The Use of Patient-reported Outcomes at an Individual Level – Benefits and Challenges

European Oncology, 2010;6(1):19-22

Abstract:

The aim of this article is to review the application of patient-reported outcomes (PROs) in clinical care and consider its benefits, challenges and potential improvements. Previous studies demonstrated that health-related quality of life (HRQoL) data provide information to clinicians on patient health status, QoL, symptoms and wellbeing, along with any changes in these, and helps clinicians judge the needs of patients and tailor treatments accordingly. In addition, the benefits of the application of HRQoL tools include the involvement of patients in informed decision-making in terms of their treatment or care, higher patient satisfaction with healthcare services, improved patient–clinician relationships and better communication. In many studies, health professionals have expressed their interest in using these measures but feel they need to better understand them. Despite the wide use of information-gathering questionnaires and their promising results, it is still a challenge to predict the full value of these measures in clinical care. This article addresses these major concerns.
Keywords: Health-related quality of life (HRQoL), patient-reported outcomes (PROs), patient–physician relationship, patient–physician communication, computer-adapted testing (CAT), tailor-made healthcare
Disclosure: This research is supported by grant numbers 5U10-vCA11488-29–5U10 CA11488-37 from the National Cancer Institute (Bethesda, MD), the European Organisation for Research and Treatment of Cancer (EORTC) and the Charitable Trust. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute.
Received: September 30, 2009 Accepted March 22, 2010 Citation European Oncology, 2010;6(1):19-22
Correspondence: Agnes Czimbalmos and Andrew Bottomley, European Organisation for Research and Treatment of Cancer, AISBL-IVZW, Avenue E Mounier, 83/11, Brussels 1200, Belgium. E: agnes.czimbalmos@t-online.hu and andrew.bottomley@eortc.be

While the need to assess the impact of a disease and its treatment on the functional, psychological and social health of patients was raised eons ago, clinicians have only recently embraced the importance of health-related quality of life (HRQoL).1 Over the past decade greaterinterest has been centred on HRQoL at an individual patient level2 by clinicians and other health and social care professionals, recapturing, without question, the ancient idea of including patient-reported outcomes (PROs) as part of patient medical records.3 PROs gain more importance when seen to aid the management of individual patients.2 PROs are increasingly used in oncology because both cancer and its treatment are severely debilitating and clinicians consider the outputs of these questionnaires when making patient management or treatment decisions.4 Furthermore, patients want to be wellinformed about treatment options and to be involved in any decisions in terms of their treatment and care.5 Previous studies by the European Organisation for Research and Treatment of Cancer (EORTC) have proved that HRQoL measurement findings may help when choosing the best treatment options for oncology patients.4,5 HRQoL has also proved to be a prognostic variable that can be important in guiding treatment decisions when alternatives demonstrate similar survival outcomes.6,7
Measuring Health-related Quality of Life
HRQoL is a subjective, multidimensional construct that encompasses domains such as general health, physical symptoms, physical functioning, emotional wellbeing, cognition, role functioning, social wellbeing, sexual functioning and spirituality.8,9

