My mind is made up: Cancer concern and women’s preferences for contralateral prophylactic mastectomy

The fear of cancer recurrence is cited as a motivator of women's preferences between routine monitoring and contralateral prophylactic mastectomy (CPM) as methods of managing ongoing breast cancer risk. We conducted a discrete choice experiment among a general community sample of women who completed 12 hypothetical choices between routine monitoring and CPM described by aspects of treatment efficacy, safety, cost and involvement in decision‐making. Respondents also completed a modified cancer worry question to assess cancer concern. Approximately 57.5% of 464 women always chose one option, typically routine monitoring. The majority (71.5%) reported being concerned about cancer recurrence when completing choice tasks. Latent class analysis identified three groups: preferred routine monitoring; preferred CPM; and “traders” (willing to swap between options). Among traders, women were less likely to choose an option associated with higher risk of recurrence. Women were more likely to choose options associated with less‐intrusive monitoring methods and where they were involved in decision‐making. Women concerned about cancer recurrence were more likely to choose CPM over monitoring. This study shows that women's preferences about how to manage breast cancer recurrence risk reflect the importance of the associated health effects, experience of care and attitudes to cancer recurrence.     

Predictors of affect following treatment decision-making for prostate cancer: conversations, cognitive processing, and coping

Objective: Research suggests that cancer patients who are more involved in treatment decision‐making (TDM) report better quality of life following treatment. This study examines the association and possible mechanisms between prostate cancer patient's discussions about TDM and affect following treatment. We predicted that the length of time patients spent discussing treatment options with social networks and physicians prior to treatment would predict emotional adjustment after treatment. We further predicted that cognitive processing, coping, and patient understanding of treatment options would mediate this association. Methods: Fifty‐seven patients completed questionnaires prior to treatment and at 1 and 6 months following treatment completion. Results: Findings from the present study suggest that discussing treatment options with others, prior to beginning treatment for prostate cancer, significantly contributed to improvements in affect 1 and 6 months following treatment. Residualized regression analyses indicated that discussing treatment options with patient's social networks predicted a decrease in negative affect 1 and 6 months following treatment, while discussions with physicians predicted an increase in positive affect 1 month following treatment. Patients who spent more time discussing treatment options with family and friends also reported greater pre‐treatment social support and emotional expression. Mediation analyses indicated that these coping strategies facilitated cognitive processing (as measured by a decrease in intrusive thoughts) and that cognitive processing predicted improvement in affect. Conclusions: Greater time spent talking with family and friends about treatment options may provide opportunities for patients to cope with their cancer diagnosis and facilitate cognitive processing, which may improve patient distress over time. Copyright © 2008 John Wiley & Sons Ltd.     

Who makes the decision regarding the treatment of clinically localized prostate cancer–the patient or physician?

BACKGROUND:

The current study examined how patients' sociodemographic, cancer‐related, and subjective affective factors impacted their role in treatment decision‐making.

METHODS:

The patient sample (N = 788) was taken from a prospective follow‐up study of a population‐based cohort. Participants included 343 African American and 445 Caucasian‐American patients with clinically localized prostate cancer. Multinomial logistic regression was used to investigate relations between the explanatory variables and the nominal 3‐level decision‐making variable: patient‐only, patient‐physician shared, and physician‐only.

RESULTS:

Approximately 41% of patients reported patient‐only decision‐making, 45% reported shared decision‐making, and 13% reported physician‐only decision‐making. The odds of patient‐only over physician‐only decision‐making were greater for younger men (vs those aged ≥ 65 years) (odds ratio [OR], 1.68; 95% confidence interval [95% CI], 1.03‐2.74), and were less for men with high (vs low) cancer aggressiveness (OR,0.29; 95% CI, 0.15‐0.55). The odds of shared over physician‐only decision‐making were less for men with high (vs low) cancer aggressiveness (OR, 0.40; 95% CI, 0.22‐0.73). Greater odds of patient‐only and shared decision‐making also were found to be associated with greater concerns about the physical impact of treatment and having enough time for decision‐making and lower scores of receiving advice from others.

