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.

Transition practices for survivors of childhood cancer: a report from the Children's Oncology Group.

PURPOSE: Pediatric healthcare systems must support childhood cancer survivors to optimize their transition to adult care. This study aimed to assess the state of healthcare transition services provided by Children's Oncology Group (COG) institutions. METHODS: A 190-question online survey was distributed to 209 COG institutions to assess survivor services, including transition practices, barriers, and implementation of services aligned with the six core elements of Health Care Transition 2.0 from the US Center for Health Care Transition Improvement. RESULTS: Representatives from 137 COG sites reported on institutional transition practices. Two-thirds (66.4%) of site discharge survivors to another institution for cancer-related follow-up care in adulthood. Transfer to primary care (33.6%) was a commonly reported model of care for young adult-aged survivors. Site transfer at ≤ 18 years (8.0%), ≤ 21 years (13.1%), ≤ 25 years (7.3%), ≥ 26 years (12.4%), or when survivors are "ready" (25.5%). Few institutions reported offering services aligned with the structured transition process from the six core elements (Median = 1, Mean = 1.56, SD = 1.54, range: 0-5). The most prevalent barriers to transitioning survivors to adult care were perceived lack of late-effects knowledge among clinicians (39.6%) and perceived lack of survivor desire to transfer care (31.9%). CONCLUSIONS: Most COG institutions transfer adult-aged survivors of childhood cancer elsewhere for survivor care, yet few programs report delivering recognized standards for quality healthcare transition programming to support survivors. IMPLICATIONS FOR CANCER SURVIVORS: Development of best practices for survivor transition is needed to help promote increased early detection and treatment of late effects among adult survivors of childhood cancer.

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.

Transitional care practices, services, and delivery in childhood cancer survivor programs: A survey study of U.S. survivorship providers.

PURPOSE: There are limited reports describing transition of young adult childhood cancer survivors (CCS) from pediatric to adult-focused survivorship care. The purpose of this study was to characterize current transitional care practices in the United States. PROJECT DESCRIPTION: An online survey was sent to one preselected respondent at 163 Children's Oncology Group member institutions in the United States. Data were collected about (i) the availability and type of long-term follow-up services for adult CCS and (ii) policies and procedures for transitioning. Logistic regression was used to evaluate factors related to care for CCS. RESULTS: The response rate was 60% (97/163). Eighty-one respondents (84%) represented centers with specialized pediatric-focused CCS programs. Thirty-nine percent (38/97) of programs delivered specialized transitional care for adult CCS. Adult-centered care was delivered in both pediatric (39%, 15/38) and adult oncology clinics (39%, 15/38). The most common perceived transition barriers were lack of available partnering adult providers and adult providers' lack of knowledge regarding CCS. The larger the program in terms of new diagnoses, the more likely they were to offer formal transitional care (<50 vs >200: odds ratios [OR] 20.0; 95% CI 3.2, 100.0, P = 0.004). CONCLUSIONS: A variety of models are utilized for delivering care to adult CCS. Our results suggest that interventions to establish effective partnerships with adult providers on appropriate care of CCS may facilitate expanded availability of these services.

Future health of AYA survivors.

Adolescent and young adult (AYA) oncology patients (ages 15-39) have been identified as a group with healthcare disparities including gaps and challenges in diagnosis, access to care, research, clinical trial participation, and cure rates. Like other patient groups with cancer or other chronic illnesses, disparities can lead to poor future health and outcomes, which is a well-recognized concern within the AYA population. Cancer is the leading disease-related cause of death in this age range. Numerous interested groups including the National Cancer Institute have met to address the research and cancer care needs of AYAs. This review highlights how these gaps in care during and after treatment can affect future health of this population of patients. Access to care, models of survivorship care, and lack of provider education are discussed. Survivorship care and use of guidelines, and promotion of psychosocial support and health behaviors during treatment and beyond are essential to optimizing future health of AYA patients.

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.

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.

Health behaviors of minority childhood cancer survivors.

