Oral Presentation Cancer Survivorship 2017

Internet support needs and preferences of women living with advanced breast cancer. (#26)

Lisa Beatty 1 2 , Emma Kemp 1 2 , Phyllis Butow 3 , Afaf Girgis 4 , Penelope Schofield 5 , Jane Turner 6 , Nick Hulbert-Williams 7 , Janelle Levesque 8 , Danielle Spence 9 , Sina Vatandoust 10 , Ganessan Kichenadasse 10 , Amitesh Roy 10 , Shawgi Sukumaran 10 , Chris Karapetis 10 , Michael Fitzgerald 10 , Caroline Richards 10 , Bogda Koczwara 1 2
  1. Flinders University of South Australia, Adelaide, Australia
  2. Flinders Centre for Innovation in Cancer, Adelaide, Australia
  3. University of Sydney, Sydney , NSW, Australia
  4. Ingham Institute for Applied Medical Research, University of New South Wales, Sydney , NSW, Australia
  5. Swinburne University , Melbourne, Vic, Australia
  6. University of Queensland, Brisbane, Qld, Australia
  7. University of Chester, Chester, United Kingdom
  8. Monash University , Melbourne, Vic, Australia
  9. Breast Cancer Network Australia, Melbourne, Vic, Australia
  10. Southern Adelaide Health Service, Bedford Park, SA, Australia

Aim

Metastatic breast cancer (MBC) is associated with significant distress but interventions for this population are lacking. This study summarises a mixed-methods study examining internet support needs and preferences of women with MBC including (a) internet use (b) information and support-seeking preferences and needs and (c) preferences for an internet-intervention to meet these needs. 

Methods

Women with MBC recruited via clinicians or Breast Cancer Network Australia participated in (1) an online survey examining internet use for seeking cancer-related information and/or support (N = 43), (2) a telephone interview on current information and support needs (N = 11) and/or (3) a telephone interview regarding adaptation of an existing intervention for early-stage cancer patients, for women with MBC (N = 6).  

Results

The majority of survey participants used the internet at least weekly to seek information/support (51%); while online support for treatment side effects (sought by 81%) was most commonly rated ‘reasonably’ or ‘very’ well covered, online support for fear of progression (sought by 65%) was most commonly rated inadequate (42%). The majority (81%) thought an online program for MBC information/support would be ‘quite’ or ‘very’ helpful. Preferred content included fact sheets (74%), online forums (65%) and survivor videos (63%). Interview participants indicated the following information as important to receive online: medical information (64%), sharing experiences of MBC (55%), coping with practical/system challenges (45%), well-being (36%), communicating with medical professionals (27%), diet and exercise (27%), and support for partners/family (27%). Participants who evaluated the existing program for EBC, recommended adding information on coping with ongoing treatment and mortality (83%), MBC-specific information (66%), more information on support for partners (66%), shorter modules (50%), and links to resources (33%).   Updated results will be provided.

Conclusions

This study indicates need and scope for an internet-intervention to provide information and support to women living with MBC.