CONCLUSIONS:

The findings of the current study indicate that, to facilitate a more patient‐oriented decision‐making process regarding treatment in those with clinically localized prostate cancer, clinicians need to tailor their interventions according to patient age and cancer aggressiveness, help reduce patient concerns and misconceptions regarding the physical impact of treatments, allow sufficient time for patients to consider treatment options, and assist patients in balancing advice and information received from different sources. Cancer 2013. © 2012 American Cancer Society.     

Satisfaction with ovarian carcinoma risk-reduction strategies among women at high risk for breast and ovarian carcinoma

BACKGROUND:

Women who are at high risk for breast and ovarian cancer have 2 major management options to reduce their risk of ovarian cancer: periodic screening (PS) or risk‐reducing salpingo‐oophorectomy (RRSO). Little is known regarding patient satisfaction levels with risk‐reduction strategies. Thus, the authors sought to determine levels of patient satisfaction with PS versus RRSO and to identify factors that may influence satisfaction.

METHODS:

As part of a larger study, women who received testing for the breast cancer genes BRCA1 and BRCA2 were sent a follow‐up questionnaire packet to explore issues related to cancer risk reduction. The authors report on the results from a variety of validated instruments, including the Satisfaction With Decision (SWD) scale, focused on the choice between PS and RRSO.

RESULTS:

In total, 544 surveys were mailed, and 313 responses were received (58%). The overall satisfaction rate among respondents was high. The median SWD score was significantly higher in the RRSO group compared with the PS group (P < .001). BRCA mutation carriers had higher median SWD scores regardless of management type (P = .01). Low satisfaction scores were associated with high levels of uncertainty and the perception that the decision between PS and RRSO was difficult to make (P = .001). Satisfaction was unrelated to demographics, clinical factors, or concerns of cancer risk.

CONCLUSIONS:

In the current study, the majority of women who were at high risk for breast and ovarian cancer were satisfied with their choice of risk‐reduction strategy. Difficulty with decision making was associated with lower satisfaction levels. Improved education and support through the decision‐making process may enhance overall levels of satisfaction. Cancer 2011. © 2010 American Cancer Society.     

The role of patients’ families in treatment decision‐making among adult cancer patients in the Sultanate of Oman

There are limited numbers of studies available in Middle Eastern Arabic countries regarding participation of family ?members in cancer treatment decision‐making (TDM). The aim of this study was to evaluate the role of family members’ ?in TDM among ?adult Omani cancer ?patients. A cross‐sectional study was conducted in two main teaching hospitals. All adult Omani patients who were diagnosed with cancer and their nominated family members were invited to ?participate. A tool developed by Cancer Care Outcomes Research and ?Surveillance Consortium was used to identify the level of family involvement in TDM. A weighted kappa (k) was significant (p < .001) and showed almost full agreement between the patients’ experiences and their preferences ?(?k = .98) and between family members’ experiences and their preferences ?(?k = .96) ??of family involvement in TDM. Binary logistic regression showed significant family‐controlled TDM if the patient communicated? less with oncologists (OR = 9.89; 95% CI: 3.79–25.81); financial dependence of the patient on their families ?(OR = 6.21; 95% CI: 2.19–17.10?); and advanced stages of cancer at the time of diagnosis ?(OR = 3.10; 95% CI: 1.37–7.03). Oncologists in Oman should be aware of the strong family involvement in TDM to allow a successful cancer treatment.     

Facilitating reproductive choices: the impact of health services on the experiences of young women with breast cancer

Objective: Chemotherapy and hormone treatments carry significant implications on the fertility of young women with breast cancer. Increasingly, nulliparous women experience fertility dilemmas due to rising survival rates and pregnancy delay. This qualitative study investigated women's responses to being told that treatments affected their fertility and how their interactions with health services impacted on their experiences. Methods: Twenty‐four women under 40 years participated in three focus groups using a flexible interview structure. Data were analysed using content analysis and participants subsequently member checked the themes generated. Results: The priority for most women was survival, although women without children were more willing to take risks. Many women felt that pregnancy after breast cancer and methods of egg harvesting carried a significant risk to survival and fears appeared to be increased by conflicting advice from health professionals. Overall, the women felt the cancer, its treatment options and the health service itself had each robbed them of choice. Hence, with hindsight, many said they would have welcomed an open and honest discussion with a fertility expert to maximise their options. Conclusions: Young women with breast cancer face complex decisions regarding their fertility and treatment options. Survival remains the priority for the majority of women. Although there is a paucity of evidence concerning many fertility issues, it is essential that available options and any potential risks are discussed in a coherent, objective fashion. Early referral to specialist fertility services that provide clear, cohesive advice can aid informed decision making. Copyright © 2010 John Wiley & Sons, Ltd.     

