The exponential number of breast cancer survivors (BCS) provides opportunity to develop novel e-health systems that facilitate efficient follow-up care. A pilot study aimed to test the utilisation and acceptability of an on-line programme designed for BCS called Healthy Me (HM).
HM design included registration data input (patient demographics, pathology results), tailored information (‘journeys’) regarding common survivorship issues (hot flushes, sexual health etc.); moderated forums, modifiable medication lists and on-line diaries; and email/scheduling functions with their healthcare team.
From November 2011 to June 2012, fifty female English-speaking early BCS, aged 18-70 years with internet access were prospectively recruited from Liverpool and Macarthur Cancer Therapy Centres after cancer treatment completion. BC Nurses aided registration and instructed on HM use/functionalities. Participants completed an on-line baseline Profile Questionnaire (PQ1), Usability Questionnaire (UQ1) via telephone at one month, then PQ2 and UQ2 at 4 months. PQ and UQ results were analysed qualitatively, as was face-to-face feedback from 7 patients.
PQ1 and UQ1 completion rates were 68% and 95% respectively; for PQ2-50% and UQ2-90%. HM usage declined from 32/50(64%) at 1 month to 16/46(30%) at 4 months. 44% at 1 month and 37% at 4 months found HM useful in their survivorship care, particularly peer forums, scheduling and email functions to access healthcare professionals. All active users at 4 months would recommend HM to other BCS. Barriers to HM use included lack of time (52%) and technical factors (20%). User feedback included preference for earlier introduction of HM at initial diagnosis, continued content updates and development of a HM phone application.
Pilot data in BCS supports Healthy Me’s potential to facilitate tailored on-line information, peer support and improved connectivity to healthcare teams. Ongoing feedback will assist with refinement of the system.This is a preliminary step to developing a robust personally controlled health management system for any given population of cancer survivors