Qualifying patients can now receive their chemotherapy treatments at home, thanks to the Cancer Treatment Centers of America’s pilot program, Oncology Clinic at Home.

Chevon Rariy, MD, medical director of endocrinology at Cancer Treatment Centers of America (CTCA) Chicago, and the Telehealth Program director for the CTCA, recently spoke to Targeted Oncology

, sister publication of Oncology Nursing News

, about patient eligibility criteria, how the nurse fosters relations between the oncologist and patient, and how telehealth was well positioned to make cancer care more accessible.She shared that “there’s no magic tool to increase access to oncology care, but telehealth is a tool which can be leveraged.”

The Oncology Clinic at Home program, which is currently based in Atlanta, Georgia, delivers oncology care to patients so long as they are in good enough health to not require a hospital visit, can tolerate their medication in an in-patient setting, have reliable internet service, own a mobile device such as a laptop or mobile, and have insurance policies which cover the treatments. The program currently treats breast, lung, prostate, head and neck, colorectal and some genitourinary cancers.

Videos

Chevon Rariy, MD, outlines patient eligibility criteria, and the alterations to the nurse patient relationship, as CTCA launches the novel Oncology Clinic at Home Program. 

Cancer Care More Accessible Thanks to Launch of Telehealth and In-Home Infusion programs

Systematic changes at the institutional level have the potential to decrease disparities in cancer incidence, care, and survival within Hispanic and Latinx communities. The incorporation of 

, as well as offering transportation assistance, meal vouchers, and parking validation, can significantly increase clinical trial participation within these communities.

Promotoras are bilingual, lay navigators within the community who have been trained by the institution on cancer screening and information. Their job is to help distribute clinical trial information within the community and help to establish trust in the health care system.

Rodolfo Gutierrez, MD, hematology and oncology specialist with Providence Saint John's Health Center Cedars-Sinai Medical Center, The Angeles Clinic, recently spoke to OncLive®, a sister publication of Oncology Nursing News®, about how 

 have positively affected 1 communities’ trial participation, as well as the importance of maintaining diversity across clinical trials.

Gutierrez works on many phase 1 trials at the Angeles Clinic and Research Institute that assess novel immunotherapies. He has recognized a lack of Latinx participation in these trials, which is an important issue because “if we don't have diverse participation in clinical trials, our results and outcomes are going to be very difficult to be generalizable to the entire population,” Gutierrez said.

There are multiple barriers that curb participation. Some obstacles include a lack of insurance or difficulty finding transportation to the university or cancer center with available trials.

Bias can unfortunately contribute to trial participation barriers as well. Studies have identified that biases from providers, researchers, and clinical research coordinators can result in the dismissal, or exclusion, of patients of lower socioeconomic status (such as the Latinx community members) for clinical trial participation, explained Gutierrez. Preemptively dismissing candidates is harmful to these studies because the inclusion of diverse patients helps to enrich and enhance the study results, he continued.

Furthermore, certain cancers, such as breast cancer, are more prevalent or are associated with worse outcomes within the Latinx community.

“For a variety of reasons, we are seeing patients being diagnosed with [cervical cancer at] more advanced stages, having worse survival, and higher incidence. Some of this has to do with education, background, and risk of certain infections for [the disease] like the human papillomavirus [HPV], but some of it is just access to care. Cervical cancer is a great example of this. A big reason why a disparity [exists] between Latina and Hispanic women and White non-Hispanic women [has to do with] access to screening. Now that we have a vaccine available for HPV, [it means that] access and utilization of these vaccines are a big part of why we have this discrepancy.”

One notable study evaluated a Latinx community in Texas and assessed their relationship with hematologic malignancies, specifically acute lymphoblastic leukemia [ALL], which is more prevalent within the Latinx community. Gutierrezobserved that, within the study, patients who lived closer to the Mexico/Texas border had worse overall survival (OS) outcomes than throughout other populations in Texas.

“If you really think about that,” he said, “it's probably because they don't have access to these cancer centers where clinical trials are available or higher-resource medical centers. The mere fact that where someone lives can have an effect on their cancer outcome [is important to be aware of].”

