The Use of Patient-reported Outcomes at an Individual Level – Benefits and Challenges
practice. Bezjak et al. suggested that in order to maximise physician use of HRQoL information, the data must be presented in ways that are more clinically relevant.21
Computer-adapted Testing
To overcome some of the logistical drawbacks, results related to computer-adapted testing (CAT) proved encouraging in some studies, and showed that even elderly patients or those with terminal illness have little problem in using moderately complex technology when suitable interfaces are provided.4
CAT opens the
door to a new class of questionnaires that can focus on the specific domains important for patients under given circumstances or in specific situations. For example, a question could ask about how easy it is to walk a short distance. For a ‘no problem’ response, the next question could be about jogging rather than a question about confinement to bed, leading to positive interaction. CAT techniques allow for a reduction in the number of questions asked by using closely targeted items to obtain a more precise evaluation of patient condition.4
Conclusion
The use of PROs at an individual level has proved to be useful in clinical practice. For the wider application of HRQoL measures and to gain greater benefit from these measures, it is necessary to provide opportunities for clinicians and healthcare workers to better familiarise themselves with the purpose and application of HRQoL, as well as the interpretation of their outcomes.
Training related to PROs must cover considerations such as the selection of key instruments and their development, administration and scoring. Logistics is another important factor. Advising HCPs on how to organise the implementation of these measures may decrease the burden on them and lead to a greater use of PROs in clinical practice. The adequate distribution, collection, analysis and interpretation of PROs is a prerequisite and integral to their success. The availability of baseline HRQoL questionnaires should be a standard criterion for comparison, especially when HRQoL assessment is carried out in patients with different kinds of chronic health condition before treatment, particularly those with cancer. CAT gives the opportunity to present tailor-made questions in any clinical setting to provide prompt information to HCPs.
More research is required in terms of how to manage the differences between the views of patients and clinicians in relation to HRQoL issues to be covered at clinician–patient encounters. National and local healthcare systems may need different solutions. It is necessary to involve other HCPs, not just clinicians, in communicating QoL concerns. The aims of PRO instruments are different. Some of them are intended to be used for monitoring a treatment, others for predicting treatment preferences or likely response to a given therapy. Educating HCPs on these differences must also be part of their CME. Further research and training is also required on how to interpret HRQoL outcomes in terms of prediction of survival.
Well-developed, integrated, international and national systems that take into consideration all the factors that can influence patient outcomes, including age, gender, cancer site, cultural differences, type and combination of questionnaires, administration setting
EUROPEAN ONCOLOGY
and clinical data, may facilitate the application and improve interpretation of PROs at an individual level and lead to better HRQoL.
Another question requiring more research is: ‘What are the most effective ways to communicate PRO results directly to the patient?’ The lessons learned from this article are that patient concerns in psychological and family matters are not raised as often as patient needs may require, given that there appears to be a serious reticence among both clinicians and patients to discuss such matters. Regardless of the outcome of consultations that included PROs, patients did appreciate the use of PROs in clinical settings and showed higher satisfaction with medical care and even better health outcomes in many symptoms and domains.
The measurement of how patients with different personalities are likely to interpret their own data should be considered a requirement, as this area could hold fruitful research findings.
Clinicians are now able to consider planning cancer treatments on the basis of PROs. This may help fulfil, at least in part, the continually increasing expectations of patients and address the needs of the increasing number of patients requiring chronic care in an ageing society.
In many types of cancer survival is increasing, which may lead to extended needs for medical and psychological management. Treatment options that lead to a higher QoL may be the outcome of HRQoL research. It also makes room for and facilitates the informed decision-making of patients. Given the proven prognostic value of PRO data, patients and clinicians may benefit from applications that could lead to a higher quality of care at all disease stages. Based on our reasoning and the evidence presented, we consider HRQoL an essential element for clinicians to assess and consult with their patients, not only in clinical trials but also in clinical practice, because it can lead to an improvement in the care of patients. n
Agnes Czimbalmos is a paediatrician. She started her career as a practising physician and an associate professor, and later held different positions in public health. She has been involved in quality of life (QoL) and health-related quality of life (HRQoL) research for more than a decade. Dr Czimbalmos is a member of the Stakeholder Dialogue Group of the Directorate General of Health and Consumers (SANCO) of the European Commission, and advises on process matters to
facilitate stakeholder involvement. She served as an evaluator of project proposals submitted to the Research Framework Programmes and the Public Health Programme of the European Commission and is the author/co-author of 13 scientific papers.
Andrew Bottomley is Head of the European Organisation for Treatment of Cancer (EORTC) Quality of Life Department and Assistant Director at EORTC. He has published 98 peer-reviewed papers in major cancer journals and 20 book chapters, and has co-authored 170 peer-reviewed abstracts for international conferences. He serves on 10 Editorial Boards, including The Lancet and The Lancet Oncology, and he is Editor of the Journal
of Pharmaco-economics & Outcomes Research and
Associate Editor of the European Journal of Cancer Care. Professor Bottomley is on the ethical committee of the World Health Organization (WHO) International Agency for Research in Cancer in Lyon, and serves as both scientific and ethical advisor to the European Commission for the 7th Framework Programme.
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