Using patient-reported outcomes in clinical oncology practice: benefits, challenges and next steps

Measuring patient outcomes such as health-related quality-of-life in clinical practice can provide opportunities for patient monitoring and management. Well-validated instruments are available and studies have shown that such information is acceptable to – even valued by – patients and their clinicians. However, despite such general acceptance of the idea and, as demonstrated in feasibility studies, such systematic reporting occurs rarely in oncology practice in the USA and many challenges to widespread adoption exist. These challenges include limitations in knowledge about how best to interpret individual patient-reported outcomes and clinician, patient-related and health system issues. The way forward does not lie simply in urging clinicians to add patient-reported measurement to other tasks that are part of everyday practice. Rather, new information infrastructures and technologies, combined with redesign of care, are more likely to embed the routine use of patient-reported outcomes. In addition to taking vital signs and performing laboratory tests, such information can better provide a timely response to patient needs.

[1]  L. Carlson,et al.  Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients , 2000, Psycho-oncology.

[2]  Nandita Mitra,et al.  Patient online self-reporting of toxicity symptoms during chemotherapy. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[3]  David Cella,et al.  Quality of life III: translating the science of quality-of-life assessment into clinical practice-an example-driven approach for practicing clinicians and clinical researchers. , 2003, Clinical therapeutics.

[4]  Decision making at the end of life: shifting sands. , 2005, Journal of the Royal Society of Medicine.

[5]  A. Leplège,et al.  Assessing quality of life. Moral implications for clinical practice. , 1992, Medical care.

[6]  P. Erickson A health outcomes framework for assessing health status and quality of life: enhanced data for decision making. , 2004, Journal of the National Cancer Institute. Monographs.

[7]  I. Finlay,et al.  Improving palliative care for cancer. , 2003, The Lancet. Oncology.

[8]  J Lomas,et al.  Diffusion, Dissemination, and Implementation: Who Should Do What? , 1993, Annals of the New York Academy of Sciences.

[9]  A Smith,et al.  Feasibility and compliance of automated measurement of quality of life in oncology practice. , 2003, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[10]  N. Aaronson,et al.  Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. , 2002, JAMA.

[11]  T. Rummans,et al.  The clinical significance of quality-of-life results: practical considerations for specific audiences. , 2002, Mayo Clinic proceedings.

[12]  L. Carlson,et al.  Computerized Quality-of-Life Screening in a Cancer Pain Clinic , 2001, Journal of palliative care.

[13]  A. House,et al.  Validating automated screening for psychological distress by means of computer touchscreens for use in routine oncology practice , 2001, British Journal of Cancer.

[14]  RON D. HAYS,et al.  Item Response Theory and Health Outcomes Measurement in the 21st Century , 2000, Medical care.

[15]  M. Liang,et al.  Measuring Clinically Important Changes With Patient-Oriented Questionnaires , 2002, Medical care.

[16]  P. Ganz What Outcomes Matter to Patients: A Physician-Researcher Point of View , 2002, Medical care.

[17]  R. Giesler Assessing the quality of life in patients with cancer. , 2000, Current problems in cancer.

[18]  D. Cella,et al.  Real-time clinical application of quality-of-life assessment in advanced lung cancer. , 2002, Clinical lung cancer.

[19]  G. Scambia,et al.  Which dimensions of health‐related quality of life are altered in patients attending the different gynecologic oncology health care settings? , 2002, Cancer.

[20]  David Cella,et al.  Assessing quality of life in research and clinical practice. , 2002, Oncology.

[21]  P. Selby,et al.  Self-reported quality of life of individual cancer patients: concordance of results with disease course and medical records. , 2001, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[22]  Pierre Allard,et al.  A brief pain diary for ambulatory patients with advanced cancer , 2000, Cancer.

[23]  P. Selby,et al.  Computer-based quality of life questionnaires may contribute to doctor–patient interactions in oncology , 2002, British Journal of Cancer.

[24]  Tara Symonds,et al.  Assessing clinical significance in measuring oncology patient quality of life: introduction to the symposium, content overview, and definition of terms. , 2002, Mayo Clinic proceedings.

[25]  C. Gotay,et al.  Outcomes assessment in cancer : measures, methods, and applications , 2004 .

[26]  M. Rothmund,et al.  Quality of life profile: from measurement to clinical application. , 2002, Breast.

[27]  K. McCormick Integrating outcomes into computerized information systems. It's time to get guidelines off the shelf. , 2000, Outcomes management for nursing practice.

[28]  R. Hays,et al.  Patient, clinician, and population perspectives on determining the clinical significance of quality-of-life scores. , 2002, Mayo Clinic proceedings.

[29]  M. Donaldson,et al.  Taking stock of health-related quality-of-life measurement in oncology practice in the United States. , 2004, Journal of the National Cancer Institute. Monographs.

[30]  Galina Velikova,et al.  Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[31]  D. Alderson,et al.  Feasibility of quality of life assessment in patients with upper gastrointestinal tract cancer , 2003, British Journal of Cancer.

[32]  G. Knafl,et al.  Comparison of health-related quality of life questionnaires in ambulatory oncology , 2005, Quality of Life Research.

[33]  John H Wasson,et al.  Microsystems in health care: Part 1. Learning from high-performing front-line clinical units. , 2002, The Joint Commission journal on quality improvement.

[34]  C. McHorney,et al.  A Qualitative Study of Patients’ and Physicians’ Views about Practice-Based Functional Health Assessment , 2002, Medical care.

[35]  D. Forman,et al.  Automated collection of quality-of-life data: a comparison of paper and computer touch-screen questionnaires. , 1999, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[36]  J. Lochman National Institutes of Health State-of-the-Science Conference Statement , 2006 .

[37]  C. Earle Quality of Care , 2007 .

[38]  J Alonso,et al.  Provision of feedback on perceived health status to health care professionals: a systematic review of its impact. , 2000, Medical care.

[39]  D. Osoba,et al.  Patients' experiences using a computerized program with a touch-sensitive video monitor for the assessment of health-related quality of life. , 1998, Quality of Life Research.