Dr. Jellinek is Professor of Psychiatry and of Pediatrics, Harvard Medical School, Boston, and Chief Executive Officer, Community Network, Lahey Health System, Burlington, Massachusetts.
The progress in treating cancer in children has been revolutionary, and the evidence base for providing long-term psychosocial care for their families has grown as well.
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?
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.
Most children and families are impressively resilient and most pediatricians will follow only a few children with cancer in their career. From the pediatrician’s perspective, each child and family is unique and requires an open, curious, and supportive approach.
Children and families likely will share many of the emotional and medical highs and lows of their experience, and these pediatric outpatient visits will be more intense than most. Although there is no substitute for the joy of remission, cure, and survival, the experience of diagnosis, treatment, and related stress is still part of the child’s and family’s life. During and after these visits, pediatricians should be active, self-reflective listeners. If the visit setting feels safe, they will likely hear some difficult emotions, worries, and speculations.
One of the strongly recommended Standards is number 3: “Long-term survivors of child and adolescent cancers should receive yearly screening for: a) adverse educational and/or vocational progress, social and relationship difficulties; b) distress, anxiety, and depression; and c) risky health behaviors.” Translating this into practice, the pediatrician might use appropriate screening questionnaires recommended by the American Academy of Pediatrics Bright Futures (Pediatric Symptom Checklist, PHQ 9, CRAFFT),3 and neuropsychological testing if indicated for school or vocational questions. Even more important than these questionnaires is that the pediatrician develop a relationship with the family and child/adolescent. This relationship should develop using slightly longer office visits and with informed, empathic conversations wherein the child/adolescent and parents each feel that they have a safe place to talk.
Annual visits might include screening questionnaires and inquiring about how the child and family are functioning in the major areas of life-school, friends, activities, family life and emotional state-and, for the parents, add work, financial recovery if relevant, and marital harmony. The pediatrician should be very open and even prompt questions based on knowledge of the family, age of the child, the treatment, and any relevant longer-term consequences. This is a process that knits together visits over time.
Being a primary care pediatrician for children and families after cancer treatment is not easy work. However, providing care that combines medical knowledge with a long-term relationship is a service to the family as well as professionally and personally most gratifying.
1. Wiener L, Kazak AE, Noll RB, Paternaude AF, Kupst MJ. Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatr Blood Cancer. 2015;62 suppl 5:S419-S424. Available at: http://onlinelibrary.wiley.com/doi/10.1002/pbc.25675/full. Accessed January 22, 2018.
2. Yu Y, Cnattingius S, Olsen J, et al. Association of mortality with the death of a sibling in childhood. JAMA Pediatr. 2017;171(6):538-545.
3. American Academy of Pediatrics. Developmental, Behavioral, Psychosocial, Screening, and Assessment Forms. Bright Futures Tool and Resource Kits. Available at: https://brightfutures.aap.org/materials-and-tools/tool-and-resource-kit/Pages/Developmental-Behavioral-Psychosocial-Screening-and-Assessment-Forms.aspx. Accessed January 22, 2018.