Pediatric CAR T-cell therapy patients: The emotional roller coaster

January 18, 2019

CAR T-cell therapy offers pediatric patients hope, but also can bring numerous physical and emotional roller coaster experiences for the family.

As faculty teaching in pediatric nurse practitioner (PNP) and Family Nurse Practitioner (FNP) programs, we are all acutely aware of the need for our students to learn to critically analyze every aspect of the complete blood count (CBC) to identify, as early as possible, any child who presents with abnormalities that indicate a possible diagnosis of acute lymphoblastic leukemia (ALL). This is a critical skill and an essential core competency that is acquired by students through repeated exposures to CBC analysis in all in-class case scenarios and is enhanced through weekly analysis of the CBC on their assigned patients throughout the clinical component of the programs. Prevention of a medical diagnostic error is a major overall program goal.           

Case analysis of ALL also includes referrals and treatment modalities for each child. Children who relapse after initial treatment for ALL always present with greater emotional needs as they again face treatment for the relapse. The article in the January 2019 issue of Contemporary Pediatrics by Drs. Percy, Cooper, and Arwood, CAR T-cell therapy in pediatrics, describes a new treatment for children who have relapsed after treatment for ALL. The therapy offers hope but can also bring with it numerous physical and emotional roller coaster ride-type experiences for the child and the parents. 

Understanding adverse side effects

Drs. Percy, Cooper, and Arwood present innovative and insightful information about treatment options for a subset of pediatric patients for whom standard chemotherapy is ineffective. As I read their article, I gained an understanding of the significance of Chimeric antigen receptor T-cells (CAR T-cells) in the treatment of patients who have relapsed after standard chemotherapy for ALL. I highly recommend reading their article to learn about CAR-T cell therapy and the anticipated physical adverse effects during this new treatment option. NPs and pediatric nurses working in pediatric oncology must clearly understand the signs and symptoms children are expected to display during the treatment and the medical physiological reasons for the anticipated reactions in anticipation of reversing the relapse.

Meeting emotional needs

As I read about CAR T-cell therapy, I was immediately concerned about the emotional stress the child and family experience throughout the course of this therapy.  A major role of primary care PNPs, FNPs, and pediatric nurses is to provide additional support for children, their parents and family members-including siblings-throughout diagnostic and treatment modalities.

A literature search using CINHAL Plus using keyword terms CAR T-cell therapy AND children revealed only 16 published articles since 2017. Many of the articles addressed the topic of CAR T-cell therapy with a few authors including brief information about the emotional impact of the therapy (Callahan, Baniewicz, & Ely, 2017; Smith & Venella, 2017).  All such breakthroughs in science with their respective novel treatments require NPs and pediatric nurses to analyze the impact on NP practice and nursing care. In the case of CAR T-cell therapy, NPs and pediatric nurses must design care plans to enable the child and family to cope emotionally and physically throughout the therapy.

This latest treatment is on the forefront of pediatric health care for children with a diagnosis of relapse after treatment for ALL. As such, it necessitates the conduction of equally visionary nursing research studies to explore the most effective concurrent emotional therapy to be provided prior to, during, and post-CAR T-cell therapy. Overall, our goal should be to attain emotional outcomes for these children and their families as bright as the therapy’s survival benefit.

References:

Callahan, C., & Baniewicz D. (2017). CAR T-cell therapy: Pediatric patients with relapsed and refractory acute lymphoblastic leukemia. Clinical Journal of Oncology Nursing, 21, 22-28.

DOI: 10.1188/17.CJON.S2.22-28

Smith, L.T., & Venella, K. (2017). Cytokine release syndrome: Inpatient care for side effects of CAR T-cell Therapy. Clinical Journal of Oncology Nursing, 22, 29-34. DOI: 10.1188/17.CJON.S2.29-34