BACKGROUND: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple questions to be systematically given to children and their caregivers.
OBJECTIVE: The primary objective was to determine the percentage of eligible children and caregivers exposed to the questions that were able to complete the assessment. Secondary objectives included documenting the symptom burden at the time of consultation, evaluating the level of agreement in symptom reporting between children and caregivers, as well as between children/caregivers and the referring medical team.
DESIGN: A series of systematic questions were presented to all caregivers (if present) and children who were seven years of age or older at the time of initial consultation with pediatric palliative care.
RESULTS: One hundred twenty-two consecutive children/caregiver dyads were given the survey. One hundred seven of 108 (99%) eligible caregivers and 83 of 97 (86%) eligible children completed the survey. Lack of appetite (child—72/83, 87%; caregiver—89/107, 83%) and pain (child—71/83, 86%; caregiver—86/107, 80%) were the most commonly reported symptoms. Caregivers reported irritability (p = 0.005) and nervousness (p < 0.001) more frequently than children. Referring medical teams significantly underdiagnosed psychological and other less clinically evident symptoms such as lack of appetite, fatigue, and sleep disturbance (p < 0.001).
CONCLUSIONS: Our series of questions is easy to complete by children and caregivers. Systematic symptom assessment of children with cancer referred to palliative care should become a true standard of care.
CONTEXT: Optimal benefits from Palliative Cancer Care (PC) are achieved when first consults (PC1) occur early, in the outpatient setting. Late PC1, like those in the intensive care unit (ICU), limit these benefits.
OBJECTIVES: To determine the proportion of PC1 over time in the outpatient, ICU, and inpatient non-ICU settings. We also examined patients' baseline characteristics and the timing of PC access (from PC1 to death) by the setting of PC1.
METHODS: We retrospectively evaluated consecutive cancer patients' records at our cancer center to ascertain the annual number of PC1 and its distribution across settings (2011 to 2017). ICU PC1 (n=309) and a random sample of an equal number of outpatient and inpatient non-ICU PC1 were reviewed to retrieve patients' characteristics and death date.
RESULTS: PC1 total annual number increased by 58% from 2011 (n= 2286) to 2017 (n= 3615). We found a significant decrease in the proportion of ICU PC1 (from 2.3% in 2011 to 1% in 2017, p<0.001). There were no significant changes in the proportion of PC1 at outpatient versus inpatient settings (p= 0.2). Hematologic cancer patients were more likely to have an ICU PC1 (p<.001). Median survival (months) was 7.7 (6.3 - 9.7), 3.4, (2.4 - 4.5), and 0.1 (0.1, 0.1), for outpatient, inpatient, and ICU respectively (p<.01).
CONCLUSIONS: PC1 total annual number has increased and the proportion of PC1 at ICU, a very late clinical setting, is decreasing. Further efforts are needed to integrate PC in hematologic cancer care.
BACKGROUND: Methadone is an attractive medication for treating children with advanced cancer with pain as it is the only long-acting opioid available as a liquid. However, it is not frequently used due to concerns about potential toxicities and side effects.
OBJECTIVE: Evaluate the efficacy and safety of methadone as the first long-acting opioid in children with advanced cancer.
DESIGN: Retrospective chart review of 52 consecutive patients referred to Pediatric Supportive Care for pain management started on methadone as their first long-acting opioid. Data collected at baseline, follow-up visits #1 (F1) and #2 (F2) included child and parent-reported outcomes for various physical and psychological symptoms, opioid side effects and other clinical data. Symptoms were rated on a 0 (not at all) to 4 (a lot) scale.
RESULTS: Pain (mean ± standard deviation [SD]) scored by the child was 3.6 (±0.6)/4 at baseline and 1.8 (±1.1)/4 at F1 (p < 0.0001). Compared to baseline, pain scored by the child at F2 was 1.2 (±1.3)/4 (p < 0.0001). Pain scored by the parent was 3.5 (±0.7)/4 at baseline and 1.4 (±1.3)/4 at F1 (p < 0.0001). Compared to baseline, pain scored by the parent at F2 was 1.0 (±1.2)/4 (p < 0.0001). Thirty-three (70%) patients at F1 and 23 (79%) patients at F2 did not need a change in dose of methadone. No cardiac arrhythmias or opioid neurotoxicity was observed.
CONCLUSIONS: Initiation of methadone was effective and safe as the first long-acting opioid in children with pain.