Online Resource 1: Development of the Cspro

Identifying the unmet needs of breast cancer patients post primary treatment: The Cancer Survivor Profile (CSPro)

Online Resource 1: Development of the CSPro

Briana L. Todd, MS1

Michael Feuerstein, PhD, MPH1

Amanda Gehrke, BS1

Jennifer Hydeman, PhD2

Lynda Beaupin, MD2

1Departments of Medical and Clinical Psychology and Preventive Medicine and Biometrics, Uniformed Services University of the Health Sciences, Bethesda, MD, US

2 Roswell Park Cancer Institute, Buffalo, New York, US.

The opinions and assertions contained herein are the private views of the authors and are not to be construed as being official or as reflecting the views of the Uniformed Services University of the Health Sciences or the Department of Defense.

Address correspondence to: Michael Feuerstein, PhD, M.P.H., Department of Medical and Clinical Psychology, Uniformed Services University of the Health Sciences, 4301 Jones Bridge Road, Bethesda, MD 20814; E-mail .

Overview

While there are several patient-reported measures available for the assessment of problems areas experienced by some breast cancer survivors for years following primary treatment, these measures were often tested on breast cancer patients during drug trials, a period of time that differs from the experiences following active treatment for cancer. Combining these measures to generate a comprehensive picture of the patterns of commonly experienced problem areas often leads to a timely and burdensome experience for survivor, provider, and case manager or cancer navigator. Recent recommendations for follow-up with cancer survivors emphasize the importance of considering medical long-term and late effects of cancer and its treatment exposures, and also non-medical effects that can occur (e.g., mood changes, changes in function, problems with various health behaviors, and economic strain that can occur as a consequence of the costs involved in diagnosis, treatment, and long-term follow-up). There is also much research on the importance of patient skills to optimize quality care, particularly for those with chronic health problems. As such, it is often important for both patient and provider to obtain some understanding of the level of those skills often necessary for obtaining high quality of care. These investigators set off to develop a brief, reliable, and valid measure, the Cancer Survivor Profile (CSPro), which provides a “picture” for provider and breast cancer survivor of the most common and concerning problems experienced by patients following primary treatment for breast cancer. While the goals for this measure relate to the detection of problem areas and affect triage and management of these problems as observed, the other goals include its use to help empower patients to take on some of their own health care surveillance and management and its use as a surveillance tool that can accompany medical (both tumor and general health) surveillance over time.

The supplement includes additional materials used to develop the CSPro including: 1) overview of how PROMIS items were selected, 2) relevant constructs in the PROMIS databank and indication of specific PROMIS areas used to create the CSPro, 3) non-PROMIS candidate measures, 4) psychometric properties of candidate non-PROMS items, 5) original sources used in CSPro, and 6) summary tables of the qualitative literature on breast cancer survivors’ descriptions of problems areas to finalize selection of items in CSPro.

Figure 1. Process to select items from PROMIS

Table 1. CSPro constructs included in PROMIS database

*Items covered in PROMIS

1

Table 2 Psychometric properties of Non-PROMIS candidate measures for inclusion in CSPro

BCS = Breast cancer survivors

*In expected direction

Table 3 Sources for Items in Cancer Survivor Profile

*PROMIS items modified and used with the permission of the PROMIS Health Organization and the PROMIS Cooperative Group. Additional information on PROMIS measures can be found at [30]. The non-PROMIS items are included in CSPro with permission of original authors.

Table 4a. Review of qualitative studies in breast cancer: Anxiety themes

Note. Did not select sleep problems because of diagnostic overlap with sleep (another construct on the CSPro). Selected anxiety attacks due to the diagnostic criteria for anxiety disorders and the lack of diagnostic overlap with other constructs on the CSPro [50]. Dash indicates theme not represented in measure.

Table 4b. Review of qualitative studies in breast cancer: Cognitive function themes

Note. Selected processing speed and fogginess over short-term memory (three-way tie) because already have question about memory. Dash indicates theme not represented in measure.

Table 4c. Review of qualitative studies in breast cancer: Fatigue themes

Note. Selected Unpredictability over Overwhelming (tied) because more likely to help with the management of unpredictability nature of fatigue. Dash indicates theme not represented in measure.

Table 4d. Review of qualitative studies in breast cancer: Pain themes

Note. Dash indicates theme not represented in measure.

Table 4e. Review of qualitative studies in breast cancer: Sexual function themes

Note. Selected constructs that were general due to CSPro’s intention (i.e., general screening measure). Did not look at frequency or vaginal dryness because of specificity of questions. Dash indicates theme not represented in measure.