Decision-making support among racial and ethnic minorities diagnosed with breast or prostate cancer: A systematic review of the literature

ObjectiveTo describe the types of decision-making support interventions offered to racial and ethnic minority adults diagnosed with breast or prostate cancer and to draw any associations between these interventions and patient-reported quality of life (QoL) outcomes.MethodsWe conducted literature searches in five bibliographic databases. Studies were screened through independent review and assessed for quality. Results were analyzed using inductive qualitative methods to determine thematic commonalities and synthesized in narrative form.ResultsSearches across five databases yielded 2496 records, which were screened by title/abstract and full-text to identify 10 studies meeting inclusion criteria. The use of decision aids (DAs), trained personnel, delivery models and frameworks, and educational materials were notable decision-making support interventions. Analysis revealed six thematic areas: 1) Personalized reports; 2) Effective communication; 3) Involvement in decision-making; 4) Health literacy; 5) Social support; and 6) Feasibility in clinical setting.ConclusionEvidence suggests decision-making support interventions are associated with positive outcomes of racial and ethnic minorities with patient-reported factors like improved patient engagement, less decisional regret, higher satisfaction, improved communication, awareness of health literacy and cultural competence.Practice implicationsFuture decision-making interventions for racial and ethnic minority cancer patients should focus on social determinants of health, social support systems, and clinical outcomes like QoL and survival.     

Racial differences in veterans’ response to a standard vs. patient-centered decision aid for prostate cancer: Implications for decision making in African American and White men

ObjectiveTo determine whether racial differences exist in patient preferences for prostate cancer treatment after being informed about options using a patient-centered vs. a standard decision aid (DA).MethodsThis article reports secondary analyses of a large study of men diagnosed with early stage prostate cancer. Men were recruited from 4 VA Health Systems and randomized to receive a patient-centered or standard DA about prostate cancer treatment options. Data were collected at 1) baseline, 2) after reading the DA but prior to diagnosis, and 3) after receiving a cancer diagnosis and meeting with a urologist.ResultsWhite patients who received the patient-centered DA written at a 7^th grade reading level were more likely to prefer active surveillance and less likely to prefer radiation compared to those who received the standard DA written at >9th grade reading level. African American patients’ treatment preferences did not differ as a function of DA.ConclusionsWhen informed about prostate cancer treatment options through a patient-centered DA, White patients changed their treatment preferences but African American patients did not.Practice ImplicationsAs DAs are increasingly being used in clinical practice, more research is needed regarding the efficacy, relevance, and receptivity of DAs for African Americans.     

Triadic agreement about advanced cancer treatment decisions: Perceptions among patients,families, and oncologists

ObjectivesWhen patients make cancer treatment decisions, they consider the needs and preferences of family caregivers and clinicians. We examined how much all three triad members agreed about goals of treatment and caregivers’ influence on decision-making.MethodsWe surveyed 70 triads of patients, caregivers, and oncologists who had recently made an advanced cancer treatment decision. We assessed each triad member’s perception of the goal of treatment and the caregiver’s influence on the decision. Participants also completed scales related to decisional conflict, satisfaction, and regret.ResultsIn only 28/70 triads (40%), all three agreed on the goal of treatment with the most common goal being to live longer (n = 22). Whereas patients and caregivers tended to think the goal was to cure or live longer, oncologists were less optimistic. In only 22 triads (31%), all three agreed on how much influence the caregiver had on decision-making. Oncologists tended to underestimate caregiver influence. Patients and caregivers had low decisional conflict (M=15.40, SD=4.51; M=17.09, SD=6.34, respectively).ConclusionsAdvanced cancer treatment decision-making occurs amid incomplete understanding among patients, caregivers, and oncologists.Practice implicationsConfirming agreement about goals of care and influence on treatment decision-making may increase the likelihood of goal-concordant care throughout the illness trajectory.     

