Control Preferences Scale Research Articles

Decision-making in HIV clinical trials: a study with patients enrolled in antiretroviral trials

ObjectiveTo explore the decisional process of people living with human immunodeficiency virus (HIV) currently enrolled in antiretroviral clinical trials. MethodCross-sectional retrospective study. Outcome variables were reasons to participate, perceived decisional role (Control Preference Scale), the Decisional Conflict Scale and the Decisional Regret Scale. Descriptive statistics were calculated, and associations among these variables and with sociodemographic and clinical characteristics were analyzed with non-parametric techniques. ResultsMain reasons to participate were gratitude towards Fundación Huesped (47%), the doctor's recommendation (32%), and perceived difficulty to access treatment in a public hospital (28%). Most patients thought that they made their decision alone (54.8%) or collaboratively with the physician (43%). Decisional conflict was low, with only some conflict in the support subscale (median=16.67). Education was the only significant correlate of the total decisional conflict score (higher in less educated patients; p=0.018), whereas education, recent diagnosis, living alone, lower age, being man and doctor's recommendation to go to Fundación Huésped related to higher conflict in different subscales. Nobody regretted to participate. ConclusionsThe decision making regarding participation in HIV trials, from the perspective of participants, was made respecting their autonomy and with very low decisional conflict. Currently, patients show no signs of regret. However, even in this favorable context, results highlight the necessity of enhancing the decision support in more vulnerable patients (e.g., less educated, recently diagnosed or with less social support), thus warranting equity in the quality of the decision making process.

Awareness of Diagnosis and Decision-Making Preferences of Greek Cancer Patients

Objective: In Greece, the old phenomenon of hiding cancer diagnosis and depriving cancer patients of their right to participate in decisionmaking remains a reality. The aim of this study was to assess the decision-making preferences of Greek cancer patients and their awareness of diagnosis. Methods: It was a cross-sectional study. The sample consisted of 229 adult Greek patients diagnosed with cancer, attending the oncology outpatient department (outpatients) or being hospitalized (inpatients), in one general hospital in Athens. Patients who were aware of cancer diagnosis (n=209) were administered at the Control Preference Scale (CPS), a tool, designed to elicit decision-making preferences. The IBM SPSS program, version 21.0 was used for statistical analysis. Results: One hundred and one patients (52.8%) were males. The mean [±standard deviation (SD)] age was 64.8 (±11.2) years. The vast majority of patients knew they suffered from cancer (n=209, 91.3%). Older patients (p=0.003), those who lived in suburbs of the city (p=0.01), those who had lower educational level (p=0.001), those with lower personal income (p=0.001) and shorter disease duration (p=0.001) stated that were unaware of cancer diagnosis. Seventy five (36.2%) patients chose the shared-decision role in decision-making procedures. Lower age (OR 1.04, 95%, CI: 1.00-1.08, p= 0.05) and higher education level (OR 2, 63, 95%, CI: 1.11-6.29, p=0.03) were significantly associated with the preference of patients to actively participate in decision-making regarding treatment. Conclusions: Although Greek cancer patients are aware of cancer diagnosis and treatment, nowadays, they still seem to hesitate in playing a more active role in the decision-making procedures, which portrays the impact of the dominating paternalistic model of doctor-patient relationship in the Greek medical encounter

Exploration of Decisional Control Preferences in Adolescents and Young Adults with Cancer and Other Complex Medical Conditions.

Purpose: Adolescent and young adults (AYA) with cancer encounter many medical treatment decisions but may have variable desires for involvement in decision-making. This study describes the degree of decisional control AYA patients preferred in complex medical decisions. Methods: A cross-sectional descriptive correlational design evaluated experienced AYA patients' decision-making role preferences using the Control Preference Scale and explored relationships in a proposed model of decision control. Results: Overall, most patients preferred an "active collaborative" role (39%), where the patient prefers to make the final decision with input from the provider, or a "shared decision-making" role (34%), wherein the decision is jointly made between patient and provider. Oncology AYA patients tended to prefer a more passive role than nononcology AYA patients. Time since diagnosis also positively correlated with control preference, with patients preferring a more active level of decisional control as the number of days from diagnosis increased. While no other statistically significant relationships were found between factors put forth in the exploratory model and decision control, there were strong associations between the factors themselves that warrant future study. Conclusion: The findings advance the knowledge of AYA preferences for decision-making involvement, enhancing our ability to identify patients at risk for low health care engagement and explore the consequences of limited or impaired decisional capacity. Future research might examine interventions to promote self-management skills and patient decisional role preferences, fulfilling the need to respect both the desire for decision-making involvement of some patients and the preference to defer to the expertise of providers for others.

