Oncology Nurse Advisor July/August 2019 by Haymarket Media

www.OncologyNurseAdvisor.com

July/August 2019

ADVERSE-EFFECT MANAGEMENT FEATURE

Culturally Sensitive Care for the Transgender Community

FROM CANCERCARE

BIS Aids Early Detection of Lymphedema After Lymph Node Dissection

Body Image and Self-Esteem in the Cancer Patient

RADIATION & YOUR PATIENT

Administering Lutetium LU 177 Dotatate to Patients With GEP-NETs Bioimpedance spectroscopy (inset) detects increasing fluid accumulation before signs of lymphedema are visible, leading to early preventive measures.

COMMUNICATION CHALLENGES

Understanding Noncompliance

THE TOTAL PATIENT

Support, Education, and Advocacy Program for Women With Metastatic Breast Cancer

ASK A PHARMACIST

PRSRT STD US POSTAGE PAID PONTIAC IL PERMIT #60

Biologic Naming; Managing Taste Changes

PUBLISHING STAFF

EDITORIAL BOARD

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Eucharia Borden, MSW, LCSW, OSW-C Lankenau Medical Center Wynnewood, Pennsylvania

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Manager, Multi-channel business development, Haymarket Oncology Marc A. DiBartolomeo (609) 417-0628 marc.dibartolomeo@ haymarketmedia.com

Ann J. Brady, MSN, RN-BC Huntington Cancer Center Pasadena, California

Associate account manager Kate O’Shea (646) 638-6028 kate.oshea@haymarketmedia.com

Jiajoyce R. Conway, DNP, CRNP, AOCNP Cancer Care Associates of York York, Pennsylvania

Oncology writer Susan Moench, PhD, PA-C Contributing writer Bette Weinstein Kaplan Group creative director, Haymarket Medical Jennifer Dvoretz Graphic designer Vivian Chang Production editor Kim Daigneau

Managing editor, Haymarket Oncology Lauren Burke VP, Content; Medical Communications Kathleen Walsh Tulley

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Haymarket Media Inc Sales and Editorial offices 275 7th Avenue, 10th Floor, New York, NY 10001; (646) 638-6000 Subscriptions: www.OncologyNurseAdvisor.com/freesub Reprints: https://info.wrightsmedia.com/licensing-reprints-request Permissions: www.copyright.com Unless otherwise indicated, persons appearing in photographs are not the actual individuals mentioned in the articles. They appear for illustrative purposes only.

Oncology Nurse Advisor (ISSN 2154-350X), July/August 2019, Volume 10, Number 4. Published 6 times annually by Haymarket Media Inc, 275 7th Avenue, 10th Floor, New York, NY 10001. For Advertising Sales & Editorial, call (646) 638-6000 (M-F, 9am-5pm, ET). Postmaster: Send changes of address to Oncology Nurse Advisor, P.O. Box 316, Congers, NY 10920. Copyright © 2019. All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means electronic or mechanical, including photocopy, recording, or any information storage and retrieval system, without permission in writing from the publisher.

Marianne Davies, DNP, ACNP, AOCNP Smilow Cancer Center @ Yale New Haven New Haven, Connecticut Frank dela Rama, RN, MS, AOCNS Palo Alto Medical Foundation Palo Alto, California Donald R. Fleming, MD Cancer Care Center, Davis Memorial Hospital Elkins, West Virginia Leah A. Scaramuzzo, MSN, RN-BC, AOCN Kalispell Regional Healthcare Kalispell, Montana Lisa A. Thompson, PharmD, BCOP Kaiser Permanente Colorado Rosemarie A. Tucci, RN, MSN, AOCN Lankenau Hospital Wynnewood, Pennsylvania Kara M. L. Yannotti, MMH, BSN, RN, CCRP John Theurer Cancer Center at Hackensack University Medical Center Hackensack, New Jersey

2 ONCOLOGY NURSE ADVISOR • JULY/AUGUST 2019 • www.OncologyNurseAdvisor.com

CONTENTS 5

July/August 2019

IN THE NEWS • RT Consent Forms Exceed Readability Levels • Standardizing Prescriptions Reduces Opioids Dispensed With No Impact on Pain Control • Multiple Factors Lead to Delayed Receipt of Oral Anticancer Drugs • Clinical Pathway Program Promotes Clinical Trial Enrollment • FACT-GP Identifies Survivorship Needs and Assists in Directing Patient Care, Resources • Central Nervous System Tumors: A Challenge for Navigators and Patients

… and more

ONCOLOGY NURSE ADVISOR FORUM The Nurse-Caregiver Relationship: Strategies to Ensure Effective Communication and Rapport

NAVIGATOR NOTES Disparities in Cancer Care: Equality vs Equity Rosemarie Tucci, MSN, RN, AOCN; Eucharia Borden, MSW, LCSW, OSW-C

FEATURES Early Lymphedema Prevention After Breast Cancer Surgery Bette Weinstein Kaplan

Culturally Sensitive Care for the Transgender Community William Goeren, LCSW-R, ACSW, OSW-C, SEP

Continued on page 4

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JOURNAL REVIEW Nurses’ Guide to Managing Symptoms of Myeloproliferative Neoplasms

CONTENTS 18

Oncology nurses discuss the importance of ongoing education on the treatments and symptoms of MPNs.

July/August 2019

JOURNAL REVIEW DLQI Valid for Assessing QOL in Patients With Breast Radiodermatitis John Schieszer

John Schieszer

ISSUES IN CANCER SURVIVORSHIP Alcohol and Prostate Cancer: How Is Intake Associated With Risk of Death and/or Metastasis?

The effect of alcohol consumption on the risk of lethal prostate cancer in men at risk of the disease, and those who developed nonmetastatic prostate cancer during follow-up. Bette Weinstein Kaplan

RADIATION & YOUR PATIENT Administering Lutetium Lu 177 Dotatate to Patients With GEP-NETs Bryant Furlow

COMMUNICATION CHALLENGES Understanding Noncompliance Ann J. Brady, MSN, RN-BC, CHPN

THE TOTAL PATIENT Support, Education, Advocacy Are Key to Program for Women With Metastatic Breast Cancer Bette Weinstein Kaplan

FACT SHEETS Cancer Drug Development: How Therapies Move Through the Pipeline

A review of the processes involved in drug development and US FDA drug approval. Chemicals in Meat Cooked at High Temperatures and Cancer Risk

The relationship between the HCAs and PAHs produced by cooking muscle meats and cancer risk. PUBLISHERS’ ALLIANCE: DOVE PRESS The Prognosis Comparison of Different Molecular Subtypes of Breast Tumors After Radiotherapy and the Intrinsic Reasons for Their Distinct Radiosensitivity

FROM CANCERCARE Body Image and Self-Esteem in the Cancer Patient

Researchers summarize the prognostic differences in response to radiotherapy by breast cancer subtype.

Leeann Medina-Martinez, LMSW

Cancer Management and Research

ASK A PHARMACIST Naming of Biologics; Treatment-Related Taste Changes Lisa A. Thompson, PharmD, BCOP

4 ONCOLOGY NURSE ADVISOR • JULY/AUGUST 2019 • www.OncologyNurseAdvisor.com

ON THE

WEB

IN THE NEWS

ÂŠ DIGITALGRILL / GETTY IMAGES

RT Consent Forms Exceed Readability Levels Informed consent procedures are fundamental to the shared decision-making process and essential to maintaining patient autonomy in the settings of both clinical research and clinical care, but the complexity of cancer care can confound the goal of achieving true informed consent, particularly when descriptions of highly technical treatments, such as radiation therapy, are involved. As a means of facilitating patient comprehension, the American Medical Association, the National Institutes of Health, and the National Cancer Institute recommend readability levels of 6th-grade, 7th- to 8th-grade, and 8th-grade, respectively, for written consent forms. Although regulations and other forms of guidance exist regarding informed consent for patients considering participation in clinical research, there is a dearth of studies evaluating the readability and effectiveness of written informed consent forms for clinical procedures performed as part of routine cancer care, particularly those involving radiation therapy. In this study, department chairs or clinical directors of all US radiation oncology departments with training programs listed in the Electronic Residency Application Service in 2016 were queried by email regarding their use of informed consent forms, including whether the forms were specific to a particular body site and whether patients were permitted to take them home before and after providing a signature. In addition, the department leaders were asked to send copies of their forms, including those specific to the brain and breast, if available. Consent forms were then assessed for grade-level readability, as well as individual word difficulty, using validated measures. A key finding of the study was that an average of 7.2 difficult words were included in the forms. The following difficult words were included in a least 15% of forms: alternative (-ate), oncologist (-y), simulation, attending (physician), irradiated (-ion), (contra-) indicated (-ions), intervention (-al), and recurrence (-t). In addition, mean grade-level readability scores of the forms using different index measures were 12.3 to 15.2 and 10.6 to 14.6, with the 2 ranges corresponding to forms where non-narrative text was edited to create a single sentence or multiple sentences. Interestingly, the grade-level readability scores of the body-site specific forms were lower than the general forms. Read more at http://bit.ly/32RwIcv.