Impact of a printed decision aid on patients’ intention to undergo prostate cancer screening: a multicentre,pragmatic randomised controlled trial in primary care

BackgroundDespite recommendations against systematic screening for prostate cancer, 70% of patients still request prostate-specific antigen testing.AimTo assess the impact of a decision aid on patients’ intention to undergo prostate cancer screening.MethodMales aged 50–75 years were randomised to receive either the decision aid (intervention group) or usual care (control group). The primary outcome was the proportion of patients’ intending to undergo prostate cancer screening, assessed immediately after reading the decision aid. The reasons underlying their choice were elicited and the proportion of patients citing each reason to undergo, or not undergo, prostate cancer screening were compared between the two arms.ResultsA total of 1170 patients were randomised (588 in the intervention arm) from November 2012 to February 2013. The proportion of patients who intended to be tested for prostate cancer in the intervention arm (123 patients [20.9%]) was significantly reduced compared with the control arm (57 patients [9.8%]) (difference 11.1%, 95% confidence interval [CI] = 7.0 to 15.2, P<0.0001). In the intervention group, a lower proportion of individuals expressed that cancer screening would protect them from the disease, compared with the control group (P<0.0001), while a greater proportion of individuals stated that prostate cancer screening would not benefit their health (P<0.0001) and may involve procedures with harmful side effects (P = 0.0005).ConclusionThe decision aid improved participants’ informed decision making and reduced their intent to undergo prostate cancer screening.     

Prostate-specific health-related quality of life and patient-physician communication — A 3.5-year follow-up

ObjectiveThe aim of this study is to examine associations between prostate-specific health-related quality of life (HRQOL) and aspects of patient-physician communication in localized prostate cancer treatment.MethodsData of patients with localized prostate cancer were collected at 6-month intervals over a 3.5-year period within a prospective, observational study (HAROW). Data collection comprised D’Amico risk categories, the Charlson Comorbidity Index, patient-physician communication (information, shared decision making, support, devotion), and prostate-specific HRQOL (incontinence aid, urinary symptoms, bowel symptoms, hormonal treatment-related symptoms, sexual functioning, sexual activity). Data of N = 1722 patients undergoing radical prostatectomy were analyzed by longitudinal multilevel analysis.ResultsThe mean patient age was 65 years; 31% had a low risk and 38% an intermediate risk of cancer growth and spread; 73% had a Charlson Comorbidity Index of 0. Significant associations were found between prostate-specific HRQOL and shared decision making, support and devotion. Patient information was not significantly associated with aspects of prostate-specific HRQOL.ConclusionPatient reported long term outcomes are associated with aspects of patient-physician communication in prostate cancer patients. Patients feeling involved by their urologists experience less side effects of (surgical) treatment.Practice implicationsSpecial communication training programmes should be developed and implemented for urologists.     

Differences in information seeking among breast,prostate, and colorectal cancer patients: Results from a population-based survey

ObjectiveThere is much research describing cancer patients’ information needs and their use of the Internet, print media, and other sources to fulfill these needs. Yet little is known about whether patients with different types of cancer vary in their information needs and seeking behaviors. This study used population-based data to address this question.MethodsA sample was randomly drawn from the list of patients with breast, prostate, or colorectal cancer reported to the Pennsylvania Cancer Registry in 2005. Patients completed a mail survey (N = 2010); respective response rates were 68%, 64%, and 61%.ResultsColorectal cancer patients reported consistently less information seeking than breast and prostate cancer patients. Multivariate analyses revealed that differences by cancer type were not explained by sex or other demographics, disease stage, or treatment received. These differences were most pronounced among patients with early stage cancer.ConclusionCancer patients have myriad information needs and use a range of sources to satisfy these needs, but there appear to be important differences in information engagement by cancer type.Practice implicationsUnderstanding differences in information seeking among disease-specific populations may help guide future patient education and decision making across the care continuum.     

Decision preparation, satisfaction and regret in a multi-center sample of men with newly diagnosed localized prostate cancer

Objective

To describe relationships between use of the Personal Patient Profile-Prostate (P3P) decision support system and patient characteristics, and perceived preparation for decision making (PrepDM), satisfaction and decisional regret in the context of prostate cancer treatment choice.

Methods

494 men with localized prostate cancer (LPC) were randomized to receive the P3P intervention or usual care and completed pre-treatment, 1-month and 6-month outcome measures. Multivariable linear regression models were fit for each outcome.

Results

Physician consult visits prior to enrollment, race/ethnicity, and use of clinic-provided books were significant predictors of perceived PrepDM at 1 month. Prior Internet use and PrepDM significantly predicted 6-month decision satisfaction. Decisional regret was significantly predicted by demographics, anxiety, PrepDM score, and EPIC bowel domain score at 6 months. Use of P3P did not predict any outcome.

