Our Mission
ASCPRO's mission is to make recommendations for the assessment of patient-reported cancer-related symptoms and for the use of that information to facilitate clinical research and decision making. To this end, ASCPRO develops workshops to explore the use of patient-reported outcomes to measure potential symptom reduction benefits in cancer clinical trials. In addition, small task forces will address a number of issues related to symptom measurement in cancer. These issues include the development of conceptual models of symptom assessment, a review of complex symptoms such as fatigue and emotional distress, and consideration of measurement issues such as appropriate recall period, translation of symptom scales, selection, development and validation of new and existing scales, and validation of translations of symptom measurement scales.
Mission Update
Initial ASCPRO discussions led to a consensus summary of the most important cancer-related and treatment-related symptoms, and to a prioritizing of those symptoms. A task-force structure allows ASCPRO to focus on each symptom in turn. The first priority of each task force is to produce a position paper outlining potential recommendations and an honest list of “we don’t know the answer” issues. This position paper will aid the conceptualization and design of symptom-focused outcome measurement in cancer.
The measurement of cancer-related fatigue in clinical trials was chosen as the first target symptom for working group focus. The Fatigue Task Force has published recommendations concerning such issues as conceptual and endpoint models of fatigue, target product profiles, the use of unidimensional versus multidimensional assessment, and how to best represent severe fatigue. Cognitive Deficit and Multiple Symptom Task Forces are now underway.
Scope
ASCPRO seeks input from the stakeholders in symptom measurement in cancer—patients, clinicians, the National Cancer Institute (NCI), academic researchers, government and industry—as we examine how to develop the measurement of symptoms as outcomes. Issues to be considered include, but are not limited to:
- How to evaluate recommendations for conceptual models of single/multiple symptom assessment in cancer-related clinical trials
- How to identify appropriate measurement dimensions, assessment time points, and standards for symptom assessment tools (item and scale selection, recall periods, single or multiple items per symptom, scale modification by addition of symptoms, validation and translation)
- Developing suggestions for model trial designs, analytic approaches, and symptom labeling considerations
- How to determine the best way to ask patients about the severity and impact of their symptoms
- How to capture multiple symptoms at the same time (item and scale selection, recall periods, single or multiple items per symptom, scale modification by addition of symptoms, validation and translation)
- Aspects of trial design and analysis of trials where symptom reports are important outcomes
Patient (Self) Report
Objective measures of symptom status are only as successful their correlation with self report, because people are the only ones who know and can report their symptoms. this means that the only way that clinicians and researchers can be truly successful in estimating the symptoms of others is to ask.
People uniformly give more reliable estimates of symptom severity when given scales to report them. Thus one of ASCPRO's goals will be to identify appropriate measurement dimensions, assessment time points, and standards for symptom assessment tools.