The Potential Role of Symptom Questionnaires in Palliative and Supportive Cancer Care Delivery

The American Society of Clinical Oncology (ASCO) palliative care recommendations have been updated into a full guideline. Symptom questionnaires—completed and reviewed with patients during care delivery—are poised to play a large role in this guideline because they provide a more comprehensive understanding of symptoms. This article provides an overview of the guideline and describes how symptom questionnaires can be used to satisfy the guideline

Patient-Reported Outcomes in Clinical Trials of Rare Diseases

The science of measuring patient-reported outcomes (PROs) has advanced substantially in recent decades, allowing evaluation of how patients feel and function in clinical research. Assessment of the patient experience in populations with rare diseases can be successfully achieved using PRO measures when careful planning and rigorous methods are employed. A number of challenges exist when designing and implementing PRO analyses in rare disease contexts, including heterogeneity of outcomes, availability of suitable measures, recruitment, and selection of appropriate data collection methods. Strategies to address these exist and have been employed in past clinical research, particularly in pediatric populations. PRO assessments in rare disease clinical trials have been particularly successful through partnerships between investigators, PRO methodologists, and patient organizations. The overall goal of PRO measurement is to understand the patient experience and it provides an essential part of evaluating the impact of disease and treatment