ALTG 13/004 OPAL: Online and Phone Assistance for Lung cancer – C Paul
Lung cancer patients often experience poorer prognosis, more severe physical effects and more pronounced psychosocial distress than patients with other major cancers and their numbers are under-represented in accessing telephone helplines provided by the Cancer Council in each state. The OPAL study is a randomised controlled trial that aims to evaluate online versus telephone-based information and support for people with lung cancer. Recently diagnosed lung cancer patients are recruited through participating hospital sites, then after completing a baseline survey, participants are randomised to one of three types of assistance provided by the Cancer Council NSW:
- Best-standard care (a printed “Understanding Lung Cancer” information booklet);
- Proactive Telephone-Delivered Support and Information from a trained oncology nurse consultant; or
- Proactive Online Delivered (email and live chat) Support and Information from a trained oncology nurse consultant.
Participants are asked to fill out a pen and paper survey at the time of recruitment to the study (baseline), then at 3 and 6 months later.
Patient recruitment has continued to track lower than was anticipated, however it has continued to progress at a steady rate. Site recruitment number reached 49 sites, with participating sites in all Australian states except NT and ACT. Patient recruitment had been due to conclude at the end of 2016, however in an attempt to increase participant numbers, the option to extend recruitment to the end of June 2017 was put forward to sites. 27 sites elected to continue with patient recruitment to the end of June 2017. The decision was recently made, from a resource perspective, to cease recruitment a little earlier than originally anticipated (the end of April 2017).
To date we have recruited 383 participants to the trial. Participant withdrawal has been a continual challenge, attributable to the difficulties in recruiting from the lung cancer patient population.
Cancer Council NSW consultants continue to deliver information, support and assistance to participants (via letters, outbound phone calls and web chats/email support).
Encouraging participants allocated to the online arm to engage with the online chat service has been a continual challenge, despite an ethically approved, systematic reminder and follow up process being carried out with online arm participants.
Participant follow-up, via follow up surveys, will continue to the end of 2017.
We anticipate working with the data to the end of 2018. Renewal ethics applications will be submitted to the relevant HRECs, and RGOs will be notified of this approval.
The protocol paper for the study, titled Protocol for a randomised controlled trial of proactive Web-based versus telephone-based information and support: Can electronic platforms deliver effective care for lung cancer patients?, was published in JMIR Research Protocols.
A systematic review, titled Techniques for Improving Communication of Emotional Content in Text-only Online Therapeutic Communications – A Systematic Review, is currently being considered by a peer-reviewed journal.
Two papers prepared as part of a sub-study of OPAL are currently undergoing submission to peer-reviewed journals. Help-seeking behaviour in newly diagnosed lung cancer patients: assessing the role of perceived stigma is currently being considered by the Supportive Care in Cancer journal. The second paper, titled The impact of perceived stigma on lung cancer patients: a cross-sectional analysis of treatment expectations and preferences, will be submitted to the BMC Cancer journal.
The OPAL research team gratefully acknowledges the continued support of the ALTG, Lung Foundation Australia and the Cancer Council NSW, as well as the participating site staff and patients.
Associate Professor Christine Paul firstname.lastname@example.org or (02) 4042 0693.