Entertainment education for breast cancer surgery decisions: A randomized trial among patients with low health literacy

Objective

To evaluate an entertainment-based patient decision aid for early stage breast cancer surgery in low health literacy patients.

Methods

Newly diagnosed female patients with early stage breast cancer from two public hospitals were randomized to receive an entertainment-based decision aid for breast cancer treatment along with usual care (intervention arm) or to receive usual care only (control arm). Pre-decision (baseline), pre-surgery, and 1-year follow-up assessments were conducted.

Results

Patients assigned to the intervention arm of the study were more likely than the controls to choose mastectomy rather than breast-conserving surgery; however, they appeared better informed and clearer about their surgical options than women assigned to the control group. No differences in satisfaction with the surgical decision or the decision-making process were observed between the patients who viewed the intervention and those assigned to the control group.

Conclusions

Entertainment education may be a desirable strategy for informing lower health literate women about breast cancer surgery options.

Practice Implications

Incorporating patient decision aids, particularly computer-based decision aids, into standard clinical practice remains a challenge; however, patients may be directed to view programs at home or at public locations (e.g., libraries, community centers).     

The effects of process-focused versus experience-focused narratives in a breast cancer treatment decision task

Objective

To examine the effect of patient narratives that discuss decision processes versus patient experiences on decisions about treatments for early stage breast cancer.

Methods

We recruited 300 women with no previous history of breast cancer to imagine that they had been diagnosed with early stage breast cancer and to choose between mastectomy and lumpectomy with radiation. Before learning about their treatment options, participants were randomly assigned to one of four conditions with videotaped stories from fictitious cancer survivors, using a 2 (content: experience versus process) × 2 (emotional valence: positive only vs. positive and negative) factorial design, or a control condition with no stories. We measured information search, treatment intentions, and decision satisfaction.

Results

Participants viewing process narratives spent more time searching for information. Participants viewing experience narratives reported a greater ability to imagine what it was like to experience the treatments; they also evaluated their decision more positively on several dimensions.

Conclusions

Process narratives appeared to guide information search, and experience narratives improved evaluations of the decision process.

Practice implications

There is no evidence that process and experience narratives ‘bias’ decisions in the same manner as outcome narratives. Further, their potential to focus patient attention on key information and increase patient confidence in decision making appears significant.     

A prospective cohort study of shared decision making in lung cancer diagnostics: Impact of using a patient decision aid

ObjectiveThe objective of this study was to describe the impact on patient-reported outcomes of introducing Shared Decision Making (SDM) and a Patient Decision Aid (PtDA) in the initial process of lung cancer diagnostics.MethodsWe conducted a prospective cohort study, where a control cohort was consulted according to usual clinical practice. After introducing SDM through a PtDA and training of the staff, the SDM cohort was enrolled in the study. All patients completed four questionnaires: the Decisional Conflict Scale (DCS) before and after the consultation, the CollaboRATE scale after the consultation, and the Decision Regret Scale (DRS).ResultsPatients exposed to SDM and a PtDA had significantly improved DCS scores after the consultation compared to the control group (a difference of 10.26, p = 0.0128) and significantly lower DRS scores (a difference of 8.98, p = 0.0197). Of the 82 control patients and 52 SDM patients 29% and 54%, respectively, gave the maximum score on the CollaboRATE scale (Pearson’s chi² 8.0946, p = 0.004).ConclusionThe use of SDM and a PtDA had significant positive impact on patient-reported outcomes.Practice implicationsOur results may encourage the increased uptake of SDM in the initial process of lung cancer diagnostics.     

