Designing oncology-specific patient-reported outcome dashboards: end-user preferences for reference curve inclusion and visualization in pediatric cancer care.
Saved in:
| Title: | Designing oncology-specific patient-reported outcome dashboards: end-user preferences for reference curve inclusion and visualization in pediatric cancer care. |
|---|---|
| Authors: | Alkirawan, R. (AUTHOR), Schepers, S. A. (AUTHOR), van Litsenburg, R. R. L. (AUTHOR), Grootenhuis, M. A. (AUTHOR) |
| Source: | Quality of Life Research. Aug2026, Vol. 35 Issue 8, p1-13. 13p. |
| Abstract: | Purpose: Patient Reported Outcome Measures PROMs are essential for monitoring health-related quality of life (HRQoL) in pediatric oncology. In the Netherlands, the KLIK PROM portal facilitates structured HRQoL communication between healthcare professionals (HCPs) and families. Currently, HRQoL scores are compared to general population norms. Children with cancer face unique challenges; comparisons with the general population alone may aggravate perceived difficulties and create unnecessary discomfort. An oncology-specific reference would provide appropriate clinical context and improve interpretability. This study evaluated end-user preferences for the inclusion and visualization of such a reference curve within the portal. Method: Four focus groups with 13 HCPs, 6 patient interviews, and 12 interviews with 15 parents (including three interviews with both parents) were conducted for this qualitative study. Participants discussed preferences for adding and visualizing an oncology-specific reference curve. NVIVO was used to code transcripts and support thematic analysis. Results: All end-users, except three parents, valued the integration of an oncology-specific reference curve. Three major themes emerged regarding visualization preferences: (1) Normalization: Most participants preferred focusing on normal outcomes, with graphs showing a broad range of − 2 to + 2 SD in a neutral color (e.g. blue).; (2) Deficit-focused framing: end-users opposed overemphasizing deviations (e.g. the potential emotional impact of using traffic light colors); (3) Customization: end-users favored a switch option to tailor curves to patients’ needs. Conclusion: End-users preferred a customizable oncology-specific reference curve enabling fair peer comparison without distressing visuals. Future implementation should focus on training HCPs to support patient-centered communicate of the new dashboard in clinical practice. [ABSTRACT FROM AUTHOR] |
| Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Psychology and Behavioral Sciences Collection |
| FullText | Text: Availability: 0 |
|---|---|
| Header | DbId: pbh DbLabel: Psychology and Behavioral Sciences Collection An: 194882808 AccessLevel: 6 PubType: Academic Journal PubTypeId: academicJournal PreciseRelevancyScore: 0 |
| IllustrationInfo | |
| Items | – Name: Title Label: Title Group: Ti Data: Designing oncology-specific patient-reported outcome dashboards: end-user preferences for reference curve inclusion and visualization in pediatric cancer care. – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Alkirawan%2C+R%2E%22">Alkirawan, R.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Schepers%2C+S%2E+A%2E%22">Schepers, S. A.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22van+Litsenburg%2C+R%2E+R%2E+L%2E%22">van Litsenburg, R. R. L.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Grootenhuis%2C+M%2E+A%2E%22">Grootenhuis, M. A.</searchLink> (AUTHOR) – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="JN" term="%22Quality+of+Life+Research%22">Quality of Life Research</searchLink>. Aug2026, Vol. 35 Issue 8, p1-13. 13p. – Name: Abstract Label: Abstract Group: Ab Data: Purpose: Patient Reported Outcome Measures PROMs are essential for monitoring health-related quality of life (HRQoL) in pediatric oncology. In the Netherlands, the KLIK PROM portal facilitates structured HRQoL communication between healthcare professionals (HCPs) and families. Currently, HRQoL scores are compared to general population norms. Children with cancer face unique challenges; comparisons with the general population alone may aggravate perceived difficulties and create unnecessary discomfort. An oncology-specific reference would provide appropriate clinical context and improve interpretability. This study evaluated end-user preferences for the inclusion and visualization of such a reference curve within the portal. Method: Four focus groups with 13 HCPs, 6 patient interviews, and 12 interviews with 15 parents (including three interviews with both parents) were conducted for this qualitative study. Participants discussed preferences for adding and visualizing an oncology-specific reference curve. NVIVO was used to code transcripts and support thematic analysis. Results: All end-users, except three parents, valued the integration of an oncology-specific reference curve. Three major themes emerged regarding visualization preferences: (1) Normalization: Most participants preferred focusing on normal outcomes, with graphs showing a broad range of − 2 to + 2 SD in a neutral color (e.g. blue).; (2) Deficit-focused framing: end-users opposed overemphasizing deviations (e.g. the potential emotional impact of using traffic light colors); (3) Customization: end-users favored a switch option to tailor curves to patients’ needs. Conclusion: End-users preferred a customizable oncology-specific reference curve enabling fair peer comparison without distressing visuals. Future implementation should focus on training HCPs to support patient-centered communicate of the new dashboard in clinical practice. [ABSTRACT FROM AUTHOR] – Name: AbstractSuppliedCopyright Label: Group: Ab Data: <i>Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.) |
| PLink | https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=194882808 |
| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1007/s11136-026-04326-5 Languages: – Code: eng Text: English PhysicalDescription: Pagination: PageCount: 13 StartPage: 1 Titles: – TitleFull: Designing oncology-specific patient-reported outcome dashboards: end-user preferences for reference curve inclusion and visualization in pediatric cancer care. Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Alkirawan, R. – PersonEntity: Name: NameFull: Schepers, S. A. – PersonEntity: Name: NameFull: van Litsenburg, R. R. L. – PersonEntity: Name: NameFull: Grootenhuis, M. A. IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 08 Text: Aug2026 Type: published Y: 2026 Identifiers: – Type: issn-print Value: 09629343 Numbering: – Type: volume Value: 35 – Type: issue Value: 8 Titles: – TitleFull: Quality of Life Research Type: main |
| ResultId | 1 |
