Translational Cancer Research Unit Exploring information-seeking preferences of patients with cancer and their primary support person Dr Sylvie Lambert The University of New South Wales Specialist Cancer Nurses (Cancer Care Co-ordinators, Breast Care Nurses, Clinical Nurse Consultants) from the cancer care coordination network within the Hunter New England Local Health South Western Sydney Clinical School, Faculty of Medicine, UNSW

Background Most patients and their primary support person cope with the challenges posed by a cancer diagnosis by seeking as much cancer information as possible. However, individuals are often dissatisfied with the information they receive from health care professionals and obtain from other sources of information. Question: How can we effectively meet patients’ and their primary support person’s information needs? Answer: It is increasingly recognised that for patients and primary support persons to benefit from cancer information, it needs to match their information-seeking preferences.

Aims Examine the information-seeking preferences of individuals diagnosed with cancer and their primary support person, including documenting change over time Develop and test a short screening tool to assess information- seeking preferences in clinical practice Document patients’ and primary support persons’ satisfaction with the information they received and sought Identify gaps in information resources currently available and put forth recommendations to address these gaps

Sample Sample: 100 patients diagnosed cancer and their primary support person Inclusion criteria are: diagnosed with primary, early-stage cancer within the previous 2- 4 months sufficient fluency in English be cognitively able to read study materials and complete surveys

Procedures Identify eligible patients, provide a study pack and obtain verbal consent for a member of the research team to follow- up with non-responders 1-2 weeks post- baseline 4-5 months post- baseline Patient’s information is forwarded to the research team Research team then corresponds with non-responders Second survey sent 5-6 months post-baseline Baseline1 week post- baseline 7-8 months post- baseline 25 patients and primary support persons invited to participate in phone interview

Data collection -Comprehensive survey measuring (baseline and 5-6 months after) -Challenges and concerns -Information-seeking preferences -Satisfaction with information received/obtained to address challenges -Information resources they would have liked to have access to -25 semi-structured, phone interviews (7-8 months post-baseline) -Questions will be designed to elicit participants’ opinions regarding the information they have received and the gaps in information resources -Interviews anticipated to last between 1 to 1.5 hours and will be audio-recorded and transcribed verbatim

Project milestones MilestonesTarget dates Develop study packs and submit ethics applicationJune 2012 Ethics approval obtainedSeptember 2012 Start recruitment (approx. 2 months post-diagnosis)October 2012 Interim presentation to teamFebruary 2013 Start 6-8 months post-diagnosis follow upFebruary 2013 Interim presentation to teamMay 2013 Recruitment completedMay months post-diagnosis follow up completedAugust 2013 Interim presentation to teamOctober 2013 Complete interviewsDecember 2013 Final presentation to teamMay 2014

Summary and significance The timely access to information is a cornerstone across a number of cancer clinical practice guidelines. This project will… -Further our understanding on appropriate methods to capture patients’ and primary support persons’ information-seeking preferences – with the ultimate goal of developing a short screening that can be used in practice -Provide information about how information resources can be improved to meet patients’ and primary support persons’ information needs -Lay a platform to advocate for evidence-based recommendation for information provision and improvements of information resources

Discussion and questions Aims -Are these relevant? Additional ones? Sample -Inclusion criteria – are we excluding important groups? -Timing of recruitment – too early/too late? Procedures -Are the recruitment procedures feasible? -Other suggestions? -How will patient information be forwarded to the research team? Fax, , phone? Data collection -Should we be measuring other outcomes?