Dava Szalda

Asymptomatic Cardiac Toxicity in Long-Term Cancer Survivors: Defining the Population and Recommendations for Surveillance

Advances in the treatment of pediatric and adult cancer have reduced the mortality rates from these disorders and have led to an ever-increasing population of long-term survivors. Chemotherapy and radiotherapy may cause premature cardiac disease that may be asymptomatic or symptomatic. All patients exposed to chemotherapy with cardiotoxic potential or chest radiotherapy have stage A heart failure and the goal of surveillance and treatment is to prevent progression to stages B-D. Screening strategies, including the use of biomarkers, echocardiography, and expert opinion surveillance and treatment recommendations, are presented.

The Adult Childhood Cancer Survivor and the General Internist: Suggestions for Patient and Provider Education

Childhood cancer survivors (CCSs) are entering the adult health care system in increasing numbers. Cure rates in pediatric oncology now reach 80%, and approximately 1 in 700 young adults is a CCS (1). Longitudinal follow-up of large cohorts of CCSs into adulthood has shown that they are 3.3 times more likely than age-matched control participants to have chronic health conditions (2). These conditions include end-organ damage, such as cardiac, pulmonary, and thyroid dysfunction secondary to cytotoxic treatments, during childhood. Childhood cancer survivors are also at risk for secondary cancer, such as thyroid, breast, and colon cancer, depending on previous exposures and genetic predispositions (2). Given the risk for long-term health challenges after therapy completion, the Institute of Medicine highlighted care of CCSs as a priority (1, 3). Guidelines have been developed for risk-based follow-up of CCSs into adulthood. Specialized survivorship clinics have also been established to coordinate care, facilitate risk-based surveillance, educate CCSs, and generate individualized plans of care depending on prior treatment exposures (4). However, access to and use of these clinics may be limited. The availability of CCS clinics varies by geography, health care system, and survivor characteristics. For example, proximity and access to high-quality long-term follow-up care may be limited for CSSs living outside urban areas because specialized late-effects programs are often maintained in large academic medical centers. Childhood cancer survivors also may not engage in appropriate follow-up care because they fear developing late effects or have a tendency to avoid interactions related to their previous oncologic diagnosis and treatment experience. At their treating institutions, survivors also may not have received the appropriate transition from acute oncologic follow-up to specialized survivorship care (5). Moreover, many cancer survivors experience health consequences from their treatment decades later, when they are no longer being seen in cancer settings. As such, general internists are increasingly asked to manage the ongoing care of CCSs in their practices. Although internists are well-versed in screening, prevention, and care coordination for many chronic illnesses, they are not comfortable in the ongoing treatment of CCSs. In this issue, Suh and colleagues (6) explore current practices of internists caring for CCSs in the United States. They surveyed knowledge, comfort, and preferences among internists dealing with CCSs and concluded that despite some exposure to the care of CCSs, most general internists are not comfortable caring for this population. This survey highlights some of the issues that hinder internists and compromise the care they provide to CCSs. Based on responses to a set of CCS clinical vignettes, internists are not aware of established screening recommendations for CCSs or the free and readily available resources (such as the Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer [7]) to assist them in caring for these patients. Physicians with limited exposure to CCSs have a lower likelihood of gaining experience with them and cannot develop a baseline comfort level for treating this often complicated population. Providers who treat CCSs usually do not obtain a treatment summary or individualized care plan at patient referral, making long-term care coordination difficult. Educational initiatives may be one way to improve the knowledge of general internists. Medical school and internal medicine residency programs have historically focused on the diagnosis and acute treatment of cancer in adults. Thus, most trainees are more adept at handling the acute phases of cancer diagnosis and treatment than caring for long-term survivors of oncologic disease. In academia, CCSs are now part of a group of underserved patients with chronic diseases who do not receive enough representation in medical school and postgraduate training (8). This deficit in medical education puts general internists who treat CCSs in a precarious position. Clearly, education needs to start in medical school and continue into medical residency training. Moreover, modules on survivorship that are part of the recertification procedure would ultimately create a group of internists better prepared to serve CCSs (9). As shown by Suh and colleagues, there is an urgent need to disseminate information about late effects and other complications in CCSs. Education of health professionals, including medical students and internists, is critical. Success is likely if educational policies on treating CSSs are integrated into the medical school curriculum, current training programs, and continuing education. Competency for this material must also be shown by incorporating questions into board and recertification examinations. It would be short-sighted to assert that the internist is solely responsible for long-term follow-up care of CCSs. Survivors are an integral part of the equation. Pediatric oncology teams should prepare CCSs for transition to the adult health care setting. Key components for a successful transition include developing self-management skills; obtaining knowledge of the CCSs diagnosis, treatment exposures, and risk for late effects; and setting realistic expectations about transfer to adult primary care providers (10). Pediatric oncology care providers need to ensure that patients can help advocate for their own care needs throughout their lifetime. This may be accomplished via targeted transition readiness assessments and tools, standard policies and practices around the transition process, and creation and dissemination of a personalized care plan to survivors and primary care providers (10). Successful care of CCSs is a shared responsibility among pediatric oncology care providers, patients acting as their own advocates, and internists who will become the source of ongoing care for this growing patient population. Integration of innovative educational approaches for internists in the established medical school curriculum and beyond and the implementation of thoughtful, patient-focused transition practices will help to eliminate current disparities in the care of CCSs.

