Offering Healing and Hope in Pediatric Cancer Care

The team of specialists who care for the newly diagnosed young cancer patients at Smilow Cancer Hospital each year are well prepared and ready to meet all their patients’ needs, medical and otherwise.

“We provide support from that first emotionally vulnerable moment when a parent hears the words, ‘Your child has cancer,’ throughout the entire treatment experience, to hopefully when their child rings that end-of-treatment bell,” explained Katie Henry, a licensed clinical social worker for pediatric oncology, bone marrow transplant, and gene cell therapy.

“Our role is to provide support on every level possible in order to help patients and families cope and provide relief whether it is psychosocially, emotionally, financially, or beyond,” said Ms. Henry, who has been with the Pediatric Hematology and Oncology Program on the seventh floor of Smilow Cancer Hospital for nine years.

In addition to the physicians and social workers, the team includes the Yale New Haven Children’s Hospital care staff, advanced practice providers, registered nurses, a psychologist, neuropsychologist, nutritionist, and child life specialists, all of whom have expertise in the medical, social, emotional and educational needs of children and teens.

The goal of this large team, and its diverse specialties, is to ensure that patients and their families never feel alone during the treatment process.

Needs vary as much by a patient—who can range in age from three months to 30—as they do by family situation, level of community support, illness trajectory, and financial and healthcare benefits support. Further, the needs can and do change over the course of treatment.

No one is prepared for a cancer diagnosis, but that reality is a particular challenge for young people and their families and friends. Each member of the YCC/ Smilow team knows their role and how important it is to help pick up the pieces of everyday life that have been scattered by a diagnosis and to help map a new path forward. They work in partnership with organizations including LivFree, Make-a-Wish, and camps like Hole in the Wall and Camp Rising Sun that help provide opportunities that enhance quality of life—museum visits, tickets to the movies or a sporting event, anything to make it feel less like a child is continuously going from home to the hospital and back. The team also works with schools to arrange accommodations if patients are unable to continue in school, and arranges for home tutoring if they are too sick to attend class. And they help to find answers to the many questions that most people have not had to consider:

How can a parent, or caregiver, juggle a work schedule while their child is being treated, or how do they care for other children at home, and what about the financial responsibilities?

What is the best way to communicate with the person who has been diagnosed and how much information is appropriate?

Should or how can a patient continue their education while undergoing treatment?

Although it is relatively rare, the care team also helps when end-of-life and grief support are needed. Just as it is the hardest on family and friends, end-of-life care is also challenging for the YCC/Smilow staff. Research is an important component of that care, including keeping up with the latest palliative care research investigating ways to optimize supportive and palliative care for children with advanced cancer.

Prasanna Ananth, MD, MPH, is an associate professor of pediatrics (hematology oncology) at the Yale School of Medicine, and a pediatric hematologist/oncologist as well as a leading researcher in this field.

Recently named an Emerging Leader in Hospice and Palliative Care by the American Academy of Hospice and Palliative Medicine (AAHPM), Dr. Ananth studies ways to best care for children with advanced cancer.

“The good news is that most pediatric cancers are now curable. About 90% of patients are cured long-term of their cancer,” said Dr. Ananth, who leads the Pediatric Advanced Cancer Experience (PACE) lab at Yale.

“We are involved from the start, once a patient is diagnosed through planning and instituting any treatment and in survivorship or family bereavement. The opportunity to provide this longitudinal care for children and young adults is, in part, what makes our practice both challenging and incredibly fulfilling,” Dr. Ananth said.

Childhood cancer overall is exceedingly rare, with leukemias and lymphomas constituting the most common types that affect children and young adults. Dr. Ananth’s research focuses on evaluating and improving quality of care for children with advanced, or incurable, cancer, using novel approaches to evaluate the quality of care.

“We previously sought input from patients, families, and interdisciplinary clinicians to develop a set of quality measures for children with advanced cancer. We then engaged bereaved families in a study in which we prioritized these amongst a larger set of quality measures. That gave us a strong, family-centered definition of what truly defines high-quality advanced cancer care for children.”

Next steps, explained Dr. Ananth, include devising ways to systematically measure quality, using the prioritized quality measures and novel approaches, for children across the US.

“By including patients and their families in the conversation, we are able to identify gaps in care in real-time and remedy,” Dr. Ananth said, emphasizing that children are not little adults. They have different needs when it comes to support and that means a greater dependence on a care team with diverse skills.

Whether it’s organizing travel for an international patient, arranging for a visit from the music therapist or a clown, or conducting practice-changing research, the care team is in constant communication and collaboration.

“It became imperative to develop pediatric-specific quality measures, as we have learned that healthcare resource use and care preferences for children with serious illness are fundamentally different than that for adults,” said Dr. Ananth.

“Interdisciplinary care is also essential when caring for pediatric patients to ensure that we provide the highest quality care. In the Pediatric Hematology and Oncology Program at Smilow Cancer Hospital, we have the comprehensive, interdisciplinary team necessary to achieve this,” she said.

Even after successful treatment, cancer continues to impact lives for years and there's a Smilow program that is here to help.

The first childhood cancer survivorship program in Connecticut HEROS (Health, Education, Research & Outcomes for Survivors of Childhood Cancer) promotes lifelong health of pediatric cancer patients after their cancer treatment has ended and into their adulthoods.

In the specialty clinic, patients receive detailed cancer treatment summaries and an individualized schedule for future screening for chronic conditions related to their original cancer treatment. And there's a survivorship team—including a pediatric oncologist, nurse practitioner, psychologist, registered dietician, and nurse educator—committed to helping each former patient live their best lives.