Development of a Proxy Quality-of-Life Rating Scale for the End-of-Life Care of Pediatric Cancer Patients, Evaluated from a Nurse's Perspective

Title

Development of a Proxy Quality-of-Life Rating Scale for the End-of-Life Care of Pediatric Cancer Patients, Evaluated from a Nurse's Perspective

Creator

Nagoya Y; Miyashita M; Irie W; Yotani N; Shiwaku H

Publisher

Journal of Palliative Medicine

Date

2019

Subject

end-of-life; pediatric palliative care; proxy rating scale; quality of life

Description

Background: Assessing the quality of life (QoL) of children receiving end-of-life (EoL) care through evaluations by the children and their bereaved families is challenging; presently, there is no QoL assessment measure that is appropriate for use in pediatric EoL and/or palliative care. Objective: To develop and test a proxy rating scale (the "Good Death Inventory for Pediatrics," GDI-P) for the QoL of pediatric cancer patients receiving EoL care, evaluated from the nurse's perspective, as well as a short version of the scale. Design, Setting, and Measurements: The GDI-P was developed based on previous studies. After initial testing, it was distributed to hospitals across Japan, where nurses in charge of patients with childhood cancer receiving EoL care used the scale to evaluate a patient retrospectively. To examine inter-rater reliability, we encouraged two nurses to evaluate one patient. The GDI-P was modified on the basis of the responses, and the validity and reliability were measured. Results: In total, 85 questionnaires were completed, including 32 pairs of responses from two nurses evaluating one patient. In addition, 47 retest questionnaires were returned. The final, modified GDI-P comprised eight factors with 22 items and showed high convergent and discriminant validity, scaling success rates for each item and factor, and Cronbach's alpha values. A short version of GDI-P was prepared, comprising eight representative items. Conclusions: The final GDI-P was confirmed to have adequate reliability and validity. The QoL scale developed in this study should provide useful outcome evaluation criteria for assessing the EoL care of pediatric cancer patients.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

Oncology 2019 List

Collection

Citation

Nagoya Y; Miyashita M; Irie W; Yotani N; Shiwaku H, “Development of a Proxy Quality-of-Life Rating Scale for the End-of-Life Care of Pediatric Cancer Patients, Evaluated from a Nurse's Perspective,” Pediatric Palliative Care Library, accessed August 5, 2021, https://pedpalascnetlibrary.omeka.net/items/show/16957.

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