-
Article
Open AccessSingle session therapy in pediatric healthcare: the value of adopting a strengths-based approach for families living with neurological disorders
Pediatric patients with neurological disorders often require lifelong management of symptoms and behaviours that can result in enduring emotional burden, stress and impacted health-related quality of life. Sin...
-
Article
Open AccessPatient-reported outcome measures in pediatric solid organ transplantation: Exploring stakeholder perspectives on clinical implementation through qualitative description
Patient-reported outcome measures (PROMs) are standardized instruments used to collect data about the subjective assessment of medical care from the patient perspective. Implementing PROMs within pediatric cli...
-
Article
Open AccessWhat does patient engagement mean for Canadian National Transplant Research Program Researchers?
In recent years, the importance of involving patients in research has been increasingly recognized because it increases the relevance and quality of research, facilitates recruitment, enhances public trust and...
-
Article
Quality of life of pediatric oncology patients: Do patient-reported outcome instruments measure what matters to patients?
The assessment of quality of life (QOL) is key within pediatric oncology and requires a clearly defined construct of QOL. The purpose of our study was: (1) to conduct a qualitative study to inform the theoreti...
-
Article
Open AccessA cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study
The population of adolescents and young adults with congenital heart disease (CHD) is growing exponentially. These survivors are at risk of late cardiac complications and require lifelong cardiology care. Howe...
-
Article
Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model
An appraisal of pediatric cancer-specific quality-of-life (QOL) instruments revealed a lack of clarity about what constitutes QOL in this population. This study addresses this concern by identifying the concep...
-
Article
Identifying determinants of quality of life of children with cancer and childhood cancer survivors: a systematic review
This paper describes a systematic review conducted to identify factors that have been investigated as explanations of variability in the quality of life of children with cancer and childhood cancer survivors. ...