Impact of including quantitative information in a decision aid for colorectal cancer screening: A randomized controlled trial

Objective: Guidelines recommend that decision aids provide quantitative information about risks and benefits of available options. Impact of providing this information is unknown.Methods: Randomized trial comparing two decision aids about colorectal cancer (CRC) screening with colonoscopy or fecal immunochemical test (FIT). 688 primary care patients due for CRC screening viewed a decision aid that uses words only (Verbal arm) vs. one that provides quantitative information (Quantitative arm). Main outcomes included perceived CRC risk, intent to be screened, and test preference, measured before and after viewing decision aid, and screening uptake at six months. Analyses were performed with ANCOVA and logistic regression.Results: Compared to the Verbal arm, those in the Quantitative arm had a larger increase in intent to undergo FIT (p?=?0.011) and were more likely to switch their preferred test from non-FIT to FIT (28% vs. 19%, p?=?.010). There were decreases in perceived risk in the Verbal Arm but not the Quantitative Arm (p?=?0.004). There was no difference in screening uptake. Numeracy did not moderate any effects.Conclusions: Quantitative information had relatively minor impact and no clearly negative effects, such as reducing uptake.Practice implications: Quantitative information may be useful but not essential for patients viewing decision aids.     

Text-only and picture conversation aids both supported shared decision making for breast cancer surgery: Analysis from a cluster randomized trial

ObjectivesTo determine if two encounter conversation aids for early-stage breast cancer surgery increased observed and patient-reported shared decision making (SDM) compared with usual care and if observed and patient-reported SDM were associated.MethodsSurgeons in a cluster randomized trial at four cancer centers were randomized to use an Option Grid, Picture Option Grid, or usual care. We used bivariate statistics, linear regression, and multilevel models to evaluate the influence of trial arm, patient socioeconomic status and health literacy on observed SDM (via OPTION-5) and patient-reported SDM (via collaboRATE).ResultsFrom 311 recordings, OPTION-5 scores were 73/100 for Option Grid (n = 40), 56.3/100 for Picture Option Grid (n = 144), and 41.0/100 for usual care (n = 127; p < 0.0001). Top collaboRATE scores were 81.6 % for Option Grid, 80.0 % for Picture Option Grid, and 56.4 % for usual care (p < 0.001). Top collaboRATE scores correlated with an 8.60 point (95 %CI 0.66, 13.7) higher OPTION-5 score (p = 0.008) with no correlation in the multilevel analysis. Patients of lower socioeconomic status had lower OPTION-5 scores before accounting for clustering.ConclusionsBoth conversation aids led to meaningfully higher observed and patient-reported SDM. Observed and patient-reported SDM were not strongly correlated.Practice implicationsHealthcare providers could implement these conversation aids in real-world settings.     

Results from a randomized trial of a web-based,tailored decision aid for women at high risk for breast cancer

Objective

To assess the impact of Guide to Decide (GtD), a web-based, personally-tailored decision aid designed to inform women's decisions about prophylactic tamoxifen and raloxifene use.

Methods

Postmenopausal women, age 46–74, with BCRAT 5-year risk ≥1.66% and no prior history of breast cancer were randomized to one of three study arms:intervention (n = 690), Time 1 control (n = 160), or 3-month control (n = 162). Intervention participants viewed GtD prior to completing a post-test and 3 month follow-up assessment. Controls did not. We assessed the impact of GtD on women's decisional conflict levels and treatment decision behavior at post-test and at 3 months, respectively.

Results

Intervention participants had significantly lower decisional conflict levels at post-test (p < 0.001) and significantly higher odds of making a decision about whether or not to take prophylactic tamoxifen or raloxifene at 3-month follow-up (p < 0.001) compared to control participants.

Conclusion

GtD lowered decisional conflict and helped women at high risk of breast cancer decide whether to take prophylactic tamoxifen or raloxifene to reduce their cancer risk.

Practice implications

Web-based, tailored decision aids should be used more routinely to facilitate informed medical decisions, reduce patients’ decisional conflict, and empower patients to choose the treatment strategy that best reflects their own values.     

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

Objective

To evaluate an entertainment-based patient decision aid for prostate cancer screening among patients with low or high health literacy.

Methods

Male 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.

Results

Patients 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.

Conclusion

Entertainment education may be an effective strategy for promoting informed decision making about prostate cancer screening among patients with lower health literacy.

Practice implications

As barriers to implementing computer-based patient decision support programs decrease, alternative models for delivering these programs should be explored.     

