Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model

Abstract

This systematic review and the proposed model represent a useful starting point in the critical appraisal of the conceptual underpinnings of PRO instruments used in pediatric oncology and contribute to the need to place such tools under a critical, yet reflective and analytical lens.

Systematic review and meta‐analysis of objective and subjective quality of life among pediatric, adolescent, and young adult bone tumor survivors

“…[45–48] In addition, they underscore critical challenges in QOL research: How do objective functional measures relate to patient’s own definitions of “quality” and what do patients value? How sensitive are individual instruments to specific QOL subdomains and how completely do they assess patient-reported QOL?…”

A Swedish perspective on nursing and psychosocial research in paediatric oncology: A literature review

“…Another reason for not choosing the recommended QoL instruments could be that the Swedish researchers did not aim to measure the concept of "Quality of Life", but heading for other dimensions related to wellbeing. However, the studies measure the same domains (physical, psychological, social and general health) as includes in those QoL instruments (Anthony et al, 2014). Petersson et al (2013) assessed instruments for measuring health-related QoL, which have been translated and validated for Swedish use, and found that the instruments with a smaller number of items were focused only on a few domains, while measurement tools with a greater depth of content cover a greater number of domains.…”

Measuring pediatric patient-reported outcomes: good progress but a long way to go

“…Three articles applied the International Classification of Functioning, Disability, and Health – Children and Youth Version (ICF-CY) as a framework to compare the conceptual content of pediatric PROs embedded in existing instruments for children and adolescents with chronic conditions [3], epilepsy [4], and obesity [5]. One article synthesized the constructs of PRO instruments for pediatric cancer [6], and another article summarized the development of the KIDSCREEN which is commonly used in European pediatric studies [7]. We applaud the authors for their efforts and useful findings in pediatric PRO measurement.…”

“…The article by Anthony et al [6] specifically compared the content of pediatric PRO instruments designed for children with cancer. In this study, authors adopted an inductive reasoning approach to summarize the content of domains/subdomains from existing generic and cancer-specific tools.…”

“…However, these issues are either neglected or simply captured by the inclusion of only a single item in the existing PRO tools [13]. Additionally, as emphasized by Anthony et al [6], measuring symptom impact and burden are important concepts in pediatric cancer research, yet symptoms are largely overlooked in existing PRO tools. Symptoms are often graded by clinicians rather than self-reported by patients (e.g., National Cancer Institute Common Terminology Criteria for Adverse Events (NCI CTCAE)).…”