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Special Issue Editors

Dr. John Eric Chaplin

E-Mail Website
Guest Editor

Institute for Clinical Sciences, Department of Pediatrics, Gothenburg Pediatric Growth Research Center (GPGRC), Sahlgrenska Academy at University of Gothenburg, 416 85 Gothenburg, Sweden
Interests: child and adolescent wellbeing; body image; self-esteem; stigma; subjective quality of life; psychometric measurement; child health; women's health

Dr. Zephanie Tyack

E-Mail Website
Guest Editor

Faculty of Health, School of Public Health & Social Work, The University of Queensland, St Lucia, QLD 4072, Australia
Interests: patient engagement; quality of life measurement; health services; implementation science

Dr. Holger Muehlan

E-Mail Website
Guest Editor

Department of Health & Prevention, University of Greifswald, Robert-Blum-Str. 13, 17487 Greifswald, Germany
Interests: digital health; health technology assessment; health outcome assessment; patient-reported outcomes; patient-reported experiences; quality of life; (digital) health literacy; psychometric analysis; ambulatory assessment; (pediatric) health services research

Special Issue Information

Dear Colleagues,

In recent years, the number of instruments developed to measure the health-related quality of life (HRQOL) of children and young people has expanded enormously. New psychometric methods and new ideas about how to measure QoL in healthy and diseased populations has created a field that is thriving with ideas and developments. In this Special Issue, the Child-health Special Interest Group (CH-SIG) of the International Society of Quality of Life (ISOQOL) will seek to highlight innovative approaches and issues with the potential to push the field forward toward more rigorous and valid measures of QoL. It is hoped that these measures can be applied to further understand the concepts and confounders that lead to improved public health innovations, better clinical trial assessment, and more clinically useful knowledge. All papers published in the Special Issue will be peer reviewed and evaluated by the ISOQOL board.

Important topics to be addressed, such as generic versus disease-specific instruments, self- versus proxy-report, as well as different modes of administration and presentation, will be addressed. The Special Issue will seek to publish papers describing validated and sensitive methods to measure and monitor HrQoL that is increasingly being demanded by healthcare professionals wanting to deliver the best possible care to their pediatric and transition populations.

Dr. John Eric Chaplin
Dr. Zephanie Tyack
Dr. Holger Muehlan
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

health-related quality of life (HRQOL)
health outcome assessment
pediatric-patient-reported outcomes
pediatric-patient-reported experiences

Published Papers (1 paper)

Research

13 pages, 7074 KiB

Open AccessArticle

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

by Floor Veltkamp, Lorynn Teela, Hedy A. van Oers, Lotte Haverman and Antonia H. M. Bouts

Int. J. Environ. Res. Public Health 2022, 19(9), 5338; https://doi.org/10.3390/ijerph19095338 - 27 Apr 2022

Cited by 4 | Viewed by 1615

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. Full article

(This article belongs to the Special Issue Emerging Issues in the Measurement of Pediatric Health-Related Quality of Life: An ISOQOL Perspective)

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