Trajectories of psychological distress among Chinese women diagnosed with breast cancer

Background: The distinct trajectories of psychological distress over the first year of the diagnosis with breast cancer (BC) and its determinants have not been explored. Methods: 285 of 405 Chinese women receiving surgery for BC were assessed at 5‐day, 1‐month, 4‐month, and 8‐month post‐surgery on measures of psychological distress, optimism, treatment decision‐making (TDM) difficulties, satisfaction with treatment outcome, satisfaction with medical consultation, and physical symptom distress. Latent growth mixture modelling identified trajectories of psychological response to BC. Multinominal logistic regression compared TDM difficulties, satisfaction with treatment outcome, satisfaction with medical consultation, optimism, and physical symptom distress, by distress pattern adjusted for age, education, employment status, and stage of disease. Results: Four distinct trajectories of distress were identified, namely, resilience (66%), chronic distress (15%), recovered (12%), and delayed‐recovery (7%). TDM difficulties, optimism, satisfaction with consultation, and physical symptom distress predicted distress trajectories. Psychologically resilient women had less physical symptom distress at early post‐surgery compared with women with other distress patterns. Compared with the resilient group, women in the recovered or chronic distress groups experienced greater TDM difficulties, whereas women in the delayed‐recovery group reported greater dissatisfaction with the initial medical consultation. Women in the chronic distress group reported greater pessimistic outlook. Conclusion: Optimism and better early post‐operative treatment outcomes predicted resilience to distress. Pre‐operative interventions helping women to establish a realistic expectation of treatment outcome may minimize disappointment with treatment outcome and resultant distress, whereas post‐operative rehabilitation should focus on symptom management. Copyright © 2009 John Wiley & Sons, Ltd.     

Participation and satisfaction with surgical treatment decision-making in breast cancer among Chinese women

Purpose. To report Chinese women's preferred and perceived participation in breast cancer treatment decision making (TDM), describe influences on women's participation preference and participation congruence (PC) (correspondence between preferred and actual amount of participation in TDM), and explore subsequent satisfaction with TDM. Patients and methods. Of 172/211 eligible and available Chinese women recently undergoing breast cancer surgery at one of six Hong Kong government hospitals 154 (89.5%) were recruited. Within 12 days after surgery, women provided interview information on preferred and perceived TDM participation, satisfaction with TDM consultation, difficulties in TDM, and medical and demographic information. Results. Half (55%) reported a treatment choice: 33% wanted the choice to be their own, 59% wanted to share and 8% wanted to delegate the decision. Only age predicted participation preference with older women preferring a more passive role. Eighty percent of women participated as much as, 13% more than and 6% less than desired. Adjusted for age, women reporting PC had fewer difficulties in TDM ( = 0.21, p = 0.009) than women not reporting PC, while over-involved women had more doubts about their choice ( = –0.23, p = 0.005). PC was associated with being offered a treatment option (² = 15.59, p < 0.001) and surgeons expressing a surgical preference (² = 6.63, p = 0.036). Satisfaction was unrelated to PC. Conclusion. Most Chinese women want shared TDM and to know their surgeon's treatment preference. Over-involved women are at greater risk of difficulties and doubts in TDM and under-involved women perceive a lack of time and information to make their decision.     

Cancer patients' trust in their physician-a review

Objective: Patient's trust in their physician is crucial for desirable treatment outcomes such as satisfaction and adherence. In oncology, trust is possibly even more essential, due to the life‐threatening nature of cancer. A review was undertaken of the current knowledge of the conceptualization, assessment, correlates, and consequences of cancer patients' trust in their physician. Methods: The empirical literature published in peer‐reviewed journals between October 1988 and October 2008 was searched, employing all combinations and variations of the following keywords: trust, physician–patient relations, and cancer. Results: The search identified 45 relevant papers, only 11 of which drew attention to the conceptualization of trust, and 5 of which focused on trust as the primary subject of interest. Trust in physicians was strong overall. Patients' trust appeared to be enhanced by the physician's perceived technical competence, honesty, and patient‐centred behaviour. A trusting relationship between patient and physician resulted in facilitated communication and medical decision making, a decrease of patient fear, and better treatment adherence. Conclusions: A lack of focus on trust and the conceptualization thereof, strong methodological variations between studies and a possible publication bias lead us to conclude that cancer patients' trust in their physician deserves more systematic, theoretically based, research attention. Consequently, studies are needed aimed at gaining a thorough understanding of the nature and impact of cancer patients' trust in their physician, and how the interaction between physician and patient may contribute to such trust. Copyright © 2010 John Wiley & Sons, Ltd.     