NPs, PAs Represent Largest Segment of Cancer-Specific Providers for US Elderly The increasing proportion of the US population aged 65 and older and the higher incidence of many cancers in this age group contribute to an increasing need for complex cancer care. Nevertheless, information related to the cancer workforce, particularly as it applies to nonphysician providers, is very limited.

Cancer registries linked to the SEER-Medicare database were interrogated to investigate characteristics of providers and recipients of ambulatory cancer care in the United States between January 1, 2013, and December 31, 2013. Providers were classified as nurse practitioners (NPs), physician assistants (PAs), hematologists, medical oncologists, hematology/ oncologists, and gynecologic oncologists. Demographic characteristics of patients, including geographic location (Northeast, Midwest, South, and West) and its associated

www.OncologyNurseAdvisor.com â&#x20AC;˘ JULY/AUGUST 2019 â&#x20AC;˘ ONCOLOGY NURSE ADVISOR 5

IN THE NEWS

Read more at http://bit.ly/2LG5U9W.

within 30 days after SCP creation between January 2018 and September 2018, this decreased to 2.7% after the intervention between October 2018 and April 2019. Read more at http://bit.ly/30Tkyy0.

Central Nervous System Tumors: A Challenge for Navigators and Patients Ensuring that the patient with a central nervous system (CNS) tumor is at least introduced to palliative care at the time of diagnosis is where the neuro-oncology nurse navigator can have a substantial impact, explained Marlon Garzo Saria, PhD, RN, AOCNS, FAAS, of Navigating a cancer the John Wayne Cancer Institute at with poor prognosis Providence Saint John’s Health Center in Santa Monica, California, in his presentation at the 2019 ONA Navigation Summit. CNS malignancies are a highly heterogeneous group of cancers characterized by an extensive spectrum of disease, age-specific incidences, and highly variable outcomes with vastly different best practice strategies for management. For example, treatment options for glioblastoma, the most prevalent and aggressive CNS cancer in adults, includes only 2 drugs recently approved by the US Food and Drug Administration (FDA) — temozolomide (in 2005) and bevacizumab (in 2009) — and tumor treating fields without and with temozolomide (in 2011 and 2015, respectively). Survival is only 14.6 to 16.8 months after diagnosis. Nevertheless, Dr Saria stressed that a highly specialized multidisciplinary team including a neuropsychologist, neuropathologist, neuroimaging expert(s), neurosurgeon, radiation oncologist, medical oncologist, and geneticist/genetic counselor is critically important to optimize patient outcomes. Nurse navigators working with patients with CNS tumors should communicate to patients that every tumor reacts differently and, regardless of the treatment given, the tumor evolves, and we alter the tumor microenvironment by the treatment given. Some of the features that make CNS tumors unique include their typically catastrophic diagnosis, considerable symptom burden, significant cognitive/psychological burden, and their impact on family and caregivers. Unlike the quality of life (QOL) trajectory observed for many patients with other cancers, patients with CNS cancers often experience a dramatic initial drop in QOL due

to the catastrophic nature of the presenting symptom of the disease (eg, seizure, loss of peripheral vision). In addition, the patient is likely to undergo neurosurgery followed by other treatment and experience significant cognitive dysfunction within weeks. Despite the significant need to introduce palliative care at the time of diagnosis, this should not affect whether or not the patient receives active treatment. Facilitating access to clinical trials is also critically important for these patients. Read more at http://bit.ly/2ZbwryX.

Determining Risk Factors for Recurrence of Primary Localized Cutaneous Melanoma The availability of effective systemic therapies for the treatment of melanoma in the metastatic setting, and increasingly in the adjuvant setting, provides an additional impetus for the upfront identification of those patients with primary localized melanoma who are at increased risk of recurrence. Of the 1245 patients who were invited to participate in this study between October 1, 2010, and October 1, 2014, 825 patients consented and 700 were deemed eligible. All of the patients had clinically localized T1b to T4b primary cutaneous melanoma without evidence of distant metastasis and were treated at a number of hospitals and clinics in Queensland, Australia. Baseline characteristics included a median age of 62.2 years, as well as male sex and no sentinel lymph node biopsy (SLNB) in 58.6% and 63.1% of the study population, respectively. A key finding of this study was that 13.4% of patients experienced either local or distant recurrence of disease within 2 years of diagnosis. Regarding SLNB, 2-year DFS was lower in patients who had not undergone this procedure compared with those who had a negative biopsy result (ie, for patients with T3a disease, 2-year DFS was 77.5% compared with 100%, respectively), leading the study authors to suggest that SLNB “should be considered routinely for use in high-risk patients.” Other tumor factors significantly associated with disease recurrence included the presence of tumor ulceration vs none, and tumor location in the head and neck compared with the trunk. Interestingly, the risk of disease recurrence was lower for patients with tumor location in the upper limbs compared with the trunk (HR, 0.42; P <.05). Patient age and sex were not associated with disease recurrence. ■ Read more at http://bit.ly/2Y63Crj.

www.OncologyNurseAdvisor.com • JULY/AUGUST 2019 • ONCOLOGY NURSE ADVISOR 9

ONCOLOGY NURSE ADVISOR FORUM Our Consultants Ann J. Brady, MSN, RN-BC, CHPN, symptom management care coordinator at the Cancer Center, Huntington Hospital, Pasadena, California.

Jiajoyce R. Conway, DNP, CRNP, AOCNP, oncology nurse practitioner at Cancer Care Associates of York in York, Pennsylvania.

THE NURSE-CAREGIVER RELATIONSHIP: STRATEGIES TO ENSURE EFFECTIVE COMMUNICATION AND RAPPORT I’ve been running into quite a few caregivers who are providing misinformation to patients with new diagnoses. Of course, patients trust their loved ones, but as I’m trying to build trust with the patient, it can be difficult to do when you have to “prove” that you are providing correct information. What are other oncology nurses doing to make these situations go more smoothly? — Name withheld on request This is a great question! You’re right, this does happen. In an effort to be “helpful,” loved ones and/or caregivers sometimes misinterpret what they’ve read, visit websites that aren’t reputable, or present what they’ve experienced with another patient as fact, without realizing that in oncology care one size does not fit all. While there may not be one approach to these situations, here are a few things to keep in mind: Listen to the information provided and gently inquire about the source.

Donald R. Fleming, MD, hematologist/oncologist, Cancer Care Center, Davis Memorial Hospital, Elkins, West Virginia.

K. Lynne Quinn, RN, MSN, CRNP, AOCNP, director of oncology, Bryn Mawr Hospital and Bryn Mawr Health Center, Bryn Mawr, Pennsylvania.

Lisa A. Thompson, PharmD, BCOP, clinical pharmacy specialist in oncology, Kaiser Permanente, Colorado.

Rosemarie A. Tucci, RN, MSN, AOCN, manager for oncology research & data services, Lankenau Hospital, Wynnewood, Pennsylvania.

