NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan.

Patients with cancer have widely divergent experiences throughout their care from screening through survivorship. Differences in care delivery and outcomes may be due to varying patient preferences, patient needs according to stage of life, access to care, and implicit or explicit bias in care according to patient age. NCCN convened a series of stakeholder meetings with patients, caregivers, and patient advocacy groups to discuss the complex challenges and robust opportunities in this space. These meetings informed the NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan held on December 10, 2020, which featured a keynote presentation, multidisciplinary panels, and presentations from patient advocacy organizations. This article encapsulates and expounds upon the findings from the stakeholder meetings and discussions during the summit.

Promoting the Shared-Care Model for Adolescent and Young Adults With Cancer: Optimizing Referrals and Care Coordination With Primary Care Providers.

BACKGROUND: The "shared-care model" for patients with cancer involves care coordination between primary care providers (PCPs) and oncologists, with the goal of optimizing survivorship care. However, a high proportion of adolescent and young adult (AYA) cancer survivors do not have a PCP. Study objectives were to increase the percentage of AYAs with a PCP documented in the electronic medical record (EMR) via the use of a best practice advisory (BPA) or "stopgap" intervention; to increase communication between providers by the number of routed clinic notes; and to assess oncology providers' attitudes/beliefs about the model and intervention. METHODS: Data were collected for the 6 months before implementation of the BPA to determine the percentage of AYAs with a PCP and the number of notes routed to providers (time point 1 [T1]). The same data were collected at time point 2 (T2) after the BPA had been implemented for 6 months. Oncology providers participated in an education video module and an online survey at T1 and a survey at T2. RESULTS: At T1, 47.1% of 756 AYAs had a documented PCP in the EMR. At T2, the percentage increased to 55.1% (P<.002). The number of routed notes did not change significantly from T1 to T2. Providers that completed the intervention survey agreed/strongly agreed that the shared-care model is a desirable model of care (T1 = 86%; T2 = 93%) and that a BPA is useful for facilitating PCP referrals (T1 = 76%; T2 = 39%). CONCLUSIONS: This BPA is feasible for increasing the percentage of AYAs with a PCP documented in the EMR and could potentially lead to increased PCP referral and communication among providers for the benefit of long-term survivorship care. Providers generally agree with the shared-care model; however, the BPA implementation requires modification.

NCCN Guidelines Insights: Bone Cancer, Version 2.2017.

The NCCN Guidelines for Bone Cancer provide interdisciplinary recommendations for treating chordoma, chondrosarcoma, giant cell tumor of bone, Ewing sarcoma, and osteosarcoma. These NCCN Guidelines Insights summarize the NCCN Bone Cancer Panel's guideline recommendations for treating Ewing sarcoma. The data underlying these treatment recommendations are also discussed.

Advancing survivorship at a comprehensive cancer center: integrating clinical care, education and research initiatives at Northwestern Medicine and the Robert H. Lurie Comprehensive Cancer Center.

The unprecedented and growing number of cancer survivors requires comprehensive quality care that includes cancer surveillance, symptom management, and health promotion to reduce morbidity and mortality and improve quality of life. However, coordinated and sustainable survivorship care has been challenged by barriers at multiple levels. We outline the survivorship programs at Northwestern Medicine and the Robert H. Lurie Comprehensive Cancer Center that have evolved over two decades. Our current survivorship clinics comprise STAR (Survivors Taking Action and Responsibility) for adult survivors of childhood cancers; Adult Specialty Survivorship for survivors of breast, colorectal and testicular cancers, lymphomas, and leukemias; and Gynecologic Oncology Survivorship. Care provision models align with general, disease/treatment-specific, and integrated survivorship models, respectively. Reimbursement for survivorship services has been bolstered by institutional budget allocations. We have standardized survivor education, counseling, and referrals through electronic health record (EHR)-integrated survivorship care plan (SCP) templates that incorporate partial auto-population. We developed EHR-integrated data collection tools (e.g., dashboards; SmartForm, and registry) to facilitate data analytics, personalized patient referrals, and reports to the Commission on Cancer (CoC). We report to the CoC on SCP delivery, dietitian encounters, and DEXA scans. For the last decade, our Cancer Survivorship Institute has aligned the efforts of clinicians, researchers, and educators. The institute promotes evidence-based care, high-impact research, and state-of-the-science educational programs for professionals, survivors, and the community. Future plans include expansion of clinical services and funding for applied research centered on the unique needs of post-treatment cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: The survivorship programs at Northwestern Medicine and the Robert H. Lurie Comprehensive Cancer Center underscore the imperative for comprehensive, coordinated, and sustainable survivorship care to address the needs of increasing numbers of cancer survivors, with a focus on evidence-based clinical practices, associated research, and educational initiatives.

