Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data.

Importance: Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report. Objective: To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure. Design, Setting, and Participants: Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children's hospitals located in Akron, Ohio; Boston, Massachusetts; Birmingham, Alabama; Houston, Texas; Minneapolis, Minnesota; Philadelphia, Pennsylvania; and Seattle, Washington. Data were collected in the hospital, outpatient, and home setting from patients 30 years of age or younger who were receiving pediatric palliative care at 1 of the study sites. Exposures: Analyses were stratified by patients' demographic characteristics, including age, and by whether the patients had received a diagnosis of any of 10 non-mutually exclusive complex chronic condition categories. Main Outcomes and Measures: Twenty symptoms measured via the modified Memorial Symptom Assessment Scale, which scores the frequency and severity of any symptom that is present and provides a total symptom score. Results: Among the first 501 patients enrolled, the median age was 4.1 years (interquartile range, 0.8-12.9 years), 267 (53.3%) were male, and 356 (71.1%) were White. The most prevalent complex chronic conditions included gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions; 438 patients (87.4%) were technology dependent. Parents reported a mean (SD) of 6.7 (3.4) symptoms per patient and a median of 7 symptoms (interquartile range, 4-9 symptoms). A total of 367 patients (73.3%) had 5 or more symptoms. The 5 most prevalent symptoms were pain (319 [63.7%]; 95% CI, 59.4%-67.8%), lack of energy (295 [58.9%]; 95% CI, 54.5%-63.1%), irritability (280 [55.9%]; 95% CI, 51.5%-60.2%), drowsiness (247 [49.3%]; 95% CI, 44.9%-53.7%), and shortness of breath (232 [46.3%]; 95% CI, 41.9%-50.7%). Although older patients were reported by parents as having experienced more symptoms and having higher total symptom scores, variation across condition categories was relatively minor. Patients in the upper 10th percentile of total symptom scores had a median of 12.0 symptoms (interquartile range, 11-13). Conclusions and Relevance: In this cross-sectional study, most children receiving palliative care were experiencing polysymptomatology. An important subgroup of patients frequently experienced numerous severe symptoms. Assessment and management of patients with polysymptomatology are critical aspects of pediatric palliative care.

Proxy assessment of quality of life in pediatric clinical trials: application of the Health Utilities Index 3.

BACKGROUND: With increased cure rates, pediatric oncology protocols increasingly seek to document the impact of treatment on patients' disease, symptoms, and functional capacity. PROCEDURE: Nurses as proxy respondents used the Health Utilities Index 3 (HUI3) to assess the health-related quality of life (HRQL) in twenty-five patients (age 6 years or older) enrolled on a frontline protocol for leukemia. HRQL observations (n = 70) were made at three different time points to coincide with high-dose methotrexate therapy. Additionally, the proxy respondents evaluated the ease of use of the instrument and the data quality. RESULTS: As patients' health status declined, the number of unassessable HRQL items increased. These missing data made scoring cumbersome and precluded calculation of the overall HRQL scores for nearly 50% of the patients. CONCLUSIONS: Use of the provider proxy-assessed HUI3 in pediatric cancer trials may result in a high proportion of missing data. Trials may benefit more from the use of HRQL measures that consider the acuity of the child's illness, domains specific and sensitive to both disease and treatment, and items that can be proxy-assessed independent of input from parent or patient. Evaluations that combine child self-reports with both parent and provider reports may ultimately provide the most reliable and comprehensive perspective on children's quality of life.

Developing nursing care guidelines for children with Hodgkin's disease.

Oncology patients are generally treated on therapeutic research protocols that detail medical treatment. Nursing care is not clearly defined in these protocols; therefore, the need to develop a set of guidelines specifically for nursing care was identified. To further enhance the specialized care that our pediatric oncology patients receive, we developed nursing care guidelines to accompany specific protocols. One of our most highly accruing protocols is designed to treat patients diagnosed with Hodgkin's disease. In an effort to increase understanding of this clinical trial, decrease potential for errors, and improve overall quality of patient care, nursing care guidelines were created. To develop the nursing care guidelines, nurses created a seven-step process: (1) studied the therapeutic protocol, established ongoing interactions with the principal investigator (brainstorming), reviewed benchmarking, (2) created the first draft of the guidelines, compared the formatting of this particular set of guidelines with those previously developed at this setting (drafting), (3) field tested guidelines, (4) revised the guidelines and subjected them to additional field testing, (5) examined the guidelines for implications related to teaching tools, (6) implemented the guidelines through in-services, and (7) developed an evaluation plan with pre- and post-tests that indicated improved disease and treatment knowledge among participating nurses. Potential contributions from implementing nursing care guidelines that parallel therapeutic protocols include more accurate and complete research data collection and a more defined role for nurses in the protocol development process. The guidelines also offer a useful, detailed resource to deliver complex protocol-directed care.