Successes and achievements of the EORTC PROBE project

PROBE, Patient Reported Outcomes and Behavioral Evidence, is a project designed to illuminate many critical albeit underappreciated topics that have a significant impact on psychosocial and Health Related Quality Of Life (HRQOL) issues in the care of patients with cancer. PROBE strives to develop a deeper understanding of these issues not only in relation to common cancer disease sites such as breast and colorectal, but also in rarer diseases such as glioblastoma, small cell lung cancer, and mesothelioma. Data that are obtained over the course of this project will provide an invaluable insight into the plethora of psychosocial issues that cancer patients face across different cultures and at different times in the disease cycle. As such, these data will help future researchers, health care workers, and governments to plan patient care, clinical trials, and services for improved psychosocial/HRQOL care. The PROBE database will provide unique research opportunities for investigators interested in psychosocial oncology.

The PROBE project is supported by Global Health Partnerships, GHP, whose goal is to support the growth of promising cancer and tobacco control organizations united by the shared mission of accelerating the pace of progress in the fight against cancer. Geographically, GHP targets Asia, Africa, Latin America, Middle East, Europe, the United States, and Canada. GHP began operating in 2007, and the Pfizer Foundation together with the Pfizer country offices have committed $47 million of support over a four year period (2008-2011) to 31 Global Health Partnerships grantees impacting more than 45 countries. The EORTC Quality of Life Department is one of these recipients with the PROBE project. GHP grants are managed by four intermediaries: the King Baudouin Foundation US, Give 2 Asia, TCC Group, and The Resource Foundation with oversight from the Pfizer Foundation.

Near term goals of the PROBE project include publishing articles in key journals in order to help raise the visibility and boost improvements in the psychosocial aspects of care for cancer patients. PROBE plans psychosocial symposiums to discuss results, explore key topics, and reach consensus with senior partners and institutions concerning the program and results as well as to assess analysis or plans within the program. PROBE raises awareness of the psychosocial and HRQOL status of cancer patients among policymakers and healthcare workers by presenting its findings and results at major conferences in collaboration with participating partners.

Over the past three years PROBE has been very active and has published numerous abstracts, given a number of presentations (oral and poster), and organized several symposia. Scientific presentations concerning PROBE have been made at numerous conferences including those conducted by American Society for Clinical Oncology (ASCO), European Society for Medical Oncology (ESMO), International Union against Cancer (UICC), International Society for Pharmacoeconomics and Outcomes Research (ISPOR), International Society for Quality of Life Research (ISOQOL), European CanCer Organisation (ECCO), and Multinational Association of Supportive Care in Cancer (MASCC). PROBE investigators were invited to present at the British Columbia Cancer Agency in Vancouver, the EORTC Quality of Life Department meeting in Rome, German Cancer Congress in Berlin, as well as at an internal EORTC staff educational session on PROBE and psychosocial issues.

PROBE investigators have been invited to several EORTC Groups meetings to give presentations on the psychosocial care of cancer patients. These EORTC Groups have included the EORTC Brain Tumor Group, EORTC Gynecological Cancer Group, EORTC Radiation Oncology Group, and the EORTC Breast Cancer Group. Invitations such as these allow the PROBE team to educate and train researchers, clinicians and other health care professionals on how they can improve psychosocial care during treatment of their cancer patients and demonstrate the keen interest from the medical world in the work PROBE is doing. Furthermore, these opportunities to speak to the EORTC Groups members helps to improve the visibility of PROBE and its work concerning the psychosocial needs of cancer patients.

Recently, PROBE hosted a mini Symposium on PROBE at the UICC held in Shenzhen, China. The following presentations were given:

• Andrew Bottomley: HRQOL and the EORTC: Making best use of existing HRQOL clinical trial data: Key results from PROBE
• Chantal Quinten: Quality of Life as prognostic factor in cancer
• Francesca Martinelli: A symptom index for cancer patients based on the QLQ-C30
• Corneel Coens: Statistical analysis of HRQOL data in clinical trials: current issues
• David Collingridge: Publishing PRO and QOL studies in high impact oncology journals

The UICC Board also invited PROBE to give a presentation during the plenary session highlighting its results to date.

Another mini symposium being hosted by PROBE will take place at the EORTC Quality of Life Department Group meeting on 24 September 2010, in Leipzig. The agenda for this symposium includes the following presentations:

• Andrew Bottomley: HRQOL and the EORTC: Making best use of existing HRQOL clinical trial data: Key results from PROBE
• Chantal Quinten: Survival prognostication in EORTC clinical trials
• Francesca Martinelli: Exploring internal relationships among EORTC QLQ-C30 indicators from EORTC clinical trials
• John Maringwa: Answering the EORTC group’s questions? What do EORTC clinical trials tell us about minimal clinically important differences?

Last year’s inaugural PROBE symposium could become an annual affair and provide a forum for teaching key issues in psychosocial care and for training fellows in better psychosocial care. Indeed, considering the success of that first PROBE symposium and the call for more courses, we wish to establish this symposium as a model for future global conferences. The PROBE team plans to conduct its second Symposium in September 2011 and anticipates an audience of 600 people.  Andrew Bottomley recently negotiated for this event to be hosted by the European Parliament who will provide the financial support for the symposium. This arrangement will significantly increase the political focus of the event and increase awareness of the importance of psychosocial issues among the European Parliament membership, the 27 EU member states, and other non-EU member states. Keynote speakers from the European Parliament will include Marisa Matias, Member of the European Parliament and Chair of the Forum against Cancer Europe (FACE) as well as representatives from MEPs Against Cancer (MAC). Members of the news media will be invited to attend this symposium, among whom will be David McNamee, Senior Editor, The Lancet. Overall, this level of participation and coverage connotes excellent recognition of the work that has been carried out by PROBE thus far and demonstrates that the European Parliament and its members are keen to be involved in our work and eager to help improve the psychosocial care of cancer patients

In order to sustain efforts in this important area of cancer patient care, PROBE plans to continue seeking grant and sponsor support. To date, several grants proposals have been submitted, and work in this regard will continue during the second half of 2010. Initially, we did not anticipate such broad success and interest from so many international bodies, such as the National Cancer Institute of Canada – Clinical Trials Group (NCIC-CTG), the Medical Research Council (MRC), and the Arbeitsgemeinschaft Gynaekologische Onkologie Group (AGO), for the PROBE project, but having piqued this interest, we look forward to continuing this project that addresses such important and widely appreciated needs.

Over the long term, efforts by the PROBE team will result in a consensus statement concerning psychosocial and HRQOL issues supported by key psychosocial groups, will address the most topical areas in psychosocial oncology, and will thereby lead to improved services. PROBE envisages the assembly of a database of key psychosocial and HRQOL data that will be useful for future research and for exploring key questions in psychosocial oncology. Thus, PROBE can play an important role in helping to facilitate the planning of new treatments and promote a better understanding of cancer care. PROBE is a means and a way to promote understanding and discussion of the values of psychosocial/HRQOL issues and their practical impact on patients with cancer.

For more information about PROBE, please see: www.eortc.be/probe

John Bean, Chantal Quinten, and Andrew Bottomley