TCRN Conference Grants Series: Ms Anne Booms, Oncology Nurse Practitioner

TCRN Member Anne Booms; Conference Grant recipient TCRN Member Anne Booms; Conference Grant recipient

Quality of Life considerations in therapeutic research – putting the patient experience first

Examining the importance of using a patient’s perception and experience whilst they undergo new and pioneering clinical trials opens opportunities for discussion of scientific progress and policy in quality of life (QOL) research. I was excited to attend the 3rd European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life, Symptom Research and Patient Reported Outcomes in Cancer Clinical Trials Conference in Brussels, Belgium with the support of a 2012 TCRN International Professional Development Grant. This conference brought together an international faculty, providing diverse opinions on QOL from across the globe. Brussels is a beautiful city with a vibrant culture, heritage and of course, its famous chocolates. Personally, going to Belgium was also visiting my home country again and to observe Brussels as a tourist.

With Brussels being the economic centre of Europe, the conference aptly commenced with a health economics debate led by Dr Marisa Matias, University of Coimbra Portugal. Dr Matias talked about increasing health care costs and the use of expensive biological therapies in cancer care contributing to financial strain borne by patients. Cost is now considered a therapeutic “side effect” that poses a significant financial burden to patients. Physicians are facing the task of selecting which patients are worthy of treatment considering their age, stage of disease, financial commitment and the impact on QOL of the cancer treatment being considered. Although issues in relation to the economic impact of cancer treatments need to be addressed, policy makers have raised questions around the effect of such treatment decisions on equity of care.

Improving patient QOL during the cancer treatment process requires a translational research pathway similar to that used in developing curative cancer therapies, according to Prof Charles Cleeland, Department of Symptom Research, University of Texas. Prof Cleeland highlighted that cancer treatment causes high symptom levels that limit treatment tolerability, with patient biology playing a significant role in determining the risk of symptom burden. Prof Sloan from the Mayo Clinic, Minnesota USA, explored the concept of patient reported outcomes and genetic makeup as a novel approach to assessing QOL outcomes. He discussed how developing new methods to predict and prevent symptom burden will become part of personalised cancer care. Translational pathways can be used as a strategy to speed up the steps between basic science and patient use for curative treatments.

Assessing QOL in advanced stage trials can inform patients and physicians about risks and benefits, and can identify ways to improve cancer treatments. We also know that patients with advanced stage cancers are likely to be older. Dr Carol Moinpour from the Fred Hutchinson Cancer Research Centre, Seattle Washington, concluded from health-related (HR) QOL value studies that aging assessment issues are affecting HRQOL outcomes and the provision of HRQOL data. Practical data collection issues may include comorbidities, polypharmacy, social support, and functional and mental status. However improved medical literacy and the successful use of self-reporting methods, together with better statistical methods for analysing datasets with non-random missing data, will lead to more confidence in HRQOL findings.

A key take home message of the conference is that QOL research is an important aspect of clinical trials in cancer care. In general, there are many underlying issues in using self-reported data, patient perspectives and the interpretation of collected subjective data. There is no standard approach to study design, collection, analysis and interpretation of data in clinical trials. QOL objectives need to reflect realistically on expectations versus experiences.

Despite the challenges we face in the provision of cancer care, patient QOL should remain our main concern. Ongoing engagement in international fora such as the EORTC meeting will allow clinicians and researchers to keep up-to-date with the latest advances and achievements in improving the QOL of our cancer patients. In turn, we must consider our own contribution to the design and implementation of QOL assessment in our efforts to improve cancer patient care.

Anne Booms was recipient of a TCRN International Professional Development Grant for attendance at the 3rd EORTC Quality of Life, Symptom Research and Patient Reported Outcomes in Cancer Clinical Trials Conference, held in Brussels, Belgium in October 2012.

Anne is an Oncology Nurse Practitioner with Albury-Wodonga Health, Albury Campus, working across a range of tumour streams in adult oncology. She is a site Principal Investigator on the 2012 TCRN Cancer Challenge of the Year – Spaced Education: a tool to help translate pain assessment and management evidence into routine cancer care practice.

Anne is a member of the Border Medical Oncology Research Unit (BMORU) TCRN member group, and currently provides patient support and follow up to patients admitted under the BMORU clinical research programs, in collaboration with the trial nurses. In 2013, Anne plans to expand her research activity by investigating outcomes and quality of life issues of cancer patients in regional NSW & Victoria.