I am both reminded of some sadness and delighted to be discussing the role of primary care in the psychosocial care of children with cancer.
Why sad? One of the most meaningful experiences in my pediatric residency (1971) was the several months caring for Adam, a 2-year-old boy with leukemia. There were limited treatments, severe adverse effects, and little hope. During crisis after crisis, I became close to his family, and I remember to this day standing together around his bed as a Catholic bishop gave Adam his last rites. The family gave me a Rockwell figurine of a pediatrician about to examine an infant, which has been on my desk for nearly 50 years.
Why delighted? The progress in treating cancer in children has been revolutionary, and the evidence base for providing appropriate psychosocial care has grown as well. The overwhelming majority of children are now cured, although many face some ongoing issues and most need long-term monitoring. During the acute phase of treatment, children with cancer will be treated in specialized centers where hopefully expert mental health clinicians will meet the comprehensive, psychosocial needs of the child and family. The Psychosocial Standards of Care Project for Childhood Cancer’s (PSCPCC) consensus-based “Standards of Psychosocial Care of Children with Cancer and Their Families” define a high-quality framework that every child and family coping with cancer deserves.1 After remission or “cure,” many of these children and families will return to their primary care pediatrician. How should the primary care pediatrician provide comprehensive care to a child and family after the acute phase of cancer treatment?
First-line care after cancer treatment
The primary care pediatrician should appreciate that a child with cancer has undergone a very difficult experience that includes: hearing of their cancer diagnosis; anxiety about treatments (with the potential for posttraumatic stress); developmental-specific fears of death; a serious disruption in every area of functioning; having been part of a highly stressed family; and having varying formulations of what happened and why. These formulations will vary with age and circumstance; with the narrative the child and family have created about their illness (or what the child understands about their illness); be influenced by what was overheard in some office or in rounds, be embellished with guesses and family myths; and be compounded by the guilt almost every parent feels when any harm befalls their child with little regard for the scientific explanation.
There will be key developmental points—young child to pre-teen, pre-teen to adolescent, adolescent to young adult—where questions that were answered before will reemerge at a more sophisticated level and where the answers will be newly relevant to school, career options, romance, and marriage, as well as to long-term healthcare. Families will have a parallel set of concerns starting with a sense of loss of what was hoped for with a totally healthy child; the realization that certain expectations may be delayed or lost; thoughts that siblings may be at risk2; and concerns that there will be ongoing marital or financial issues.