Veltkamp Floor, Teela Lorynn, van Oers Hedy A, Haverman Lotte, Bouts Antonia H M
Department of Pediatric Nephrology, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands.
Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam Reproduction and Development, Amsterdam Public Health, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands.
Int J Environ Res Public Health. 2022 Apr 27;19(9):5338. doi: 10.3390/ijerph19095338.
(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 ( = 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.
（1）背景：与一般人群相比，慢性肾脏病（CKD）患者的健康相关生活质量（HRQoL）较低。2011年，艾玛儿童医院启用了KLIK PROM门户网站，以监测和讨论日常护理中的HRQoL。本研究描述并评估了KLIK PROM门户网站在儿科肾脏病科的实施和使用情况。（2）方法：邀请CKD患者（8至18岁者自我报告，1至8岁者由父母代理报告）及其父母完成HRQoL患者报告结局量表（PROMs）：TNO-AZL学龄前儿童生活质量量表（TAPQOL）或儿童生活质量量表（PedsQL）。PROMs在门诊咨询前完成，并在咨询期间进行讨论。计算适应率，即被邀请并至少完成一项PROM的患者/父母比例。将CKD患者报告的HRQoL得分与一般人群进行比较。（3）结果：总共邀请了142名患者（包括代理报告和自我报告），112名患者至少完成了一项PROM（适应率79%）。与荷兰一般人群相比，获得科学使用知情同意的84名CKD患者报告的HRQoL较低，且HRQoL受损的情况更为常见。（4）结论：KLIK的实施是成功的，其在日常护理中的使用是可行的。使用KLIK，可以轻松识别和监测HRQoL问题。