Piloting a Survivorship Screening Tool in a Specialty Clinic for Survivors of Childhood Cancers.

We piloted a patient-reported screener in a clinic for survivors of childhood cancers to facilitate detection of late effects, psychosocial needs, and distress. The mean number of patient-reported survivorship concerns endorsed per patient was 3.2; most frequent were difficulties with body weight, sleep, work/school, and fertility. Few individuals reported clinically significant distress or fear of recurrence. Electronic health record data produced an average of 2.3 late effects. Administration of a brief screener was effective in identifying additional current medical and psychosocial care needs among adult survivors of childhood cancers in a survivorship clinic.

ACR Appropriateness Criteria® Imaging After Mastectomy and Breast Reconstruction.

Mastectomy may be performed to treat breast cancer or as a prophylactic approach in women with a high risk of developing breast cancer. In addition, mastectomies may be performed with or without reconstruction. Reconstruction approaches differ and may be autologous, involving a transfer of tissue (skin, subcutaneous fat, and muscle) from other parts of the body to the chest wall. Reconstruction may also involve implants. Implant reconstruction may occur as a single procedure or as multistep procedures with initial use of an adjustable tissue expander allowing the mastectomy tissues to be stretched without compromising blood supply. Ultimately, a full-volume implant will be placed. Reconstructions with a combination of autologous and implant reconstruction may also be performed. Other techniques such as autologous fat grafting may be used to refine both implant and flap-based reconstruction. This review of imaging in the setting of mastectomy with or without reconstruction summarizes the literature and makes recommendations based on available evidence. The American College of Radiology Appropriateness Criteria are evidence-based guidelines for specific clinical conditions that are reviewed annually by a multidisciplinary expert panel. The guideline development and revision include an extensive analysis of current medical literature from peer reviewed journals and the application of well-established methodologies (RAND/UCLA Appropriateness Method and Grading of Recommendations Assessment, Development, and Evaluation or GRADE) to rate the appropriateness of imaging and treatment procedures for specific clinical scenarios. In those instances where evidence is lacking or equivocal, expert opinion may supplement the available evidence to recommend imaging or treatment.

The expanding use of third-generation aromatase inhibitors: what the general internist needs to know.

BACKGROUND: Breast cancer patients represent the largest group of adult cancer survivors in the US. Most breast cancers in women 50 years of age and older are hormone receptor positive. Third generation aromatase inhibitors (AIs) are the newest class of drugs used in treating hormone responsive breast cancer. It is often during start of adjuvant hormone therapy that the breast cancer patient establishes (or reestablishes) close follow-up with their general internist. OBJECTIVE: Given the large numbers of breast cancer patients in the US and the increasing use of third generation AI's, general internists will need to have a clear understanding of these drugs including their benefits and potential harms. Currently there are three third generation aromatase inhibitors FDA approved for use in the US. All have been shown to be superior to tamoxifen in disease free survival (DFS) in the treatment of both metastatic and early breast cancers. RESULTS: While the data on side effects is limited, AI (compared to tamoxifen) may result in higher rates of osteoporosis and fractures, more arthralgias, and increased vaginal dryness and dysparuenia. Limited information on their effects on the cardiovascular system and neuro-cognitive function are also available. Patient's receiving adjuvant hormone therapy are generally considered disease free or disease stable and require less intensive monitoring by their breast cancer specialist. CONCLUSIONS: In situations where patients experience significant negative side effects from AI therapy, discussions to discontinue treatment (and switch to an alternative endocrine therapy) should involve the cancer specialist and take into consideration the patient's risk for breast cancer recurrence and the impact of therapy on their quality of life. In some cases, patients may choose to never initiate AI treatment. In other cases, patients may choose to prematurely discontinue therapy even if therapy is well tolerated. In both settings increased knowledge by the general internists will likely facilitate discussions of risks versus benefits of therapy and possibly improve compliance to adjuvant hormone therapy.

Cancer survivorship care: exploring the role of the general internist.

