JMIR Publications

ABSTRACT

Background:

Online information resources and support have been demonstrated to positively influence the wellbeing of people diagnosed with cancer. This has been explored in past literature for more common cancers, however for rare cancers, such as Neuroendocrine tumours (NETs), there are little to no support or resources available. Despite relatively good prognoses, the quality of life (QoL) of patients with NETs is significantly lower compared to samples of mixed cancer patients and the general population. Patients with NETs also typically report unclear and difficult pathways of disease management and treatment. There is a vital need to improve the availability of disease-specific information for this patient group and provide supportive care that is tailored to the unique needs of the NET patient population.

Objective:

The aims of this study are to better understand the outcomes and experiences of patients diagnosed with NETs and to develop and pilot test a nurse-led online and phone-based intervention that will provide tailored supportive care targeted to NET subgroups (functioning versus non-functioning).

Methods:

This is a multi site cohort with three phases, incorporating both quantitative and qualitative data collection. Phase one is a mixed-methods prospective cohort study of NETs patients identifying differences in patient experiences and priority of needs between NET sub-groups. Phase two utilises results from phase one to develop an online and nurse-led phone-based intervention. Phase three is to pilot test and evaluate the intervention’s acceptability, appropriateness and feasibility.

Results:

Currently the project is progressing through Phase one and has completed recruitment. A total of 138 participants have been recruited to the study. To date patient reported outcome data from 123 participants at baseline and 87 at 6-month follow-up has been collected. Of these, qualitative data from semi-structured interviews from 35 participants has also been obtained. Phase two and Phase three of the project is yet to be completed.

Conclusions:

Limited research for patients with NETs suggests QoL and patient experiences are significantly impaired compared to the general population. Furthermore, past research has failed to delineate how the clinical variability between those with functioning and non-functioning NETs impacts on patient supportive care needs. This study will improve on the availability of disease-specific information as well as informing the design of a nurse-led online and phone-based supportive care intervention tailored for the unique needs of the NET patient population. Clinical Trial: Ethics approval was obtained from the Human research Ethics Committee of Peter MacCallum Cancer Centre (project number 16/08L), Human research ethics committee of the Northern Sydney Local Health District in NSW (project number RESP/16/73) and The Human research ethics committee of the central Adelaide Local Health Network in SA (project number Q20160901). Results will be widely disseminated to the funding body, oncology conferences and meetings and through peer-reviewed publications.