Margaret-Ann TaitUniversity of Sydney In 2016, Australia passed legislation allowing cannabis use for medicinal purposes, and since then more than 800,000 patients have received medicinal cannabis prescriptions. As patient-reported outcomes researchers, we wanted to...
Christy Zigler, PhD MSEdDuke University School of Medicine This project really stared with the Foundation for Angelman syndrome Therapeutics (FAST), a patient advocacy organization. They came to Duke’s Center for Health Measurement in 2018 with a goal: to improve the...
Eline AlonsHU University of Applied Sciences The ability to communicate is a prerequisite for participating in daily life. Yet, communication does not always come naturally. Some children grow up with communication problems, such as difficulty speaking (e.g.,...
Rubina Shah, MSc MPH;1 Andrew Finlay, FRCP;1 and Sam Salek, PhD RPh FFPM FRPS2 1 Cardiff University, School of Medicine2 School of Life & Medical Sciences, University of Hertfordshire The impact of disease on the quality of life of patients’ partners and family...
Andrea Johnson, PhDUniversity of Toronto Approximately 20% of children and adolescents diagnosed with cancer will not survive their disease. This means that a significant number of children and adolescents will live with advanced cancer and likely use pediatric...