BACKGROUND: Available data have suggested that childhood cancer survivors (CCSs) are comparable to the general population with regard to many lifestyle parameters. However, to the authors' knowledge, little is known regarding minority CCSs. This cross-sectional study describes and compares the body mass index and health behaviors of African American, Hispanic, and white survivors with each other and with noncancer controls. METHODS: Participants included 452 adult CCSs (150 African American, 152 Hispanic, and 150 white individuals) recruited through 4 childhood cancer treating institutions and 375 ethnically matched noncancer controls (125 in each racial/ethnic group) recruited via targeted digit dial. All participants completed a 2-hour in-person interview. RESULTS: Survivors and noncancer controls reported similar health behaviors. Within survivors, smoking and physical activity were found to be similar across racial/ethnic groups. African American and Hispanic survivors reported lower daily alcohol use compared with white individuals, but consumed unhealthy diets and were more likely to be obese. CONCLUSIONS: This unique study highlights that many minority CCSs exhibit lifestyle profiles that contribute to an increased risk of chronic diseases and late effects. Recommendations for behavior changes must consider the social and cultural context in which minority survivors may live.

Fertility Preservation Preferences and Perspectives Among Adult Male Survivors of Pediatric Cancer and Their Parents.

Purpose: In this study, we set out to determine the preferences, concerns, and attitudes toward fertility preservation of adult male survivors of pediatric cancer and their parents. Methods: We conducted 3 focus groups with a total of 15 male survivors of pediatric cancer (age at diagnosis: mean=14, range: 10-20; age at study: mean=35, range: 25-47) and 2 groups with a total of 7 parents of survivors. Grounded theory methodology was used for the identification and analysis of recurrent themes expressed by survivors and their parents in the course of focus group discussions. Results: Themes most frequently expressed by survivors included concern regarding long-term treatment effects and a retrospective desire for fertility impairment to have been discussed when they were originally diagnosed with cancer. Parental themes included the same hindsight desire, as well as reliance upon the treating oncologist for direction in selecting the course of treatment, and an acknowledgment that input from a specialist in fertility preservation would have been beneficial. Conclusions: Although future reproductive potential was not consistently reported as a source of apprehension when diagnosed with cancer, both survivors and their parents noted it to be a paramount concern later in life. Parents and survivors both reported that fertility preservation discussions should be routinely incorporated in the clinical context of a pediatric cancer diagnosis.

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.

Cancer survivorship practices, services, and delivery: a report from the Children's Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees.

PURPOSE: To describe survivorship services provided by the Children's Oncology Group (COG), an assessment of services was undertaken. Our overall aims were (1) to describe survivorship services, including the extent of services provided, resources (personnel, philanthropy, and research funding), billing practices, and barriers to care and 2) to describe models of care that are in use for childhood cancer survivors and adult survivors of childhood cancer. METHODS: One hundred seventy-nine of 220 COG institutions (81%) completed an Internet survey in 2007. RESULTS: One hundred fifty-five (87%) reported providing survivorship care. Fifty-nine percent of institutions provide care for their pediatric population in specialized late effects programs. For adult survivors, 47% of institutions chose models of care, which included transitioning to adult providers for risk-based health care, while 44% of institutions keep survivors indefinitely at the treating institution (Cancer Center Based Model without Community Referral). Sixty-eight percent provide survivors with a copy of their survivorship care plan. Only 31% of institutions provide a detailed summary of results after each clinic visit, and 41% have a database to track survivor health outcomes. Minimal time required for initial and annual survivorship visits is estimated to be approximately 120 and 90 min, respectively. The most prevalent barriers to care were the lack of dedicated time for program development and a perceived insufficient knowledge on the part of the clinician receiving the transition referral. CONCLUSIONS: Not all COG institutions provide dedicated survivorship care, care plans, or have databases for tracking outcomes. Transitioning to adult providers is occurring within the COG. Survivorship care is time intensive.

Dermatologic issues in adult survivors of childhood cancer.