Health care providers can help minimize the gap through a variety of implementations. At Gutierrez’s own practice, the use of 

 has had a significant positive impact on community participation.

In addition, a recent study showed that the implementation of transportation assistance (30%), meal vouchers (21%), and parking validation (40%) significantly increased clinical trial participation within a Hispanic community local to the Wake Forest School of Medicine.1 Within 1 year, participation increased from 20% to 34%. This is a “significant jump [because of a] fairly simple [intervention]. Every cancer institute or every institute that has clinical trials needs to take a deep look into some of the easy changes that can be made to increase participation,” he said.

The Cedars-Sinai Medical Center has multiple task forces to promote engagement across Latinx, Korean American, and LGBTQ+ communities. Gutierrez is a member of the Hispanic task force. These forces seek to decrease differences in OS, incidence, and clinical trial participation.

has been a particularly positive experience. “I have participated in these training sessions with the promotoras and they had many questions that I was happy to answer,” he shared. “If we can educate them, this [knowledge] will be disseminated into the community in a trustworthy way. There is a lot of distrust in the medical system as a whole in certain groups—definitely in the African American and Latinx communities. Having these point people, mostly women, to serve as a starting off point has been helpful.”

The Future of Cancer Care in Latinx Communities

Future studies need to address the mutations besides 

that are more common in the Latinx community. There also needs to be a focus on how certain cancers, such as gastric cancer, differ biologically across the separate communities.

The University of California Davis Cancer Center is currently bringing light to some of the genetic differences in tumor biology in different subgroups. Medical professionals are optimistic that this knowledge can help with combatting racial disparities. Gutierrez said, “[the cancer space as a whole is] focusing more on precision medicine. By understanding [disease] biology better, our treatment options will grow. Hopefully, as a result, outcomes will also improve.”

Strom C, Weaver KE, Ruiz J, et al. Abstract A20: Hispanic patient navigation: an intervention to increase clinical trial participation. 

. 2018;27(suppl 7):A20. doi:10.1158/1538-7755.DISP17-A20

A version of this article was originally published on OncLive as “Examining Interventions to Increase Participation of Hispanic/Latinx Populations to Clinical Trials for Cancers”

Articles

While disparities exist in screening accessibility among the Hispanic/Latinx communities, the implementation of interventions have shown promising results in increased clinical trial participation. 

Overcoming Cancer Screening Discrepancies in the Latinx/Hispanic Communities

The implementation of nurse breast navigators resulted in trends towards less frequent refusal of care by patients diagnosed or receiving treatment, according to a poster published at the 2020 San Antonio Breast Cancer Symposium (SABCS).

Researchers found that lower refusal rates of chemotherapy and hormonal therapy were the areas of treatment most effected by the implementation of nurse breast navigation.

The team of researchers compiled a tumor registry comprised of patients diagnosed or treated at a minimum of 1 time at the Grady Cancer Center for Excellence. Then, they conducted a tumor registry audit of refusal of care as coded by “patient or patient guardian refused care” for 2-time intervals of pre- (2016-2017) and post-nurse navigation (2018-2019).

Patients who were diagnosed at the Grady Cancer Center for Excellence but were treated elsewhere (out-migration of breast cancer patients) was also an audited group for the same time intervals.

In the pre-nurse navigation period, a total of 325 patients with breast cancer were analyzed with 58 (17.8%) refusing care. During the post-nurse navigation period, 376 patients were seen with 50 (13.2%) refusing care (P = 0.128).

The overall refusal of care rates decreased from 17.8% during the pre-nurse navigation period to 13.2% during the post-nurse navigation period. The out-migration rates of patients with breast cancer during both time periods was 3.6%.

“While there was no difference in “out-migration” to other cancer centers identified during this time interval, the number of patients leaving the system remains low,” wrote the researchers in their study’s presentation poster for SABCS 2020.

During the pre-nurse navigation period, when breaking down the data according to treatment refusal by the type of recommended care, 29 patients refused chemotherapy, 18 refused hormonal therapy, 0 refused immunotherapy, 22 refused radiation therapy, and 10 refused surgery.

