The Oncology Clinical Research team consists of nine individuals focused on coordinating research in oncology, neuro-oncology, stem cell transplant and the late effects of cancer treatment. The CCBD has been designated as one of 20 Phase I (clinical trials that test new drugs) institutions through the Children’s Oncology Group since 2001. A dedicated clinical research nurse coordinates the COG Phase I studies, CCBD physician-sponsored and pharmaceutical-sponsored studies.
The Hematology Clinical Research team consists of five individuals focused on coordinating research in sickle cell anemia, hemophilia, thrombosis and general hematology (ITP, hereditary spherocytosis, neutropenia, etc). Additionally, there are two dedicated full-time clinical research nurses for the hematology studies.
These research teams play an instrumental role as members of the multidisciplinary medical care team. The research staff coordinate clinical trials including extrapolating treatment-related data from medical records, reporting data to trial sponsors and obtaining all required diagnostic and research specimens. The National Institutes of Health (NIH), COG, pharmaceutical companies and CCBD physicians sponsor many of the clinical trials. The clinical research team is responsible for submitting and maintaining Institutional Review Board (IRB) approval for all research, developing informed consent documents and recording treatment and outcome information for all patients enrolled. The Food and Drug Administration, the sponsors and the IRB may review all records to assure the quality and accuracy of the research documentation. The team is currently responsible for data collection of approximately 195 active research studies.
A registered dietitian from the Children’s clinical nutrition department is dedicated to the Center for Cancer and Blood Disorders. The CCBD dietitian works closely with both medical and support staff to ensure patients receive adequate and appropriate nutrition, including oral intake, total parenteral nutrition (TPN) and tube feedings. The dietitian assesses patients for nutritional status, evaluates nutrient intake, and makes appropriate recommendations for nutritional intervention. The dietitian spends time educating and counseling patients and families regarding individual nutritional issues related to various treatment side effects.
The pharmacy department at Children’s maintains a hematology-oncology satellite pharmacy in the CCBD that is staffed by four pharmacists and one pharmacy technician. The satellite services the needs of both the inpatient and outpatient hematology and oncology patients. All chemotherapeutic medication is made and verified by staff who are trained and specialized in pediatric hematology-oncology pharmacy. The pharmacy team is available from 7 a.m. to 7 p.m., seven days a week. A dedicated pharmacist follows all CCBD hospitalized patients to insure appropriate medication usage and interacts with the medical staff to facilitate optimal patient care. The pharmacy team is involved with research including institutional, national and phase I studies conducted at the CCBD.
The social work department at Children’s plays an instrumental role in assisting patients and families with their health and emotional needs during and following treatment. As part of our multi-disciplinary approach towards caring for children with cancer and hematologic disorders, social work services are extended to all patients and their families. A social worker is assigned to each family from the time of initial diagnosis. The same worker follows each family through all phases of treatment, both inpatient and outpatient. The social worker is the one member of the team responsible for attending to the social and emotional needs and practical concerns of not only the child, but the entire family. The demands on each family are extraordinary, as parents cope with the needs of their sick child, their other children, their jobs and other responsibilities, as well as practical concerns such as insurance, increased financial demands, and lengthy hospitalizations and frequent clinic visits. The social worker can help each family handle their own unique responses and circumstances to enable them to cope with the crisis of cancer. The social workers utilize a number of resources for children with life-threatening diseases such as cancer and many hematologic disorders and coordinate with annual summer camps for children with hemophilia, sickle cell disease and cancer.
Child life specialists help meet the emotional and developmental needs of infants, children and teenagers at Children’s. The child life program provides opportunities for children to continue normal growth and development while in the hospital. Trained staff provide developmental care for infants, group play activities for socialization and individual support in an effort to help children cope with their healthcare experiences. The program recognizes the value of play as a tool for coping with stressful situations and as a basis for learning. Child life specialists help prepare patients and their families for hospital experiences by providing health education and explaining medical procedures and tests in a simple, honest and age-appropriate manner.