There may be a teaching moment that arises. Maybe the source of information was a good one; in this case, your job might be to simply clarify information. Affirmative statements go a long way. For example, “You seem to be very interested in learning about the different kinds of radiation. If you’d like to know more, here is a wonderful resource/website/article you might be interested in that is kept up to date; I highly recommend it. When either of you have questions, write them down so that you can discuss it with the doctor.” In this case, you’ve praised and affirmed the caregiver’s attempts, which starts to build rapport. You’ve also provided the resource you’d like to give … without creating an awkward situation. There may be times, however, where being more direct is necessary. Your role is to provide correct information, not “convince” patients or loved ones that you are correct. Whether or not someone believes you may not

have anything to do with you personally. For example, some patients have a general distrust of medical providers and thus have skepticism about the quality of the information provided. Some patients will believe everything a medical provider says. By providing the correct and necessary information, you’ve done your job. Consistency is key in your role when working with patients. Validation is often required. Lay people may not always grasp the ways in which 2 people can have what appears to be the same diagnosis and yet have different treatment recommendations; however, their experience with the other person “who had the same thing” is also valid (even if it doesn’t apply currently). The caregiver’s cumulative experience with your patient will soon be proof enough of not only how diagnoses and treatment guidelines differ but also how the role of a caregiver differs depending on the patient. You may need support from colleagues. If these issues continue, suggesting support for the caregiver may be necessary. An oncology social worker can assist with finding either general or diagnosis-specific caregiver support groups or resources. In general, assume that the intentions of the caregiver are good; they cope in different ways, just like our patients do. If this is the person that your patient has for support, it’s important to try and tap into the strengths of this relationship as much as possible. — Eucharia Borden, MSW, LCSW, OSW-C

10 ONCOLOGY NURSE ADVISOR • JULY/AUGUST 2019 • www.OncologyNurseAdvisor.com

NAVIGATOR NOTES

oday, many healthcare institutions are taking an introspective look at practice to determine the extent to which disparities may exist within their walls. Some know that disparities exist; others may not. However, since the Institute of Medicine’s Crossing the Quality Chasm: A New Health System for the 21st Century report came out in 2001, expressions of opinion that disparities do not exist are few and far between. Now that the word is out, research is being conducted on many levels to identify these care issues, but is identifying them enough? Sixteen years have been spent identifying the issues, but what has been done to alleviate them? Certainly a start, especially from a nursing perspective, is the development of nurse navigators to assist patients in the healthcare journey. Many hospitals currently use the STEEEP methodology as a means of bringing the challenge of quality care to the forefront. STEEEP is an acronym that stands for Safety, Timeliness, Effectiveness, Efficiency, Equity, and Patient-centered care. Most, if not all, hospitals base their values on safety, effectiveness, efficiency, and being patient-centered. But how many truly look to provide equitable care to all patients regardless of personal characteristics? And what is the difference between equality and equity for healthcare?

IDENTIFYING PATIENT NEEDS The US Centers for Disease Control and Prevention (CDC) refers to

Disparities in Cancer Care: Equality vs Equity Rosemarie Tucci, MSN, RN, AOCN; Eucharia Borden, MSW, LCSW, OSW-C

inequity and healthcare disparities interchangeably as “types of unfair healthcare differences closely linked to social, economic, or environmental disadvantages that adversely affect

groups of people.”1 Translating the government language, it means that equity is the process and equality is the outcome of the process. Providing the same types of care and the numbers of available resources to all comers does not allow for equitable care. Underlying issues and individual needs of the underserved, uninsured, and underinsured make needs especially individualized and will need to be addressed in a meaningful manner. Reducing these issues is one of the goals of Healthy People 2020.2 Some examples of barriers to equitable healthcare include: Socioeconomics Many patients need care they cannot afford. Some must make choices between paying insurance premiums, co-pays, and co-insurance vs paying for food, housing, or medications. Others have no coverage and may elect to decline needed care altogether, without knowledge of assistance programs that are available. Transportation If patients are not present, they cannot get the clinical services they need. Barriers include factors such as cost in the setting of limited, reduced, or no income; limited support networks; public transportation (while being immunosuppressed) that requires multiple transfers or hours of time; public transportation that does not drop off near the facility entrance; limited grant funding and/or limited resource options. Lack of Cultural Humility The extent to which a healthcare system is unable or unwilling to demonstrate that anyone who enters the door is welcome and that staff is prepared to take care

Providing the same types of care and the numbers of available resources to all comers does not allow for equitable care. www.OncologyNurseAdvisor.com • JULY/AUGUST 2019 • ONCOLOGY NURSE ADVISOR 11

NAVIGATOR NOTES of them. People with ethnic and cultural backgrounds that differ from the majority want care that honors their experiences in the world, that values who they are and where they’ve come from, without judgement or expectations of conformity. Stated another way, patients should be able to expect that treatment access and options remain consistent despite individual differences.2

We should be working together with the entire healthcare team. So who is responsible for noticing these issues if and when they exist? Disparities or inequities in healthcare provision have been identified as a public health issue, so including public health agencies and programs is one place to begin. There are numerous services within public health. The ones directly involved in care of the oncology patient include identifying community healthcare issues (cancer is usually one of the top 3 healthcare issues in underinsured communities); mobilizing community partnerships to identify and solve barriers to health care; linking people to needed personal services; ensuring the provision of care when services are not available or cost effective for them; and evaluating the effectiveness, accessibility, and quality of personal and population-based services.3 But public health agencies are not at the forefront of patient care. So where else do we look? NAVIGATION AS A TEAM EFFORT

At the bedside/chairside, nurses and social workers are often the ones

identifying issues and attempting to manage care. To do this well, we need to be aware of what is going on with our patients and their families. Look beyond stated needs, assess further, and ask the “hard questions.” • What is the plan for transportation? When patients are absent from treatment or appointments, instead of labeling them as noncompliant, ask directly about their challenges and how the team can help. Making assumptions doesn’t serve anyone well. • How is your patient managing with the increased expenses? • Does your patient need to be connected to a financial counselor? • What kind of feedback have you requested about patient experiences at your institution? Once these issues are brought out, the next question is what can be done to assist our patients, and who can do it. Certainly, social workers — both in-patient and out-patient — have the knowledge of how and where to get help in many instances. Social workers recognize issues that the environment, social relationships, distress related to loss or family problems, caregiving strain, and difficulties at work may play in determining patient support needs. Although healthcare providers may not be able to completely address patients’ social support needs, assessing those needs, engaging family and friends in treatment plans, and intervening to bolster support networks all constitute a social work approach to health.4 But no one group can do it alone. As nurses and social workers “in the trenches,” we should be working together with the entire healthcare team to assist our patients and their families.

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Use of hospital finance departments to get public assistance or charity care, neighborhood or regional support agencies, churches/synagogues/ mosques, and/or hospital-based donations for patient support are all areas that nurses should be somewhat aware of and should be able to share information on who to contact and their phone numbers and/or email addresses. Involve hospital administrators when issues of access are brought to light. Regardless of whether things change, the realization that changes are needed is always the first step. Nurses need to recognize their roles in identifying issues in and managing change within the healthcare system to better serve our patient populations. Working closely with social services as well as the entire healthcare team, we can start to identify disparities and perhaps, find solutions. ■ Rosemarie Tucci is the nurse coordinator of the Main Line Health System Pulmonary Nodule Program in Radnor, Pennsylvania. Eucharia Borden is a social worker at Lankenau Medical Center in Wynnewood, Pennsylvania. REFERENCES 1. Strategies for reducing health disparities: selected CDC-sponsored interventions, United States, 2016. Centers for Disease Control and Prevention website. https://www.cdc.gov/minorityhealth/ strategies2016/index.html. Accessed July 22, 2019. 2. Access to health services. Healthy People 2020 website. https://www.healthypeople. gov/2020/topics-objectives/topic/Access-toHealth-Services. Accessed July 22, 2019. 3. Agenda for Fighting Disparities. HealthAffairs. 2001;30(10). 4. Findlay RA. Interventions to reduce social isolation amongst older people: where is the evidence? Ageing Soc. 2003;23:647-658.

FEATURE | Side-Effect Management

Early Lymphedema Prevention After Breast Cancer Surgery Interim study results compare the effectiveness of methods for measuring extracellular fluid accumulation in patients after breast cancer treatment. BETTE WEINSTEIN KAPLAN

Sensitivity of bioimpedance spectroscopy (inset) can lead to detection of lymphedema at an earlier stage than traditional tape measure, as the increases in fluid accumulation it detects occur before the condition produces its tell-tale inflammation.

or some women with breast cancer, their experience goes beyond the disease and its treatment. They may develop breast cancer-related lymphedema (BCRL), a serious and common adverse effect, after treatment with surgery or radiation. In fact, 20% to 30% of women with breast cancer develop lymphedema, most often as a result of surgery, but it can also develop from radiation and even chemotherapy. Lymphedema causes heightened stress for the patient as it triggers pain, swelling, and leads to diminished use of the affected arm. As the condition progresses, it can wear a person down physically and psychologically, and may also increase the risk of infection.1 The best way to prevent BRCL from worsening is to detect the condition in its subclinical state, before it progresses and requires treatment with complex decongestive physiotherapy (CPD). Even though CPD can be effective, qualified therapists are often not readily available outside of major cities and medical centers. The traditional, low-tech method for evaluating a patient’s risk of developing lymphedema is simply to measure volume (circumference) of the arm with a tape measure. Although readily available, portable, and economical, tape measure may not provide the most accurate assessment of lymphedema progression. Fortunately, the breast cancer clinical armamentarium now includes bioimpedance spectroscopy (BIS), a painless and noninvasive modality for subclinical detection of fluid. To assess the potential risk for clinical