For the post-nurse navigation period, 18 patients refused chemotherapy, 12 refused hormonal therapy, 2 refused immunotherapy, 24 refused radiation therapy, and 12 refused surgery. It’s noted in the poster that the rates of refusal for different treatment types varied between the 2 different time periods analyzed.

The researchers used Grady Memorial Hospital in Atlanta, Georgia as their safety net hospital, and the Georgia Cancer Center for Excellence at Grady received a Merck Foundation grant in which it introduced a nurse navigator to the breast cancer program on January 1, 2018.

Grady Memorial Hospital treats a diverse and medically underserved population, with a reported 28% of patients who are uninsured. The grant was awarded to “improving care for vulnerable cancer patients.”

The nurse navigators meet with all of the newly diagnosed breast cancer patients during clinic. More, they track the progression of care for these patients, occasionally intervening for timeliness of work-up and for treatment.

“We plan to continue to track our navigated patients and collect patient satisfaction information with navigation as a future initiative,” wrote the researchers.

Rehr C, Coples S, Wang Z, et al. The Impact of Nurse Navigation on Adherence to Care for Patients Treated for Breast Cancer in a Safety Net Hospital. Presented at: 2020 San Antonio Breast Cancer Symposium; December 8-11, 2020; Virtual. Poster PS7-58.

A poster presented at the 2020 San Antonio Breast Cancer Symposium found a trend towards less frequent care refusal when a safety net hospital introduced nurse breast navigators.
 

Nurse Navigation in Safety Net Hospital Resulted in Less Frequent Care Refusal for Patients with Breast Cancer

A randomized trial of a hospice video educational tool for patients with advanced cancer, as well as their caregivers, found that those who were assigned to watch the video appeared to be more informed about hospice care and reported more favorable perceptions of hospice.

In addition, having watched the video was associated with an increase in hospice use and hospice length-of-stay.

“These findings are particularly relevant given the suboptimal use of hospice care noted among patients with advanced cancer,” the authors wrote.

The single-site randomized trial, published in 

, evaluated the use of the video tool compared with a verbal description of hospice in 150 hospitalized patients with advanced cancer, along with their caregivers. However, patients without a caregiver remained eligible. In total, 75 patients and 18 caregivers viewed a 6-minute video depicting hospice, while 75 patients and 26 caregivers received a verbal description identical to the video narrative.

The primary outcome was patient preference for hospice. Key secondary outcomes included patient and/or caregiver knowledge and perceptions of hospice, as well as hospice use.

Importantly, following the video or verbal intervention, there was no significant difference noted concerning patients' preferences for hospice (86.7% vs 82.7%; 

However, patients included in the video group reported a greater understanding of hospice (9.0 vs 8.4; 

 = 0.049) and were less likely to affirm that hospice is only about death (6.7% vs 21.6%; 

 = 0.010). Moreover, of the now deceased patients, those who were assigned to the video intervention were more likely to have used hospice (85.2% vs 63.6%; 

 = 0.01) and to have had a longer hospice length of stay (median, 12 days vs 3 days; 

“It remains unclear how the hospice video led to substantial differences in rates of hospice use without significantly impacting patients’ preferences for hospice care,” the authors wrote. “Future studies should examine the impact of the hospice video on the frequency and timing of hospice discussions as a potential mediator for higher use of hospice.”

With regard to the caregivers, those who were assigned to watch the video were more likely to prefer hospice for their loved ones (94.4% vs 65.4%; 

 = 0.031), reported greater familiarity with hospice care (9.7% vs 8.0%; 

 = 0.001), and were less likely to affirm that hospice is only about death (0.0% vs 23.1%; 

 = 0.066). Researchers suggested that because of the critical role caregivers may play in decision making regarding hospice, future studies of hospice educational tools should enhance efforts to enroll caregivers.