INTRODUCTION: Common late effects experienced by childhood cancer survivors include: thyroid disturbances, pulmonary compromise, heart failure, and secondary neoplasms. Dermatologic issues have been largely unexplored. METHODS: This descriptive study consisted of an 8 item self-reported questionnaire on dermatologic issues and the Dermatology Life Quality Index. Participants reported dermatological issues that presented anytime after their diagnosis of cancer. Over a seven month period, 166 survivors seen in a specialized program for adult survivors of childhood cancer housed within an adult cancer center received a cover letter either through the mail or in the clinic setting which explained the purpose of the study. A total of 78 survivors completed the study with an average age of 29.7 years (range 19-46) and an average time since their diagnosis of 19.2 years (range 6-46). RESULTS: Dermatological issues were reported by 59.0% of survivors and 50% saw a dermatologist at least once for these concerns. Nine survivors (11.5%) reported a skin cancer and ten (12.82%) were affected by alopecia. Additionally, 26 (33.3%) of survivors reported scars related to cancer therapy as a dermatological issue, and 99% of survivors reporting scars said they did not resolve with time. DISCUSSION/CONCLUSIONS: There are a range of dermatologic issues experienced by adult childhood cancer survivors. In our non-representative sample, 50% of the survivors sought specialized care from a dermatologist for their concern. Additional research is needed to more clearly understand the extent of dermatologic issues and their impact upon quality of life in childhood cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Childhood cancer survivors may frequently seek care from primary care providers. It is important for these providers to be aware of the risks associated with cancer treatments.

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.

Monitoring for cardiovascular disease in survivors of childhood cancer: report from the Cardiovascular Disease Task Force of the Children's Oncology Group.

Curative therapy for childhood cancer has improved significantly in the last 2 decades such that, at present, approximately 80% of all children with cancer are likely to survive > or = 5 years after diagnosis. Prevention, early diagnosis, and treatment of long-term sequelae of therapy have become increasingly more significant as survival rates continue to improve. Cardiovascular disease is a well-recognized cause of increased late morbidity and mortality among survivors of childhood cancer. The Children's Oncology Group Late Effects Committee and Nursing Discipline and Patient Advocacy Committee have recently developed guidelines for follow-up of long-term survivors of pediatric cancer. A multidisciplinary task force critically reviewed the existing literature to evaluate the evidence for the cardiovascular screening recommended by the Children's Oncology Group guidelines. In this review we outline the clinical manifestations of late cardiovascular toxicities, suggest modalities and frequency of monitoring, and address some of the controversial and unresolved issues regarding cardiovascular disease in childhood cancer survivors.

Dermatologic challenges in cancer patients and survivors.

The increased approval of anticancer agents has led to unprecedented results, with improved quality of life and longer survival times, resulting in millions of individuals living with a diagnosis of cancer. Whereas these novel medical, surgical, and radiation regimens, or combinations thereof, are largely responsible for these remarkable achievements, a new, unexpected constellation of side effects has emerged. Most notably, cutaneous toxicities have gained considerable attention, due to their high frequency and visibility, the relative effectiveness of anti-skin toxicity interventions, and the otherwise decreasing incidence of systemic or hematopoietic adverse events. Optimal care dictates that dermatologic toxicities must be addressed in a timely and effective fashion, in order to minimize associated physical and psychosocial discomfort, and to ensure consistent antineoplastic therapy. Notwithstanding the critical importance of treatment-related toxicities, dermatologic conditions may also precede, coincide, or follow the diagnosis of cancer. This review provides a basis for the understanding of dermatologic events in the oncology setting, in order to promote attentive care to cutaneous health in cancer patients and survivors.

Quality of life in adult survivors of childhood cancer.

More children are surviving childhood cancer than ever before; however, little is known about these survivors' long-term quality of life (QOL). This study explores factors that might influence QOL in adult childhood cancer survivors. In a cross-sectional design, 70 of 100 eligible survivors from 1 long-term follow-up clinic completed a QOL and depression symptom measure. Medical information was abstracted from charts. Analysis revealed that survivors with elevated depressive symptoms had significantly lower QOL across all domains than those with lower levels of depressive symptoms. Regression analyses were conducted to further explore relationships. Depressive symptoms appear to be a major factor contributing to adverse QOL outcomes in adult survivors. Additional research should focus on the prevention of depression symptoms and effective treatment modalities for this unique population.

Cancer survivors and infertility: a review of a new problem and novel answers.

Improvements in cancer treatment have changed the way in which cancer is viewed and experienced. However, these same treatments have led to numerous early and late effects, including the loss of fertility. Infertility can influence the biologic and psychologic health of both male and female survivors. Reproductive science can now offer methods to address this concern and provide promising new approaches that may eliminate or mitigate this treatment-related outcome. For current and future reproductive options to serve the needs of survivors more fully, health providers must understand the complexities of infertility as well as their role in delivering answers their patients require. This review will discuss what is known about the causes and experience of infertility among cancer survivors as well as the forms of fertility preservation available.