Background and Aims

Background: Symptom management is a cornerstone of quality care and has the potential to vastly influence patient experiences. The supportive care needs of children, however, are not well described.

Aims: To describe documentation about assessment and occurrence of symptoms in medical records of children with cancer, and to compare the profile of documented symptoms with child self-report.

Methods

Methods: Twelve weeks of medical records of children (8-18 years) newly diagnosed with cancer were reviewed and data were extracted regarding symptom assessment and occurrence. A second cohort of children attending oncology outpatients completed the electronic Symptom Screening in Pediatrics self-report of symptom bother. They also answered additional questions about other symptoms and the experience of self-report. We evaluated the profile of symptoms recorded as assessed by healthcare providers and self-reported by children.

Results

Results: 1316 symptoms were identified in 3642 assessments. The symptoms most commonly documented by medical and nursing staff were nausea, pain and appetite. Allied health staff most frequently documented fatigue, feeling scared or sad. Forty-eight children completed self-report for the same symptoms and identified fatigue, appetite and taste were the most bothersome. Children were positive about the experience of completing self-report.

Conclusions

Conclusion: This study adds further to the evidence about the importance of obtaining information beyond routine clinical assessment from children themselves. Healthcare providers do not routinely identify all distressing symptoms during clinical encounters. Use of Patient Reported Outcome Measures in children is feasible, acceptable, and empowers children to communicate about symptoms, which can facilitate prompt intervention.

Background and Aims

As more childhood cancer care shifts to the ambulatory setting, strategies to support symptom reporting and ensuring representation of the child’s voice are needed. Child-centric mHealth resources, including apps, may support symptom tracking by actively soliciting the child’s input. This study presents symptoms and daily experiences reported by children receiving cancer treatment during a trial of newly developed game-based symptom-reporting app.

Methods

Nineteen children (12 boys; 7 girls) 6-12 years of age (median 8 years) used a newly developed game-based symptom-reporting app to report their symptoms and daily experiences. The app features a customizable avatar and guides children to enter responses using checklists, free-text responses, and drawing features. Children received a tablet computer and were asked to use the app for at least 5 days between clinical visits. Data were summarized descriptively.

Results

Children completed 87 symptom reports (range 1-12; median 4). All children reported pain on at least one occasion (48 days). Other prevalent symptoms included fatigue (15 children; 41 days), nausea (11 children; 30 days), and decreased appetite (9 children; 18 days). Symptoms were of moderate or greater severity on 26% of occasions and causing moderate or greater distress on 16% of occasions. Activities, including playing, were children’s most frequently named “best thing” about their day. Fifty-seven of 76 responses to “How are you feeling today?” were positive (e.g., “good”); however, 53% of these positive responses were followed by children naming symptoms or aspects of their illness and treatment as what bothered them the most or had made them sick.

Conclusions

The app supported collection of clinically relevant data from children and demonstrated the persistence of symptoms warranting intervention between clinical visits. The study also provided guidance in framing child-centric questions to gain insights into children’s well-being that can be integrated into clinical practice.

Funding: 1K23NR014874-01 National Institute of Nursing Research

Background and Aims

Symptom Screening in Pediatrics Tool (SSPedi) (age 8-18 years) and mini-SSPedi (age 4-7 years) can be used to self-report and proxy-report bothersome symptoms in pediatric patients receiving cancer treatments. There are limitations to reliance on solely child self-report or proxy-report. An approach in which children and parents complete symptom reports together may be useful. The aims of this study are to describe discordance between child self-report and parent proxy-report symptom scores, and to determine how these scores compare to an approach in which reporting is performed together (co-SSPedi).

Methods

We recruited child and parent dyads where children were or had been receiving cancer therapies and were 4-18 years of age. Children and parents completed SSPedi or mini-SSPedi separately. Discordant symptoms were shared with respondents and discussed. Next, the dyad completed co-SSPedi together and were asked which approach they preferred. Discordance was evaluated for each symptom and was defined as a difference of at least 2 points on an interval scale ranging from 0 (not at all bothered) to 4 (extremely bothered).

Results

Of 48 enrolled dyads (child median age, 10.8 years; 54.2% male), 41 (85.4%) had discordance in at least one symptom. There was no clear pattern in discordance by whether the symptom was subjective or objective, nor was there a clear pattern by age group. When a dyad approach was used, more co-SSPedi scores agreed with the original child self-report scores (59 dyads, 56.2%) compared to original parent proxy-report scores (15 dyads, 14.3%) for discordant symptoms. Forty-three (89.6%) dyads preferred to complete SSPedi together.

Conclusions

Discordant reporting of bothersome symptoms was common. When symptom reporting was performed together (co-SSPedi), the dyad approach more often agreed with the original child scores rather than parent scores. Future work should evaluate the psychometric properties of co-SSPedi.