“Although prior studies have focused primarily on the early involvement of palliative care and other interventions targeting physicians and health care systems to increase hospice use, the findings of the current study have highlighted the value of a simple and inexpensive video to educate patients and families about hospice,” the authors wrote. “A hospice video represents a potentially scalable intervention targeting the informational needs of patients with advanced cancer and their caregivers to overcome barriers to hospice use.”

Of note, the research assistants who were collecting participant-reported outcomes were not blinded to the randomization, which may have introduced bias. Even further, some patients refused to participate in the study because they did not want to discuss hospice, which may have introduced a selection bias. Additionally, the investigators lacked data with which to compare characteristics between participants versus nonparticipants.

“Given the potential for this scalable and low-cost intervention to improve hospice use, and thereby improve the quality of EOL care and reduce EOL care costs, a future multisite trial to confirm the efficacy and generalizability of this intervention across care settings is warranted,” the authors concluded.

El-Jawahri A, Traeger L, Greer JA, et al. Randomized Trial of a Hospice Video Educational Tool for Patients With Advanced Cancer and Their Caregivers. 

Though the video did not have a statistically significant impact, those assigned to watch the video appeared to be more informed about hospice care and reported more favorable perceptions of hospice.

Educational Tool Assists Patients, Caregivers of Cancer in Learning About Hospice

The use of video conference technology significantly reduced anxiety and stress among individuals who provide care for an individual with cancer and live more than one hour away from the patient, according to data from a randomized controlled trial presented during a 2020 ASCO Virtual Scientific Program press briefing.

“Approximately 20% of all caregivers live more than an hour away from patients with cancer and approximately 30% of those distance caregivers are actually the sole caregiver,” Howard A. Burris III, MD, FACP, FASCO, president of the American Society for Clinical Oncology, said during the briefing.

Additionally, Burris noted that these results are even more relevant as the spread of the new coronavirus has affected the way patients and their caregivers receive care and information about cancer diagnoses and treatment.

“The coronavirus pandemic makes these findings particularly important because, currently, no caregivers are allowed to accompany cancer patients to their visits, essentially making all caregivers distance caregivers,” Burris said.

To test the effectiveness of an intervention aimed at reducing anxiety and distress in distance caregivers who support patients with cancer, 441 caregivers were randomized to one of three intervention arms. Caregivers in the first arm met with an advanced practice nurse or social worker through a video platform once a month for four months, participated in patient-oncologist visits via videoconference and had access to a website offering information specifically designed for distance caregivers. Caregivers in the second arm had access to the patient-oncologist visits and the website. And caregivers in the third arm, referred to as the control arm, only had access to the website.

Caregivers in the study were, on average, middle-aged, female, Caucasian, employed and the child of the patient.

To assess changes in distress and anxiety levels before and after the interventions, researchers had caregivers complete a questionnaire before the study began and at the end of the 4-month intervention.

According to measurements using the National Comprehensive Cancer Network Distress Thermometer, 24.8% of caregivers within the first arm experienced an improvement in distress score vs. 19.8% in the second arm and 18% in the third arm.

Using the Patient-Reported Outcomes Measurement Information System, 19.2% of caregivers within the first arm experienced an improvement in anxiety score vs. 17.3% in the second arm and 13.1% in the third arm.

The average office visit time for those in the first group was 19.6 minutes vs. 21.3 minutes in the second group and 17.8 in the third group, demonstrating that videoconferencing added two to four minutes to appointments but reduced the amount of time doctors spent afterwards answering questions from family members, said lead study author Sara L. Douglas, PhD, RN, The Gertrude Perkins Oliva Professor in Oncology Nursing at the Frances Payne Bolton School of Nursing in Cleveland. Additionally, on a satisfaction scale of 1-10 for videoconferencing, oncologists reported a score of 8, while patients had a score of 9.1 and caregivers reported a score of 9.3.

“Oncologists … should know that asking patients if they have a distance caregiver and then encouraging the distance caregiver to join office visits using video conference technology benefits not only the distance caregiver but the patient as well, and did not add a significant amount of time to the office visit,” Douglas said during a pre-recorded presentation.

