Self-advocacy Behaviors and Needs in Women with Advanced Cancer: Assessment and Differences by Patient Characteristics

Abstract

Background: Self-advocacy skills allow individuals with cancer to overcome challenges related to their health, care, and well-being. Understanding the self-advocacy behaviors and needs of individuals with cancer is critical to addressing the lack of evidence-based self-advocacy interventions. The aims of this study are to describe (1) self-advocacy behaviors and needs of women with advanced cancer and (2) associations between self-advocacy and sociodemographic, cancer, and patient-reported outcomes.

Methods: We analyzed cross-sectional data from a clinical trial among women within 3 months of a metastatic breast or stage III or IV gynecologic cancer diagnosis. Descriptive and correlational statistics and tests of group difference were calculated for measures of self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale), sociodemographic characteristics, quality of life (FACT-G), symptom burden (M.D. Anderson Symptom Inventory), and mood (Hospital Anxiety and Depression Scale).

Results: Participants (N = 78) reported self-advocacy behaviors including making decisions based on their priorities, asking questions to their healthcare providers, and comparing their experiences to others' experiences. Self-advocacy needs focused on finding health information and talking with healthcare providers. Self-advocacy behaviors and needs did not differ by participants' sociodemographic characteristics or mood. Higher self-advocacy behaviors were associated with higher quality of life (p ≤ .01) and lower symptom severity (p < .05) with a trend for cancer recurrence (p = .05).

Conclusions: Women with advanced cancer report engaging in self-advocacy behaviors and these are associated with higher quality of life and lower symptom burden. Future research should determine if self-advocacy behaviors and needs change over time and how patient characteristics impact self-advocacy behaviors and needs.

Keywords: Patient-centered care; Quality of life; Self-advocacy; Self-management.