title: What quality-of-life issues do women with ductal carcinoma in situ (DCIS) consider important when making treatment decisions?
abstract: OBJECTIVE
  To explore quality-of-life (QOL) issues considered important when deciding on treatment for ductal carcinoma in situ (DCIS).
  
  
  METHODS
  Breast Cancer Network of Australia members diagnosed with DCIS in the past 5 years (self-identified) participated in an online survey (Sep-Nov 2015). From a list of 74 QOL issues, participants selected all issues they experienced during DCIS diagnosis, treatment or recovery, then the issues they felt important to making a DCIS treatment decision, and completed the Health Literacy Questionnaire (HLQ). Associations between QOL issues and self-reported treatment received were assessed with χ2tests.
  
  
  RESULTS
  The primary analysis included 38 participants treated with breast-conserving surgery (n = 15), mastectomy (n = 23), and/or radiotherapy (n = 14). Fatigue-related symptoms (82%) and "fear of progression" (50%) were the most frequently-experienced issues. When deciding on DCIS treatment, the most important consideration was "fear of progression" (50%). A higher proportion of mastectomy (compared to non-mastectomy) patients considered "difficultly looking at yourself naked" (p = 0.03). Radiotherapy (compared to non-radiotherapy) patients were more likely to consider "feeling unwell" important (p = 0.006). Results were similar in a sensitivity analysis involving all 101 respondents (i.e., including 63 respondents who reported receiving chemotherapy, endocrine therapy, and/or Herceptin, suggesting that they may have been treated for invasive breast cancer). Health literacy was high across all nine HLQ scales.
  
  
  CONCLUSIONS
  Fear of progression is a key consideration in DCIS treatment decision making for women with high health literacy. QOL treatment considerations differed by treatments received. Women diagnosed with DCIS may benefit from evidence about QOL to inform treatment decision making.
authors.affiliation: Central Clinical School, Sydney Medical School, University of Sydney, Camperdown, NSW, Australia. Rebecca.mercieca@sydney.edu.au.|Quality of Life Office, Psycho-oncology Co-operative Research Group, School of Psychology, University of Sydney, Level 6 North, Lifehouse (C39Z), Sydney, NSW, 2006, Australia. Rebecca.mercieca@sydney.edu.au.
authors.forename: Rebecca
authors.identifier: http://orcid.org/0000-0003-3708-9099
authors.initials: R
authors.lastname: Mercieca-Bebber
authors.affiliation: Central Clinical School, Sydney Medical School, University of Sydney, Camperdown, NSW, Australia.|Quality of Life Office, Psycho-oncology Co-operative Research Group, School of Psychology, University of Sydney, Level 6 North, Lifehouse (C39Z), Sydney, NSW, 2006, Australia.
authors.forename: Madeleine T
authors.initials: MT
authors.lastname: King
authors.affiliation: Liverpool Cancer Therapy Centre, Liverpool Hospital, Liverpool, NSW, Australia.|South Western Sydney Clinical School, University of New South Wales, Sydney, NSW, Australia.
authors.forename: Miriam M
authors.initials: MM
authors.lastname: Boxer
authors.affiliation: Northern Clinical School, Sydney Medical School, University of Sydney, Sydney, NSW, Australia.|Breast and Surgical Oncology at the Poche Centre, North Sydney, NSW, Australia.|Mater Hospital Sydney, North Sydney, NSW, Australia.|Royal North Shore Hospital, North Sydney, NSW, Australia.
authors.forename: Andrew
authors.initials: A
authors.lastname: Spillane
authors.affiliation: Breast Cancer Surgery Patient Reported and Clinical Outcomes Research Group, School of Clinical Sciences, Southmead Hospital, University of Bristol, Bristol, UK.
authors.forename: Zoë E
authors.initials: ZE
authors.lastname: Winters
authors.affiliation: Quality of Life Office, Psycho-oncology Co-operative Research Group, School of Psychology, University of Sydney, Level 6 North, Lifehouse (C39Z), Sydney, NSW, 2006, Australia.|Centre for Medical Psychology and Evidence-Based Decision-Making (CeMPED), University of Sydney, Sydney, NSW, Australia.
authors.forename: Phyllis N
authors.initials: PN
authors.lastname: Butow
authors.affiliation: Breast Cancer Network Australia, Camberwell, VIC, Australia.
authors.forename: Joan
authors.initials: J
authors.lastname: McPherson
authors.affiliation: Quality of Life Office, Psycho-oncology Co-operative Research Group, School of Psychology, University of Sydney, Level 6 North, Lifehouse (C39Z), Sydney, NSW, 2006, Australia.
authors.forename: Claudia
authors.initials: C
authors.lastname: Rutherford
mesh_terms: D000074322:Antineoplastic Agents, Immunological / Q000627:therapeutic use; D001315:Australia; D001828:Body Image / Q000523:psychology; D001943:Breast Neoplasms / Q000523:psychology* / Q000628:therapy; D002285:Carcinoma, Intraductal, Noninfiltrating / Q000523:psychology* / Q000628:therapy; D003131:Combined Modality Therapy / Q000009:adverse effects; D003657:Decision Making; D018450:Disease Progression; D004954:Esthetics / Q000523:psychology; D005239:Fear; D005260:Female; D057220:Health Literacy / Q000706:statistics & numerical data; D006801:Humans; D008408:Mastectomy / Q000009:adverse effects* / Q000523:psychology; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D011878:Radiotherapy / Q000009:adverse effects* / Q000523:psychology; D057566:Self Report; D011795:Surveys and Questionnaires; D000068878:Trastuzumab / Q000627:therapeutic use
chemical_list: D000074322:Antineoplastic Agents, Immunological; D000068878:Trastuzumab
keywords: Decision making; Ductal carcinoma in situ (DCIS); Patient-reported outcomes; Quality of life