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FEATURE | Side-Effect Management lymphedema with BIS, a technician runs an electronic signal through the body, similar to the way electronic monitors determine body mass index. The availability of BIS has made earlier detection of BCRL possible, thus enabling early stage treatment with interventions that are less intensive, less invasive, and less expensive than CPD. Caught early, subclinical lymphedema is responsive to the use of compression sleeves and gauntlets to reduce lymphatic fluid in the affected arm. SENSITIVITY IS KEY Sheila H. Ridner, PhD, RN, FAAN, of Vanderbilt University School of Nursing in Nashville, Tennessee, and her multiinstitute team reported on a randomized trial to evaluate the 2 methods as part of PREVENT, an international ongoing controlled trial that began in 2014. The primary goal is to compare BIS with tape measure and evaluate whether its use could detect extracellular fluid accumulation, allowing for early intervention that may reduce the need for CDP. The team found that monitoring with BIS led to a 10% reduction in rates of progression. Dr Ridner explained that BIS is more sensitive to changes in lymphatic fluid. “The bioimpedance device measures lymphatic fluid, and the tape measures much more than that. It takes more lymphatic fluid to make your whole arm volume change than it does to make volume changes the device will detect,” she explained.

BIS measures more subtle increases in extracellular fluid, which may not be important in the whole arm volume change at that time. The Vanderbilt-based trial included 508 women with newly diagnosed breast cancer who were followed for at least 1 year after undergoing surgery. The participants were average age 59 years; average BMI, 27.9; and 77% were white. Inclusion criteria included undergoing an axillary lymph node dissection or sentinel lymph node biopsy with removal of more than 6 nodes, mastectomy, taxane-based chemotherapy, or axillary radiation. Although 8% of patients had had minor arm surgery previously, cardiovascular disease was the most frequently reported comorbidity (44% of patients). Diagnoses at baseline were stage I breast cancer (56.7%) and stage II/III breast cancer (39%). There were no significant differences in demographics, clinical, or baseline treatment characteristics between the tape measure and BIS groups.

The researchers provided compression sleeves (class 2; 23-32 mm Hg) and gauntlets to women found to have increasing fluid volume. For this protocol, the patients wore the devices 12 hours a day for 4 weeks to prevent progression to lymphedema. The women who went on to develop lymphedema reached their trial end point, and staff referred them for complex decongestive physiotherapy. TRIGGERS Trigger points for implementing the lymphedema prevention protocol included:

• BIS group An increase of 6.5 L-Dex units or more, which is 2 standard deviations (SDs) more than the baseline measurement. • Tape measure group A volume increase of 5% to 10% more than the baseline measurement in the at-risk arm without a similar change in the arm that was not at risk. Patients in the BIS group demonstrated lower and slower rates of progression to lymphedema requiring CDP; by contrast, those in the tape measure group triggered interventions earlier and more frequently (9.5 months vs 2.8 months). The researchers hypothesized that some patients have a generalized inflammatory response in the arm 3 months after surgery, which is easily picked up by tape measure. However, BIS measures more subtle increases in extracellular fluid, which may not be important in the whole arm volume change at that time. Dr Ridner and her team plan to continue to assess how triggers occur in both groups. “Oncology nurses who function in staff positions, can use BIS to assess lymphatic status in breast cancer survivors. Then they can use this information in real time in clinic settings to inform patients about potential risks of lymphedema and risk-reduction practices. They can also provide this information to treating physicians for further assessment and potential treatment,” Dr Ridner told Oncology Nurse Advisor. “Advanced practice nurses can use BIS to determine if they need to prescribe a prevention intervention similar to the one used in our study. Then have their patients return in 28 days to see if the intervention was successful, potentially avoiding costly physical therapy referrals.” ■ Bette Weinstein Kaplan is a medical writer based in Tenafly, New Jersey. REFERENCE 1. Ridner SH, Dietrich MS, Cowher MS, et al. A randomized trial evaluating bioimpedance spectroscopy versus tape measurement for the prevention of lymphedema following treatment for breast cancer: interim analysis [published online May 3, 2019]. Ann Surg Oncol. doi: 10.1245/s10434-019-07344-5

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FEATURE | Disparities in Care

Culturally Sensitive Care for the Transgender Community CancerCare explains gender identity and how cancer risks and care differ between transgender persons and the general population. WILLIAM GOEREN, LCSW-R, ACSW, OSW-C, SEP

he Healthy People 2020 Blueprint for National Health Goals program was produced by the United States Department of Health and Human Services in 2010 to “achieve health equity, eliminate disparities, and improve the health of all groups.”1 These groups are defined as race and ethnicity; gender; socioeconomic status; disability status; lesbian, gay, bisexual, and transgender (LGBT) identity; and geography. The Fenway Institute, an interdisciplinary center for research, training, education, and policy development, focusing on national and international health issues for traditionally underserved communities, defines the T of LGBT as those persons who identify as transgender, an umbrella term for people whose gender identity and/or gender expression differs from their assigned sex at birth (ie, the sex listed on their birth certificate). Gender identity is a person’s innate, deeply felt psychological identification as a man, woman, or another identity outside of the gender binary that may not correspond to the person’s external body.2 Gender identity, therefore, is different, distinct, and not to be confused with sexual identity or sexual orientation. Sexual identity/orientation is defined by the National LGBT Health Education Center as “how one identifies their physical and emotional attraction to others. Sexual identity/orientation involves three components: attraction, behavior, and identity.”3 For data, analytic, and research purposes, gender identity and sexual identity are now uniformly categorized as sexual and gender minorities (SGMs).

16 ONCOLOGY NURSE ADVISOR • JULY/AUGUST 2019 • www.OncologyNurseAdvisor.com

RISKS SPECIFIC TO TRANSGENDER PEOPLE The burden of cancer, as has been noted by recent, albeit limited, research mostly from state-level population surveys, affects SGM persons disproportionately more than their heterosexual counterparts.4 One primary reason for the lack of research is that the SGM community has not been included in the National Institute of Health (NIH) national cancer registries.4 There are complex and multifaceted behavioral, political, and socio-economic factors that result in higher incidence rates for some cancers in SGM persons. For transgender people, some of these factors are uniquely significant, such as a lack of awareness about their own health needs, which can prevent transgender persons from being screened for certain cancers. For example, people who undergo sex-reassignment surgery retain a small amount of tissue from their original reproductive organs; therefore, a trans woman may be at risk for prostate cancer, and a trans man may be at risk for ovarian cancer.5 Other factors include oncologists’ and other health care providers’ lack of knowledge about gender identity; insufficient training in cancer care for transgender patients; and unfortunately, discomfort with, disinterest in, and discrimination toward the transgender cancer community. Thus, many transgender persons avoid or delay pursuing health care because of past experiences within the health care system. According to a survey by the National LGBT Cancer Network and the National Center for Transgender Equality, which had 28,000 respondents, 50% of transgender persons surveyed reported teaching their medical providers about transgender health care, 19% were refused care due to their transgender identity, 28% postponed necessary medical care when sick or injured due to discrimination by health care providers, and 33% delayed or did not try to get preventive health care due to discrimination.6 Some behaviors that are statistically more common in the transgender community are associated with a disproportionate risk for certain cancers, including higher rates of alcohol consumption, cigarette use, illegal substance use, and use or misuse of prescribed or self-administered hormone therapy, as well as a higher percentage of risk factors that are associated with unsafe sex (eg, depression, low self-esteem, relationship

Some behaviors that are statistically more common in the transgender community are associated with a disproportionate risk for cancers. abuse, sex while drunk/high, and sexual abuse/assault), resulting in potential exposure to human papillomavirus (HPV), HIV, and hepatitis B.7 Cases of presumably hormone-related malignancies diagnosed in trans women after the initiation of medical or surgical gender affirmation include carcinomas of the breast and prostate, prolactinomas, and meningiomas. In trans men, published case reports describe cancers of the breast, ovaries, cervix, vagina, and endometrium.8 CULTURALLY SENSITIVE CANCER CARE Steps must be taken to increase medical knowledge and sensitivity to transgender issues, reduce health care disparities for the transgender community, and to continue to create and promote an atmosphere of safety and inclusion for transgender patients. According to a 2017 National LGBT Health Education Center report, the responsibility of health care and medical providers is to create “a setting of respect and trust. This requires referring to the transgender patient by their preferred name and pronoun, reassuring the patient about confidentiality, educating clinic staff and colleagues regarding transgender issues, and respecting the patient’s wishes regarding potentially sensitive physical examinations and tests.… Familiarity with commonly used terms and the diversity of identities within the transgender community is essential.”7 Only by ensuring the inclusion of the transgender community, can there be an even greater, broader, and more diverse interest in study and research to improve the lives of transgender clients. ■ William Goeren is director of Clinical Programs at CancerCare. The references are available in the online version of this article. Go to http://bit.ly/transgender0819