The implementation of a decision aid for women with early-stage breast cancer considering contralateral prophylactic mastectomy: A pilot study

ObjectiveDespite little survival benefit and potential for harm, contralateral prophylactic mastectomy (CPM) rates are increasing amongst early-stage breast cancer patients at low contralateral breast cancer risk. We developed a CPM decision aid (DA) and conducted a pilot implementation.MethodsSurgeons and oncologists recruited eligible patients considering CPM. Consenting patients received the DA, completed a questionnaire and participated in a semi-structured interview. Clinicians were interviewed at study close.ResultsEleven clinicians and 31 patients participated. Three themes emerged: perceived utility and impact of the DA, disagreement regarding timing of delivery and target population, and implementation strategies. Both women and clinicians found the DA valuable, indicating it confirmed rather than changed preferences. Women (all of whom raised CPM themselves), preferred offering the DA early in treatment discussions whilst clinicians favoured targeting women who enquired about CPM.ConclusionA DA about CPM is feasible and acceptable, but questions remain about the role of DAs in these types of decisions where one option has limited medical benefit.Practice implicationsSome women have a high need to make an informed choice about CPM. Tools to support this could include a DA with a clear recommendation against CPM and an explanation why.     

Improving knowledge and decision readiness to participate in cancer clinical trials: Effects of a plain language decision aid for minority cancer survivors

ObjectiveTo evaluate the impact of a web-based, plain language decision aid (CHOICES DA) on minority cancer survivors’ knowledge of cancer clinical trials (CCTs), readiness for making decisions about clinical trial participation, and willingness to participate in a clinical trial.MethodsParticipants were 64 Black and Hispanic cancer survivors from Miami, Florida. In a single arm intervention study, participants completed self-report assessments of CCT knowledge, decision readiness regarding clinical trial participation, and willingness to participate at three time points.ResultsBlack and Hispanic participants did not differ on demographic characteristics. Post-test and follow-up measures of CCT knowledge and decision readiness were significantly greater than pre-test measures for the sample overall, and for Black and Hispanic participants separately. Few significant differences were observed between Black and Hispanic participant outcomes at each survey time point, and willingness to participate did not change overall and for either group independently.ConclusionsReviewing the CHOICES DA was associated with significantly improved knowledge and decision readiness to participate in a CCT immediately and at 2-week follow-up.Practical ImplicationsThese findings suggest that CHOICES DA may support informed decision making about CCT participation within an acute, yet clinically relevant window of time for minority cancer patients who are substantially under-represented in cancer research.     

Perceived facilitating and limiting factors for healthcare professionals to adopting a patient decision aid for breast cancer aftercare: A cross-sectional study

ObjectiveEffective healthcare innovations are often not adopted and implemented. An implementation strategy based on facilitators and barriers for use as perceived by healthcare professionals could increase adoption rates. This study therefore aimed to identify the most relevant facilitators and barriers for use of an innovative breast cancer aftercare decision aid (PtDA) in healthcare practice.MethodsFacilitators and barriers (related to the PtDA, adopter and healthcare organisation) were assessed among breast cancer aftercare health professionals (n = 81), using the MIDI questionnaire. For each category, a backward regression analysis was performed (dependent = intention to adopt). All significant factors were then added to a final regression analysis to identify to most relevant determinants of PtDA adoption.ResultsExpecting higher compatibility with daily practice and clinical guidelines, more positive outcomes of use, higher perceived relevance for the patient and increased self-efficacy were significantly associated with a higher intention to adopt. Self-efficacy and perceived patient relevance remained significant in the final model.ConclusionsLow perceived self-efficacy and patient relevance are the most important barriers for health professions to adopt a breast cancer aftercare PtDA.Practice implicationsTo target self-efficacy and perceived patient relevance, the implementation strategy could apply health professional peer champions.     

Fostering informed decisions: A randomized controlled trial assessing the impact of a decision aid among men registered to undergo mass screening for prostate cancer

Objective

Screening asymptomatic men for prostate cancer is controversial and informed decision making is recommended. Within two prostate cancer screening programs, we evaluated the impact of a print-based decision aid (DA) on decision-making outcomes.

Methods

Men (N = 543) were 54.9 (SD = 8.1) years old and 61% were African-American. The 2(booklet type: DA vs. usual care (UC)) × 2(delivery mode: Home vs. Clinic) randomized controlled trial assessed decisional and screening outcomes at baseline, 2-months, and 13-months.