Low-income women with early-stage breast cancer: physician and patient decision-making styles

BACKGROUND: Poor women have low rates of breast conservation therapy not explained by differences in insurance status or treatment preferences. The purpose of this study was to explore how low-income women make decisions about breast cancer treatment. METHODS: Twenty-five women diagnosed with early-stage breast cancer through the Nebraska Every Woman Matters program were interviewed about their experiences selecting treatment options. These interviews were transcribed and then analysed using established qualitative techniques. RESULTS: More than half of the women (n=16) described playing a passive role in decision making. Choice was determined by medical factors or not offered by their physicians. Intense emotional distress affected some women's ability to compare options. The women who did engage in a rational decision-making process (n=9) based their choices on concerns about body image and fear of recurrence. CONCLUSIONS: When presented with a choice, and when able to objectively weigh treatment options, low-income women base their treatment decisions on the same issues as those of higher income. Whether differences in income strata alter the doctor-patient power dynamic in favor of physician control over decision making, or whether low-income women are less prepared to engage in a rational deliberative process warrants further study.     

Development of decision‐support intervention for Black women with breast cancer

Background: Adjuvant therapy improves breast cancer survival but is underutilized by Black women. Few interventions have addressed this problem. This preliminary report describes the process we used to develop a decision‐support intervention for Black women eligible for adjuvant therapy. Aims were to use qualitative methods to describe factors that influence Black women's adjuvant therapy decisions, use these formative data to develop messages for a treatment decision‐support intervention, and pilot test the acceptability and utility of the intervention with community members and newly diagnosed women. Methods: Thirty‐four in‐depth interviews were conducted with breast cancer patients in active treatment, survivors and cancer providers to gather qualitative data. Participant ages ranged from 38 to 69 years. A cultural framework was used to analyze the data and to inform intervention messages. Most women relied on their providers for treatment recommendations. Several women reported problems communicating with providers and felt unprepared to ask questions and discuss adjuvant treatment options. Other factors related to treatment experiences were: spiritual coping, collectivism and sharing breast cancer experiences with other Black survivors. Results: Using these formative data, we developed an intervention that is survivor‐based and includes an in‐person session which incorporates sharing personal stories, communication skills training and decision support. Intervention materials were reviewed by community members, researchers/clinicians and patients newly diagnosed with breast cancer. Conclusion: Patients reported satisfaction with the intervention and felt better prepared to talk with providers. The intervention will be tested in a randomized trial to enhance decision support and increase use of indicated adjuvant treatment. Copyright © 2009 John Wiley & Sons Ltd.     

Decision‐making preferences and information needs among Greek breast cancer patients

Objectives: We aimed at assessing Greek breast cancer patients' preferences for participation in treatment decision making and their information needs. Methods: In a cross‐sectional study, 329 breast cancer patients were administered at the Control Preferences Scale, a card‐sort measurement designed to elicit preferences for participation in decision making. Information needs were assessed with Cassileth's Information Styles Questionnaire. Results: The majority of patients (71.1%) preferred to play a passive role in treatment decision making, with most of them wanting to delegate responsibility of the decision completely to their doctor (45.3%). A collaborative role was preferred by 24%, whereas only 4.6% chose an active role. Most women expressed a general desire for as much information as possible about their illness (62.6%), but a substantial proportion (37.4%) did not want detailed information; instead, they wished to avoid awareness of bad news. Women who desired less informational details and preferred a passive role requested less frequently a mammography (p<0.001) and/or Pap test (p<0.0005) prediagnostically. Conclusions: This study's findings showed that the proportion of patients who wanted to play a passive role in decision making is the highest reported compared to similar studies from other countries, indicating the impact of the dominating paternalistic model of the doctor–patient relationship in the Greek medical encounter. The association of desired information details and decision‐making preferences with screening for cancer procedures prediagnostically highlights the significance of providing the patients with the appropriate information and the choices available for their treatment. Copyright © 2010 John Wiley & Sons, Ltd.     