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JOURNAL REVIEW

urse researchers are repor t ing that they have started the validation process for using the Dermatology Life Quality Index (DLQI) as a means to better assess how breast radiodermatitis may affect quality of life (QOL) for women with breast cancer.1 The current analysis, which was published in Breast Cancer: Basic and Clinical Research, was designed to better understand the skin-related and global quality of life in women with breast radiodermatitis. “It is important to use reliable and valid instruments in the clinical and research settings. Nurses play an important role in clinical care and should have an active role in validating instruments used to provide nursing care, said study investigator Laura Curr Beamer, RN, assistant professor of nursing at the School of Nursing & Health Studies, Northern Illinois University, DeKalb. THE STUDY As part of this investigation, 40 women (mean age 58 years) completed the DLQI instrument weekly while they were undergoing external radiotherapy. At week 5 of treatment, 78% of participants (n = 31) provided narrative feedback on how each DLQI item affected her life. The researchers examined responses for agreement between participants’ DLQI numerical ratings and their narrative feedback. All the women had stage 0 to III breast cancer, 97% were non-Hispanic white, and 74% had some level of college education. A significant

DLQI Valid for Assessing QOL in Patients With Breast Radiodermatitis John Schieszer

number of women (42%) worked in a professional occupation and 45% earned more than $75,000 annually. Most of the women were not current smokers (94%), 39% were of normal weight, and 39% were obese. In this cohort, 33 women received normofractionated doses of 180-200 cGy and 7 women received accelerated external beam treatment using fractions of 266 cGy. For the study, the participants completed the DLQI at baseline then weekly while undergoing radiotherapy. Radiodermatitis intensity was expected to peak at the fifth week of therapy, so the participants were asked to provide written feedback on the DLQI items; 31 of the 40 women provided usable narrative responses at week 5. They

were also asked which item was most important to them and why, and if they had any additional comments. The orginal 10-item instrument was previously piloted with 20 patients, then revised slightly and piloted again with another 20 patients. The 10 scaled items on the DLQI focus on physical sensations; embarrassment; interference with activities at home; clothing selection; impact on social activities; difficulty participating in a sport; preventing work or school attendance; causing a problem with relationships among close friends, relatives, or a partner; sexual difficulties; and impact of treatment on life and lifestyle. WHAT WAS LEARNED The researchers found a 71% to 98% agreement between participants’ DLQI ratings and narratives. The first item on the DLQI tool asks about 3 sensations — pruritus, pain, and stinging — and it had the lowest level of agreement. The women had to mention these 3 sensations in their narrative response to meet the requirement for agreement. The highest levels were found with the item that focused on sports. The majority of women responded that their skin did not impact their ability to participate in any sports; however, most did not often engage in sporting activities. Seasonality was found to affect choice of clothing. Those women undergoing radiotherapy during summer months reported more difficulty selecting clothing to cover their irradiated skin compared with participants undergoing radiotherapy during the winter.

The overall validity and reliability of the Dermatology Life Quality Index in this pilot study was moderately good. However, seasonality influenced some participant responses on the DLQI. 18 ONCOLOGY NURSE ADVISOR • JULY/AUGUST 2019 • www.OncologyNurseAdvisor.com

Further studies with more diverse populations are warranted. “All of the women participating in this study indicated their skin (radiodermatitis) did not prevent them from working or studying. We believe our participants either stopped working or continued to work during systemic therapy. Radiotherapy and radiodermatitis did not seem to significantly affect ability to work or study. This is an important concern for women dealing with a breast cancer diagnosis,” Ms Beamer told Oncology Nurse Advisor. The researchers concluded that the overall validity and reliability of the DLQI in this pilot study was moderately good. However, seasonality influenced some participant responses on the DLQI. Women in the summer responded they needed to cover up and

avoid sun exposure to radiated areas. The study showed that embarrassment was an issue because summer clothes are more revealing than winter clothes. The researchers concluded that skin-related QOL may be influenced by the season and geographic location and this effect could confound studies of radiodermatitis prevention or management. IMPLICATIONS FOR NURSES Ms Beamer said the DLQI was the first instrument developed to measure skinrelated quality of life (QOL) among people with dermatologic conditions. It was designed to measure QOL weekly with a minimal amount of survey burden. Women receiving radiotherapy for breast cancer typically already have completed surgery and systemic therapy, putting them at increased risk for fatigue and other factors that harm their QOL. “Nurses working in radiation oncology typically assess their patients once a week during radiotherapy. It is desirable to have a short, but reliable and valid instrument to assess skin-related

QOL in this population for clinical and research purposes. However, the DLQI has never been formally validated for use in radiodermatitis,” explained Ms Beamer. She noted that further studies with more diverse populations are warranted to continue to validate the DLQI for use in breast cancer radiodermatitis. She and her team hope this study can serve as a pilot for future, larger studies. They noted that the sample size in the current study was modest and they write that caution must be taken regarding applying these results to other populations, since this cohort was almost entirely white. ■ John Schieszer is a medical reporter based in Seattle, Washington. REFERENCE 1. Beamer LC, Grant M. Using the Dermatology Life Quality Index to assess how breast radiodermatitis affects patients’ quality of life [published online April 12, 2019]. Breast Cancer (Auckl). doi: 10.1177/1178223419835547

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RADIATION & YOUR PATIENT interdisciplinary teams: patient education, establishing peripheral IV access, amino acid infusion, and symptoms management.

A Administering Lutetium Lu 177 Dotatate to Patients With GEP-NETs

Bryant Furlow Lutetium Lu 177 dotatate (Lu-177; Lutathera®) is a peptide receptor-binding radionuclide approved by the FDA in 2018 to treat hormone receptor somatostatin-positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs). It is also undergoing research and development as an investigational treatment of neuroblastoma, small-cell lung cancer, and somatostatin-receptor-positive small bowel carcinoid tumors. Because Lu-177 is a radioactive agent, cancer centers must develop and implement interdisciplinary procedures for its safe administration, protecting patients and staff from inadvertent exposures. Nurses have several roles in these

multidisciplinary team approach is critically important for ensuring radiation safety in the administration of lutetium Lu 177 dotatate (Lu-177).1-3 Lu-177 has been used in Europe for several years but was only approved by the US Food and Drug Administration (FDA) in January 2018.4,5 Because this agent is a newly FDA-approved radionuclide therapy, US cancer centers that will offer this treatment are in the process of developing and implementing safety procedures. Neuroendocrine tumors were once considered rare, but they are currently the second-most-frequently occurring gastrointestinal malignancy.2 They usually emerge in the gastrointestinal tract or lungs.2,3 Somatostatin-positive gastroenteropancreatic neuroendocrine tumors are a rare and challenging group of cancers that occur in the pancreas and gastrointestinal tract tissues, including stomach, intestines, colon, and rectum. GEP-NETs are diagnosed in an estimated 1 person per 27,000 Americans each year, according to the FDA.4 A peptide receptor radionuclide therapy (PRRT), Lu-177 can be administered in outpatient treatment settings.3 Nuclear imaging of neuroendocrine tumors involves somatostatin receptor analogues that bind to somatostatin receptors on tumor cell surfaces. Lu-177 is very similar but it carries a radiotherapeutic payload.6 Lu-177 was approved by the FDA for treatment of GEP-NETs after being fast-tracked for Priority Review as a breakthrough therapy.4 Oncology nurses will play important roles in the safe administration of Lu-177, according to Kristyn Romanowski, BSN, RN, OCN, who reported on the Rocky

