients with cancer from 2015 onward, despite calls from the Institute of Medicine (IOM) and the Commission on Cancer (CoC) to deliver one following completion of treatment, according to a new study.

The findings were presented during a poster session at the 2017 Cancer Survivorship Symposium held January 27-28 in San Diego.

A survey was distributed to 312 patients — 66% of whom had breast cancer – through social media platforms. These included Tweet chats, Facebook groups, blogs and targeted emails. The survey was conducted between March and April 2016. The researchers chose to reach cancer-related communities using social media since that is where many patients turn to in order to obtain information and communicate with others for support.

Sixty-three percent (194 patients) had completed treatment, excluding endocrine therapy. Based on this group, researchers found 88.2% (171 patients) did not receive an SCP, while 11.8% (23 patients) did receive one.

The authors on the study noted that a 2005 IOM report resulted in a call to develop survivorship programs for patients that included guidelines for monitoring and maintaining their health. In January 2015, the CoC set a standard requiring the delivery of an SCP to patients at the completion of treatment. However, a survey given at that time, found just over a third of hospital programs felt confident that the requirement could be met.

The findings of this study appear to show this is where institutions are still struggling years later.

A survivorship care plan should be created by a patient’s physician to guide them in their journey after cancer. ASCO offers its own plan that “contains important information about the given treatment, the need for future check-ups and cancer tests, the potential long-term late effects of the treatment you received and ideas for improving your health.”

Interestingly, the survey also identified that a majority (65%) of patients who did not get an SCP felt that one would have been helpful following completion of their treatment. Of the SCPs that were received, most were provided to patients in paper form. Survey results found that 50% of patients would prefer an SCP to be delivered on paper, 41% would prefer it through an online patient portal and 9 percent would prefer email.

Overall, the authors suggested that the CoC may not reach its goals for SCPs based on these findings.

Despite recommendations to do so, distribution of survivorship care plans still has not increased for survivors of cancer, according to a recent study.

Survey Finds Meeting Goals for Survivorship Care Plans Remain Elusive

For many cancer survivors, pain, depression, and fatigue can linger long after treatment ends. In an effort to ease these symptoms in survivors, researchers at Duke University have developed an online, self-care, coping skills curriculum called “Reimagine,” centered on solution-focused thinking about stressors and cognitive reframing.

The program, which has evolved over several years, was found to reduce symptoms of both depression and fatigue, but not pain, in breast cancer survivors when compared with those assigned to usual care. The findings of this randomized controlled trial were presented by Sophia Kustas Smith, MSW, PhD, at the 2017 Cancer Survivorship Symposium held January 27-28 in San Diego.

In her presentation, Smith noted that pain, including that which is treatment induced, is especially prevalent among breast cancer survivors, with an estimated 30% reporting above-average pain even 10 years after treatment.

“Pain rarely occurs alone,” she emphasized. “For example, 1 in 4 survivors from the American Cancer Society study fell into the ‘high symptom’ category for pain, depression, and fatigue.”

Recruiting from the Susan Love Research Foundation Army of Women® volunteer registry, the researchers enrolled 121 breast cancer survivors who had self-reported chronic pain; 89% of the participants were either cured of their cancer or in remission. The mean age of the patients was 56 years, and the mean time since diagnosis was 8 years. The women were evenly randomized to the Reimagine treatment arm or usual care.

Patients in the treatment arm accessed all of the content online, including videos and group meetings, and completed cognitive reframing exercises. “The curriculum teaches two major skillsets,” Smith explained: “Solution-focused thinking about stressors, first identifying patient needs and what’s in their control to get their needs met, and cognitive reframing, identifying the reasons for their choices using better-feeling thoughts.” Reimagine also teaches mind—body exercises, such as guided imagery and meditation.

Outcomes measured at baseline and at 18 weeks post-intervention were pain severity, pain interference, fatigue, and depression. Pain severity and interference were measured with the Brief Pain Inventory. Depression was measured through the Personal Health Questionnaire Depression Scale (PHQ-8), and fatigue through the Functional Assessment of Chronic Illness Therapy — Fatigue (FACIT-Fatigue). Additionally, participants were asked to report on program satisfaction.

A total of 34 treatment-arm participants and 52 usual care controls were included in the analysis. Although the researchers found no significant difference between the 2 arms when measuring either pain severity or pain interference, there was a difference in depression and fatigue. “We found a greater reduction in depression and improvement in fatigue symptoms in the treatment versus usual care arm,” explained Smith, an associate professor at the Duke University School of Nursing.

“All participants in the treatment arm endorsed the effectiveness of the videos in teaching the skills,” Smith reported. Additionally, patients who used Reimagine were satisfied with the program, with 94% saying that they would recommend Reimagine to others, and 85% reporting that they felt more resilient at study completion.

Smith cautioned that although partnering with a patient group like the Army of Women helped to drive recruitment, this approach also presented limitations, as the women were mainly college-educated and white.

Compared with the usual care controls, more women dropped out in the treatment arm; many women cited either being too busy or too sick to continue with the trial as the reason, and this is another study limitation cited by Smith. Based on these early findings, the investigators recommend further research on the intervention using larger and more diverse samples.

 Smith SK, MacDermott K, Amarasekara S. A randomized control trial (RCT) of an online, symptom self-management curriculum (Reimagine) among breast cancer survivors. 

Online, self-care, coping skills curriculum "Reimagine" helped relieve depression and fatigue in breast cancer survivors.

Cancer Survivorship Symposium