Four child life specialists and two child life assistants work within the CCBD. The specialists help minimize the impact of illness on the child’s normal growth and development by utilizing interventions such as therapeutic play, medical play and procedure preparation. They work with patients and siblings to help promote understanding and positive coping with illness, hospitalizations and invasive medical procedures. Child life specialists also work with the child’s school to insure continued education and encourage peer support.The outpatient child life assistant position has been a part of the CCBD since 2002 thanks to a grant by the Children’s Cancer Fund. The child life assistant coordinates various activities and games in the outpatient unit waiting area for patients and siblings while creating a more positive clinic environment and providing important distraction opportunities.
Music therapy is the clinical and evidenced-based use of music interventions to accomplish individualized goals within a therapeutic relationship. As patients in the hospital, children often experience fear and anxiety or a general lack of control. Music therapy addresses these and other needs by providing opportunities for patients to make independent choices and engage in activities that encourage emotional expression.
In the CCBD, music therapy sessions are designed to help patients and their families cope with hospitalization and improve patients' physical, psychological and emotional health. Services include individual and group sessions with patients and/or family members. Professional, trained music therapists use a variety of musical experiences, including songwriting, playing instruments, lyric discussion, and singing to promote self-expression and to create a therapeutic relationship with the patient and/or family...
The pastoral care department at Children’s encourages children and families of the Center for Cancer and Blood Disorders to draw upon faith throughout diagnosis and treatment. When children come to the hospital, they and their families have many questions. Why is my child ill? Why did this happen to our family? What did I do wrong? Chaplains listen to these questions and offer spiritual guidance, emotional support, hope and compassion. Additionally, chaplains provide daily devotions, Sunday worship and seasonal services. Children’s Medical Center is accredited through the Association for Clinical Pastoral Education, Inc. The CCBD pastoral care staff includes a chaplain administrator, who is responsible for the ministry and the supervision of a chaplain resident and a part-time chaplain intern in the CCBD. Chaplains work together with doctors and staff to assess the pastoral needs of patients and families and help them access and utilize their own spiritual resources to help them meet those needs.
Language Access Services
Because the Center for Cancer and Blood Disorders treats a significant number of patients who speak primarily Spanish, verbal interpretation and written translation is an important aspect of the care that is delivered. Since 2005 these services are provided primarily by a CCBD-designated interpreter managed through the Children's Language Access Services Department. To supplement patient and parent education, documents used for family knowledge, training or information is available also in Spanish.
The CCBD has a dedicated Pediatric Psychologist who evaluates the emotional, behavioral, and cognitive needs of pediatric patients receiving care in the medical setting. The Pediatric Psychologist helps families address such issues as managing the stress of diagnosis and treatment, address the child’s emotional and behavioral concerns, and finding solutions to their child’s individual needs. In this role, the Pediatric Psychologist also provides support to medical services as they manage complex patients and families with often challenging psychosocial issues. The Pediatric Psychologist helps pediatricians and pediatric sub-specialists identify and diagnose psychiatric problems, evaluate and start psychiatric treatments, determine the appropriate level of psychiatric care needed, and arrange for community-based follow up after discharge. The Pediatric Psychologist is also a member of the interdisciplinary consultation team from the Center for Pediatric Psychiatry and Mental Health. The psychiatric consult team utilizes psychiatric physicians, psychiatric nurse practitioners, psychologists, family therapists and play therapists to recognize and address the complexities that are often inherent in the patients served. The clinicians provide individualized diagnostic testing, brief therapy, play therapy and parent training groups (filial therapy). All patients and families seen at Children's have access to the psychiatric consultation services.
The Center for Cancer and Blood Disorders has partnered with the Children's pain management team to provide the latest advancements in pain therapy. The pain management service follows many patients in the center who have acute and chronic pain, and may require interventions beyond standard acute management strategies. Specialized drug therapies, including long-acting opioids and pain management technologies, are initiated. Non-pharmacological treatments are utilized as adjuncts to pain medications.
The pain management service includes two registered massage therapists for inpatient referrals. Massages have been beneficial for oncology patients with bone pain, stem cell transplant patients, and patients with pain related to their sickle cell disease. Massage is also used at times for management of anxiety, sleep disturbances and general relaxation.
The Center for Cancer and Blood Disorders has been an active participant in the hospital's Pain Free initiative aimed to decrease anxiety and fears related to procedural pain and create a holistic approach to pain management. The CCBD has been a leading site for new and innovative strategies in pain management and partners with the pain service to assure optimal pain control for all patients.