Integrated Collection of Patient-Reported Outcomes and Experiences in Children with Kidney and Hematological Diseases
A Pilot Study
Bibliographic Data
| ID | 15719366 |
|---|---|
| Authors | Karolis Ažukaitis (0000-0001-7953-1338, Vilnius University, corresponding author), Roma Puronaitė (0000-0001-7571-4989, Vilnius University Hospital Santariskiu Klinikos), Goda Vaitkevičienė (0000-0001-6724-8164, Vilnius University), Goda Elizabeta Vaitkevičienė (Vilnius University), Justas Trinkūnas (0000-0002-6559-049X, Vilnius Gediminas Technical University), Augustina Jankauskienė (0000-0001-7767-2102, Vilnius University), Danguolė Jankauskienė (Mykolas Romeris University) |
| Year | 2023 |
| Volume | 10 |
| Issue | 7 |
| Pages | 1245-1245 |
| Publication date | 2023-07-19 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Children (JOURNAL) |
| Journal identifiers | ISSN: 2227-9067 • E-ISSN: 2227-9067 |
| Publisher | Multidisciplinary Digital Publishing Institute (PUBLISHER • CH) |
| DOI | 10.3390/children10071245 |
| PMID | 37508742 |
| OpenAlex | W4384931942 |
| Language | EN |
| References cited | 34 |
We aimed to explore the feasibility and potential relevance of integrated electronic collection of patient-reported outcome and experience measures (PROM and PREM) in children with special healthcare needs (CSHCN) by using the example of children with kidney and hematological diseases. We performed a cross-sectional, single-center study of children <18 years of age. Children (≥10 years) and their parents received Generic PedsQL Core Scale 4.0 and custom PREM surveys to their email addresses via the REDCap platform, and the results were integrated into the hospital's electronic health records system. A total of 192 patients (98 with kidney diseases and 94 with hematological diseases) were enrolled. The overall response rate was 51%, and the median time for completion of each proxy questionnaire was approximately three minutes. The lowest PROM scores were observed in the emotional and school functioning dimensions. More favorable experiences in the diagnosis establishment process were associated with higher scores in physical, social, school functioning, and total PROM scores. A better evaluation of the hospital's environment was associated with higher social functioning, while better information provision correlated with higher physical functioning and total PROM scores. Our data indicates that integrated electronic collection of PROMs and PREMs in the population of CSHCN is feasible, but efforts to increase the response rate are needed. The associations between PROMs and PREMs suggest that future studies exploring targeted interventions at the healthcare service level to improve subjective patient outcomes are needed
Environmental health · Family medicine · Patient-reported outcome · Physical therapy · Population · Prom · Psychological intervention · Quality of life (healthcare · Scale (ratio · Adolescent and Pediatric Healthcare · Childhood Cancer Survivors' Quality of Life · Family and Disability Support Research · Medicine · Nursing · Pediatrics
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| Citation velocity | historical |
|---|---|
| Highly cited | No |