Even when patients receive a poor prognosis at diagnosis, their parents and health care team members always hope for the best outcome.
In a study published in 2000 in The Journal of the American Medical Association, Wolfe and colleagues demonstrated that only 46% of parents who had a discussion about the poor prognosis of their child understood that the children were terminal. When the physician and parent recognized a child’s terminal condition earlier, they were more likely to integrate palliative care into treatment.
Physicians tend to be overly optimistic when dealing with prognosis. This can be harmful to patients and families because this information is essential for goal setting and advance care planning.
In adult patients with cancer, the most important predictive factor for prognosis is performance status. It measures how much patients can do for themselves, as well as patients’ energy and activity levels.
Several scales have been developed. The most commonly used are the Karnofsky performance status scale (see Table 1) and ECOG scale. Newer scales, such as the palliative prognostic score and the palliative performance scale, incorporate the Karnofsky index. These scales can be used with older pediatric patients — those aged at least 16 years— but have not been studied or validated in younger patients.
The modified Lansky play-performance scale, developed in the late 1980s, extrapolated the underlying tenet of the Karnofsky scale to assess performance status in children aged 1 to 16 years (see Table 2).
Just as an adult’s performance status was assessed on the basis of role and personal functioning, a child’s performance status is reflected by play activities. The instrument was designed to compare children with their own baselines and not as a measurement of developmental stage. The scale produces quantifiable data that can be used to assess a child with cancer over time.
A group in Brazil recently reported findings of a palliative prognostic score for terminally ill children with cancer (see Table 3). The tool was designed to assess pediatric oncology patients deemed by three pediatric oncologists to have no chance for a cure. When that assessment was made, the patients were automatically enrolled in a palliative care program. The tool examined 60-day survival within that group.
The goal was to provide more reliable information to patients and families to maximize palliative care. A multivariate analysis found four variables to be statistically significant, and patients were stratified into three risk groups for 60-day survival probability.
Although most pediatric cancer patients will survive their disease, a certain percentage will not. Palliative care is an essential component of care for any child with a life-limiting illness. It works best when it is incorporated early and in a gradual fashion.
Prognosis often is overestimated by physicians, and even when poor prognosis is communicated to parents, it frequently is not understood.
The tools described above, although not perfect, can help the health care team accept evidence of poor prognosis in a patient and provide more concrete information to families to help them make informed decisions.