“Health care providers don’t have accurate data about pain,” she said. “And we know that we are the worst when it comes to being accurate about pain. If you asked me how I felt yesterday, and I felt bad yesterday but feel good today, chances are I’m going to tell you I felt great yesterday,” said Dr. Fortier.
The Long-term Trajectory
Psychosocial trauma to children with cancer can be just as detrimental and long lasting as physical pain from cancer treatments. The danger of psychosocial risks to pediatric patients as a result of stressful single-parent households, health and substance abuse problems, and adverse economic conditions is “twice as bad” as it was nearly 20 years ago when Dr. Kazak first had her idea for the PAT.
Psychosocial risks, which include dangerous problems with adherence to treatment and stress-related health complications, “are not adequately addressed as patients come into treatment, and pediatric cancer treatment has gotten far more complex and the treatment protocols have intensified,” she said.
Children with cancer are also increasingly receiving treatment in outpatient settings. In fact, 69% of 530 respondents to Premier Healthcare Alliance’s Spring 2013 Economic Outlook reported expecting an increase in outpatient care driven by health care legislation and mandates.3 Nonpharmacologic approaches to care of children with cancer operate just as well in outpatient settings compared with inpatient settings and “allow oncologists to have tools to help understand QOL while they remotely deliver treatment,” said Dr. Fortier.
Bridging the Gap Between Childhood and Adult Cancer Care
Children with cancer also suffer physical and mental effects from treatment as well as “pain and anxiety related to medical procedures and hospitalizations, physical side effects of treatment, separation anxiety, and psychological distress.”1 Delivering childhood cancer data discovered through methods like Pain Buddy and PAT directly into a pediatric patient’s electronic medical records could begin to help bridge a recognized gap between pediatric and adult care, and also help better prepare general internists and oncologists to treat childhood cancer survivors when they reach adulthood, said Dr. Kazak.
Internists treating childhood cancer survivors in adulthood have reported feeling uncomfortable determining care guidelines for such patients. In a study of 1,110 general internists, more than half reported caring for a childhood cancer survivor and 72% of those “never received a treatment summary” of the childhood cancer survivor under their care.4 “On average, internists were ‘somewhat uncomfortable caring for survivors of Hodgkin lymphoma, acute lymphoblastic leukemia, and osteosarcoma’,” the study concluded.
Better information about pain levels and psychosocial risks in children with cancer, as well as easier access to such data, can go a long way in helping to bridge this gap in the care continuum for childhood cancer survivors. This information will shed important new light on the full arc of cancer diagnosis and treatment from childhood through adulthood, with the net result being improved QOL for all patients with cancer, said Ms. Kirch.
“The transition of child survivorship care in cancer is a tough one. So we are trying to get a long-term disease trajectory,” said Ms. Kirch.
- American Cancer Society. Cancer facts & figures 2014. http://www.cancer.org/Research/CancerFactsStatistics/CancerFactsFigures2014/cancer-facts-and-figures-2014.pdf. Accessed March 17, 2014.
- Hamburg M. Accelerating the development of pediatric drugs for rare diseases. Keynote Speech, Alexandria Summit on Oncology 2013. US Food and Drug Administration. http://www.fda.gov/NewsEvents/Speeches/ucm359103.htm. Accessed March 17, 2014.
- Premier Healthcare Alliance. Providers projecting significant inpatient to outpatient admission shift in 2013 [press release]. April 29, 2013. https://www.premierinc.com/wps/portal/premierinc/public/newsandevents/newsreleases/newsreleases/fab0f976-0f6f-460c-be08-a9f81739e0e5. Accessed March 17, 2014
- Suh E, Daugherty CK, Wroblewski K, et al. General internists’ preferences and knowledge about the care of adult survivors of childhood cancer: a cross-sectional survey. Ann Intern Med. 2014;160(1):11-17.