20 ONCOLOGY NURSE ADVISOR • JULY/AUGUST 2019 • www.OncologyNurseAdvisor.com

Mountain Cancer Centers’ development of a safe outpatient administration process at the Oncology Nursing Society (ONS) 44th Annual Congress, held in Anaheim, California.3 The first of these tasks is to make sure patients understand the goals of treatment and the administration process. “The nurse is responsible for the [Lu177] education,” Ms Romanowski told Oncology Nurse Advisor. “We have a teaching session the week of treatment and discuss what to expect on the day of treatment, and after-care instructions.” Because Lu-177 can harm a developing fetus and newborn, contraindications include pregnancy or ongoing lactation, as well as impaired hematologic function, severe renal impairment (creatinine clearance <30 mL/ min), severe liver function impairment, severe cardiac impairment, moderate or severe right-heart valvular disease, or cognitive impairment impairing the patient’s ability to consent to treatment.7 Other patient eligibility criteria include sufficient bone marrow reserves, hemoglobin greater than 8.0 g/dL, white blood cells at more than 2000/mL, absolute neutrophil count higher than 1000, serum albumin greater than 3.0 g/dL, kidney function (serum creatinine clearance >30 mL/ min; glomerular filtration rate [GFR] >40 mL/min/1.73 m 2), Karnofsky performance status higher than 50%, expected survival exceeding 3 months, and informed consent by the patient.7 A SAFE ENVIRONMENT FOR ADMINISTRATION

Radiation safety practices include treatment area set-up and cleanup, conducted in coordination with nuclear medicine experts and the cancer center’s radiationsafety officer. Procedures should be formalized to avoid contamination of floors and walls, patient toilet area floors, toilet

Lu-177 infusion is administered using a gravity infusion method. seats and lids (using water-resistant padding2), and sinks, door handles, countertops, faucets, and patient tray tables.2 Lu-177 infusion is administered by a nuclear medicine technologist or physician using a gravity infusion method at least 30 minutes after an amino acid infusion.2 NaCl 0.9% (250 mL) infusion delivered at a rate of 1 drop every 3 seconds for the first 15 minutes, followed by a maximum flow drop rate for 15 minutes.2 Lu-177 infusion requires approximately 30 minutes.2 “Despite the complex nature of administering and coordinating care, our biggest challenge was reassuring staff that they were safe caring for these patients,” noted Ryan Doering, RN, BSN, OCN, and colleagues.8 “Even after strong education about administration of hazardous drugs in the infusion room, we identified gaps related to radiation safety education for staff.” Should a Lu-177 spill occur, the priorities are to protect the patient, control the extent of contamination using absorbent paper towels, and to clean up the contaminated areas.8 The authorized user contacts nuclear medicine, radiation safety, and diagnostic medical physics personnel. PRE- AND POSTTREATMENT SUPPORT

Supportive care is an important component of Lu-177 treatment. Patients receive a long-acting antiemetic (fosaprepitant or aprepitant), a short-acting antiemetic (granisetron), and an H-2

blocker (famotidine) prior to the administration of the amino acid solution, Ms Romanowski explained. “The patients are also provided a prescription for an antiemetic (eg, ondansetron or prochlorperazine) to use at home for any breakthrough nausea,” she noted. Patients must be monitored for adverse events. Common side effects include lymphopenia, increased GGT, AST, or ALT enzymes, nausea, vomiting, hyperglycemia, and hypokalemia.4 Serious adverse effects include myelosuppression, secondary myelodysplastic syndrome or leukemia, renal toxicity, and hepatotoxicity, as well as neuroendocrine hormonal crises and infertility.4 “Patients are monitored with a [CBC] and comprehensive metabolic panel every 2 weeks after the start of treatment,” Ms Romanowski said. “Specifically, we are monitoring for any changes in red blood cells, white blood cells, platelets, renal and liver function. Potential adverse events [of any grade] include anemia, neutropenia, thrombocytopenia, renal toxicity and hepatotoxicity.” Another adverse event is IV infusion extravasation.6 “In our outpatient setting, the biggest challenges were coordination of patient care between multiple disciplines (such as nursing and radiology), the actual number of patients we can treat based on the need for extra nursing staff, and to ensure adequate distance between patients receiving Lu-177 and our general-infusion patient population,” Ms Romanowski said. “As systematic radioactive infusion therapies advance, nursing standards of practice must be defined,” Victoria Wertz, MS, RN, and colleagues at Stanford Health Care in Stanford, California, reported at the ONS 44th Annual Congress.6 “While the incidence of extravasation is lower in patients receiving a 2-amino-acid solution,

registered nurses must remain vigilant when monitoring for extravasation.” Patients should be informed that for 3 days after therapy, they should limit potential irradiation of others by avoiding public spaces; using a designated bathroom at home that is not used by others, if possible; twice flushing the toilet after use; frequent handwashing; and use of separate linens.2 Men should urinate sitting down to avoid toilet splashing.2 CONCLUSION “Teamwork and collaboration among departments of nuclear medicine staff, radiation-safety personnel, radiology nursing and the physicians are needed to successfully treat patients,” reported Lora Hromadik, PhD, RN, of the University of the UPMC Presbyterian Hospital in Pittsburgh, Pennsylvania, and colleagues in a recent paper.2 “Detailed and specific guidelines are needed to create a conducive environment for administration of [Lu-177],” they wrote.2 “In the process, patients need the emotional support of caring staff to work through their anxiety concerning this new treatment they are undertaking. Consistently, patients refer to embarking on their [Lu-177] treatment as a journey of hope.” ■ Bryant Furlow is a medical journalist based in Albuquerque, New Mexico. REFERENCES 1. Stansel C. Lutathera implementation: a multidisciplinary approach. Poster presented at: ONS 44th Annual Congress; April 11-14, 2019; Anaheim, CA. 2. Hromadik LK, Sturges L. Caring for patients receiving 177Lu-DOTATATE, Lutathera®: a treatment of hope for patients with gastroenteropancreatic neuroendocrine tumors. J Radiol Nursing. 2019;38(1):28-32. References continue on page 22

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RADIATION & YOUR PATIENT 3. Romanowski K, Lehman M, Hollada L, Snavely S,

tract-cancers. Accessed July 23, 2019.

Poster presented at: ONS 44th Annual Congress;

Gervais S. Development of a safe administration

5. Cipriano M. Expanded access data support-

process for Lutathera in an outpatient treatment

ed Lutathera approval, US FDA notes. Pink

center. Poster presented at: ONS 44th Annual

Sheet: Informa Pharma Intelligence website.

receptor radionuclide therapy for patients with

Congress; April 11-14, 2019; Anaheim, CA.

https://pink.pharmaintelligence.informa.

advanced pancreatic neuroendocrine tumors.

4. FDA approves new treatment for certain

com/PS122407/Expanded-Access-Data-

April 11-14, 2019; Anaheim, CA. 7. Ramage J, Naraev BG, Halfdanarson TR. Peptide

Semin Oncol. 2018;45(4):236-248.

digestive tract cancers [news release]. US

Supported-Lutathera-Approval-US-FDA-

Food and Drug Administration website;

Notes. Published January 29, 2018. Accessed

Back to the future – radiation safety concerns

January 26, 2018. https://www.fda.gov/

July 23, 2019.

back at the bedside. Poster presented at:

news-events/press-announcements/fdaapproves-new-treatment-certain-digestive-

8. Doering R, Lombardi J, Strickland M, Larsen T.

6. Wertz V, Salom M, Benoit T, David K, Tsung F.

ONS 44th Annual Congress; April 11-14, 2019;

Incidence of extravasation in 177 Lu-DOTATATE.

Anaheim, CA.

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COMMUNICATION CHALLENGES

Understanding Noncompliance

Ann J. Brady, MSN, RN-BC, CHPN

In medicine, the term noncompliance is commonly used in regard to a patient who does not follow a prescribed course of treatment.

ocus pocus” is a saying that most of us have heard before; perhaps you’ve even seen the movie with that name. It’s generally associated with a magician using the phrase to cast a spell, or known as a term for trickery or magic. The origin of the saying, however is a perversion of a Latin phrase, Hoc est corpus meum, which was used in Catholic liturgy. In the 1500s, during the time of the Reformation when criticism of the church increased, it became a way to ridicule the church. It was used as a tongue-in-cheek remark, a statement to infer that things were not what they seemed to be. I was reminded of the origin of the saying recently and it got me thinking of other words or phrases that started out meaning one thing and evolved to have a different meaning, and how the original meaning can be lost completely over time. In many ways it seems that the way we use and perhaps misuse “noncompliant” in the medical setting has changed from the true meaning. The use of this descriptor may also

be considered a perversion of the original meaning. Compliance comes from the word comply, which means to go along, so by extension noncompliance is to not go along. When we accept the label of noncompliant as it applies to a patient and use it in its narrowest meaning, it can become a hard stop. When that happens, we may neglect to investigate why a patient chooses not to comply with medical advice. I’ve often pondered how much easier it would be if there was a pill for compliance that our patients could take that would have them following medical advice, but then of course they would have to comply with that. A conundrum of sorts. The term noncompliant assumes in part that the patient has accepted the premise of what they are instructed to comply with. Say, for instance, that a patient has a heart condition; a heart medication is prescribed and they are expected to take the medication. If they fail to follow instructions and don’t take it, they may be labeled as noncompliant. But what if the patient does not accept the premise, for whatever reason? Are they then being noncompliant? This may sound like word soup, but if we stop for a moment to consider a different perspective it adds a layer of deeper comprehension. The dictionary definitions of noncompliance are interesting. They include: • Failing to act in accordance with a wish or command. • To be defiant and resistant to authority. • The fact of not obeying a rule or law: In medicine, the term noncompliance is commonly used in regard to a patient who does not take a prescribed medication or follow a prescribed course of treatment. Continues on page 24

www.OncologyNurseAdvisor.com • JULY/AUGUST 2019 • ONCOLOGY NURSE ADVISOR 23

COMMUNICATION CHALLENGES

We can work toward understanding by asking for clarification. “Help me understand your reluctance to take the medication as prescribed.”

