Damian McNamara

November 08, 2013

ORLANDO, Florida — Children with a cancer diagnosis and their parents are more receptive to talking about palliative care at the time of diagnosis than anticipated, suggest preliminary findings from a multi-institutional study.

"People said parents would never be receptive to it, but the overwhelming majority said they would 'definitely' or 'probably' want to meet at the time of diagnosis," lead investigator Deena Levine, MD, from St. Jude Children's Research Hospital in Memphis, Tennessee, told Medscape Medical News.

There is a growing clinical consensus that it is important to provide early palliative care for cancer patients. However, according to investigators, palliative care remains underutilized in pediatric oncology.

Dr. Levine designed a study to determine attitudes about early palliative care. She started the work during a fellowship at Johns Hopkins and the National Institutes of Health, but later transferred to St. Jude's, taking the study with her.

Preliminary results were presented here at the American Academy of Pediatrics 2013 National Conference and Exhibition.

The overwhelming majority said they would 'definitely' or 'probably' want to meet at the time of diagnosis.

Patients 10 to 17 years of age were enrolled from 1 month to 1 year after a cancer diagnosis. To date, 84 child and parent pairs have signed on to participate; the target is 100.

The cancers diagnosed were solid tissue tumors (39.6%), brain tumors (20.8%), high-risk leukemias or lymphomas (20.8%), and low-risk leukemias or lymphomas (18.8%).

The investigators surveyed participants about priorities regarding treatment, expectations for a cure, and willingness to incorporate palliative care consultations at diagnosis, during treatment, and after treatment.

None of the children and only about a third of the parents had heard of the term palliative care before participating in the study.

More than half the children and parents surveyed reported that they would be receptive to the integration of palliative care at the time of diagnosis.

Table. Willingness to Meet Palliative Care Team at Diagnosis

Response Child, % Parent, %
Definitely want 16.7 22.6
Probably want 35.7 35.7
Probably do not want 20.2 16.7
Definitely do not want 1.2 7.1
Unsure 26.2 19.0


Current quality of life was rated good to excellent by 83% of children and 65% of parents. Quality of life was considered important by both parents and children, and both prioritized a cancer cure over quality of life when making treatment choices.

A dichotomy emerged in terms of discussion of illness; in 92% of cases, parents thought they'd had this discussion more than the child did. The investigators found that 62% of parents underestimated their child's pain, and 83% overestimated the success of pain management.

A greater proportion of children than parents reported nausea and diarrhea, common cancer symptoms, and 63% of parents overestimated how well controlled the nausea and diarrhea were.

More detailed analysis of the data is planned after accrual of the parent and child pairs is complete.

"I think it's a good idea to introduce palliative care at the time of diagnosis," said Robert Schoumacher, MD, from Le Bonheur Children's Medical Center in Memphis, who was asked by Medscape Medical News to comment on the study. "Sometimes it's outside our comfort zone. Sometimes we may be concerned about how the family is going to react, and we do get a little pushback."

How physicians address palliative care options with families is extremely important, he added. "Oncologists will tell you that the idea that a patient thinks they will do well is really important to them doing well. You don't want to create a self-fulfilling prophecy that they will not do well," Dr. Schoumacher explained.

Dr. Levine and Dr. Schoumacher have disclosed no relevant financial relationships.

American Academy of Pediatrics (AAP) 2013 National Conference and Exhibition: Abstract 13. Presented October 27, 2013.


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