Prioritizing psychosocial care in the treatment of pediatric catastrophic disease

The needs of children are unique and ever changing. As they move through infancy, early childhood, school age, early and late adolescence, and early adulthood, they experience a rapid rate of physical, mental and emotional growth. Navigating this dynamic developmental landscape can be a complex, evolving process for children and their caregivers. Still, when a diagnosis — whether acute, such as pediatric cancer, or chronic, such as sickle cell disease — enters the mix, a child’s developmental trajectory can fundamentally change along with their needs.

To ensure children and their caregivers are equipped to adapt to the disruption of diagnosis and treatment, clinicians and researchers in the Department of Psychology & Biobehavioral Sciences work to provide care that extends far beyond a cure or long-term chronic illness management.

“We provide wrap-around psychosocial care that focuses on the psychological, social, emotional, spiritual, academic and developmental needs of our patients,” said Valerie Crabtree, PhD, Psychosocial Services vice president, Department of Psychology & Biobehavioral Sciences.

To provide these types of support, St. Jude has developed a proactive approach that integrates and positions psychosocial care of the patient and their caregivers as an essential part of treatment. “We no longer wait until cognitive symptoms emerge or until a patient or caregiver’s quality of life is impacted before we intervene,” said Heather Conklin, PhD, Division of Neuropsychology chief, Department of Psychology & Biobehavioral Sciences.

Integrating psychosocial care as part of proactive treatment

At St. Jude, psychosocial care is provided by an expansive team of psychologists, neuropsychologists, social workers, child-life specialists, teachers, academic coordinators and chaplains, among others. Each care provider assesses aspects of psychosocial health within their areas of expertise; if the patient and/or caregivers would benefit from support or intervention, that provider will follow them until the patient is ready to transition out of care.

Crabtree acknowledges that the integrated, proactive approach St. Jude takes to psychosocial care is unique. To educate other hospitals looking to implement a similar approach, Crabtree and colleagues outlined their organizational structure and their scope of psychosocial care (SPC), which serves as a platform to integrate and prioritize psychosocial care in the treatment of pediatric hematology/oncology conditions. The manuscript was published in Pediatric Blood & Cancer.

Providing support to newly diagnosed patients

A major aspect of the proactive psychosocial care offered at St. Jude is the ability to interface with patients and caregivers shortly after they receive a diagnosis and arrive for treatment. For those facing a diagnosis of childhood cancer, the New Oncology Program in Psychology (NOPP) provides psychological assessment and care at this vulnerable time.

Elyse Heidelberg, PsyD, Department of Psychology & Biobehavioral Sciences, developed NOPP as a clinical program for the universal psychological assessment and support of oncology and stem cell transplantation patients in accordance with the Pediatric Psychosocial Preventative Health Model (PPPHM) and consistent with the Standard for the Psychosocial Care of Children with Cancer and their Families. Within the NOPP framework, psychologists meet with patients and their families around one to two months after they arrive at St. Jude.

NOPP provides patients and caregivers education around the psychological impact of cancer and/or stem cell transplantation therapy and gives tips to manage the social, emotional and behavioral changes that can come with navigating a new reality. To evaluate the impact of NOPP, Heidelberg and team collected caregiver perspectives, the results of which were published in Cancers. The team is using those results to implement improvements to NOPP so new patients and caregivers can continue to receive care that supports all aspects of their experience when facing a cancer diagnosis shock or uncertain stem cell transplantation terrain.

Beyond providing care for patients and caregivers navigating childhood cancer, St. Jude providers have designed psychosocial programs that care for the developmental, emotional, spiritual, cognitive and behavioral health of patients diagnosed with sickle cell disease. Because the trajectory and long-term management for sickle cell disease differ from that of cancer, researchers and clinicians at St. Jude developed the Sickle Cell Assessment of Neurocognitive Skills (SCANS) program, led by Jennifer Longoria, PhD, and Andrew Heitzer, PhD, Department of Psychology & Biobehavioral Sciences. The program monitors the development of neurocognitive functions — such as verbal skills, attention, processing speed, memory and executive functioning — at major academic transitional timepoints (elementary to middle school, middle to high school and beyond). Results from the SCANS assessments inform education and nursing plans, along with a transition plan to adult care, all of which work to preserve a level of neurocognitive functioning that sets patients with sickle cell disease up for long-term success.