According to the National Cancer Institute (NCI), cancer survivorship encompasses the "physical, psychosocial, and economic issues of cancer from diagnosis until the end of life." Today, one in 30 Americans are cancer survivors. Almost two-thirds have at least one chronic health condition. As the numbers of cancer survivors increase, cancer itself can be viewed as a chronic medical condition. This paper illustrates some of the challenges faced by cancer survivors. We discuss the limitations of current models of survivorship care, including shared care. In addition, we explore how the American Board of Internal Medicine's previously proposed credential of Comprehensive Care Internist could serve to define and integrate the complex needs of adult cancer survivors with the skills and talents of general internists.

ACR Appropriateness Criteria® Stage I Breast Cancer: Initial Workup and Surveillance for Local Recurrence and Distant Metastases in Asymptomatic Women.

As the proportion of women diagnosed with early stage breast cancer increases, the role of imaging for staging and surveillance purposes is considered. National and international guidelines discourage the use of staging imaging for asymptomatic patients newly diagnosed with stage 0 to II breast cancer, even if there is nodal involvement, as unnecessary imaging can delay care and affect outcomes. In asymptomatic patients with a history of stage I breast cancer that received treatment for curative intent, there is no role for imaging to screen for distant recurrences. However, routine surveillance with an annual mammogram is the only imaging test that should be performed to detect an in-breast recurrence or a new primary breast cancer in women with a history of stage I breast cancer. The American College of Radiology Appropriateness Criteria are evidence-based guidelines for specific clinical conditions that are reviewed annually by a multidisciplinary expert panel. The guideline development and revision include an extensive analysis of current medical literature from peer reviewed journals and the application of well-established methodologies (RAND/UCLA Appropriateness Method and Grading of Recommendations Assessment, Development, and Evaluation or GRADE) to rate the appropriateness of imaging and treatment procedures for specific clinical scenarios. In those instances where evidence is lacking or equivocal, expert opinion may supplement the available evidence to recommend imaging or treatment.

Adult survivors of childhood cancer and their parents: experiences with survivorship and long-term follow-up.

To compare the perspectives of adult childhood cancer survivors and their parents in terms of: (1) parental involvement in the survivor's healthcare, (2) thoughts and discussion about their own or their son's/daughter's childhood cancer, (3) concern about the survivor's current health status, and (4) perceived benefits of follow-up care. Forty-two adult survivors and their parents completed a semistructured audio-taped interview via the phone responding to a parallel set of questions. Thirty-eight percent of survivors reported that one of their parents attended the adult survivor clinic with them; in 41% of patient-parent dyads the parent expressed more concern than their child about the child's health status; 45% of the parents reported thinking about the cancer experience more often than their child. The results suggest that some parents continue to worry about their child's health status into adulthood, and in turn may choose to stay involved in their adult child's healthcare. Additional research is needed to understand the survivorship needs of the adult survivor and their family. Including parents in important healthcare decisions and discussions may be a consideration when caring for this unique population of patients.

ACR Appropriateness Criteria® Breast Pain.

Breast pain is a common complaint. However, in the absence any accompanying suspicious clinical finding (eg, lump or nipple discharge), the association with malignancy is very low (0%-3.0%). When malignancy-related, breast pain tends to be focal (less than one quadrant) and persistent. Pain that is clinically insignificant (nonfocal [greater than one quadrant], diffuse, or cyclical) requires no imaging beyond what is recommended for screening. In cases of pain that is clinically significant (focal and noncyclical), imaging with mammography, digital breast tomosynthesis (DBT), and ultrasound are appropriate, depending on the patient's age. The American College of Radiology Appropriateness Criteria are evidence-based guidelines for specific clinical conditions that are reviewed annually by a multidisciplinary expert panel. The guideline development and revision include an extensive analysis of current medical literature from peer reviewed journals and the application of well-established methodologies (RAND/UCLA Appropriateness Method and Grading of Recommendations Assessment, Development, and Evaluation or GRADE) to rate the appropriateness of imaging and treatment procedures for specific clinical scenarios. In those instances where evidence is lacking or equivocal, expert opinion may supplement the available evidence to recommend imaging or treatment.

ACR Appropriateness Criteria® Breast Imaging of Pregnant and Lactating Women.