Common‐sense beliefs about cancer and health practices among women completing treatment for breast cancer

Objective: Following the end of adjuvant treatment, breast cancer survivors must cope with uncertainty related to the possibility of recurrence and the loss of the ‘safety net’ treatment provides. This study examined breast cancer survivors' efforts to manage uncertainty by making lifestyle changes, such as improvement in diet and exercise. We further investigated the role of women's common‐sense beliefs about their cancer, as described by Leventhal's self‐regulation theory, in explaining post‐treatment changes. Method: At 3 weeks and 3 months post‐treatment, 79 women who received adjuvant chemotherapy and/or radiation therapy for stages 0–III breast cancer (mean age=55 years) completed assessments of changes in health practices and other behaviors. Participants also completed measures of beliefs about the causes, course, personal control, and consequences of their cancer. Results: Survivors reported behavior changes directed toward improving physical, emotional, and spiritual well‐being. Results further indicated that women who believed their cancer had more severe consequences and those who attributed the development of cancer or the prevention of recurrence to health behaviors or stress were most likely to report improvement in diet or physical activity and reduction in alcohol use or stress. Conclusions: Findings suggest that breast cancer survivors are poised to make lifestyle changes after treatment ends, creating an opportune time for health promotion interventions. Understanding women's cancer beliefs could help guide the development of tailored, proactive interventions to improve the health and well‐being of breast cancer survivors. Copyright © 2010 John Wiley & Sons, Ltd.     

Women's experiences with genomic testing for breast cancer recurrence risk

BACKGROUND:

Few studies have examined how patients understand and use genomic test results when deciding about treatment. This study examined how women receive and incorporate results of Oncotype DX, a genomic test that offers recurrence risk estimates, into decisions about adjuvant treatment for early stage breast cancer.

METHODS:

Participants in the cross‐sectional study were 77 women with early stage, estrogen receptor‐positive breast cancer with 0 to 3 positive lymph nodes who received Oncotype DX between 2004 and 2009. Mailed surveys, supplemented by medical chart review, assessed how women received and understood recurrence risk information based on the test.

RESULTS:

The most common test results were low (50%, 34 of 68) or intermediate (37%, 25 of 68) breast cancer recurrence risk. Most women accurately recalled their recurrence risk based on the test (71%) and felt they understood much of what they were told about it (67%). Approximately 25% of women recalled experiencing test‐related distress. Women's perceived recurrence risk was associated with their actual genomic‐based recurrence risks, having had a previous cancer diagnosis, and worry about recurrence. Women with high recurrence risk typically had chemotherapy (78%, 7 of 9), whereas only 2 with a low recurrence risk did (7%, 2 of 30).

CONCLUSIONS:

This is among the first studies to describe patients' experiences with genomic testing for recurrence risk. Although many women understood discussions about their genomic test results, a third reported not fully understanding these discussions, suggesting a need to aid and improve risk communication and treatment decision making. Cancer 2010. © 2010 American Cancer Society.     

Physician over-recommendation of mammography for terminally ill women

BACKGROUND:

There has been recent, sometimes intense, debate about when to begin screening and how often to screen women for breast cancer with mammography. However, there should be no controversy regarding screening women who are unlikely to benefit from the procedure, such as those with a serious, life‐limiting illness who would not live long enough to benefit from the potential detection and treatment of breast cancer. Identifying characteristics of physicians who recommend mammography for terminally ill women can help guide efforts to minimize patient risks and make better use of health care resources.

METHODS:

The authors used data from a nationally representative survey of primary care physicians (PCPs) (N = 1196; response rate, 67.5%) conducted in 2006 and 2007 to examine PCPs' breast cancer screening recommendations for hypothetical patients ages 50 years, 65 years, and 80 years who were healthy, had a moderate comorbidity, or had a terminal comorbidity.

