Illness intrusiveness among survivors of autologous blood and marrow transplantation

Abstract

Genetic testing enables women at risk for hereditary breast and/or ovarian cancer to find out whether they have inherited the gene mutation, and if so, to opt for undergoing frequent surveillance and/or prophylactic surgery. However, the option to know about one's genetic status is not always seen as a benefit by women at risk. Motives for declining genetic testing were explored in 13 women at 25% or 50% risk to be a BRCA1/BRCA2 mutation carrier, who participated in a surveillance program for breast/ovarian cancer (the non‐tested group). We hypothesized that high anxiety might be an important motive to decline testing. In addition, we investigated whether the non‐tested group differed from a reference group of women who did undergo the test (tested group; n = 85) with regard to biographical factors, experience with cancer in relatives, and personality traits. Most non‐tested women (10/13) were satisfied with participating in the surveillance program. Four reported to feel emotionally unprepared to cope with the consequences of testing. Compared with the tested group, the non‐tested women had similar mean distress levels (which were not high), but a higher education level, they were more often childless, showed more reluctance towards prophylactic surgery, were younger when first confronted with a relative affected with breast/ovarian cancer, and were longer aware of the genetic nature of the disease. This study showed that women were more likely to have thoroughly reflected on their decision not to undergo genetic testing, than to deny the whole issue due to high anxiety. Being confronted at a relatively young age with breast/ovarian cancer in a relative, and being aware of the genetic risk for a many years, may have resulted in the risk for cancer becoming an integrated part of their lives. However, generalization of these results to women who neither underwent the test nor participated in a surveillance program should be considered with caution.© 2003 Wiley‐Liss, Inc.

High-dose chemotherapy and autologous stem cell transplantation for primary refractory or relapsed Hodgkin lymphoma: long-term outcome in the first 100 patients treated in Vancouver

“…This is not unexpected in light of the physical and emotional trauma associated with developing cancer, receiving chemoradiotherapy, and coping with the fear of relapse. 38,39 Preservation of fertility is an important issue for young patients with HL, and we were able to confirm that young women treated with non-TBI-conditioning regimens, particularly those undergoing HD-ASCT prior to age 30 years, may still be able to conceive following HD-ASCT. 24 In conclusion, it is now clear that, with HL, HD-ASCT leads to a durable remission in the majority of patients and that most survivors have an excellent performance status.…”

Pre-transplantation physical and mental functioning is strongly associated with self-reported recovery from stem cell transplantation

“…2 Psychological difficulties are also often present. Depression 3 and anxiety 4 are common, including a 5% incidence of post-traumatic stress disorder. 5 In one study, 22% of patients reported sexual dissatisfaction.…”

Validation study of the Chinese version of the Illness Intrusiveness Ratings Scale

“…Thus, the main contribution of the IIRS is reflected in its ability to quantify the negative influences incurred by various chronic disease experiences with easily interpretable numerical scores. The validity and reliability of this scale have been widely documented in various populations with chronic diseases, including cancer, hypertension, sleep disorders, and anxiety disorders [9][10][11][12][13][14][15][16]. A stable threefactor structure has been documented in studies conducted in Western countries [13,16].…”