While PROs measure patient self-view of health status and wellbeing, health outcome measurements (HOMs) measure changes in the health status3 and wellbeing of patients as a result of medical intervention, or the lack of it. This implies that HOMs are responsive to change following an intervention and they can be repeated over time.
References:
  1. Bottomley A, Coens C, Mauer M, Practical, design and analysis issues of Health Related Quality of Life studies in international randomized controlled cancer clinical trials, In: Kelly K, Halabi S, (eds) The Fundamentals of Clinical Oncology Trials, Demos Medical Publishing, in press.
  2. Greenhalgh J, The applications of PROs in clinical practice: what are they, do they work and why? Qual Life Res, 2009;18:115–23.
  3. McColl E, Christiansen T, Konig-Zahn C, Making the right choice of outcome measure In: Hutchinson A, Bentzen N, Konig-Zahn C, (eds) Cross Cultural Health Assessment: a user’s guide, ERGHO European Research Group on Health Outcomes, The Netherlands, 12–22.
  4. Fayers P, Bottomley A: on behalf of the EORTC Quality of Life Group and of the Quality of Unit, Quality of life research within the EORTC-the EORTC QLQ-C30, Eur J Cancer, 2002;38:S125–S133.
  5. Bottomley A, Aaronson NK, International Perspective on Health-Related Quality-of-Life Research in Cancer Clinical Trials: The European Organisation for Research and Treatment of Cancer Experience, J Clin Oncol, 2007;25: 5082–6.
  6. Chochinov HM, Depression in cancer patients, Lancet Oncol, 2001;2:499–505.
  7. Degner L, Soan J, Symptom distress in newly diagnosed ambulatory cancer patients and as a predictor of survival in lung cancer, J Pain Symptom Manage, 1995;10:423–31.
  8. Ferrans CE, Development of a quality of life index for patients with cancer, Oncol Nurs Forum, 1990;17:15–19.
  9. Movsas B, Quality of life in oncology trials: a clinical guidance, Semin Radiat Oncol, 2003;13:235–47.
  10. Constantini M, Mencaglia E, Giulio PD, et al., Cancer patients as ‘experts’ in defining quality of life domains. A multicenter survey by the Italian Group for the Evaluation of Outcomes in Oncology (IGEO), Qual Life Res, 2000;2: 151–9.
  11. Harris K, Chow E, Zhang L, et al., on behalf of the EORTC Quality of Life Group: Patients’ and health care professionals’ evaluation of health-related quality of life issues in bone metastases, Eur J Cancer, 2009;(45)2510–18.
  12. Lussier MT, Richard C, Because one shoe doesn’t fit all: a repertoire of doctor-patient relationships, Can Fam Physician, 2008;54:1089–92.
  13. Detmar SB, Aaronson NK, Wever LD, Muller M, Schornagel JH, How are you feeling? Who wants to know? Patients’ and oncologists’ preferences for discussing health-related quality-of-life issues, J Clin Oncol, 2000;18: 3295–3301.
  14. Stewart M, Brown JB, Hammerton J, Donner A, et al., Improving communication between doctors and breast cancer patients, Ann Fam Med, 2007;5:387–94.
  15. Stewart MA, Effective physician-patient communication and health outcomes: a review, CMAJ, 1995;152:1423–33.
  16. Brunelli C, Constantini M, Di Giulio P, et al., Quality-of-life evaluation: when do terminal cancer patients and health care providers agree?, J Pain Symptom Manage, 1998;15: 151–8.
  17. Petersen MA, Larsen H, Pedersen L, et al., Assessing health-related quality of life in palliative care: comparing patient and physician assessment, Eur J Cancer, 2006;42: 1159–66.
  18. Feldman-Stewart D, Brundage MD, A conceptual framework for patient-provider communication: a tool in the PRO research tool box, Qual Life Res, 2009;18:109–14.
  19. Detmar SB, Aaronson NK, Quality of life assessment in daily clinical oncology practice: a feasibility study, Eur J Cancer, 1998;34:1181–6.
  20. Bottomley A, Vanvoorden V, Flechtner H, Therasse P; on behalf of the EORTC Quality of Life Group and the EORTC Data Center, The challenges and achievements involved in implementing Quality of Life research in cancer clinical trials, Eur J Cancer, 2003;39:275–85.
  21. Bezjak A, Skeel R, Depetrillo AD, et al., Oncologists’ use of quality-of-life information: results of a survey of Eastern Co-operative Oncology Group (ECOG) physicians, Qual Life Res, 2001;10:1–13.
Keywords: Health-related quality of life (HRQoL), patient-reported outcomes (PROs), patient–physician relationship, patient–physician communication, computer-adapted testing (CAT), tailor-made healthcare
Customize This