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. 2023 Jul 19;10(7):1245.
doi: 10.3390/children10071245.

Integrated Collection of Patient-Reported Outcomes and Experiences in Children with Kidney and Hematological Diseases: A Pilot Study

Karolis Ažukaitis  1   2 , Roma Puronaitė  2 , Goda Elizabeta Vaitkevičienė  1   2 , Justas Trinkūnas  2   3 , Augustina Jankauskienė  1   2 , Danguolė Jankauskienė  4
Affiliations

Integrated Collection of Patient-Reported Outcomes and Experiences in Children with Kidney and Hematological Diseases: A Pilot Study

Karolis Ažukaitis et al. Children (Basel). .

Abstract

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.

Keywords: PREM; PROM; children; hematological disease; kidney disease; parents; patient-reported experience; patient-reported outcome.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure A1
Figure A1
Correlation between physical functioning score and PREM answers. (A) PREM question 1; (B) PREM question 2; (C) PREM question 3; (D) PREM question 4; (E) PREM question 5; (F) PREM question 6; (G) PREM question 7; (H) PREM question 8; (I) PREM question 9; (J) PREM question 10; (K) PREM question 11; (L) PREM question 12.
Figure A2
Figure A2
Correlation between emotional functioning score and PREM answers. (A) PREM question 1; (B) PREM question 2; (C) PREM question 3; (D) PREM question 4; (E) PREM question 5; (F) PREM question 6; (G) PREM question 7; (H) PREM question 8; (I) PREM question 9; (J) PREM question 10; (K) PREM question 11; (L) PREM question 12.
Figure A3
Figure A3
Correlation between social functioning score and PREM answers. (A) PREM question 1; (B) PREM question 2; (C) PREM question 3; (D) PREM question 4; (E) PREM question 5; (F) PREM question 6; (G) PREM question 7; (H) PREM question 8; (I) PREM question 9; (J) PREM question 10; (K) PREM question 11; (L) PREM question 12.
Figure A4
Figure A4
Correlation between school functioning score and PREM answers. (A) PREM question 1; (B) PREM question 2; (C) PREM question 3; (D) PREM question 4; (E) PREM question 5; (F) PREM question 6; (G) PREM question 7; (H) PREM question 8; (I) PREM question 9; (J) PREM question 10; (K) PREM question 11; (L) PREM question 12.
Figure A5
Figure A5
Correlation between total PROM score and PREM answers. (A) PREM question 1; (B) PREM question 2; (C) PREM question 3; (D) PREM question 4; (E) PREM question 5; (F) PREM question 6; (G) PREM question 7; (H) PREM question 8; (I) PREM question 9; (J) PREM question 10; (K) PREM question 11; (L) PREM question 12.
Figure A6
Figure A6
Correlation between total PREM score and PROM dimensions. (A) Physical functioning; (B) Emotional functioning; (C) Social functioning; (D) School functioning; (E) PROM total schore.
Figure 1
Figure 1
Scheme indicating patient distribution by age groups and the number of different questionnaires sent to parents and children in each group.
Figure 2
Figure 2
Responses rate by age groups of the children.
Figure 3
Figure 3
Proxy-reported PROM scores by disease group.
Figure 4
Figure 4
Children-reported PROM scores by gender.
Figure 5
Figure 5
Proxy-reported PREM questionnaire answers by question.
Figure 6
Figure 6
Children-reported PREM questionnaire answers by question.
Figure 7
Figure 7
Pair-wise comparison of PROM and PREM scores between children and their parents. (A) Physical functioning; (B) Emotional functioning; (C) Social functioning; (D) School functioning; (E) PROM total score; (F) PREM total score.
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