Douglas noted that although the arm that offered all the forms of intervention had the best results, it is not always feasible to host every component of the intervention and, in instances where that is not feasible, patient-oncologist video conference visits show some benefit.

“While the full intervention yielded the best results for distance caregivers, we recognize that not all healthcare systems have the resources to provide individualized coaching sessions to distance caregivers,” she said.

Douglas SL. Videoconference intervention significantly reduces anxiety and distress among remote caregivers of people with cancer. Presented at: 2020 ASCO Virtual Scientific Program; May 12, 2020. Abstract 12123.

This article originally appeared on OncLive

Video Conference Visits Effective in Reducing Stress, Anxiety in Caregivers for Patients with Cancer

The COVID-19 Pandemic has increased the use of video conference technology, but this technology has a lasting impact for caregivers in reducing their anxiety when it comes to continuing visits with patients with cancer.
 

Diversity, inclusion, and equity are values central to advancing the mission of the American Association of Colleges of Nursing (AACN); an organization recognized as the collective voice of academic nursing.

We hear these terms all of the time; however, what do they really mean? To eliminate any bias per se, let us review the literature to expound on the value of these concepts as it pertains to professional organizations, especially where people hold leadership positions.

While this topic can be viewed as controversial by some; it is important to address to ensure that everyone’s opinion is recognized. Inclusion provides support to obtaining a better understanding of one’s personal and social values; this can reduce bias, discrimination, and prejudice.

However, inclusivity does not mean conforming to the social norm of the majority, it means that someone might be a little different, but you accept that and meet them where they are.

Diversity embraces a wide range of variation; factors such as, age, gender identity, race, ethnicity, culture, religion, sexual orientation, disability, language, or socioeconomic status are just a few aspects of the term diversity.

We have all heard the term, “having skin in the game,” well this is equity, the ability to recognize the differences in the resources or knowledge needed to allow individuals to lend their full participation.

In order for the nursing profession to continue to evolve, change is needed; we can all make a start by embedding these concepts into our minds and giving deliberate attention to everything that we do. Leadership sustainability includes every component of diversity, it is imperative that leaders who are serving today be appropriately prepared, and that they mirror the behaviors that they want their followers to demonstrate.

These are all interpersonal concepts that require cultural competence and respect being paramount during assimilation to continue to advance the nursing profession. 

New perspectives, new faces of leadership, new leadership styles, all can create new opportunities with more voices being heard.

Having all stakeholders involved can reduce assumptions, challenge opinions, widen perspectives, and encourage socialization across all groups. This can result in innovation and overall improvement in the foundation of the nursing profession, which will allow nurses to treat a wider range of patients more effectively.

AACN position statement on diversity, inclusion, & equity in academic nursing (2017). Journal of Professional Nursing, 33;173—174.

Woody, R. (2017). Expanding diversity: Noncategorical inclusion and equity. 

New perspectives, new faces of leadership, new leadership styles, all can create new opportunities with more voices being heard.
 

Diversity and Inclusion Should be Valued in Leadership Roles

As palliative care becomes a bigger part of a patient’s treatment journey, oncology nurses need to understand the realities and benefits of palliative care and help make their patients understand these as well.

Which is why in this month’s episode of the “

 Talks Cancer Podcast: Nursing Edition,” we had the chance to talk with 

, director of the Division of Nursing Research and Education at City of Hope, and discuss the important differences between palliative care and end of life care and how nurses can advocate for proper palliative care for their patients.

In this month’s episode of the "CURE Talks Cancer Podcast: Nursing Edition," we had the chance to talk with Betty Ferrell, FAACN, FCPN, MA, PhD, director of the Division of Nursing Research and Education at City of Hope, and discuss the important differences between palliative care and end of life care.

Using Education to Understand the Realities of Palliative Care

Treating patients with cancer is more than just providing a patient with their medication. It’s also vital to address a 

 and connect them to resources for support, which oncology nurses are leading the way on, according to Sally Werner, RN, BSN, MSHA.

