Misperceptions of ovarian cancer risk in women at increased risk for hereditary ovarian cancer

This study assessed the sociodemographic, medical and psychological predictors of accuracy of perceived risk in women at increased genetic risk for ovarian cancer. Women participating in a large cohort study who were at increased risk of ovarian and fallopian tube cancer, had no personal history of cancer and had ≥1 ovary in situ at cohort enrolment, were eligible. Women completed self-administered questionnaires and attended an interview at enrolment. Of 2,868 women unaffected with cancer at cohort enrolment, 561 were eligible. 335 women (59.8 %) overestimated their ovarian cancer risk, while 215 women (38.4 %) accurately estimated their risk, and 10 (1.8 %) underestimated it. Women who did not know their mutation status were more likely to overestimate their risk (OR 1.74, 95 % CI 1.10, 2.77, p = 0.018), as were those with higher cancer-specific anxiety (OR 1.05, 95 % CI 1.02, 1.08, p < 0.001) and/or a mother who had been diagnosed with ovarian cancer (OR 1.98, 95 % CI 1.23, 3.18, p = 0.005). Amongst the group of women who did not know their mutation status, 63.3 % overestimated their risk and the mean perceived lifetime risk of developing ovarian cancer was 42.1 %, compared to a mean objective risk of 6.4 %. A large number of women at increased risk for ovarian cancer overestimate their risk. This is of concern especially in women who are at moderately increased risk only; for this sub-group of women, interventions are needed to reduce potentially unnecessary psychological distress and minimise engagement in unnecessary surgery or screening.     

Looking different, feeling different: women’s reactions to risk-reducing breast and ovarian surgery

Most studies of quality of life following risk-reducing bilateral salpingo-oophorectomy (RRSO) and mastectomy (RRM) for inherited breast and ovarian cancer susceptibility were conducted before counseling protocols were established and included women at varying times since surgery. This study aimed to overcome these deficiencies and to provide current data on outcomes for this growing group of women. Semi-structured interviews were used to explore the experiences of an Australian cohort of 40 high-risk women 3 years after they underwent RRM and/or RRSO. Data were analyzed using the method of constant comparison. 19/40 women underwent RRSO, 8/40 RRM and 13/40 both procedures. Two themes-looking different and feeling different-captured the psychosocial impact of surgery upon interviewees. All regarded RR surgery as a positive experience and were relieved at having their risks of cancer substantially reduced; however, reducing risk by removing these body parts is not without costs. In addition to relief interviewees also reported experiencing a range of negative emotions and a range of unexpected bodily sensations following surgery and reflected upon both positive and negative changes in their appearance. Women said they had been unprepared for the lack of sensation in reconstructed breasts and/or the severity of menopausal symptoms, which often had a negative impact upon sexuality. At-risk women regard RR surgery as a positive way to manage cancer risk. However, although women who currently undergo RR surgery are informed about its sequelae, few are entirely prepared for the reality of undergoing this procedure. We recommend that women who undergo these procedures should be provided with information supported by psychosocial input before and after RR surgery.     

Identifying research priorities and research needs among health and research professionals in psycho-oncology

Aim: To identify and prioritize the key research questions in psycho‐oncology in order to guide the development of large multicenter clinically relevant studies. Methods: All members of the Psycho‐Oncology Co‐operative Research Group (n = 295) were invited to participate in an online survey and 180 responded (response rate = 61%). Participants rated eight priority research areas identified from a previous focus group study on a five‐point scale, and ranked their top four priority areas. Within the four ranked research areas, participants selected the three most important specific research questions. Results: The highest rated research priority areas were distress identification (23.3%), survivorship (22.7%), and distress management (15.3%), followed by issues relating to health services (9.7%) and carers (8.0%). Interventions were commonly nominated among the most important research questions within each priority area. The single most important research question identified by 44% of the sample was to “Determine the most acceptable, reliable and valid screening tool to be administered routinely at diagnosis and at other key transition points to identify distress and psychosocial needs”. Conclusion: This is the first Australian study to explore research priorities in psycho‐oncology, and the first international study to explore these issues in depth. To ensure that the research effort is strategic, clinically relevant and cost‐effective, clear priorities need to be established. The results of this survey will enable limited resources to focus on key research questions of direct clinical benefit.     

