title: Use of patient-reported outcomes to measure symptoms and health related quality of life in the clinic.
abstract: There is increasing interest in the use of patient-reported outcomes (PROs) in routine practice in cancer care to measure symptoms and health related quality of life (HRQOL). PROs are designed to capture the patient's perspective of their care and treatment, and complement the traditional clinical outcomes of survival and toxicity assessment. Integrating routine collection and feedback of PROs has been found to improve care for patients on both an individual level, through improved communication and management of symptoms, and at an organizational level, by enabling aggregation of data to compare performance. This article reviews the benefits and challenges of introducing patient-reported assessments into routine clinical practice. Methods for choosing a questionnaire; collection and presentation of results; timing and frequency of administration as well as clinician training methods to aid the ability of clinicians to integrate the use of PROs into their own practice are described. Electronic PRO capture and integration with electronic health records seems to provide the most effective method for seamless integration into existing patient care pathways. Case studies from our own practice illustrate the issues raised. Electronic methods enabling immediate collection, scoring and interpretation of the data, as well as real-time data capture, email alert systems and individualized, online self-management advice may enable severe symptoms to be managed in a more timely manner. Evaluation methods are described to establish the effectiveness of the PRO intervention. Engaging stakeholders throughout the process of initial consultation and development, during delivery and evaluation is key to success. Future work needs to focus on the effectiveness of PROs in longer-term follow-up of patients in routine care and the relationship between the PRO severity grading and clinician severity grading using the Common Terminology Criteria of Adverse Events (CTCAE).
authors.affiliation: MRCP, University of Leeds, UK. Electronic address: a.gilbert@leeds.ac.uk.
authors.forename: Alexandra
authors.initials: A
authors.lastname: Gilbert
authors.affiliation: FRCR FRCP, University of Leeds, UK.
authors.forename: David
authors.initials: D
authors.lastname: Sebag-Montefiore
authors.affiliation: FRCR FRCP(Glasg), The Christie Hospital, Manchester, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Davidson
authors.affiliation: FRCP, University of Leeds, UK.
authors.forename: Galina
authors.initials: G
authors.lastname: Velikova
mesh_terms: D001330:Electronic Data Processing; D005260:Female; D005833:Genital Neoplasms, Female / Q000523:psychology / Q000628:therapy; D006305:Health Status Indicators; D006801:Humans; D020407:Internet; D063868:Patient Outcome Assessment; D011788:Quality of Life; D057566:Self Report; D011795:Surveys and Questionnaires
keywords: Clinical practice; Electronic data capture; Health related quality of life; Internet; Patient report outcomes; Symptoms