Oncology nurses can provide a patient with a trained eye on what support measures that may work best for them, including support groups. Werner, the senior vice president for affiliate relations at the Cancer Support Community headquarters, had the chance to sit down with 

 and discuss why oncology nurses are referring patients to support groups and how they can help patients in ways an oncology nurse might not have time for.

I think your nurses are your first line of defense when it comes to your psychosocial care, and a lot of times an oncology nurse can help break down that barrier and encourage patients to find a support group. I think that oncology nurses are in a unique position to know what's available in their own community and what resources are out there [for patients].

In today's day and age, an oncology nurse doesn't have nearly enough time at the bedside as they would like to have whether it's at the infusion center, the doctor's office, the hospital, you name it, they don't get to spend the amount of time with patients that they want to. So, they really like to have some confidence in their community resources and have some other tools in their toolkit to share with patients and family members. Most of us, me included being an oncology nurse, really take the time to know what's available and where to refer patients to.

Oncology nurses are the first line of defense when it comes to a patient's psychosocial needs, but they don't often have the time to directly attend to them. Which is where support groups can come in to help.

Referring Patients to the Right Support Group

A recent study in the American Cancer Society Journal confirmed that “cancer survivors appear to have a high prevalence of chronic pain, which is associated with worse mental, functional and employment outcomes.”

Through years of serving as a surgical nurse and patient advocate who talks to cancer survivors, I have seen this tragic reality up close.

My organization, The Mesothelioma Center, specializes in helping people diagnosed with 

, a rare form of cancer that often constricts the lungs and invades the chest wall. Because of spinal nerves being closely intertwined where this type of cancer presents, it is known to be very painful for patients.

Add to that a harsh reaction to chemotherapy or a long recovery from surgery, and it is easy to understand that pain management is not an afterthought in cancer care but is one of the most vital types of treatment that cancer patients need.

Unfortunately, policy restrictions have created a climate where many patients trying to manage debilitating pain feel left behind. The examples of opioids and medical marijuana illustrate this problem well.

Opioids and Medical Marijuana Have Uncertain Status in US

Not so long ago, our nation’s authorities assured us that prescription opioids were respectable remedies, whereas medical marijuana was merely a party drug masquerading as medicine.

Now the pendulum is swinging the opposite way.

Consumers and lawmakers have filed legal actions against pharmaceutical giants, alleging their aggressive opioid marketing has contributed to the national drug abuse epidemic. Meanwhile, medical marijuana is now legal in 33 states.

I’m glad to see new research dispelling old myths about opioids and marijuana. But I worry that without rational policy reform, fresh misconceptions will sink in and continue to make life more painful for cancer patients. Health care providers need improved guidelines for opioid prescribing, as well as the federal government’s go-ahead to conduct research on medical marijuana.

When it comes to opioids — even with their considerable risks of addiction and overdose &mdash; these drugs remain an essential resource for cancer survivors.

Powerful opioid drugs, such as morphine, oxycodone, and fentanyl, can provide life-changing benefits when used appropriately. They should not be the first thing a patient is prescribed, but they should certainly be available as an option of last resort.

I recall one gentleman’s case that shows this nuance perfectly. He was one of the lucky ones whose cancer went into remission after surgery, but it came at the cost of nerve damage that caused him chronic, debilitating pain. He struggled with post-surgery pain management for years, until finally switching to fentanyl. Fentanyl has earned a grim association with thousands of drug overdose deaths. But at low, controlled doses this drug can also allow cancer survivors to lead relatively normal lives when other options for pain relief have failed them.

A tragic consequence of the nationwide crackdown on fentanyl is that many cancer survivors with a legitimate need have 

 The lesson here is that solving the opioid epidemic is not as simple as forcing our nation to quit drugs cold turkey.

Descheduling Medical Marijuana Will Allow the Research Data Doctors Need

Many experts have pointed to medical marijuana as a potentially safer alternative to opioid pain management. Decades of research have suggested that medical marijuana can help with cancer symptoms, treatment side effects and related conditions such as anxiety and insomnia.

More research needs to be done on the risks and side effects of medical marijuana, but there is a broad consensus that cannabinoids are not as addictive or life-threatening as opioids.