Neurocognitive function as a standard for quality-of-life

“Neurocognitive function is a key factor that relates to overall quality of life for children in terms of academic success, which in turn positions them for professional success and social independence,” said Conklin. “As survival rates for children with catastrophic diseases increased, we started trying to balance survival with quality of survivorship, and neurocognition emerged as a key focus to improve quality of life.”

In the quest to preserve neurocognitive function, Conklin emphasizes that it is not only about maintaining what skills exist but also about developing new ones. How this is achieved is highly dependent on the age of diagnosis in children, since the brain is actively developing and making new neural connections, which influences what skill set the team prioritizes for neurorehabilitation and approaches that capitalize on a child’s strengths.

Ashley Fournier-Goodnight, PhD, ABPP-CN, Department of Psychology & Biobehavioral Sciences, works to provide neurocognitive assessments to the youngest patients affected by catastrophic diseases: infants and toddlers. A majority of her work focuses on the neurocognitive impacts of brain tumors in this age group, which she actively assesses as part of the clinical study SJiMB21. She also assists Conklin in implementing a novel intervention to promote optimal cognitive and social outcomes for this youngest age group as part of SJiMB21.

For these patients, Fournier-Goodnight performs bedside assessments, which are tests that look at basic functional skills, including one-step command following, matching shapes, drawing and identifying objects. “Our assessments for these age groups are simple because we want to pick up on minor deficits, and these very young children may not have advanced skills to begin with because of where they are developmentally,” she said. “If we notice changes day-to-day, we might be able to attribute those changes as effects of treatment and offer interventions to preserve functions that already exist or are in the process of developing.”

The major challenge is that infants and toddlers are in such an early developmental phase that some neurocognitive effects of disease and treatment may not be observed until the child ages and misses key developmental milestones. Fournier-Goodnight’s goal is to gather evidence that can provide insights into disease- and treatment-related cognitive effects in the youngest age groups so caregivers can educate themselves and have the proper supports around them as their child grows.

To gather evidence within the context of pediatric brain tumors, she is retrospectively analyzing data from the SJYC07 study (the results of which were published in Lancet Oncology) to see how seizures impact outcomes in young children with brain and CNS tumors. Her analyses will offer insights that can guide prognostic and interventional development to help providers and caregivers support pediatric patients with brain and CNS tumors as they age.  

Even as vast amounts of research and collaborative clinical evaluations guide the development of psychosocial supports to benefit the care and continued health and development of patients and caregivers, Conklin emphasizes that “we have to think about what works for the family in terms of values, social context, family unit and school system to build on strengths and tailor supports.”

A strengths-based approach to psychosocial care

When St. Jude providers consider what options will work best for patients and caregivers, they intentionally focus on their strengths, which also means encouraging a mindset that does not see and approach care for pediatric catastrophic disease as a laundry list of problems to be solved.

“When you’re in a hospital setting, it’s common for things to be pathologized, where everything is seen as a problem to be fixed,” said Crabtree. “One of our focuses in psychosocial services is supporting patients and caregivers with a strengths-based approach. By intentionally focusing on the strengths of the child and the caregivers, we can leverage those strengths to help them during a tremendously difficult experience.”

Heidelberg agrees. “We do so many things to care for the physical body throughout illness that we want to emphasize the importance of caring for mental health as well. Our goal is to normalize and advocate for mental health care and psychosocial support throughout a patient’s journey and to let them know we are here whenever they need us,” she said.

By prioritizing and integrating psychosocial health as a crucial aspect of care and treatment, St. Jude psychosocial providers ensure they take a comprehensive approach that centers the health and well-being of the patient and their caregivers every step of the way.