RESULTS:

Many PCPs (47.7%) reported that they would recommend mammography to a woman aged 50 years, 65 years, or 80 years with terminal lung cancer, indicating over‐recommendation. Physician characteristics associated with over‐recommending mammography included obstetrician/gynecologist (odds ratio [OR], 1.69) or internal medicine (OR, 0.45) specialty, being a woman (OR, 1.40), being a racial/ethnic minority (OR, 1.72), and working in a smaller practice (OR, 1.41).

CONCLUSIONS:

The current results indicated that physician over‐recommendation of screening mammography among terminally ill women is common. Certain physician and practice characteristics, including specialty, were associated with over‐recommending mammography. The authors concluded that an informed and shared mammography decision‐making process for terminally ill women may eliminate unnecessary patient risks and health care expenditures. Cancer 2012;. © 2011 American Cancer Society.     

Predictors of distress and quality of life in patients undergoing cancer therapy: impact of treatment type and decisional role

Purpose: The purpose of this secondary investigation was to examine the impact of the type of treatment received and the perceived role in treatment decision making in predicting distress and cancer‐specific quality of life in patients newly diagnosed with breast or prostate cancer. Method: Participants included 1057 newly diagnosed breast and prostate cancer patients from four Canadian cancer centers who partook in a randomized controlled trial examining the utility of providing patients with an audio‐recording of their treatment planning consultation. A MANCOVA was performed to predict distress and cancer‐specific quality of life at 12 weeks post‐consultation based on control variables (patient age, education, residence, tumor size (breast sample), gleason score (prostate sample), and receipt of an initial treatment consultation recording), predictor variables (treatment type—chemotherapy, hormone therapy, radiation therapy; decisional role—active, collaborative, passive), and interactions between these predictors. Results: Women who received chemotherapy and reported having played a more passive role in treatment decision making had significantly greater distress and lower cancer‐specific quality of life at 12‐week post‐consultation. There were no statistically significant predictors of these outcomes identified for men with prostate cancer. Conclusion: Receipt of chemotherapy places women with breast cancer at risk for distress and reduced quality of life, but only for the subset of women who report playing a passive role in treatment decision making. Prospective, longitudinal studies are needed to confirm the present findings and to explicate the antecedents, composition, and consequences of the ‘passive’ decisional role during the treatment phase of the cancer trajectory. Copyright © 2009 John Wiley & Sons, Ltd.     

Developing an aftercare decision aid; assessing health professionals' and patients' preferences

Personalising aftercare for curatively treated breast cancer patients is expected to improve patient satisfaction with care. A patient decision aid can support women in making decisions about their aftercare trajectory, but is currently not available. The aim of this study was to assess the needs of patients and health professionals with regard to an aftercare decision aid to systematically develop such a decision aid. Focus groups with patients and individual interviews with health professionals were digitally recorded and coded using the Framework analysis. Although most patients felt few aftercare options were available to them, health professionals reported to provide various options on the patients' request. Patients reported difficulty in expressing their need for options to their health professional. Although most patients were unfamiliar with decision aids, the majority preferred a paper‐based patient decision aid, while most health professionals preferred an online tool. The practical implications for the intended patient decision aid are: that a digital tool with paper‐based element should be developed, the patient decision aid should facilitate both rational and intuitive processes and should provide insight in patients' preferences concerning aftercare to discuss these explicitly.     

Gambling with your life: the process of breast cancer treatment decision making in Chinese women

Treatment decision making (TDM) studies have primarily focused on assessing TDM quality and predominantly presume rational analytic processes as the gold standard. In a grounded theory study of 22 Hong Kong Chinese women following breast surgery who completed an in-depth interview exploring the process of TDM in breast cancer (BC), narrative data showed that discovery of a breast abnormality and emotional responses to BC diagnosis influence the TDM process. Lack of guidance from surgeons impaired TDM. Decisions were, for the most part, made using intuitive, pragmatic and emotionally driven criteria in the absence of complete information. The experience of TDM, which was likened to gambling, did not end once the decision was made but unfolded while waiting for surgery and the post-operative report. In this waiting period, women were emotionally overwhelmed by fear of death and the uncertainty of the surgical outcome, and equivocated over whether they had made the 'right' choice. This suggests that Chinese women feel they are gambling with their lives during TDM. These women are particularly emotionally vulnerable whilst waiting for their surgery and the post-surgical clinical pathology results. Providing emotional support is particularly important at this time when these women are overwhelmed by uncertainty.