Physical activity in women with ovarian cancer and its association with decreased distress and improved quality of life

Objectives: To document levels of and changes in physical activity before and after ovarian cancer diagnosis and explore associations with psychosocial outcomes. Methods: Of 1207 eligible Australian Ovarian Cancer Study (AOCS) participants, 798 participated in an additional prospective Quality of Life (QoL) Study which measured anxiety, depression and QoL at 3–6 monthly intervals for 2 years beginning 3–48 months after diagnosis. AOCS asked about physical activity before diagnosis and 530 women also completed a one‐off lifestyle questionnaire 7–64 months after diagnosis which assessed activity during their first and, if relevant, second‐to‐third and fourth‐to‐sixth years following diagnosis. Analysis of variance was used to relate physical activity to psychosocial outcomes. Results: Almost 40% of women decreased their physical activity in the first year after diagnosis. Approximately 25% still had lower levels after 2–3 and 4+years. Recent physical activity level was inversely associated with depression and positively associated with QoL (P<0.05). Also, women who maintained or increased their physical activity after diagnosis had better mean depression and QoL scores than women who decreased physical activity or remained inactive (P<0.05). Among women who received chemotherapy shortly prior to completing the lifestyle questionnaire, high versus low or medium physical activity was associated with significantly lower mean depression scores during both periods of treatment and non‐treatment (P<0.05). Conclusions: Many women did not regain their pre‐morbid physical activity levels several years after ovarian cancer diagnosis. Low physical activity may simply be a consequence of poor well‐being but, alternatively, physical activity may improve psychosocial health of this group. Copyright © 2010 John Wiley & Sons, Ltd.     

Cancer consultation preparation package: changing patients but not physicians is not enough.

PURPOSE: This study evaluated a cancer consultation preparation package (CCPP) designed to facilitate patient involvement in the oncology consultation. PATIENTS AND METHODS: A total of 164 cancer patients (67% response rate) were randomly assigned to receive the CCPP or a control booklet at least 48 hours before their first oncology appointment. The CCPP included a question prompt sheet, booklets on clinical decision making and patient rights, and an introduction to the clinic. The control booklet contained only the introduction to the clinic. Physicians were blinded to which intervention patients received. Patients completed questionnaires immediately after the consultation and 1 month later. Consultations were audiotaped, transcribed verbatim, and coded. RESULTS: All but one patient read the information. Before the consultation, intervention patients were significantly more anxious than were controls (mean, 42 v 38; P = .04); however anxiety was equivalent at follow-up. The CCPP was reported as being significantly more useful to family members than the control booklet (P = .004). Patients receiving the intervention asked significantly more questions (11 v seven questions; P = .005), tended to interrupt the physician more (1.01 v 0.71 interruptions; P = .08), and challenged information significantly more often (twice v once; P = .05). Patients receiving the CCPP were less likely to achieve their preferred decision making style (22%) than were controls (35%; P = .06). CONCLUSION: This CCPP influences patients' consultation behavior and does not increase anxiety in the long-term. However, this intervention, without physician endorsement, reduced the percentage of patients whose preferred involvement in decision making was achieved.     

Evaluating the utility of a patient decision aid for potential participants of a prostate cancer trial (RAVES-TROG 08.03)

Randomised controlled trials (RCTs) can be hampered by poor patient accrual and retention. Decision aids (DAs) containing simple, evidence-based information, may assist patients with decision-making regarding trial participation. The current DA was of use for 95% of participants. Further evaluation of the DA in a RCT is currently underway.     

Skin cancer screening behaviours among individuals with a strong family history of malignant melanoma

Background:

This study examined the prevalence and correlates of skin cancer screening behaviours among individuals at high risk of developing melanoma due to strong family history.

Methods:

A total of 120 individuals with a known family-specific CDKN2A mutation (72% response rate) completed a self-report questionnaire assessing annual frequency of skin self-examination (SSE), clinical skin examination (CSE) and a variety of potential demographic, clinical and psychosocial correlates.

Results:

In the past 12 months, 50% of participants reported engaging in SSE at least four times, and 43% of participants had undergone at least one CSE. Engagement in SSE was associated with doctor recommendation (β=1.77, P=0.001), confidence in one''s ability to perform SSE (β=1.44, P<0.0001), positive beliefs about melanoma treatment (β=0.77, P=0.002) and intention to perform SSE in the future (β=1.69, P<0.0001). These variables accounted for 59% of the variance in SSE behaviour. Further, information-seeking style moderated the relationship between anxiety and SSE (β=1.02, P=0.004). Annual uptake of CSE was associated with doctor recommendation (β=2.21, P<0.0001) and intention to undergo CSE in the future (β=1.19, P=0.001).

Conclusion:

In comparison with clinical guidelines, it appears that individuals at high risk of developing melanoma engage in suboptimal levels of skin surveillance. Improved doctor–patient communication, as well as psycho-education and behavioural support, may be viable means of improving early skin cancer detection behaviours in this high-risk population.