Elderly patients\u2019 decision-making embedded in the social context: a mixed-method analysis of subjective norms and social support

BackgroundOlder patients are increasingly encouraged to be actively involved but how they perceive their role in the decision-making process varies according to their health care providers and their health situation. Their role could be influenced by their social context but more specifically by subjective norms (i.e. patients’ view of the role that significant others expect them to play in the decision-making process) and perceived social support. We explore how social context (i.e. subjective norms and social support) relates to how the patient perceives their role in the decision-making process. Also, we explore the level of alignment on subjective norms between patients and their informal caregivers and nurses.MethodsMixed-method study among older patients, informal caregivers and nurses. For the quantitative questionnaire, a home care organisation randomly selected patients. The patients were asked to identify their informal caregiver and the home care organisation was asked to identify the nurse who was most involved in their care. In total 133 patients, 64 informal caregivers and 72 nurses were questioned. Participants for the qualitative interviews were selected using convenience sampling, resulting in the inclusion of ten patients, five informal caregivers and six nurses. Subjective norms were based on a previous study. Social support was measured with the ‘social support for health scale’ of the Health Literacy Questionnaire. The Control Preference Scale was used as outcome variable. The interviews focused on subjective norms, social support and how the patient perceived their role. Quantitative analysis included the calculation of subjective norm difference scores between respondent groups, one-way analysis of variance and multinomial logistic regression analysis. Directed content analysis was applied to the interviews using Atlas TI.ResultsLower difference scores were found for patient-informal caregiver dyads (mean = 0.95), implying more alignment than in patient-nurse dyads (mean = 2.12). Patients perceiving themselves to have a shared or passive role tend to believe that they are expected to leave decision-making to the health care provider. Higher social support scores related more to a shared role. Alignment relates to: familiarity with the patient’s preferences, overprotectiveness or valuing the care provider’s opinion and the severity of the patient’s medical history.ConclusionPatients and informal caregivers align on whether the patient should make decisions. The more patients believe that they are expected to leave decision-making to the health care provider, the more they perceive themselves as having a passive role. The more patients who feel they have support, the more they perceive themselves as having a shared role. Patients and caregivers could be facilitated to make role expectations explicit. Examining support resources in the social network is desirable.

639 Patient Control Preferences Prior to Discharge After Cardiac Surgery

The impact of patient preferences and participation in the acute recovery period after cardiac surgery is unknown. Our aim was to explore patient preferences for participation in discharge planning. Consecutive English speaking adults, from a single centre, were recruited (63, 32.1%). In an interview prior to discharge, patients were asked to rate responses to 3 questions using the 5 item Control Preferences Scale. Responses include active (1-2), collaborative (3) or passive (4-5) participation as an indication of level of control desired in relation to care. When planning 9 (14.3%) patients’ preference was for an active role, 25 (39.7%) preferred a collaborative approach and 29 (46.1%) a passive approach. Patients perceived their role was active (n=10, 15.9%), collaborative (n=17, 27.0%) or passive (n=36, 57.1%). When deciding when to go 9 (14.3%) patients’ preference was an active role, 18 (28.6%) preferred a collaborative approach and 36 (57.1%) a passive approach. Patients perceived their role was active (n=8, 12.7%), collaborative (n=13, 20.6%) or passive (n=42, 66.6%). When asked about preferred role in deciding where they go 21 (33.4%) patients’ preference was an active role, 19 (30.2%) a collaborative approach and 23 (36.5%) a passive approach. Patients perceived their role was active (n=24, 38.1%), collaborative (n=16, 25.4%) or passive (n=23, 36.5%). Preferences for control were congruous with perceived experience of involvement and are taken into account by clinicians managing discharge planning.

Is There a Relationship between Shared Decision Making and Breast Cancer Patients' Trust in Their Medical Oncologists?

Background. Adjuvant systemic treatment for early stage breast cancer significantly reduces the risk of mortality but is associated with side effects, reducing patients’ quality of life. Decisions about adjuvant treatment are preference sensitive and are thus ideally suited to a shared decision making (SDM) approach. Whether and how SDM affects patients’ trust in their oncologist is currently unknown. We investigated the association between patients’ trust in their oncologist and 1) observed level of SDM in the consultation, 2) congruence between patients’ preferred and perceived level of participation, and 3) patient and oncologist characteristics. Methods. Decision consultations (n = 101) between breast cancer patients and their medical oncologist were audio-recorded and transcribed verbatim. Patients’ trust in their oncologist was measured using the Trust in Oncologist Scale (TiOS). The observed level of SDM was scored using the 12-item Observing Patient Involvement In Decision Making scale (OPTION-12), preferred level of participation with the Control Preferences Scale, and perceived level of participation with an open question in telephonic interviews. Results. The average TiOS score was high overall (mean [SD] = 4.1 [.56]; range, 2.6–5.0). Low levels of SDM were observed (mean [SD] = 16 [11.6]; range, 2–56). Neither observed nor perceived level of participation in SDM was associated with trust. Patients’ preferred and perceived role in decision making was incongruent in almost 50% of treatment decisions. Congruence was not related to trust. A larger tumor size (β = 4.5, P = 0.03) and the use of a risk prediction model during the consultation (β = 4.1, P = 0.04) were associated with stronger trust. Conclusion. Patients reported strong trust in their oncologist. While low levels of SDM were observed, SDM was not associated with trust. These findings suggest it may not be necessary to worry about negative consequences for trust of using SDM or risk prediction models in oncological consultations. Considering the increased emphasis on implementing SDM, it is important to further explore how SDM affects trust in clinical practice.