Rather, the rise of medical marijuana presents a different type of hazard: misinformation. People with terminal cancers are particularly vulnerable to buying into claims of miracle cures, and a quick internet search will show you that cannabis plant derivatives have become the folk cure-all of our time.

As with opioids, this issue is not black and white. In fact, my colleagues and I have heard several firsthand accounts from cancer survivors who were certain that medical marijuana products helped them control their pain and increase their quality of life.

The cancer treatment community needs the federal government to deschedule cannabis from the Schedule 1 category, which would remove marijuana from the federal controlled substances list in the Controlled Substances Act. When that happens, doctors will be able to run proper large-scale clinical trials for medical marijuana. If doctors could legally study the medicinal uses of cannabis, then they could determine how to integrate cannabinoids into cancer treatment plans and use medical marijuana to manage pain and reduce the number of opioid prescriptions given out.

Policymakers Must Act to Improve Pain Management

The American Cancer Society Journal article emphasizes that “screening and management of chronic pain should be addressed by policymakers to improve cancer survivorship care.”

Oncology nurses can play a vital role in screening for chronic pain, but all too often, medical professionals do not have a full toolkit for pain management. The controversies around opioids and medical marijuana in the U.S. today are holding back effective pain management for cancer patients.

I believe our country is taking steps in the right direction by reigning in our system’s dependence on opioids and increasing access to medical marijuana. But we still do not have enough leadership from policymakers on these issues.

Legislators and health care system administrators must reassess the role of opioids and medical marijuana with a cool head, an open mind, and a critical eye to ensure cancer patients get the care they need.

 Sanford NN, Sher DJ, Butler SS, et al. Prevalence of chronic pain among cancer survivors in the United States, 2010&#8208;2017. 

Hoffman J, Walsh MW. Purdue Pharma, Maker of OxyContin, Files for Bankruptcy. 

. https://www.nytimes.com/2019/09/15/health/purdue-pharma-bankruptcy-opioids-settlement.html. Published September 17, 2019. Accessed October 23, 2019.

New Data: Some Measures Meant to Address Opioid Abuse Are Having Adverse Impact on Access to Legitimate Pain Care For Patients. American Cancer Society Cancer Action Network. https://www.fightcancer.org/releases/new-data-some-measures-meant-address-opioid-abuse-are-having-adverse-impact-access. Published October 10, 2019. Accessed October 23, 2019.

Achenbach J, Bernstein L. Opioid crackdown forces pain patients to taper off drugs they say they need. 

. https://www.washingtonpost.com/health/opioid-crackdown-forces-pain-patients-to-taper-off-drugs-they-say-they-need/2019/09/10/3920f220-c8da-11e9-a4f3-c081a126de70_story.html. Published September 10, 2019. Accessed October 23, 2019.

Grinspoon P. Access to medical marijuana reduces opioid prescriptions. Harvard Health Blog. https://www.health.harvard.edu/blog/access-to-medical-marijuana-reduces-opioid-prescriptions-2018050914509. Published June 25, 2019. Accessed October 23, 2019.

Patients with cancer are faced with chronic pain that nurses often cannot manage properly due to outdated restrictions and practices.

Chronic Pain and Policy Restrictions: Controversies Holding Back Effective Pain Management

Caregiving for a person with cancer, while they go through chemotherapy and radiation, presents numerous challenges. However, when a person with cancer is given the treatment option of stem cell transplant, caregiving becomes more complex and challenging. Stem cell transplants impact not only the person with cancer but their loved ones as well, who are required to be more involved throughout the transplant process.

Perhaps no practice on the medical team knows more than nurses that the treatment and recovery are complex and put extreme social strain on patients and caregivers. About 20-30% of people with cancer will relapse after a stem cell transplant. In addition, 30% of people with cancer will have lingering treatment-related complications such as Graft vs. Host Disease.

Due to the significant morbidity and mortality, caregivers experience high-stress levels related to the physical and emotional care that the person with cancer needs before, during and after the transplant procedure. Similarly, most caregivers are new at caregiving through a complex treatment such as a stem cell transplant. This may leave caregivers unprepared for the toll it takes on them emotionally and physically. 