Assessing and optimizing health-related quality of life during and after cancer treatment in adolescents and young adults

License. The full terms of the License are available at http://creativecommons.org/licenses/by-nc/3.0/. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. Permissions beyond the scope of the License are administered by Dove Medical Press Limited. Information on how to request permission may be found at: http://www.dovepress.com/permissions.php Clinical Oncology in Adolescents and Young Adults 2014:4 33–40 Clinical Oncology in Adolescents and Young Adults Dovepress

Transitioning From “Sick Kid” to Community Health Worker: Building Better Bridges to Adult Care

* Abbreviations: AYA — : adolescent and young adult CHOP — : Children’s Hospital of Philadelphia YCHW — : youth community health worker The term “transition to adulthood” is used to describe the process that adolescents and young adults (AYAs) with special health care needs experience as they become adults. This process includes not only the often complex transfer of care from pediatric to adult health care systems, but also dynamic changes in social situations, education, employment, recreation, and more. The National Center for Health Care Transition Improvement (Got Transition) outlines 6 core elements for the safe and effective transition to adulthood and transfer of care from pediatric to adult health care systems.1 However, pediatric providers are often wary of transferring their patients to adult care, and adult providers feel unprepared to accept these patients into their practices, leaving patients and families feeling abandoned and confused.2–4 We present a model at Children’s Hospital of Philadelphia (CHOP) for embedding the patient perspective into a multidisciplinary team tasked with addressing transition to adulthood. We fully integrate a former patient at CHOP with personal experience with chronic illness and transition to adulthood as the youth community health worker (YCHW) into a team of physicians, a nurse practitioner, a nurse coordinator, and social workers. The YCHW is tasked with generalizing personal experiences with chronic illness to encourage goal-setting for AYA patients and viewing AYA patients, especially those with special health care needs, in a holistic way for providers. Our transition team coordinates care for patients with medically and socially complex backgrounds to transfer their medical care to adult providers safely while also addressing psychosocial needs such as insurance, post–high school planning, and medical decision-making support. The team also … Address correspondence to Katherine Wu, Roberts Center for Pediatric Research, 11th Floor, 2716 South St, Philadelphia, PA 19146. E-mail: wuk4{at}email.chop.edu

Young Adults With Chronic Illness: How Can We Improve Transitions to Adult Care?

* Abbreviation: Med-Peds — : Internal Medicine/Pediatrics As another busy night unfolded in the pediatric emergency department, I opened the next patient’s chart: Male. Early 20s. Sickle cell disease. I felt a faint tug of familiarity while skimming through his medical record, but it was not until I walked into the room that I placed D.M. as a patient I had treated for a sickle cell pain crisis a few months earlier. Despite the pain he was experiencing at that time, I recalled his excitement as he shared his dreams of entering the medical field. Now, that enthusiasm was replaced with despondence, making him barely recognizable as the young man I knew before. The chief complaint on his chart read “ingestion.” He told me how his previous hospitalization was supposed to be his last pediatric admission after more than 2 decades of pediatric care. He had an appointment scheduled with an adult hematologist in several weeks, but he developed severe pain earlier that morning and went to the adult emergency department for the first time. As a combined Internal Medicine/Pediatrics (Med-Peds) resident who rotates through both settings, I understood just how different and potentially traumatic that experience could have been. In the adult emergency department, he received intravenous fluids and an underdose of opiates for his level of tolerance—after all, … Address correspondence to John C. Berens, MD, Internal Medicine/Pediatrics, University of Pennsylvania, 3400 Spruce St, Philadelphia, PA 19104. E-mail: john.berens{at}uphs.upenn.edu

Cardiac Toxic Chemotherapy and Cancer Survivorship

With remarkable progress in cancer diagnosis and therapy, there are growing numbers of cancer survivors with almost 15 million current survivors in the United States. Because of the recognition that cardiovascular morbidity and mortality play an important role in outcomes of cancer survivors, understanding the unique cardiac needs of survivors and existing evidence for care is essential to cardio-oncology and survivorship care. Cancer survivors are a heterogeneous population with several potentially cardiotoxic exposures and several potential, and not mutually exclusive, complications of therapy (for instance cardiomyopathy and premature atherosclerosis) making uniform guidelines difficult to implement. Using case-based presentations, this chapter will address basic assessment and management of cardiac function and risk in cancer survivors. Best practices for assessment of survivors based on treatment modality (i.e., chemotherapy and/or radiation therapy) and host-related factors (i.e., age at diagnosis and pre-existing risk factors) are described.