In reading these definitions we can see that noncompliance is often considered bad behavior. There is the fact of noncompliance — treatment is prescribed but not taken. And often there is an explanation for it — for example the patient finds the side effect burden is unacceptable. It is easy to get stuck on the act of noncompliance and fail to recognize the rationale behind it, one that may make sense to a patient within the context of their reasoning. When we don’t understand behavior, it is easy to oversimplify, easy to apply a label and a set of beliefs in relation to the actions. Just as we assess physical symptoms, we assess compliance and we place a value on it. Compliant patients are “good patients” and though we may not want to identify a noncompliant patient as “bad,” there is often a negative connotation. And the negative connotation is often projected onto the patient. This is especially true if the health care provider feels that the proper education and information have been conveyed. The patient’s failure to comply isn’t because they don’t know; after all multiple providers have emphasized the importance of the treatment or medication. It’s the refusal to do what we recommend, which is “wrong.” What causes an otherwise reasonable person to reject medical advice? Certainly each situation is unique, but there is often a common theme, which is that the patient rejects the premise. Do we take the time to dig into that reason? Do we take noncompliance personally? I can only speak for myself in my practice; sometimes I do. Especially when I feel confident, even proud, of the instruction and education I have provided. When a patient rejects my instructions I find myself feeling responsible or disappointed. Indeed, there are times when other healthcare providers will ask us as nurses, “Why didn’t he/she take their medication?” As if we are complicit in the refusal. How does all of this relate to the the provenance of the phrase hocus pocus? Maybe there is a little magical thinking when it comes to addressing noncompliance. Perhaps, we think, repeating the same instructions again

and again will lead a patient to comply. Or the other magical thought, I will be the one to say just the right thing, use just the right words and convince them to follow instructions. Hocus pocus. We use our skills and experience when providing the knowledge basis for treatment to patients. We give statistics, rationale, even strategies. That is the knowing part. But the other part of the equation is the understanding part. Putting the information into context. We can work toward that by asking for clarification. “Tell me what you understand about this treatment.” Or, “Help me understand your reluctance to take the medication as prescribed.” And wait. One patient I was working with recently had a clear understanding of why a certain medication regimen to manage his symptoms was prescribed. He could tell me back what I had said. There was no confusion on his part. My attempts to convince him to take the medication were repeatedly ignored. I could not figure out why and neither could his wife or others involved in his care. Ultimately I learned that part of this patient’s noncompliance was fatigue, physical as well as pill fatigue. He just didn’t want to follow any more instructions. Being able to control this one little aspect of his life was more valuable than complying with anything we had to offer him. There is a similarity between noncompliance and the designation of a patient as being “in denial.” But both denial and noncompliance are not end points, they are starting points. They are a place to inquire, a time to expand communication in a nonjudgmental way. An opportunity to provide clarification but also a place to advocate for a patient’s autonomy. It isn’t easy when we know that the treatment offered will benefit the patient and we cannot get them to endorse it. It is hard to back away and allow for that. But it is as important to keep the lines of communication open, which may be one of the ways to convert noncompliance to compliance. Or a way to find our own footing in a complex dynamic. ■ Ann Brady is a symptom management care coordinator at a cancer center in Pasadena, California.

24 ONCOLOGY NURSE ADVISOR • JULY/AUGUST 2019 • www.OncologyNurseAdvisor.com

Support, Education, Advocacy Are Key to Program for Women With Metastatic Breast Cancer Bette Weinstein Kaplan

p to one-third of women with breast cancer experience progression to metastatic disease. To address the particular situation of these patients, a team of nurses at the University of Pittsburgh School of Nursing developed an interdisciplinary support program: the Support, Education, and Advocacy Program of Care for Women with Metastatic Breast Cancer (MBC-SEA). Concentrating on psychosocial and palliative care, the program uses assessment tools to determine patients’ specific needs, then connects them to resources that focus on those needs.1 The team was concerned that patients with metastatic breast cancer often feel marginalized. These women have moved past the early stage breast cancer pink ribbon campaigns that are pushing for a cure, corresponding author Victoria Reiser, RN, BSN, BMTCN, OCN, explained to Oncology Nurse Advisor. There is no cure for them; they are now living with a chronic disease and all the stressors that go along with it. They need advocates, just like patients living with diabetes or heart disease have. Patients with metastatic breast cancer are most likely to undergo treatment for a longer time and may have had multiple sequential treatments. They are often on targeted or hormonal treatments for much longer, and their symptoms and financial

burdens are much greater than those of patients with early stage breast cancer. Their disease might be stable and under control, but they live in constant fear of it coming back and more aggressively. FOCUS ON CHRONIC STATUS VS ACUTE DISEASE

The team of nurses developed the palliative and supportive care intervention for women with metastatic breast cancer to improve support services for these patients. It is implemented by the clinical staff of the University of Pittsburgh’s breast cancer program. The MBC-SEA program evaluation component comprised 118 women ages 50 to 69 years with metastatic breast cancer who visited the outpatient breast cancer clinic once a week in 2016 and

With the MBC-SEA program, the team saw a significant increase in referrals. 2017. Most of the women had been living with the disease for at least 3 years, and were undergoing hormonal or targeted treatment only for estrogen receptor (ER)-positive breast cancer. The staff consisted of a nurse navigator, a nurse practitioner, a palliative

care provider, a social worker, and the oncology collaborative practice nurses. The nurse navigator had no patient contact; her responsibility was to review the charts for the patients who would be attending the clinic the following week, lead a team meeting to review the patients, and then coordinate support services for the patients based on what was identified in the meeting. AN IMPORTANT ROLE FOR RATING SCALES

An integral part of the program was having the patients complete rating scales at each visit, including scales for measuring pain, emotional distress, generalized anxiety and depression disorder (GAD), symptoms such as nausea, and financial distress. Ms Reiser explained that because the scales made patients’ difficulties in each category more measurable, clinic nurses found talking with patients about their difficulties was easier. “We can see the severity of different things like how financially distressed the patient is going to be, and if we look at that scale we can explore those options deeper,” she explained. “We obviously can’t cover everything, but if we see that a patient’s financial distress is much higher and her nausea scores are also higher, then those are the things we can focus on.” Continues on page 27

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FROM

cancer diagnosis usually means a whirlwind of unexpected changes and challenges, including long-term or short-term treatment adverse effects on the patient. Some treatment adverse effects include hair loss, fatigue, weight changes, surgery scars, loss of body parts, rashes, or the need for an ostomy.1 These physical changes can affect the way patients feel about their appearance and their body image. The realization that their look is going to be altered for a short period of time or for the rest of their lives can result in a loss of self-esteem. One of the comments heard, specifically among women, is how unprepared they are to lose their hair due to their treatment regimen. For hair loss, options such as wigs and other head coverings are available to mediate the change. Other changes caused by cancer, such as an ostomy or scars from surgery, are not as easy to hide. Self-esteem is defined as the confidence in one’s worth or abilities2 and is one of the many aspects of a patient’s life that is affected by cancer treatment. Self-esteem can be high or low, and for cancer patients, keeping their selfesteem closer to the high end rather than the low is important. Lower selfesteem is linked to patients experiencing more depressive symptoms and having reduced social support.3 When patients look in the mirror, they want to be happy and proud of what is staring back at them and that does not always happen. Support is needed during the times when patients don’t feel like themselves, especially when changes in their bodies occur right before their eyes.

