The Use of Patient-Reported Outcome Measures in Daily Clinical Practice of a Pediatric Nephrology Department

Abstract

(1) Background: Health-related quality of life (HRQoL) is lower in patients with chronic kidney disease (CKD) compared to the general population. In 2011, the KLIK PROM portal was implemented in the Emma Children's Hospital to monitor and discuss HRQoL in daily care. This study describes and assesses the implementation and use of the KLIK PROM portal in the pediatric nephrology department. (2) Methods: CKD patients (self-report, if 8-18 years of age) and their parents (proxy-report, if 1-8 years) were invited to complete HRQoL patient-reported outcome measures (PROMs): TNO-AZL Preschool children Quality Of Life (TAPQOL) or Pediatric Quality of Life Inventory for Children (PedsQL). The PROMs were completed before and discussed during outpatient consultations. The adaptation rate-the proportion of patients/parents who were invited and completed at least one PROM-was calculated. Reported HRQoL scores of CKD patients were compared to the general population. (3) Results: In total, 142 patients (proxy- and self-report) were invited, 112 patients completed at least one PROM (adaptation rate 79%). Patients (n = 84 with informed consent for scientific use) with CKD reported lower HRQoL and HRQoL was more often impaired compared to the general Dutch population. (4) Conclusions: The implementation of KLIK was successful and its use is feasible for daily care. Using KLIK, HRQoL problems can be easily identified and monitored.

Keywords: HRQoL; PROMs; chronic kidney disease; kidney transplantation; pediatric.

Figure 3

Bar plot of the proportion (%) of impaired (A) TAPQOL subscale scores (n = 22) and (B) total PedsQL score and subscale scores for proxy-report (5–7 years, n = 10) and self-report (8–18 years, n = 54) in CKD patients. Impaired HRQoL is defined as a score below 1 SD of the mean score of the reference group. By definition, the prevalence of impaired HRQoL in the reference group is 16% for each domain (represented by the horizontal dashed line).

Figure 1

The KLIK method in daily clinical practice. (A) The patient and/or parents receive a reminder by email to complete the PROMs 7 days before a scheduled outpatient consultation. After completion, the answers of the PROMs are transformed into a KLIK ePROfile; (B) Literal representation of the answers using traffic light colors in order to easily identify items that need special attention (yellow or red); (C) HRQoL and change over time is visually displayed using graphs. The red line indicates reference data; (D) The clinician discusses the ePROfile with the patient and/or parents.

Figure 2

Flowchart of from the implementation of the KLIK PROM portal in the pediatric nephrology department. The adaptation rate is the percentage of patients/parents who were invited to the KLIK PROM portal and completed at least one PROM.

Figure 4

Visual graph of a kidney transplant patient whose overall HRQoL, measured with the PedsQL, improved following transplantation (vertical dashed line), but would still be below the overall mean score of the reference group (horizontal solid line). Before transplantation, this patient was on hemodialysis after its renal function worsened progressively within a year. The patient experienced extreme fatigue and found it difficult to cope with its diet restrictions. As a result of the progressive course of the disease, the patient had trouble sleeping for which they were referred to psychosocial care. Several weeks after successful transplantation, the patient had to be admitted to the hospital with a urinary tract infection, which was adequately treated. There were no signs of rejection. In the months following transplantation, the arterial-venous shunt in the patient’s arm was surgically removed upon own request, which may have led to a further improvement of the HRQoL scores.