Multiple Disciplines, One Mission: The Association of Pediatric Hematology Oncology Educational Specialists (APHOES) is a group of professionals working together to address the educational needs of pediatric hematology and oncology patients. APHOES membership is inclusive of a wide range of disciplines such as nursing, psychology, social work, child life, school and hospital-based education, and medicine.
The mission of the Association of Pediatric Hematology Oncology Educational Specialists (APHOES) is:
To standardize methods, provide support, and create a forum for professionals to address the educational needs of pediatric hematology and oncology patients
To provide opportunities for professionals at various sites to collaborate with like-minded individuals across the country
To encourage and participate in research that strives to improve educational outcomes for children with cancer or blood disorders
The Springfield Advocacy Program gives young teenagers an inside look at the Illinois state government. Students travel to the state capital and learn about the power of advocacy as they meet with legislators to address issues important to long-term cancer survivorship. Students also tour historical monuments and museums. The program also provides travel, accommodations and meals to participants.
The Children’s Oncology Services Education Fund (COSEF) is proud to support the continuing education of cancer survivors with scholarship opportunities. It is their goal that these scholarships will empower cancer patients and survivors pursuing post-secondary education and will ultimately assist them in attaining their personal, professional and educational goals.
Text Book Scholarship Fund Textbook Reimbursement scholarships are available to any pediatric cancer patient or survivor pursuing post-secondary education, who was treated or resides in Illinois, Indiana, Iowa, Michigan or Wisconsin. Students may receive up to $2,000 for books or other course-related materials needed for college or trade school.
The Dirksen Center for Neuropsychology strives to help children, adolescents and young adults identify their strengths and weaknesses in an effort to maximize their learning potential and encourage continued development.
Clinical Assessment: We integrate detailed neuropsychological data with medical, educational, and psychosocial information to create a profile of strengths and weaknesses that our patients, their care providers, their families, and their educators can use to direct and promote growth
Professional Consultation: The Dirksen Center welcomes the opportunity to work with professionals across disciplines. We provide informational talks and workshops on a variety of subjects to educators, community groups, parent groups, hospitals, corporations and treatment providers. We also provide independent medical and educational evaluations and serve as expert witnesses in litigation.
Educational Mapping: Sometimes, there are unique challenges faced by parents or schools, and it becomes difficult to determine how best to support a child within the educational system.
The Dirksen Center is glad to serve as a resource for parents, educators and schools who would like some assistance navigating unfamiliar waters and determining how best to promote academic progress. We work with parents, children, and schools to clearly identify strengths and weaknesses, to identify appropriate educational accommodations, help organize services, and determine the most appropriate setting for a child’s education. We use that information to map an educational plan for growth and success.
This New Jersey-based nonprofit helps children with chronic health conditions achieve their educational and overall life goals through innovative programs and activities. Recently LTLF launched a video-conferencing-based program to help pediatric cancer survivors attend a four-year residential college. LTLF staff will work together with 15 young adult survivors through Skype interviews to develop a goal-setting system tailored to the individual’s educational goals. Collectively, the data gathered will be used to create an online system that can be used by other survivors, to help define the learner’s academic, social, and long-term goals.
The PFC Survivor Portal will give the survivor direct access to their treatment history and follow up recommendations as well as information about possible late complications of therapy. The Survivor Portal is under development. To obtain access to the Survivor Portal please contact your oncology clinic and request that they add your treatment history to the Passport for Care and notify you when the Survivor Portal is available to you.
An end-of-treatment Care Summary, completed by the treating institution, and available to the survivor, that can be securely shared with other healthcare providers at the direction of the survivor. This Care Summary is used to generate the individualized recommendations for each survivor.
Individualized survivor education resources customized to the needs of each patient based on their disease and its treatment. These will be readily accessible to the survivor and their healthcare provider(s). The information provided helps empower the survivor and is designed to facilitate both survivor and healthcare provider follow-up compliance.
Other features that have been identified as important to survivors and healthcare providers, including an online survivor forum and a section for survivor news and stories.
The goal of this initiative is to develop a national resource that will serve as the model for meeting the needs of cancer survivors. The implementation, testing, and modification of the Passport for Care® application will be an iterative process with the objective of producing an effective tool that optimally serves the healthcare information needs of this growing population.
Currently in over 100 other clinics throughout the United States. More than 100 additional Children’s Oncology Group member institutions are undergoing the implementation process and the Passport for Care® application has been used with over 11,000 patients to provide care summaries and guidelines to practitioners in the clinics.
The POST clinic at Hope Children’s Hospital is one of the most extensive pediatric cancer survivors support programs in the Midwest. It has addressed the needs of patients treated for pediatric cancer who have not relapsed in three years. A cornerstone of the program is to provide a general health screening of childhood cancer survivors per standard recommendations for age. The POST Clinic Challenge engages 20 childhood cancer survivors into physical activity, teamwork, and leadership. Children who have completed cancer therapy, voluntarily participate in hourly training sessions once a week for 10 weeks to prepare for a 5K running event.
The STAR (Survivors Taking Action & Responsibility) programs at Children’s Memorial Hospital and Northwestern Memorial Hospital provide state-of-the-art, comprehensive long-term follow-up care to cancer survivors from childhood to the age of eighteen. This program provide services within a clinical setting with an emphasis on patient care, education, and research that addresses the physical and emotional effects of patients’ cancer treatment. Patients enter the STAR program five years after diagnosis, pending a cancer-free diagnosis. This program currently serves approximately 360 patients annually. SurvivorVision has granted funding to finance a social worker’s salary for one year to support this program and conduct research to determine the causes of survivors’ decreasing bone strength that elevates their risk for fractures.
The STAR Program began in 2001 to provide state-of-the-art, comprehensive care to young adult survivors of childhood cancer, beginning at the age of eighteen. SurvivorVision has supported STAR’s research studies directly effecting patient care such as their MRI breast imaging study, special events for cancer survivors, and educational symposiums for survivors, caregivers and healthcare providers.
The program currently manages care to over 250 young adult survivors of childhood cancer – many of whom have ongoing, complex medical and psychological needs. In the last few years, the prevalence of secondary cancers diagnosed in the clinic has increased significantly. This increase reflects the critical need for the long-term follow-up care for survivors of childhood cancer that the clinic provides through education and outreach initiatives.
In 2009, the UIC Cancer Center along with the Departments of Pediatrics and Medicine recently launched the UIC Cancer Survivorship Clinic. They serve patients who are currently in remission and at least five years off therapy. They may have received a diagnosis as babies, children, and adolescents or as young adults (less than 30 years of age). The program serves a diverse patient population especially patients who have limited resources. This new clinic is a place for some of the 10,000 childhood cancer survivors in the Chicago land area to seek evaluation and management of their late effects and learn more about their complex medical history and needs. The program educates patients about these effects.
LIFE AFTER CANCER.
Helping survivors thrive and believe to move forward with their lives.