Breast imaging during pregnancy and lactation is challenging due to unique physiologic and structural breast changes that increase the difficulty of clinical and radiological evaluation. Pregnancy-associated breast cancer (PABC) is increasing as more women delay child bearing into the fourth decade of life, and imaging of clinical symptoms should not be delayed. PABC may present as a palpable lump, nipple discharge, diffuse breast enlargement, focal pain, or milk rejection. Breast imaging during lactation is very similar to breast imaging in women who are not breast feeding. However, breast imaging during pregnancy is modified to balance both maternal and fetal well-being; and there is a limited role for advanced breast imaging techniques in pregnant women. Mammography is safe during pregnancy and breast cancer screening should be tailored to patient age and breast cancer risk. Diagnostic breast imaging during pregnancy should be obtained to evaluate clinical symptoms and for loco-regional staging of newly diagnosed PABC. The American College of Radiology Appropriateness Criteria are evidence-based guidelines for specific clinical conditions that are reviewed annually by a multidisciplinary expert panel. The guideline development and revision include an extensive analysis of current medical literature from peer reviewed journals and the application of well-established methodologies (RAND/UCLA Appropriateness Method and Grading of Recommendations Assessment, Development, and Evaluation or GRADE) to rate the appropriateness of imaging and treatment procedures for specific clinical scenarios. In those instances where evidence is lacking or equivocal, expert opinion may supplement the available evidence to recommend imaging or treatment.

ACR Appropriateness Criteria® Breast Implant Evaluation.

Breast implant imaging varies depending on patient age, implant type, and symptoms. For asymptomatic patients (any age, any implant), imaging is not recommended. Rupture of saline implants is often clinically evident, as the saline is resorbed and there is a change in breast contour. With saline implants and equivocal clinical findings, ultrasound (US) is the examination of choice for patients less than 30 years of age, either mammography/digital breast tomosynthesis or US may be used for those 30 to 39 years of age, and mammography/digital breast tomosynthesis is used for those 40 years and older. For patients with suspected silicone implant complication, MRI without contrast or US is used for those less than 30 years of age; MRI without contrast, mammography/digital breast tomosynthesis, or US may be used for those 30 to 39 years of age; and MRI without contrast or mammography/digital breast tomosynthesis is used for those 40 years and older. Patients with unexplained axillary adenopathy and silicone implants (current or prior) are evaluated with axillary US. For patients 30 years and older, mammography/digital breast tomosynthesis is performed in conjunction with US. Last, patients with suspected breast implant-associated anaplastic large-cell lymphoma are first evaluated with US, regardless of age or implant type. The American College of Radiology Appropriateness Criteria are evidence-based guidelines for specific clinical conditions that are reviewed annually by a multidisciplinary expert panel. The guideline development and revision include an extensive analysis of current medical literature from peer reviewed journals and the application of well-established methodologies (RAND/UCLA Appropriateness Method and Grading of Recommendations Assessment, Development, and Evaluation or GRADE) to rate the appropriateness of imaging and treatment procedures for specific clinical scenarios. In those instances where evidence is lacking or equivocal, expert opinion may supplement the available evidence to recommend imaging or treatment.

ACR Appropriateness Criteria® Evaluation of the Symptomatic Male Breast.

Although the majority of male breast problems are benign with gynecomastia as the most common etiology, men with breast symptoms and their referring providers are typically concerned about whether or not it is due to breast cancer. If the differentiation between benign disease and breast cancer cannot be made on the basis of clinical findings, or if the clinical presentation is suspicious, imaging is indicated. The panel recommends the following approach to breast imaging in symptomatic men. In men with clinical findings consistent with gynecomastia or pseudogynecomastia, no imaging is routinely recommended. If an indeterminate breast mass is identified, the initial recommended imaging study is ultrasound in men younger than age 25, and mammography or digital breast tomosynthesis in men age 25 and older. If physical examination is suspicious for a male breast cancer, mammography or digital breast tomosynthesis is recommended irrespective of patient age. The American College of Radiology Appropriateness Criteria are evidence-based guidelines for specific clinical conditions that are reviewed annually by a multidisciplinary expert panel. The guideline development and revision include an extensive analysis of current medical literature from peer reviewed journals and the application of well-established methodologies (RAND/UCLA Appropriateness Method and Grading of Recommendations Assessment, Development, and Evaluation or GRADE) to rate the appropriateness of imaging and treatment procedures for specific clinical scenarios. In those instances where evidence is lacking or equivocal, expert opinion may supplement the available evidence to recommend imaging or treatment.

Screening for Recurrence and Secondary Cancers.

The population of adult cancer survivors is increasing over time and they are at risk of developing recurrent and secondary cancers, even years after completion of treatment. Post-treatment care of survivors is increasingly the responsibility of primary care providers. Surveillance for recurrence and screening for secondary malignancies related to treatment depend largely on the primary malignancy, treatment regimen, and presence of a hereditary cancer syndrome, such as a BRCA mutation. This article presents surveillance strategies for the most common malignancies.

