Improving Surgical Decision-making in Young Women With Breast Cancer
Condition: Breast Cancer
MeSH terms: Breast Neoplasms
Study type: Observational

Summary: 
      The overall goal of this study is to qualitatively assess the surgical decision-making
      process from both the patient and physician perspective

        1. Conduct short in-person interviews with young women prior to surgery

        2. Conduct focus groups with breast cancer survivors about their surgical decision and
           experience

        3. Interview surgical oncologists, plastic surgeons, medical and radiation oncologists
           about their experiences and how they communicate with breast cancer patients about local
           therapy decisions

        4. To survey women about surgical decision-making prior to and after their consult in
           conjunction with pilot testing of a web-based decision aid to support high quality
           surgical decision-making in newly diagnosed young women with breast cancer.
    

Detailed description: 
      Breast cancer in young women: Breast cancer is the most common cancer diagnosed in women
      younger than age 40 in the United States, with approximately 14,000 new cases each year.
      Young women face unique psychosocial challenges, most notably fertility, sexuality, and image
      concerns and are at a life stage where education, career, and family are important
      priorities. Concern about these issues may contribute to the greater psychosocial distress
      seen in younger women at both diagnosis and in follow-up compared with older women.
      Importantly, these concerns may also influence treatment decisions including receipt of
      chemotherapy, adherence to endocrine therapy, and surgical decisions. Thus, attending to the
      unique issues of young women may enhance not only quality of care and quality of life (QOL)
      but also potentially disease outcomes.

      Surgical management of breast cancer: Standard loco-regional management of breast cancer
      entails partial mastectomy (i.e., breast conserving surgery) followed by radiation or
      mastectomy with or without radiation. The decision depends on a number of factors including
      extent of disease, family history, BRCA mutation status, and personal preference. In recent
      years, an increasing number of women have elected to undergo contralateral prophylactic
      mastectomy (CPM) in conjunction with surgery of the affected breast (usually choosing
      bilateral mastectomy), despite a lack of clear evidence for survival benefit from this
      procedure in the vast majority of women. In weighing the benefits and risks of CPM, one must
      consider the absolute risk reduction of a new primary breast cancer (usually relatively
      modest in the average risk survivor), the long and short-term risks of this additional
      surgery including potential complications (bilateral mastectomy is associated with a greater
      risk of surgical complications) and the impact on QOL. At the same time, one must consider
      the competing risk of systemic recurrence of a woman's initial breast cancer. Young women, in
      particular, have the greatest risk of systemic recurrence and death from their original
      cancer, lowering the likelihood of benefit of CPM in preventing a new primary breast cancer.
      However, while CPM rates have increased among all breast cancer patients, increased rates of
      CPM are particularly pronounced among the youngest women with breast cancer, with several
      studies identifying young age at diagnosis as one of the strongest determinants of
      CPM.Physicians and researchers have been observing and discussing this trend for a number of
      years and yet little has been done to intervene.

      The goal of the proposed research is to better understand and improve the surgical decision
      process in young women with breast cancer. Using qualitative research methods, we will
      comprehensively assess patient experiences - both patients who have had CPM and patients who
      did not - as well as physician perspectives regarding this decision. Based on these findings,
      the investigators will determine how to best improve the quality of the process, e.g., by
      correcting misperceptions, setting realistic expectations regarding the impact of surgery
      (including reconstruction) on QOL, improving communication with health care providers, and
      better management of anxiety surrounding diagnosis. This qualitative research is designed to
      build on prior quantitative analyses, by gaining an in depth perspective through focus groups
      and interviews, about certain issues identified as impacting the surgical decision process,
      including anxiety, fear of recurrence, and patient-physician communication.

      Collectively, results from the qualitative assessment will inform a future phase of this
      research involving the design and subsequent development of a decision aid to help women make
      informed decisions about their breast cancer surgery.

      The goal of this second phase of the research is to survey women about surgical
      decision-making prior to and after their consult in conjunction with pilot testing of a
      web-based decision aid to support high quality surgical decision-making in newly diagnosed
      young women with breast cancer.
    

Intervention name(s): qualitative data collection; survey; decision aid
Intervention type(s): Other; Other; Other
Intervention description(s): qualitative data collection; survey pre and post-surgical consult; web-based decision aid post-surgical consult
Observational model: Other
Time perspective: Other
Sampling method: Non-Probability Sample
Study population: 
        Young Women with a history of breast cancer and providers who care for them.
      
Keywords: breast cancer; decision making; surgery; qualitative