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New research shows quality of life measures not widely used in cancer care

A new study, conducted by the not-for-profit research organisation RAND Europe, has found that measures and tools used to assess quality of life are not being used widely in the treatment and care of patients with cancer, despite being used more widely in clinical trials.

Following the award of an educational grant from Roche*, RAND Europe explored whether, when and how quality of life assessment tools and measures are used in the treatment of patients with cancer, with a particular – but not exclusive – focus on brain cancer, and whether this has an impact on clinical decisionmaking. Quality of life assessment tools and measures generally take the form of questionnaires, which are used to measure the patient’s point of view on one or more aspects of their quality of life.

Through interviews with experts, a stakeholder consultation at the International Brain Tumour Alliance 2nd World Summit and a systematic review of literature on this subject, the study highlights a range of challenges that would need to be addressed before quality of life measures and tools might be used more widely. These include addressing the current lack of awareness of the measures and tools by clinicians, a lack of time to administer the measures, a lack of policy and guidelines on how to use quality of life assessment measures and tools in care settings, and a lack of guidance on how to interpret and act on the results they produce.

One nurse, who was interviewed as part of the study, reflected on these challenges: “It is difficult to interpret patients’ responses – clinicians are used to looking at physical symptoms and find it difficult to adapt to incorporating the patient’s assessment of their symptoms into their decision-making.”

However, the study did find evidence to suggest that quality of life measures and tools may improve patient-physician communication, with this allowing both doctors and patients to discuss sensitive issues identified as being important by the patient.

Although tools for measuring quality of life are not routinely used in oncology care settings, diverse experts interviewed by the study team all recognised the importance of considering the impacts of treatment and care decisions on a patient’s quality of life, and noted that engaging with quality of life issues may be particularly important for cancers when survival prospects are limited. In such instances, treatments aim to extend survival or delay progression while maintaining or improving a patient’s quality of life.

A neurologist, who was interviewed as part of the study, highlighted this point: “People are willing to accept side effects if they’ll survive, but for diseases like brain cancer where there is no cure you look quite differently at measures such as quality of life.”

Based on the research findings from the study, RAND Europe has recommended further awareness raising, information exchange and engagement between health professionals, patient groups and policymakers on whether and how quality of life assessment measures and tools can help patients with cancer.

Sonja Marjanovic, the principal investigator of the study at RAND Europe, says: “There seems to be unrealised potential in using quality of life assessment tools and measures as an aid in clinical decision making. Despite the widely-accepted view that the impact of treatment and care-decisions on a patient’s quality of life needs to be considered, our research shows that quality of life measures are still not widely adopted or systematically used in clinical practice. Further research and policy engagement is needed to consider whether, when and how these measures may be of most benefit, and how they could be integrated into current health system infrastructures and processes.”

Josephine Exley, a senior analyst at RAND Europe, said: “Our study has gone a long way in highlighting the potential of quality of life measures when making decisions about the treatment and care of patients with cancer. However, the documented evidence base on this topic is still limited. There is a need to better understand how the feasibility and impact of using quality of life measures and tools are affected by a variety of factors, such as the type of cancer, stage of the disease, patient profile, type of tool or measure and health system factors.”

To view the full report ‘Are Quality of Life measures used in the treatment and care of cancer patients?’ visit: http://www.rand.org/pubs/external_publications/EP66423.html.