Additionally, caregivers may feel responsible for the outcome of the transplant. Studies show how well the person with cancer does in the treatment determines how the caregiver will respond to being a caregiver. If the transplant recipient has complications and side effects that are not able to be managed, caregivers may feel especially strained which can lead to an increase of frustration, anxiety, and depression.

The caregiver’s new role can make them feel as if their whole world has been turned upside down.  For example, instead of working full time at home or a job, caregivers are now required to spend long periods of time with their loved one, assisting them at doctor appointments, preparing food and helping to manage side effects of the transplant process. Most caregivers have other responsibilities as well such as helping care for other family members. Although caregivers are willing to help their loved ones and are willing to be involved, it’s a lifestyle change that can be overwhelming and unfamiliar.

With the increased amount of stress, caregivers sometimes become hesitant to seek help for themselves, feeling they do not want to distract the medical team from the needs of the patient. Many hospitals use the Hospital Anxiety and Depression Scale (HADS) to measure the patient’s psychological stress, which is effective in detecting depression, anxiety, and distress. However, there is no testing to screen distress in caregivers. Findings suggest that distress can increase when there are practical or unexpected problems throughout the journey of a stem cell transplant. Currently, the experience of the patient is routinely assessed, but there is no formal approach at this time to address concerns of caregivers, physically or emotionally. 

Some concerns caregivers have include managing their own emotional and physical stress, finding time for themselves and balancing work and family responsibilities. Many caregivers are responsible for juggling multiple roles all at once as their loved one begins a transplant. For example, a female may become a caregiver, spouse, and mother. 

Because of the intimate nature of transplants, nurses meet families through the treatment process and are in a perfect position to recognize the multiple stressors playing out on caregivers. For example, federally mandated Family and Medical Leave (FMLA) covers only 12 weeks of unpaid leave, and transplant patients can take up to a year or longer to recover from the procedure. 

Even with 12 weeks of protected leave, caregivers often need many more weeks to continue to care for their loved ones. 

 Nurses can refer caregivers to other team members such as social workers, patient navigators, behavioral health and billing specialists for help locating financial resources throughout the transplant and recovery process.

It is important for nurses to recognize the needs of caregivers during and post-treatment because, without support, many caregivers may burn out, which can lead to their own health problems, and put the health of the person with cancer at risk. Reminding caregivers of the many and diverse professionals in the medical team and their roles who can help them with issues such as dividing caregiving responsibilities using an app like 

, finding resources and getting emotional support from organizations such as Cancer

, locating financial and medical supply resources and other issues as they arise.  

As medical providers, nurses are first-hand witnesses to the struggles of caregiving. Most importantly, checking in with caregivers to get a better sense of how they are doing can be one of the most helpful interventions. Caregivers play a critical role in the transplant process and, even more importantly, in the patient’s life and recovery.   

Eldredge DH, Nail LM, Maziarz RT, et al. Explaining family caregiver role strain following autologous blood and marrow transplantation. J Psychosoc Oncol 2006;24:53-74

. Gaston-Johansson F, Lachica EM, Fall-Dickson JM, et al.Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncol Nurs Forum2004;31:1161-1169

Cooke, L., Gemmill, R., Kravits, K., & Grant, M. (2009). Psychological Issues of Stem Cell Transplant. Seminars in Oncology Nursing, 25(2), 139—150. doi: 10.1016/j.soncn.2009.0008

Bevans, M., Wehrlen, L., Prachenko, O., Soeken, K., Zabora, J., & Wallen, G. R. (2011). Distress screening in allogeneic hematopoietic stem cell (HSCT) caregivers and patients. Psycho-Oncology, 20(6), 615—622. doi: 10.1002/pon.1906

Family and Medical Leave (FMLA). (n.d.). Retrieved October 10, 2019, from https://www.dol.gov/general/topic/benefits-leave/fmla.

Any patient with cancer needs a caregiver through the treatment journey, but it's even more vital for patients with cancer undergoing the stem cell transplant process.

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