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Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review
Daniele Rusconi1, Ilaria Basile2, Flavia Rampichini3
1Urologic Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.
Insights
Electronic patient-reported outcome measures (e-PROMs) empower children with cancer in palliative care to voice their needs and engage in end-of-life decisions. These innovative tools improve symptom management and communication, ensuring child-centered care.
Area of Science:
- Pediatric Oncology
- Palliative Care
- Digital Health
Background:
- Child-centered care is crucial in pediatric palliative oncology.
- Electronic patient-reported outcome measures (e-PROMs) are emerging tools in this field.
- Understanding e-PROM innovations and their impact is essential.
Purpose of the Study:
- To map innovations in e-PROMs for pediatric palliative oncology care.
- To assess the impact of e-PROMs on symptom management.
- To evaluate the effect of e-PROMs on communication with healthcare professionals.
Main Methods:
- A scoping review was conducted using the Arksey and O'Malley framework.
- Searches included CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science.
- Inclusion criteria focused on children (0-18 years) with cancer in palliative care using e-PROMs.
Main Results:
- Twelve articles were synthesized: 10 quantitative, 1 qualitative, and 1 mixed-methods.
- Findings covered technological innovation, symptom monitoring/management, and communication.
- e-PROMs were categorized by innovation, impact on care, and communication effects.
Conclusions:
- e-PROMs empower children in palliative oncology to express perspectives and engage in care.
- Flexible, age-appropriate e-PROMs, including play-oriented apps, integrate into children's lives.
- These tools enhance symptom understanding and management, ensuring child-centered care and preserving childhood.
Abstract:
Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. Methods: A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0-18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. Results: Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. Conclusion: e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care.
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