Results

Intention-to-treat linear regression analyses using generalized estimating equations revealed that DA participants reported improved knowledge relative to UC (B = .41, p < .05). For decisional conflict, per-protocol analyses revealed a group by time interaction (B = −.69, p < .05), indicating that DA participants were less likely to report decisional conflict at 2-months compared to UC participants (OR = .49, 95% CI: .26–.91, p < .05).

Conclusion

This is the first randomized trial to evaluate a DA in the context of free mass screening, a challenging setting in which to make an informed decision. The DA was highly utilized by participants, improved knowledge and reduced decisional conflict.

Practice implications

These results are valuable in understanding ways to improve the decisions of men who seek screening and can be easily implemented within many settings.     

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 decision aid to facilitate informed choices among cataract patients: A randomized controlled trial

ObjectiveTo assess the effect of a patient decision aid on the quality of decision-making for patients with age-related cataracts.Methods773 patients with cataracts aged 50–80 years were randomly assigned to receive either the intervention decision aid (including standard information, quantitative information on the possible outcomes of cataract surgery and a value clarification exercise) or the control booklet (including standard information). The primary outcome was informed choice (defined as adequate knowledge and congruency between attitudes and surgical intentions), which was assessed at 2 weeks after intervention via a telephone interview.ResultsThe decision aid increased the proportion of participants making an informed choice, from 5.68 % in the control group to 27.7 % in the intervention group (P < 0.001). Compared with controls, more participants in the intervention group had adequate overall knowledge about cataract surgery (36.8 % vs. 8.79 % in controls; P < 0.001), and fewer participants intended to undergo surgery (22.5 % vs. 34.1 % in controls; P < 0.001).ConclusionUse of the patient decision aid may increase the proportion of patients making informed choices. Importantly, it might also reduce the acceptance of operations.Practice implications: Patient decision aids represent a simple and low-cost tool to facilitate informed choice among patients with cataracts.     

Cost effectiveness of a web-based decision aid for parents deciding about MMR vaccination: a three-arm cluster randomised controlled trial in primary care

Background

Levels of measles in England and Wales are at their highest for 18 years, and strategies targeting the different groups of parents who do not vaccinate their children continue to be needed. Decision aids for decisions regarding childhood immunisation appear to be effective in achieving an increase in vaccine uptake but their cost effectiveness is unknown.

Aim

To assess the cost effectiveness of a web-based decision aid to increase uptake of the MMR vaccine.

Design and setting

Economic evaluation conducted alongside a cluster randomised controlled trial using urban GP practices in the north of England.

Method

Fifty GP practices in the north of England were randomised to one of three trial arms: decision aid, leaflet, usual practice. A total of 220 first-time parents (child aged 3–12 months) were recruited. Parents self-reported their contacts with the NHS and other previous/expected resource utilisation; associated costs were calculated. Vaccine-uptake data were collected from GP practices. A cost-effectiveness analysis was undertaken and provided the incremental cost per first-vaccine uptake. Multiple imputation was used to account for missing data and findings were adjusted for baseline differences in parents’ levels of decisional conflict regarding MMR vaccination.

Results

Of the 220 first-time parents recruited to the study, 179 completed the baseline and post-intervention questionnaires. MMR uptake was highest for those receiving the decision aid (42 out of 42, 100%) versus usual practice (61 out of 62, 98%) and leaflet arm (69 out of 75, 92%), and was associated with lower cost (–£9.20 versus usual practice and –£7.17 versus leaflet).

Conclusion

The decision aid has a high chance of being cost effective, regardless of the value placed on obtaining additional vaccinations. It also appears to offer an efficient means of decision support for parents.     