Body Image and SelfEsteem in the Cancer Patient Leeann Medina-Martinez, LMSW

Nurses are in an important position to have conversations with patients about self-esteem and body image. A discussion about body image and self-esteem during every encounter with every patient is ideal.4 Here are tips to make this more feasible when nurses see patients.

Encourage the patient to give themselves time to adjust to the change

Certain changes are unavoidable, such as scars. Over time, many patients adapt to the new reality and a new normal. Encouraging the patient to take time to adjust allows the patient to integrate what happened. Encouragement to be kind to themselves allows patients to mourn the change so they can better integrate it into who they are now. Suggest support services In talking with other patients who are living with cancer about how the changes affect them, patients can find support from others who have had similar experiences. Sharing feelings with other patients can provide an opportunity for hope and understanding. Talking one-to-one with a professional can provide patients a safe space to be open about their feelings and learn new ways to cope, and can help them better understand their own feelings.1 Provide alternatives Appropriate alternatives can be provided for some physical changes, such as in the case of hair loss. In the case of losing one or both breasts, patients should be informed about various prosthesis options, reconstructive surgeries, and other cosmetic solutions. Encourage physical activity Patients should be encouraged to remain as active as possible because physical activity allows them to feel more energetic and once again engaged. Climate also plays a part in how patients feel about body image/selfesteem. In warmer months, nurses may encounter more patients with anxiety about their appearance because of increased outdoor activities when more

Support is needed during the times when patients don’t feel like themselves, especially when changes occur right before their eyes. 26 ONCOLOGY NURSE ADVISOR • JULY/AUGUST 2019 • www.OncologyNurseAdvisor.com

skin is exposed. At the same time, the heat poses another concern. Patients with skin cancers or who are taking certain medications have to be mindful about sun exposure. Concerns such as these tend to be more acute in young adult cancer patients. Covering up changes to the body is a lot easier during colder months; patients are more likely to wear clothes such as turtlenecks, hats, and additional accessories that hide some of the adverse effects treatment has had on their bodies. When speaking to patients and their loved ones, remember to provide as much support as possible. Let the

patients know that they are not alone and that there are people ready and willing to help. Nurses can also let patients know that organizations such as CancerCare provide many free services including counseling and support groups. Patients can call 1-800-813HOPE (4673) to speak with one of CancerCare’s oncology social workers. ■

The Total Patient

following week, and the patients complete the rating scales at each subsequent clinic visit. This allows the researchers to track their scores and ascertain improvement. With the MBC-SEA Program of Care in place, the team found a statistically significant increase in referrals to palliative care and social work, and a subsequent significant decrease in generalized anxiety, distress, and symptom severity. They inferred that the improvement took place because the nurse navigator was able to coordinate the referrals needed to address patients’ needs.

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The day before the meeting the nurse navigator reviews the patients’ charts and all their scores. She reads any notes that the palliative care clinicians have made delineating the patient’s needs. The next day she leads a 1-hour meeting with the whole team. They review a list of patients who will be coming to the clinic. They also take note of patients new to the MBC-SEA program so those patients can be given a packet containing educational and counseling materials. The nurse navigator has flagged some patients on the list as requiring more discussion, and the group discusses those patients further. Approximately 60 to 75 patients with metastatic breast cancer are treated at the clinic each week, but not all of them score high on psychosocial distress. However, for those who do, the staff alerts palliative care, social work, the collaborative practice nurses, and the nurse practitioner of their needs. Patients’ needs are addressed at clinic the

managing-emotions/self-image-and-cancer. Accessed July 26, 2019. 2. Self-esteem. Merriam-Webster website. https:// www.merriam-webster.com/dictionary/selfesteem. Accessed July 26, 2019. 3. Schapmire T, Faul A. Cancer and older adults (65 plus). In: Christ G, Messner C, Behar L, eds. Handbook of Oncology Social Work: Psychosocial Care for People with Cancer. New York, NY: Oxford University Press; 2015:Chapter 72.

Leeann Medina-Martinez is an oncology social worker at CancerCare.

4. Messner C, Kornhauser C, Canosa R. The biopsychosocial implications of the site of the cancer. In: Christ G, Messner C, Behar L, eds.

REFERENCES

Handbook of Oncology Social Work: Psychosocial

1. Self-image and cancer. Cancer.Net website.

Care for People with Cancer. New York, NY;

https://www.cancer.net/coping-with-cancer/

Oxford University Press; 2015:Chapter 11.

“Ultimately these symptoms are going to affect her quality of life and other medical outcomes. If we’re able to better control a patient’s symptoms and she’s better able to handle her finances, then it will be easier for the patient to come in to the clinic and get treatment.” The MBC-SEA team told Oncology Nurse Advisor that they want to give people hope, no matter what stage their cancer is. Ms Reiser added, “I think there has to be hope in every day. We talk about quality of life and helping each person to find the meaning in her life whatever that is for her.” ■

THE TAKEAWAY

“I’d look at what available resources are already being used to evaluate a patient, whether it’s a pain score, or if the patient is coming in more often, maybe she’s having readmissions. If there is no scale to measure anxiety and distress, discuss creating one with other staff,” Ms Reiser advises oncology nurses in local hospital clinics. “And of course, the nurse should discuss these things with the patient, because it’s so important.

Bette Weinstein Kaplan is a medical writer based in Tenafly, New Jersey. REFERENCE 1. Reiser V, Rosenzweig M, Welsh A, Ren D, Usher B. The Support, Education, and Advocacy (SEA) Program of Care for Women With Metastatic Breast Cancer: a nurse-led palliative care demonstration program [published online April 11, 2019]. Am J Hosp Palliat Care. doi: 10.1177/1049909119839696

www.OncologyNurseAdvisor.com • JULY/AUGUST 2019 • ONCOLOGY NURSE ADVISOR 27

ASK A PHARMACIST

Naming of Biologics; TreatmentRelated Taste Changes Why do some of the new cancer drugs have extra letters at the end of their names?

— Name withheld on request

Many of you may have noticed that newer biologic medications (such as monoclonal antibodies) have a 4-letter suffix at the end of their name (eg, caplacizumab-yhdp [Cablivi], which was approved earlier this year). You may also have noticed that these suffi xes are also applied to the end of biosimilar medications (see “Understanding Biosimilar Drugs,” www.oncologynurseadvisor.com/ home/cancer-types/general-oncology/ understanding-biosimilar-drugs/).

Use of these suffixes is mandated by the US Food and Drug Administration (FDA) for new biologic medications including originator and biosimilar biologics. These suffixes are intended to make it easier for health care providers to distinguish between biologic medications made by different manufacturers (as in the case of trastuzumab, which as of this writing has 5 biosimilar products approved by the FDA, as well as the originator producer). By distinguishing between the different manufacturers, the FDA intends to be better able to monitor the safety of these products. Of note, this new naming convention only applies to biologic medications, which is why you do not see this with every newly approved medication. Older biologic medications will not have the 4-letter suffix added, but will continue with their original names. What can be done to help with taste changes during chemotherapy? — Name withheld on request

Taste changes are unfortunately a frequent adverse effect of cancer treatment. The exact incidence varies, with studies reporting taste changes in 15% to 100% of patients undergoing cancer treatment. Some studies suggest that the presence of cancer, particularly advanced cancers, may affect taste perception. Chemotherapy or radiation may also cause temporary changes

lasting up to several months, or even permanent changes in taste. Some strategies to help manage taste changes include eating smaller, more frequent meals; changing food selection to include more fats, sauces, or condiments; sweetening foods; eating blander foods; avoiding nonappealing foods; and use of gum, hard candy, or lemon juice between or before meals. Patients with metallic tastes may find that avoiding metal eating utensils or cooking instruments can also help to reduce this. The National Cancer Institute (NCI) publishes a booklet, titled Eating Hints: Before, during, and after Cancer Treatment (www.cancer.gov/publications/patienteducation/eatinghints.pdf), that includes helpful eating tips for coping with taste changes and other adverse effects that can affect oral intake. Many patients also benefit from working with a registered dietician during cancer treatment. ■

Let us answer your questions! E-mail us at editor.ona@ haymarketmedia.com with your general questions for our expert Advisor Forum and your drug-related questions for Ask a Pharmacist!

Lisa A. Thompson, PharmD, BCOP Clinical Pharmacy Specialist in Oncology Kaiser Permanente, Colorado

28 ONCOLOGY NURSE ADVISOR • JULY/AUGUST 2019 • www.OncologyNurseAdvisor.com