Cancer survivors face increasing challenges to receiving quality care including an increasingly complex healthcare system, movement of cancer from an acute to a chronic disease, and overwhelming side effects and symptoms. Promoting patients'ability to self-advocate, or "stand up for one's self", is endorsed by healthcare providers and advocacy organizations as a possible solution for meeting these increasing demands, although little research has informed this practice. In other patient populations (e.g. HIV/AIDS and disabilities), self-advocacy has been thoroughly researched and been found to be modifiable factor capable of improving patient outcomes including reduced symptom distress and less healthcare utilization. Such research has not been adequately replicated with cancer survivors, especially female survivors. Symptom management is an ideal context in which to measure self-advocacy because it is an aspect of cancer survivorship that requires patient's active participation to select and implement strategies throughout the multiple stages of survivorship. Moreover, gender differences within symptom management place unique demands on female survivors since patient- and provider-level barriers exist to detecting and treating symptoms among females. A lack of a theoretically grounded, well-validated, patient-centered instrument to measure self-advocacy in female cancer survivors is a critical barrier to advancing the science of the role self-advocacy plays in improving patient outcomes. A new instrument of self-advocacy specific to female cancer survivors will provide the necessary re-conceptualization and specificity to identify and measure this concept. The purpose of this instrumentation study is to evaluate the psychometric properties of the Self-Advocacy in Cancer Survivorship (SACS) Scale among female cancer survivors.
The specific aims are to evaluate: 1) internal consistency and test-retest reliability and 2) construct validity. Subjects will be recruited from 3 cancer clinics at the University of Pittsburgh Medical Center and 4 national and regional cancer and advocacy organizations in Pittsburgh. Women will be at least 18 years old and have a history of an adult cancer diagnosis.
In Aim 1, 40 participants will be recruited at clinics and organizations to complete questionnaires, cognitive interviews, and a 2-week follow-up survey.
In Aim 2, 300 participants will be recruited from cancer registries and cancer and advocacy organizations to complete either web-based or a mailed questionnaires including the SACS Scale, key predictors and outcomes of self-advocacy, and measures to evaluate concurrent and criterion validity. The proposed study will be the first to create an valid and reliable measure of self-advocacy specific to female cancer survivors. Once validated, the SACS Scale will guide the applicant's future program of research in identifying women at-risk for low self-advocacy, guiding interventions to improve self-advocacy among these survivors, and addressing the National Institute of Nursing Research's goal of improving symptom management.
Self-advocacy is a critical, yet under-studied concept within cancer survivorship, particularly among female cancer survivors who are known to experience unique challenges to attaining quality cancer care and adequate symptom management. To date, no scale of self-advocacy specific to female cancer survivors exists. This instrumentation study aims to test the reliability and validity of the Self-Advocacy in Cancer Survivorship Scale among a diverse sample of female survivors. Findings from this study will guide future research to identify female cancer survivors at-risk for low self-advocacy and develop interventions to increase self- advocacy that can lead to reduced symptom distress, improved quality of life, and reduced healthcare costs.