Faculty Publications

Decrements in cognitive function are common in cancer patients and other clinical populations. As direct neuropsychological testing is often not feasible or affordable, there is potential utility in screening for deficits that may warrant a more comprehensive neuropsychological assessment. Furthermore, some evidence suggests that perceived cognitive function (PCF) is independently associated with structural and functional changes on neuroimagery, and may precede more overt deficits. To appropriately measure PCF, one must understand its components and the underlying dimensional structure. The purpose of this study was to examine the dimensionality of PCF in people with cancer. The sample included 393 cancer patients from four clinical trials who completed a questionnaire consisting of the prioritized areas of concerns identified by patients and clinicians: self-reported mental acuity, concentration, memory, verbal fluency, and functional interference. Each area contained both negatively worded (i.e., deficit) and positively worded (i.e., capability) items. Data were analyzed by using Cronbach's alpha, item-total correlations, one-factor confirmatory factor analysis, and a bi-factor analysis model. Results indicated that perceived cognitive problem items are distinct from cognitive capability items, supporting a two-factor structure of PCF. Scoring of PCF based on these two factors should lead to improved assessment of PCF for people with cancer.

The Facing Our Risk of Cancer Empowered (FORCE) website is devoted to women at risk for hereditary breast and ovarian cancers (HBOC). To understand the unique health concerns and emotional support needs of these women, we examined threads on the FORCE archived message boards with relevance to the broader HBOC community. We report on a thread discussing the controversial decision to use hormone replacement therapy (HRT) following prophylactic oophorectomy (PO). We used a qualitative research inductive process involving close reading, coding and identification of recurrent patterns, relationships and processes in the data. Twenty-nine women posted 177 messages over 7 months. Two main groups of women posted: (1) Women who were BRCA+, had completed PO, and were debating or adjusting their HRT options in terms of optimizing both quality and quantity of life. (2) Women who were BRCA+, were contemplating PO, but wanted to better understand the potential physical and psychological consequences of surgical menopause before deciding. Frustrated by physicians' lack of knowledge and contradictory media articles about the long-term consequences of HRT in BRCA+ women, they sought resources, emotional support and specific experiential knowledge from each other and generated a unique sense of community and a high level of trust.

The Facing Our Risk of Cancer Empowered (FORCE) website is devoted to women at risk for hereditary breast and ovarian cancers. One of the most frequently discussed topics on the archived messaged board has been prophylactic mastectomy (PM) for women with a BRCA1/2 mutation. We reviewed the messages, over a 4 year period, of 21 high risk women and their "conversational" partners who originally posted on a thread about genetic testing, genetic counseling and family history. We used a qualitative research inductive process involving close reading, coding and identification of recurrent patterns, relationships and processes in the data. The women sought emotional support, specific experiential knowledge and information from each other. They frequently found revealing their post PM status problematic because of possible negative reactions and adopted self-protective strategies of evasion and concealment outside of their web-based community. The FORCE message board was considered to be a safe place in which the women could be truthful about their choices and feelings. Results are discussed in terms of Goffman's concepts "stigma" and "disclosure" and Charmaz's concepts "interruptions," "intrusions" and a "dreaded future."