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Implementing Health-Related Quality of Life Assessment in Pediatric Oncology: A Feasibility Study
Mikaela Doig1,2,3, Sophie Jessop2, Jordan R Hansford2,3,4
1School of Allied Health and Human Performance, Adelaide University, Adelaide, South Australia, Australia.
Insights
Implementing an electronic patient-reported outcome measure (ePROM) platform for assessing health-related quality of life (HRQoL) in pediatric cancer patients was feasible and well-received. The study highlights the usability and acceptability of this digital approach in routine clinical care.
Area of Science:
- Pediatric Oncology
- Health Informatics
- Quality of Life Research
Background:
- Growing interest in integrating health-related quality of life (HRQoL) and patient-reported outcome measures (PROMs) into pediatric cancer care.
- Need for evaluating digital tools to streamline HRQoL assessment in this population.
Purpose of the Study:
- To assess the feasibility, acceptability, and usability of an electronic PROM (ePROM) platform for measuring HRQoL in children with cancer.
- To evaluate the integration of ePROM data into clinical workflows.
Main Methods:
- A 12-month, multicenter, mixed-methods study involving children (5-12 years) with cancer, parents, and clinicians.
- Web-based completion of age-appropriate PedsQL™ Generic Core Scales (child and parent-proxy).
- Evaluation surveys, including the System Usability Scale (SUS), administered to parents and clinicians.
Main Results:
- High completion rates for PROMs (85% overall; 88% for children, 62% for parents).
- Excellent usability indicated by a mean SUS score of 88.6.
- Parents found the platform child-friendly and effective in capturing relevant HRQoL aspects.
Conclusions:
- Routine HRQoL assessment via an ePROM platform is feasible, acceptable, and usable for pediatric cancer patients (aged 5-12).
- Preliminary evidence of clinical utility warrants further implementation-effectiveness studies.
Background:
There is growing interest in embedding health-related quality of life (HRQoL) assessment and patient-reported outcome measures (PROMs) within clinical cancer care. This study evaluated the feasibility, acceptability, and usability of implementing an electronic PROM (ePROM) platform to measure HRQoL in children with cancer.
Procedure:
A multicenter mixed-methods feasibility study was conducted over 12 months with children aged 5-12 years diagnosed with cancer, their parents, and their clinicians. Participants completed age-appropriate child self-report and parent-proxy report pediatric quality of life inventory (PedsQL) generic core scales using a web-based platform at key clinical milestones. Clinicians were provided with access to HRQoL outcomes. Parents and clinicians completed evaluation surveys, including the system usability scale (SUS), at 6 months to assess usability and acceptability.
Results:
A total of 91 participants were enrolled, including 37 children, 37 parents, and 17 clinicians. Overall, 85% of all administered PROMs were completed by at least the child or parent respondent, yielding a total of 175 PROMs. Children completed 88% of scheduled PROMs, whereas parents completed 62%. Evaluation surveys were completed by 17 parents and 6 clinicians. The mean SUS score was 88.6 (standard deviation [SD] = 11.5), indicating high usability. All responding parents rated the platform as child friendly and said that the PROM captured important aspects of their child's HRQoL.
Conclusions:
Routine assessment of HRQoL using an ePROM platform was feasible, acceptable, and usable for children aged 5-12 years with cancer. Preliminary evidence suggesting clinical utility supports the need for future implementation-effectiveness studies.
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