Poster Presentation Joint 2016 COSA and ANZBCTG Annual Scientific Meeting

What women with metastatic breast cancer want in an internet-intervention for cancer-related distress: A qualitative exploration. (#285)

Lisa Beatty 1 , Emma Kemp 1 , Phyllis Butow 2 , Afaf Girgis 3 , Penny Schofield 4 , Jane Turner 5 , Nick Hulbert-Williams 6 , Janelle Levesque 3 , Danielle Spence 7 , Sina Vatandoust 8 , Ganessan Kichenadasse 8 , Amitesh Roy 8 , Shawgi Sukumaran 8 , Chris Karapetis 8 , Michael Fitzgerald 8 , Caroline Richards 8 , Bogda Koczwara 8
  1. College of Medicine and Public Health, Flinders Health and Medical Research Institute, Flinders University, Adelaide, South Australia, Australia
  2. School of Psychology, University of Sydney, Sydney, New South Wales, Australia
  3. Ingham Institute for Applied Medical Research, University of New South Wales, Liverpool, New South Wales, Australia
  4. Department of Psychological Sciences, Swinburne University, Hawthorn, Victoria, Australia
  5. School of Medicine, University of Queensland, Herston, Queensland, Australia
  6. Department of Psychology, University of Chester, Chester, United Kingdom
  7. Breast Canceer Network Australia, Melbourne, Victoria, Australia
  8. Medical Oncology, Flinders Centre for Innovation in Cancer, Flinders Medical Centre, Adelaide, South Australia, Australia

Aims: Metastatic breast cancer (MBC) is associated with significant distress; however, accessible psychological interventions for this population are lacking. This study summarises a two-phase qualitative exploration of (a) information and support women with MBC seek currently, or would like to obtain, via internet; and (b) potential of a tailored internet-intervention to meet these needs. 

Methods: Telephone interviews were conducted to address each study aim: interview 1 obtained feedback on current information and support needs; interview 2 evaluated our internet-intervention, Finding My Way (FMW), designed to provide information and support for patients treated with curative intent, for its relevance to women with MBC, including recommended content-changes and additions.  Results were analysed qualitatively using thematic analysis.

Results: To date, 11 women have completed interview 1, and six interview 2.  Aim(a): Women had varying levels of satisfaction with available information/support, and identified important information to receive via internet: medical information (e.g. diagnosis, terminology, coping with treatment side-effects) (64%), sharing experiences with other women with MBC (55%), coping with practical/system challenges (e.g. accessing superannuation) (45%), general and psychological well-being (36%), communicating effectively with medical professionals (27%), appropriate diet and exercise (27%), and support for partners and family (27%). Most women had internet access (82%) and expressed minimal concerns about an internet program including legitimacy (45%) and privacy/security (18%).  Aim(b): Women’s feedback on FMW was positive overall. Recommended changes included information on coping with ongoing treatment and mortality (83%), more MBC-specific information (i.e. living well with MBC) (66%), more information on support for partners (66%), shorter modules (50%), and links to resources (33%).   Updated results will be provided at the time of the presentation.

Conclusions: Women with MBC report varying levels of use of, and satisfaction with, existing sources of information and support, and interest in an internet program with specific content included.  

Acknowledgements: This research was supported by Breast Cancer Network Australia’s (BCNA) Review and Survey Group. We acknowledge the women involved in Review and Survey Group who participated in this project.