The importance of reflecting patient views and measuring not only the clinical outcomes of cancer treatments, but also the impact on a patient's quality of life, is increasingly being recognised in healthcare. Following the award of an educational grant from Roche, RAND Europe explored how quality of life measures are being used in the treatment and care of patients with cancer and the implications for future policy and practice.

Cover: The Use and Impact of Quality of Life Assessment Tools in Clinical Care Settings for Cancer Patients, with a Particular Emphasis on Brain Cancer

The Use and Impact of Quality of Life Assessment Tools in Clinical Care Settings for Cancer Patients, with a Particular Emphasis on Brain Cancer

Insights from a Systematic Review and Stakeholder Consultations

Published in: Quality of Life Research, v. 25, no. 9, Sep. 2016, p. 2245-2256

Posted on RAND.org on April 15, 2016

by Sarah King, Josephine Exley, Sarah Parks, Teresa Bienkowska-Gibbs, Calum MacLure, Emma Harte, Sarah Ball, Katherine Stewart, Jody Larkin, Andrew Bottomley, et al.

Research Questions

  1. Are QoL tools being used in clinical settings dealing with cancer, particularly brain cancer?
  2. What effect are the tools having for patients?
  3. What could facilitate tools' usage?
  4. What are some barriers to their use?

Purpose

Patient-reported data are playing an increasing role in health care. In oncology, data from quality of life (QoL) assessment tools may be particularly important for those with limited survival prospects, where treatments aim to prolong survival while maintaining or improving QoL. This paper examines the use and impact of using QoL measures on health care of cancer patients within a clinical setting, particularly those with brain cancer. It also examines facilitators and challenges, and provides implications for policy and practice.

Design

We conducted a systematic literature review, 15 expert interviews and a consultation at an international summit.

Results

The systematic review found no relevant intervention studies specifically in brain cancer patients, and after expanding our search to include other cancers, 15 relevant studies were identified. The evidence on the effectiveness of using QoL tools was inconsistent for patient management, but somewhat more consistent in favour of improving patient–physician communication. Interviews identified unharnessed potential and growing interest in QoL tool use and associated challenges to address.

Conclusion

Our findings suggest that the use of QoL tools in cancer patients may improve patient–physician communication and have the potential to improve care, but the tools are not currently widely used in clinical practice (in brain cancer nor some other cancer contexts) although they are in clinical trials. There is a need for further research and stakeholder engagement on how QoL tools can achieve most impact across cancer and patient contexts. There is also a need for policy, health professional, research and patient communities to strengthen information exchange and debate, support awareness raising and provide training on tool design, use and interpretation.

Key Findings

  • QoL tools are not being used widely with cancer patients, but their use may improve doctor-patient communication and could potentially improve care.
  • QoL measures would be particularly helpful to clinicians if recommendations for interpreting the scores were made available.
  • Personnel resources, time constraints, and lack of awareness about QoL tool availability can be barriers to use.
  • Standardization of tools could help facilitate QoL tool use, but allowing tool adaptation to specific diseases or patient needs, such as end-of-life care, would be useful.

Recommendations

  • Policy, clinician, research, and patient communities need to work together to understand the benefits and limitations of tools, how to use and adapt them, how to interpret the data, and how to help patients use the tools to empower them to make personal choices about their care.
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