Understanding and improving knowledge of cancer survivorship care among college providers.

101Background: Young adult survivor (YAS) engagement in follow-up care is often compromised by competing developmental transitions, including attending college away from home and pediatric oncology team, as well as community providers’ deficits in knowledge related to caring for YAS. The aims were to assess college providers’ basic knowledge of the risks of YAS and related care guidelines and determine whether an educational in-service is an effective platform for increasing college health providers’ knowledge about survivorship. Methods: During Phase 1, 40 college health and office of disability staff members from public and private colleges/universities (90.0% female) completed a 41-question survey on their experiences with students who were YAS. In Phase 2, a one-hour educational in-service was provided to 18 health center medical providers (94.1% female) at a private university. In-service content was informed by the original survey. Providers completed pre- and post-test assessments of knowledge abou...

Use of online survivorship care plans by young adult cancer survivors: Patient characteristics and patient reported outcomes.

55 Background: Young adult survivors (YAS) are at risk for side effects of cancer therapy and poor post treatment self-management relative to older adult survivors (AS). Survivorship care plans (SCPs) have proved feasible to provide education on symptom management, but the characteristics of YAS who utilize SCPs and patient-reported outcomes (PROs) of YAS via SCPs remains unstudied. METHODS Patient-reported characteristics and outcomes of YAS, age 18 to 39 years, who used a free online SCP generator (OncoLife), between May 2010 and May 2012 are reported. PROs of YAS were compared to AS, age 40-70 years, via frequencies and chi-squared analyses. PROs were queried upon generation of SCP based on diagnosis and treatments received. RESULTS YAS (n = 1,445, Mage= 31.5 years) and AS (n = 6301, Mage= 56.3 years) were primarily female (69% vs. 78%), Caucasian (76% vs. 86%) and an average of 2.6 years (range 0-20years) vs. 3.2 years (range 0-46 years) since diagnosis and treatment. Most common diagnoses were breast cancer, testicular cancer, lymphoma, thyroid cancer, and sarcomas in YAS vs. breast, colon, lymphoma, prostate, and lung cancer in AS. Three-quarters (75%) of YAS and 70% of AS generated the SCP themselves with the remaining SCPs generated by health care providers. Less than a quarter (22%) of YAS or AS (18%) reported previously receiving a treatment summary. The most commonly endorsed PROs in YAS and AS were neurocognitive changes and fatigue. Fewer YAS than AS endorsed pulmonary concerns and male sexual side effects. The majority of PROs were reported at similar proportions by YAS and AS (see table). CONCLUSIONS In patients who generated an OncoLife SCP, YAS reported similar rates of treatment-related side effects to those reported by AS demonstrating SCPs as a mechanism to capture and address off-therapy issues for all survivors. [Table: see text].

Patient-generated online survivorship care plans for adult survivors of childhood cancer: Feasibility and patient preferences.

54 Background: With improvements in pediatric cancer treatment, the number of childhood cancer survivors is growing rapidly. Survivorship care plans (SCPs) can provide survivors with necessary information and resources to engage in risk-based follow-up care. Online patient motivated SCPs are promising for adult survivors of childhood cancer with multiple care transitions and the need for self-management outside clinical encounters. METHODS An existing online SCP generator (OncoLife) was adapted to create Smart Adult Living After Childhood Cancer plans for survivors of pediatric Acute Lymphoblastic Lymphoma (ALL) and Hodgkins Lymphoma (HL) by incorporating Childrens Oncology Group Long Term Follow-Up Guidelines into existing information technology logic. RESULTS Adult survivors (n = 20) of pediatric ALL or HL, registered to be seen in radiation oncology or survivorship clinic at the University of Pennsylvania, created an online SCP and completed an online survey. Approximately 80% of patients contacted consented and completed SCP indicating high acceptability; two-thirds (66%) completed the survey. Participants were a median of 35.5 years of age and of 26.5 years since diagnosis. They were 50% female, majority Caucasian (90%), 70% ALL and 30% HL survivors. SCPs took an average of 9 minutes 46 seconds to complete. The majority (95%) of respondents found the SCP generator easy to use, would recommend it to others (85%), and were satisfied with the amount of information received (80%). Ninety percent stated they intended to discuss their SCP with a healthcare provider. Only a third (35%) of survivors stated they had previously received a formal SCP. Seventy percent (70%) stated a written or online plan was the best way to convey health information between visits. Preferences for use of online SCP included: 70% wanting a treatment summary to complete their SCP and 50% wanting personal information to be saved for later use. CONCLUSIONS Online patient-motivated SCPs are a feasible and acceptable way to deliver information to adult survivors of pediatric cancer about long term health risks. Further research into optimal methods for creation, use and health benefits of SCPs is warranted.