A PRO-cision Medicine Methods Toolkit to Address the Challenges of Personalizing Cancer Care Using Patient-Reported Outcomes

Abstract

Patients are increasingly being asked to complete standardized, validated questionnaires with regard to their symptoms, functioning, and well-being [ie, patient-reported outcomes (PROs)] as part of routine care. These PROs can be used to inform patients’ care and management, which we refer to as “PRO-cision Medicine.” For PRO-cision Medicine to be most effective, clinicians and patients need to be able to understand what the PRO scores mean and how to act on the PRO results. The papers in this supplement to Medical Care describe various methods that have been used to address these issues. Specifically, the supplement includes 14 papers: 6 describe different methods for interpreting PROs and 8 describe how different PRO systems have addressed interpreting PRO scores and/or acting on PRO results. As such, this “Methods Toolkit” can inform clinicians and researchers aiming to implement routine PRO reporting into clinical practice by providing methodological fundamentals and real-world examples to promote personalized patient care.

Thresholds for clinical importance were defined for the European Organisation for Research and Treatment of Cancer Computer Adaptive Testing Core—an adaptive measure of core quality of life domains in oncology clinical practice and research

“…In the normative sample for the EORTC CAT Core [9], for example, 61.0% of the participants from the general population reported at least one health condition, with chronic pain (23%), arthritis (13%), and diabetes (10%) being most common. Development of thresholds for PRO measures has been recommended in the literature because the interpretation of scores on abstract metrics has been identified as one of the major barriers to the use of PRO measures in daily clinical practice [30]. The TCIs for the EORTC CAT Core can be integrated into software used for routine PRO monitoring to improve graphical presentation of PRO results (e.g., use of color-coding or reference lines [31,32]).…”

Using Autoregressive Integrated Moving Average (ARIMA) Modelling to Forecast Symptom Complexity in an Ambulatory Oncology Clinic: Harnessing Predictive Analytics and Patient-Reported Outcomes

“…Effective symptom management is a daunting but important challenge in ambulatory oncology settings [5][6][7]. As a standard component of care, the collection of longitudinal patient reported outcomes (PROs) is pivotal for identifying patient needs and improving outcomes such as symptom control, health-related quality of life, and overall functioning [8][9][10][11]. Timely and consistent review of patient concerns and symptoms by clinicians, in outpatient settings where demands for time are ever increasing, remains to be a challenge [6].…”

Validating a Patient-Reported Outcomes–Derived Algorithm for Classifying Symptom Complexity Levels Among Patients With Cancer

“…With research showing benefits of gathering outcome data directly from patients, it has become more common for standardized, validated questionnaires to be integrated into routine clinical practice. 7 In 2012, Alberta Heath Services (AHS) Cancer Care Alberta (CCA) began implementing the routine use of a standardized patient symptom questionnaire called "Putting Patients First" (PPF) at all 17 cancer facilities in order to raise clinician awareness of patients' concerns and symptoms. The PPF includes 2 standardized measures: the Revised Edmonton Symptom Assessment System (ESAS-r) 8,9 and the Canadian Problem Checklist (CPC), 10 selected in alignment with the national reporting criteria established by the Canadian Partnership Against Cancer (CPAC).…”

“…This feedback aligned with published research on barriers to using PROs in routine clinical practice that include interpretation and application issues. 7 As a result, in 2017 a group of epidemiologists, statisticians, and clinicians gathered to develop a pragmatic PRO-driven symptom complexity algorithm based on the existing data already being collected in the Alberta practice environment. The intention was to design visual flags to overcome the clinical challenge of identifying which patients are experiencing numerous concurrent severe symptoms.…”