ACR Appropriateness Criteria® Breast Cancer Screening.

Breast cancer screening recommendations are based on risk factors. For average-risk women, screening mammography and/or digital breast tomosynthesis is recommended beginning at age 40. Ultrasound (US) may be useful as an adjunct to mammography for incremental cancer detection in women with dense breasts, but the balance between increased cancer detection and the increased risk of a false-positive examination should be considered in the decision. For intermediate-risk women, US or MRI may be indicated as an adjunct to mammography depending upon specific risk factors. For women at high risk due to prior mantle radiation between the ages of 10 to 30, mammography is recommended starting 8 years after radiation therapy but not before age 25. For women with a genetic predisposition, annual screening mammography is recommended beginning 10 years earlier than the affected relative at the time of diagnosis but not before age 30. Annual screening MRI is recommended in high-risk women as an adjunct to mammography. The American College of Radiology Appropriateness Criteria are evidence-based guidelines for specific clinical conditions that are reviewed annually by a multidisciplinary expert panel. The guideline development and revision include an extensive analysis of current medical literature from peer reviewed journals and the application of well-established methodologies (RAND/UCLA Appropriateness Method and Grading of Recommendations Assessment, Development, and Evaluation or GRADE) to rate the appropriateness of imaging and treatment procedures for specific clinical scenarios. In those instances where evidence is lacking or equivocal, expert opinion may supplement the available evidence to recommend imaging or treatment.

Models of Cancer Survivorship Care for Adolescents and Young Adults.

OBJECTIVES: To review the literature on adolescent and young adult (AYA) oncology, discuss survivorship models of care, and focus on the unique needs of AYA patients with transition of care from treatment to survivorship. DATA SOURCES: Peer-reviewed literature, workshop summaries, clinical practice guidelines. CONCLUSION: Advancements have been made for AYAs with regard to identifying risk factors from cancer treatment and the need for ongoing follow-up care. Survivors face several unique care transitions. Several models of survivorship care are available for AYAs. IMPLICATIONS FOR NURSING PRACTICE: The responsibilities of survivorship care for AYA patients fall on clinical providers, researchers, the government, advocacy groups as well as the survivors and families themselves. Nurses must remain cognizant and educated on AYA survivorship issues.

Scarring, disfigurement, and quality of life in long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor study.

PURPOSE: Childhood cancer survivors are at increased risk for adverse outcomes and chronic medical conditions. Treatment-related scarring, disfigurement, and persistent hair loss, in addition to their long-term impact on psychological distress or health-related quality of life (HRQOL), have received little attention. PATIENTS AND METHODS: Self-reported scarring/disfigurement and persistent hair loss were examined in 14,358 survivors and 4,023 siblings from the Childhood Cancer Survivor Study. Multivariable models were used to examine associations with demographic and cancer treatment. The impact of disfigurement and hair loss on HRQOL (ie, Medical Outcomes Short Form-36) and emotional distress (ie, Brief Symptom Inventory-18) was examined. RESULTS: Survivors reported a significantly higher rate of scarring/disfigurement compared with siblings for head/neck (25.1% v 8.4%), arms/legs (18.2% v 10.2%), and chest/abdomen (38.1% v 9.1%), as well as hair loss (14.0% v 6.3%). In age-, sex-, and race-adjusted models, cranial radiation exposure ≥ 36 Gy increased risk for head/neck disfigurement (relative risk [RR], 2.42; 95% CI, 2.22 to 2.65) and hair loss (RR, 4.24; 95% CI, 3.63 to 4.95). Adjusting for cranial radiation, age, sex, race, education, and marital status, survivor hair loss increased risk of anxiety (RR, 1.60; 95% CI, 1.23 to 2.07), whereas head/neck disfigurement increased risk of depression (RR, 1.19; 95% CI, 1.01 to 1.41). Limitations due to emotional symptoms were associated with head/neck disfigurement (RR, 1.24; 95% CI, 1.10 to 1.41), arm/leg disfigurement (RR, 1.19; 95% CI, 1.05 to 1.35), and hair loss (RR, 1.26; 95% CI, 1.09 to 1.47). CONCLUSION: Survivors of childhood cancer are at increased risk for disfigurement and persistent hair loss, which is associated with future emotional distress and reduced quality of life. Future studies are needed to better identify and manage functional outcomes in these patients.