Conclusion

While the P3P intervention did not significantly affect the outcomes, pre-enrollment information and preparation were strong predictors of the 1- and 6-month outcomes. Decision regret was significantly influenced by personal characteristics and post-treatment symptoms/side effects.

Practice implications

Information received and used between biopsy and the treatment options consult visit is likely to make a difference in decision satisfaction.     

Decision making about anti-TNF therapy: A pilot trial of a shared decision-making intervention

ObjectiveWe conducted a pre-post pilot trial to determine the feasibility and acceptability of a multi-component intervention (pre-clinic letter, shared decision making cards and follow-up phone call) designed to facilitate SDM in pediatric inflammatory bowel disease (IBD).MethodsWe recruited physicians (n = 11) caring for IBD patients and families (n = 36) expected to discuss anti-tumor necrosis treatment. We measured feasibility and acceptability of the intervention, observed SDM, perceived SDM, decision conflict, and regret. Medical records were used to assess clinical outcomes, time to decision and adherence. We compared all outcomes between the usual care and intervention study arms.ResultsTwo out of three intervention components were feasible. Visit length increased significantly in the intervention arm. Parents and patients rated the intervention as acceptable, as did most physicians. The intervention was associated with a higher-level of observed SDM. There was no difference perceived SDM, decision conflict, regret or quality of life outcomes between arms. Physician global assessment improved over time in the intervention arm.ConclusionsThis pilot trial provides important guidance for developing a larger scale trial of a modified intervention.Practice implicationsOverall, our intervention shows promise in supporting SDM and engaging both parents and patients in pediatric IBD decisions.     

A systematic review of women’s satisfaction and regret following risk-reducing mastectomy

ObjectiveA systematic review of quantitative and qualitative studies, to describe patient satisfaction and regret associated with risk-reducing mastectomies (RRM), and the patient-reported factors associated with these among women at high risk of developing breast cancer.MethodsStudies were identified using Medline, CINAHL, Embase and PsycInfo databases (1995–2016). Data were extracted and crosschecked for accuracy. Article quality was assessed using standardised criteria.ResultsOf the 1657 unique articles identified, 30 studies met the inclusion criteria (n = 23 quantitative studies, n = 3 qualitative studies, n = 4 mixed-method studies). Studies included were cross-sectional (n = 23) or retrospective (n = 7). General satisfaction with RRM, decision satisfaction and aesthetic satisfaction were generally high, although some women expressed regret around their decision and dissatisfaction with their appearance. Factors associated with both patient satisfaction and regret included: post-operative complications, body image changes, psychological distress and perceived inadequacy of information.ConclusionWhile satisfaction with RRM was generally high, some women had regrets and expressed dissatisfaction. Future research is needed to further explore RRM, and to investigate current satisfaction trends given the ongoing improvements to surgical and clinical practice.Practice implicationsOffering pre-operative preparation, decisional support and continuous psychological input may help to facilitate satisfaction with this complex procedure.     

Entertainment education for prostate cancer screening: A randomized trial among primary care patients with low health literacy

ObjectiveTo evaluate an entertainment-based patient decision aid for prostate cancer screening among patients with low or high health literacy.MethodsMale primary care patients from two clinical sites, one characterized as serving patients with low health literacy (n = 149) and the second as serving patients with high health literacy (n = 301), were randomized to receive an entertainment-based decision aid for prostate cancer screening or an audiobooklet-control aid with the same learner content but without the entertainment features. Postintervention and 2-week follow-up assessments were conducted.ResultsPatients at the low-literacy site were more engaged with the entertainment-based aid than patients at the high-literacy site. Overall, knowledge improved for all patients. Among patients at the low-literacy site, the entertainment-based aid was associated with lower decisional conflict and greater self-advocacy (i.e., mastering and obtaining information about screening) when compared to patients given the audiobooklet. No differences between the aids were observed for patients at the high-literacy site.ConclusionEntertainment education may be an effective strategy for promoting informed decision making about prostate cancer screening among patients with lower health literacy.Practice implicationsAs barriers to implementing computer-based patient decision support programs decrease, alternative models for delivering these programs should be explored.     

