Assessing Priorities in End-of-Life Care for Children With Cancer

A study of end-of-life care in children with cancer suggests that health care resource use may be of less importance to stakeholders than patient-reported outcomes. The results of this study were reported in JCO Oncology Practice.

“Previous studies suggest that receipt of intensive hospital care near end of life may be associated with decreased quality of life for adults with cancer and complicated bereavement in surviving family,” the researchers wrote in their report. For children, measures to evaluate end-of-life care have been lacking. The researchers sought to identify a consensus from stakeholders involved in childhood cancer care to determine appropriate quality measures (QMs) for assessing end-of-life care in this patient population.

The stakeholders participated in surveys ranking QMs related to end-of-life care for children with cancer. Stakeholders included health care professionals who had end-of-life care experience with pediatric patients, parents who had lost children to cancer, and patient advocates. Respondents ranked the importance of QMs using a 9-point Likert scale over the course of 2 rounds of surveys, with higher numbers reflecting higher importance.

Health care professionals also were asked to weigh in on the feasibility of QMs using a 9-point scale, with higher numbers reflecting greater feasibility of assessment. Median scores for importance and feasibility were calculated, with QMs that had a median importance of 8 or higher being retained.

From a possible pool of 32 stakeholders, 26 were enrolled, with 25 of them participating in both survey rounds. Most stakeholders were health care professionals (21 participants), and 4 were either bereaved parents or patient advocates. Stakeholders were initially presented with a total of 26 candidate QMs, with some QMs added or removed between the 2 rounds of surveys. Ultimately 17 QMs remained in the final set.

QMs that were considered to have low importance were related to health care resource use, even though these measures were considered highly feasible to evaluate. QMs that were rated highly for importance and feasibility involved receiving palliative care consultation before the final 30 days of life and screening for physical symptoms, such as pain and nausea, during the last 30 days of life. Both of these measures received median scores of 9 for importance and 8 for feasibility of measurement.

Some measures were considered important but with a relatively low degree of feasibility for assessment, such as the proportion of bereaved parents receiving bereavement services following a child’s death, the proportion of patients feeling that their needs were heard by the care team, and the proportion of patients whose end-of-life care aligned with documented goals. These 3 measures each had a median importance score of 9 and a median feasibility score of 5 or 6.

“In conclusion, we found that childhood cancer stakeholders prioritize QMs that are most optimally obtained through patient or caregiver reports, perceiving measures of health care resource use as less important overall,” the researchers concluded.

Disclosures: Some study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.