From the Child’s Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care
Abstract
:1. Introduction
2. Technological Advances for Symptom Assessment, Reporting, and Management
3. Assessment of Child Symptoms and Health-Related Quality of Life
The Science of Self and Proxy Reporting
4. Patient-Reported Outcomes Assessment
Patient-Reported Outcomes Assessment with Feedback
5. Patient-Reported Outcomes in Pediatrics
Pediatric Patient-Reported Outcome Instrumentation
6. Novel Tools, Apps, and Toys for Symptom Assessment and Management
6.1. Online or Computer-Based Tools
6.2. Mobile Apps
6.3. Therapeutic Toys
7. Meeting Patients Where They Are: Integration of Palliative Care in the Clinic Setting to Address Symptoms
8. Discussion
Author Contributions
Conflicts of Interest
References
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Self-Report | Parent Report | Clinician Report |
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Aspects of Patient-Reported Outcomes and Feedback Reports | Considerations |
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Choice of measures and outcomes | Outcomes should be meaningful and important to the patient. |
When possible, select standardized measures. | |
Utilize instruments that have been evaluated by members of the target audience. | |
If available and pending context (research vs. clinical), consider use of condition-specific measures which may be more sensitive to intervention effects. | |
Carefully select frequency and timing of assessments to avoid survey fatigue, ensure that assessment points are clinically meaningful and provide results that can be acted upon in future clinical visits. | |
Data presentation | Make displays intuitive using pie graphs and line charts showing trends in function and symptoms. Make reports easily accessible to viewers [58]. |
Present a defined, carefully selected set of data (avoid presenting too much). | |
Present current scores and recent trends. Correlation of trends with recent clinical events (e.g., chemotherapy, hospitalization) is also helpful. | |
Make scores easy to interpret for patients and clinicians. Provide context for clinicians who may not be familiar with symptom or HRQOL scores and meaningful changes in scores. Other strategies to effectively present results to patients and clinicians have recently been described [59,60]. | |
Clinician Use | Make reports available at the point of care in electronic format via website, emailed to clinicians, and incorporated within the electronic medical record. The optimal mode will depend upon the clinical practice. |
Link reports to supportive care guidelines/recommendations for intervention | |
Minimize disruption to the clinical workflow. | |
Implementation | Ensure buy-in from patients/families and clinicians alike when embarking on the study. |
Ensure patient interface is easy to use. | |
Minimize time burden for all users. | |
Ensure processes for responding to reports in a timely manner. | |
Ensure adequate networks, software and properly configured devices for data collection. |
Assessment | Strengths | Weaknesses | Application to PPC |
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Patient-reported outcomes (PROs) |
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Online tools (e.g., KLIK, PediQUEST, MyQuality) [5,80,81,83,86] |
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Mobile apps |
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Therapeutic toys |
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Interdisciplinary Pediatric Palliative Care team |
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© 2018 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
Share and Cite
Brock, K.E.; Wolfe, J.; Ullrich, C. From the Child’s Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care. Children 2018, 5, 45. https://doi.org/10.3390/children5040045
Brock KE, Wolfe J, Ullrich C. From the Child’s Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care. Children. 2018; 5(4):45. https://doi.org/10.3390/children5040045
Chicago/Turabian StyleBrock, Katharine E., Joanne Wolfe, and Christina Ullrich. 2018. "From the Child’s Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care" Children 5, no. 4: 45. https://doi.org/10.3390/children5040045
APA StyleBrock, K. E., Wolfe, J., & Ullrich, C. (2018). From the Child’s Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care. Children, 5(4), 45. https://doi.org/10.3390/children5040045