Impact of a decision aid on newly diagnosed prostate cancer patients’ understanding of the rationale for active surveillance

ObjectiveTo compare newly diagnosed localized prostate cancer patients who did and did not view a decision aid (DA) on their knowledge of the rationale for active surveillance (AS).MethodsA cross-sectional study was conducted among 452 newly diagnosed low-risk localized prostate cancer patients. Patients were mailed the video/DVD DA and completed a web-based questionnaire that contained two multiple choice questions assessing knowledge of the rationale for AS. Multivariable logistic regression was used to estimate the effect of the DA on knowledge of the rationale for AS.ResultsPatients who watched the DA were more likely to correctly respond to each rationale for AS question; both comparisons were statistically significant. After adjustment, men who viewed the DA were 2.9 times as likely to correctly respond to both rationale for AS questions than men who did not view the DA (95% CI: 1.9–4.5).ConclusionPatients who viewed a DA better understand the reasons why AS is a viable treatment option for localized prostate cancer than patients who did not view a DA.Practice implicationsUrology clinics and practices should implement the utilization of a treatment DA for newly diagnosed, localized prostate cancer prior to the patients’ first cancer consultation.     

Effectiveness of question prompt lists in patients with breast cancer: A randomized controlled trial

ObjectivesTo evaluate the effectiveness of a question prompt list (QPL) in decision self-efficacy, decision-making participation, patient–physician communication, decisional conflict or regret, and health status in patients with breast cancer.MethodsA total of 240 patients with breast cancer were randomly assigned to a QPL group or control group (n = 120 each). The intervention and control groups received an additional educational QPL booklet and routine care, respectively.ResultsThe intervention group exhibited significant improvements in decision self-efficacy, perceived patient–physician interactions, and patient–physician communication compared with the control group. Multilevel modeling analyses revealed significant group–time interaction effects on decision self-efficacy (β = 9.99, P < 0.01), perceived patient–physician interactions (β = 8.10, P < 0.01), patient–physician communication (β = 5.02, P < 0.01), and anxiety status (β = ?3.78, P < 0.05). The QPL intervention exerted more favorable effects than routine care, with repeated measurements of the same patients and the data of patients under the care of the same surgeons accounted for.ConclusionsThe QPL intervention exerted multidimensional effects on decision-making outcomes among patients with breast cancer.Practical implicationsClinicians can integrate a QPL into routine care for patients with breast cancer.     

A Church-Based Intervention to Promote Informed Decision Making for Prostate Cancer Screening Among African American Men

ObjectivesThis feasibility study developed and pilot tested an intervention to: (1) increase knowledge about prostate cancer screening; and (2) promote self-efficacy to participate in the informed decision-making process.SettingAfrican American men are a priority audience for prostate cancer screening interventions to promote informed decision making, and faith-based settings have been shown to be an effective venue to reach this population. Therefore we used predominantly African American churches to develop and test our intervention.ParticipantsParticipants (N = 73) were recruited, and the intervention was administered by an African American health educator.InterventionWe developed and pretested a prostate cancer screening informed decision-making intervention based on the Ottawa Decision Support Framework and the health belief model. The intervention included a tool called the "road map," which depicts the potential consequences of a decision to undergo or forgo screening. A quasiexperi-mental design was used to test the intervention.Main Outcome MeasuresThe main outcome measures were change in knowledge and self-efficacy post intervention.ResultsProstate cancer knowledge (p < .0001) and self-efficacy (p = .025) significantly increased.ConclusionsA church-based intervention delivered by an African American health educator is a promising strategy for promoting informed decision making among African American men.     

Changes in Korean National Healthcare Insurance Policy and Breast Cancer Surgery Trend in Korea

BackgroundSince April 2015, the Korean National Health Insurance (NHI) has reimbursed breast cancer patients, approximately 50% of the cost of the breast reconstruction (BR) procedure. We aimed to investigate NHI reimbursement policy influence on the rate of immediate BR (IBR) following total mastectomy (TM).MethodsWe retrospectively analyzed breast cancer data between April 2011 and June 2016. We divided patients who underwent IBR following TM for primary breast cancer into “uninsured” and “insured” groups using their NHI statuses at the time of surgery. Univariate analyses determined the insurance influence on the decision to undergo IBR.ResultsOf 2,897 breast cancer patients, fewer uninsured patients (n = 625) underwent IBR compared with those insured (n = 325) (30.0% vs. 39.8%, P < 0.001). Uninsured patients were younger than those insured (median age [range], 43 [38–48] vs. 45 [40–50] years; P < 0.001). Pathologic breast cancer stage did not differ between the groups (P = 0.383). More insured patients underwent neoadjuvant chemotherapy (P = 0.011), adjuvant radiotherapy (P < 0.001), and IBR with tissue expander insertion (P = 0.005) compared with those uninsured.ConclusionIBR rate in patients undergoing TM increased after NHI reimbursement.     