乳腺癌患者的首次术式决策困境及相关因素

乳腺癌是我国女性最常诊断的癌症之首[1]。确诊后的乳腺癌患者大多要面临保乳和根治术间的首次术式抉择[2]。决策困境(decisionconflict)为在制定结局未知的决策时对可选方案存在的不确定感[3]。乳腺癌患者参与并做出符合其价值倾向的术式选择,有利于降低决策困境水平,是保障患者权利的重要举措之一[4]。患者是否具备参与能力是其能否切实参与、消除决策问题的基础[5]。本研究调查乳腺癌患者首次术式决策困境状况及其相关因素,为制定决策支持干预方案提供理论依据。     

Effect of decision aid for breast cancer prevention on decisional conflict in women with a BRCA1 or BRCA2 mutation: a multisite,randomized, controlled trial

PurposeWomen with a BRCA1 or BRCA2 mutation are at high risk for breast cancer and must make important decisions about breast cancer prevention and screening. In the current study, we report a multisite, randomized, controlled trial evaluating the effectiveness of a decision aid for breast cancer prevention in women with a BRCA mutation with no previous diagnosis of cancer.MethodsWithin 1 month of receiving a positive BRCA result, women were randomized to receive either usual care (control group) or decision aid (intervention group). Participants were followed at 3, 6, and 12 months; were asked about preventive measures; and completed standardized questionnaires assessing decision making and psychosocial functioning.ResultsOne hundred fifty women were randomized. Mean cancer-related distress scores were significantly lower in the intervention group compared with the control group at 6 months (P = 0.01) and at 12 months postrandomization (P = 0.05). Decisional conflict scores declined over time for both groups and at no time were there statistical differences between the two groups.ConclusionThe decision aid for breast cancer prevention in women with a BRCA1 or BRCA2 mutation is effective in significantly decreasing cancer-related distress within the year following receipt of positive genetic test results.Genet Med 19 3, 330–336.     

Factors associated with patient involvement in surgical treatment decision making for breast cancer

OBJECTIVE: To evaluate factors associated with women's reported level of involvement in breast cancer surgical treatment decision making, and the factors associated with the match between actual and preferred involvement in this decision. METHODS: Survey data from breast cancer patients in Detroit and Los Angeles was merged with surgeon data for an analytic dataset of 1101 patients and 277 surgeons. Decisional involvement and the match between actual and preferred amount of involvement were analyzed as three-level dependent variables using multinomial logistic regression controlling for clustering within surgeons. Independent variables included patient demographic and clinical factors, surgeon demographic and practice factors, cancer program designation, and two measures of patient-surgeon communication. RESULTS: We found variation in women's actual decisional involvement and match between actual and preferred involvement. Women with a surgeon-based or patient-based (versus shared) decision were significantly (p < or = 0.05) younger. Women who had too little decisional involvement (versus the right amount) were younger, while women with too much involvement had less education. Patient-surgeon communication variables were significantly associated with both involvement and match, and higher surgeon volume as associated with too little involvement. CONCLUSION: Patient factors and patient-surgeon communication influence women's perception of their involvement in breast cancer surgical treatment decision making. PRACTICE IMPLICATIONS: Decision tools are needed across surgeons and practice settings to elicit patients' preferences for involvement in treatment decisions for breast cancer.     

The impact of a patient decision aid on intention to undergo surgery for subacromial pain syndrome: An online randomised controlled trial

ObjectiveTo evaluate the effects of a patient decision aid for people considering shoulder surgery.MethodsParticipants with shoulder pain considering shoulder surgery (n = 425) were recruited online and randomised to (i) a decision aid outlining the benefits and harms of shoulder surgery and non-surgical options (then randomised to a side-by-side vs. top-and-bottom display of options); and (ii) general information about shoulder pain from the NHS. Outcomes included treatment intention (primary), knowledge, attitudes, informed choice, and decisional conflict. Linear and logistic regression models were used to evaluate between-groups differences in outcomes.Results409 participants (96%) had post-intervention data. Mean age was 41.3 years, 44.2% were female. There was no between-group difference in post-intervention treatment intention (MD ?0.2, 95% CI: ?3.3 to 2.8) and likelihood of intending to have shoulder surgery (OR 0.7, 95% CI: 0.3–1.5). The decision aid slightly improved knowledge (MD 4.4, 95% CI: 0.2–8.6), but not any other secondary outcomes. The display of options did not influence any outcome.ConclusionsIn this online trial, a co-designed patient decision aid had no effect on treatment intention, attitudes, informed choice, and decisional conflict, but a small effect on improving knowledge.Practice implicationsResearch is needed to understand reasons for the lack of anticipated effects.Trial registrationAustralia New Zealand Clinical Trials Registry (ACTRN12621000992808).