Background and Aims

Despite common reports of disagreements between self-report and proxy-report of symptoms in children receiving cancer therapies, reasons for the inconsistencies and lack of concordance have not been well-explored. The aim of this study is to qualitatively describe reasons for disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report in children age 4 -18 years.

Methods

We enrolled English-speaking child and parent dyads where children (4-18 years of age) were diagnosed with cancer or were hematopoietic stem cell transplantation (HSCT) recipients. Each child and parent separately reported symptoms using self-report or proxy-report Symptom Screening in Pediatrics Tool (SSPedi). We then used semi-structured interviews to elicit reasons for discrepancies in symptom reporting.

Results

We enrolled 12 dyads in each of four age cohorts, resulting in 48 dyads. Forty-one dyads (85.4%) had disagreement in rating the presence or absence of at least one symptom. Themes identified as reasons for disagreement were as follows: (1) Perception - differing perception of symptom or availability or palatability of intervention; (2) Understanding – difficulty orienting to time frame or concept of bother; (3) Lack of communication – including child not acknowledging or talking about experiences; (4) Projection – of how the parent felt, or how they assumed the child would feel; and (5) Discrepancy – including true discrepancy in how the amount of symptom bother that was voiced, by either child or parent, during the dyad discussion did not concur with their rating scores of bother on SSPedi.

Conclusions

We identified themes that explained disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. Some disagreement may be reduced by enhancing communication about symptom reporting between child and parent. Future research should focus on methods of symptom screening that encourage communication between children with cancer and their parents.

Background and Aims

This quality improvement project uses patient vital signs as early warning indicators of clinical deterioration of pediatric cancer patients in Uganda. The Texas Children’s Hospital-Pediatric Advanced Warning Signs (PAWS) used in this project is a reliable and valid published scale that detects early deterioration in hospitalized children.

The aim of this QI project was to determine whether ward nurses are able to use the PAWS to assess hospitalized children with cancer.

Methods

The Plan, Do, Study, Act Cycle was used to conduct this QI project. Simulated case studies were first developed and used to train ward nurses on the PAWS. Chart review forms were developed, and the PAWS expert team independently scored the PAWS on the same patients within one hour of the ward nurse who completed their PAWS assessment. Chart reviews were completed by the members of the PAWS expert team.

Results

PAWS scores were assessed in 36 patients with a mean age of 8.4 years; 20 were females (55.6%) and 16 were males (44.4%). Most children had leukemia or lymphoma 61%, and 39% had a solid tumor. Reasons for hospitalizations included chemotherapy (n = 16, 44.4%), diagnostic work up (n = 12, 33.3%), fever and infection (n = 6, 16.7%), and other symptoms (n = 2, 5.6%). PAWS scores between the ward nurse and expert team significantly correlated with each other (r = .32 -.91, p < .05). Children with AML had higher ward nurse PAWS scores than other diagnoses (p < .02); those admitted for fever and possible infection also had higher PAWS scores but were not significant.

Conclusions

Ward nurses’ PAWS scores significantly correlated with the expert team’s independent assessment of the child. The PAWS is an assessment scale that can be easily taught to ward nurses caring for children with cancer to determine early changes in clinical status.

Background and Aims

Pediatric oncology nurse researchers have created a significant body of evidence for nursing practice worldwide. However, there is a need for up-to-date research from low- and middle-income countries to inform local pediatric cancer nursing care and share best practices from these settings. Access to all current Chinese-language publications on pediatric oncology nursing research is limited due to a language barrier. This study reviewed pediatric oncology nursing research in Mainland China from 2008 to 2018.

Methods

A search was performed for published pediatric oncology research by nurses conducted in Mainland China, using six electronic databases (PubMed, CINAHL, Web of Science, CNKI, Wangfang, and VIP). Articles in Chinese or English were eligible for inclusion. Included articles were evaluated using the Johns Hopkins Nursing Evidence-Based Practice Research Evidence Appraisal for strength and quality of evidence.

Results

A total of 149 articles were included with 119 in Chinese and 30 in English. The annual number of published papers had a slow upward trend (n = 1 in 2008 to n = 23 in 2018). Children diagnosed with leukemia were the most prevalent sample in the publications (50.3%), while Children with a solid tumor were the least frequent sample (6.1%). The majority of studies showed level III evidence (84/149) and were rated as good quality (80/149). The most frequently researched areas were psychosocial care, clinical practice, and psychometric testing, which accounted for nearly 60% of all publications. Few studies were available to improve children's symptoms and caregivers' poor psychological outcomes.

Conclusions

In Mainland China, developing interventions to address the symptoms of children with cancer and caregivers' psychosocial issues based on local nursing research should be prioritized. The synthesized findings of this Chinese review are ready for translation into practice and may serve as guidance for the future of pediatric oncology nursing science in similar settings.