Modeling patient-centered communication: Oncologist relational communication and patient communication involvement in breast cancer adjuvant therapy decision-making

Objective

Relational communication refers to those messages communicators naturally express that carry meaning about the type and quality of relationship they share. It is expected that patients of oncologists who express positive relational communication will be more communicatively involved in their office visits, and regret their decision for adjuvant therapy following surgery less.

Methods

One hundred eighty (180) audio-recorded discussions between oncologists (n = 40) and early stage (I–III) breast cancer patients were coded with the Siminoff Communication Content and Affect Program (SCCAP). The data were used to test the relationships between patient demographics, oncologist relational communication, patient communication involvement and self-reported patient decision regret.

Results

After controlling for clinician clusters, oncologists’ verbal (i.e., confirming messages) and nonverbal (i.e., direct and inclusive speech) relational communication is indirectly associated with lower patient decision regret via the mediating effect of greater patient communication involvement.

Conclusion

Clinician relational communication provides an influential affective climate for decision-making that appears to have important effects on patients’ decision confidence.

Practice implications

Clinicians should recognize the potential of their own relational messages to facilitate patients’ communication involvement in decision-making during cancer care.     

Barbers as Lay Health Advocates— Developing a Prostate Cancer Curriculum

Purpose:The purpose of this study was to develop and test the efficacy of a prostate health curriculum designed to train African American and Afro Caribbean barbers to deliver prostate cancer control messages to their customers.Procedures:The curriculum was drafted from information obtained from needs assessment surveys administered to barbers and customers from various barbershops in Brooklyn, New York. Focus groups were conducted to further inform the curriculum, which was pilot tested in training sessions.Findings:The high incidence of late-stage diagnosis prostate cancer in African Americans has often been attributed to lack of screening. In surveys administered to 92 customers and 19 barbers, only 26% of customers and 42% of barbers reported having some knowledge of the prostate-specific antigen (PSA) screening test. More than 90% of the barbers expressed a willingness to obtain prostate cancer information to specifically share with their customers, and 83% of customers expressed an interest in obtaining prostate cancer information and willingness to receive that information from their barbers. Following the pilot training, barber knowledge of prostate cancer increased significantly (p < .0001).Conclusions:This pilot study suggests that there is a need for intervention programs that will raise awareness and increase prostate health knowledge and behavior in communities with elevated incidence of prostate cancer. The study further suggests that barbers are willing to use their leadership skills to educate and encourage their customers to engage in informed decision making.     

Not having adequate time to make a treatment decision can impact on cancer patients’ care experience: Results of a cross-sectional study

ObjectiveWe examined whether patients reporting not having adequate time to make a treatment decision is associated with discordance between their preferred and perceived involvement in decision making.MethodsThis was a secondary analysis of a cross-sectional study involving Australian outpatients attending five medical or radiation oncology units. Logistic regression modelling was conducted.ResultsFour hundred twenty-three patients participated. Patients who reported not having adequate time to make their last important treatment decision had significantly higher odds of experiencing discordance between their preferred and perceived involvement in this decision, compared to those patients who reported having adequate time (OR: 2.76; 95% CI: 1.01–7.55; p = 0.048).ConclusionPatients should receive adequate time when making cancer treatment decisions. This may help patients “digest” and use the information they received, and become involved in decision making, to the extent they desire. Future research should further investigate what patients consider adequate time for decision making.Practice implicationsDoctors should assess patients’ preferences for the amount of time they prefer when making a treatment decision and tailor care accordingly. Offering patients two consultations with some time to think about their options in-between these consultations may be one method in achieving this.     

Longitudinal regret and information satisfaction after deciding on treatment for localized prostate cancer with or without a decision aid. Results at one-year follow-up in the PCPCC trial

Objective

To investigate the effect of including an online decision aid (DA) during prostate cancer treatment counseling on decisional regret and information satisfaction in a one-year follow-up.