Compulsory admissions and preferences in decision-making in patients with psychotic and bipolar disorders.

Participation in medical decisions and taking into account patients' values and preferences are especially important for psychiatric patients who may be treated against their will. The increasing rates of coercive measures and the underlying clinical, ethical, and legal issues highlight the need to examine their use in psychiatry. Although limited congruence in decision-making preferences may be on the basis of these coercive practices, this issue has not been adequately addressed. We explore the relationship between compulsory admissions and congruence in decision-making preferences in mental health settings. Cross-sectional study among 107 outpatients with DSM diagnoses of schizophrenia of bipolar disorder using the Control Preference Scale to assess congruence in decision-making experienced and preferred style. History of compulsory admissions was obtained through review of available records. Descriptive statistics and multivariate analyses were used. 70% of patients reported experiencing their preferred style of decision-making and 44% patients had history of compulsory admissions. These patients were more autonomous and preferred to take a more active role. The degree of congruence was lower in patients with previous compulsory admissions. The best predictors of compulsory admissions were not having a regular doctor and the unmatched participation preferences. Patients who experienced a different level of participation in decision-making than desired more frequently had compulsory admissions. We propose to assess participation preferences each time a relevant treatment decision is about to be made and tailor care accordingly. We identified several factors leading to compulsory admissions that can be modified to prevent further coercive measures.

Iranian Women’s Decision Making: Preferred Roles, Experienced Involvement, and Decisional Conflict When Undergoing Surgery for Early-Stage Breast Cancer

Treatment decision making largely depends on patients' own preferences. However, the availability of different treatment approaches often results in decisional conflict, discomfort, doubtfulness, and uncertainty about the best option. This study evaluated decision-making participation regarding surgery among women with early-stage breast cancer. This cross-sectional, descriptive-correlational study included 328 Iranian women with early-stage breast cancer. A convenience sample completed a demographic questionnaire, the Control Preferences Scale, the nine-item Shared Decision Making Questionnaire, and the Decisional Conflict Scale. Most participants preferred to maintain passive roles. High decisional conflict was associated with uncertainty about surgical treatment options, whereas lower decisional conflict was related to values clarity. Although preferred roles were not related to experienced involvement, they were related to heightened decisional conflict.

2041TiP - Health-related quality of life in patients with advanced soft tissue sarcomas treated with chemotherapy: The HOLISTIC study

BackgroundAround half of patients with intermediate or high-grade soft tissue sarcomas (STS) will develop advanced disease. The mainstay of treatment for advanced STS is chemotherapy. Although treatment intent is usually palliative, the degree to which chemotherapy affects symptoms of disease, patient functioning and health-related quality of life (HRQoL) is rarely measured nor incorporated into clinical trials. Radiological response rates, time to progression and survival are traditionally used to measure treatment benefit. Therapeutic decisions are often challenging due to modest response rates and treatment-related adverse events. HRQoL is perceived by some patients as of equal- or greater importance than survival. Clinicians should be able to provide HRQoL data to patients to enhance the shared decision-making process and encourage a holistic approach to care. The aim of this study is to assess HRQoL in patients with advanced STS treated with 1st line chemotherapy, explore the decision-making process and evaluate patient post-treatment reflection. Trial designThis is a longitudinal cohort study for patients aged ≥18 years with advanced STS (n=132) who are treated with 1st line chemotherapy. Patients from 8 centres (United Kingdom 3, The Netherlands 5) are invited to complete questionnaires at baseline, each cycle of chemotherapy and three-monthly during follow-up. Data collection will be done within PROFILES, an established international registry for cancer patient reported outcomes. Questionnaires include patient demographics, decisional conflict scale, control preferences scale, quality-quantity questionnaire, treatment expectations, EORTC-QLQ-C30, FACT-G (2 items), work-ability index, financial toxicity and decisional regret scale. Clinical details, such as STS histology, will be collected from patient records and linked to questionnaire data. The primary endpoint is change in global HRQoL from baseline to Cycle 4 of chemotherapy. Exploratory endpoints include HRQoL functioning scales and symptoms. Recruitment started February 2018; 57 patients have completed (at least) the baseline questionnaire. (May 2019). Clinical trial identificationNCT03621332. Legal entity responsible for the studyInstitute of Cancer Research, London, United Kingdom and Radboud UMC, Nijmegen, Netherlands. FundingHas not received any funding. DisclosureAll authors have declared no conflicts of interest.

Treatment decision-making and financial toxicity in metastatic breast cancer.

97 Background: Shared decision-making (SDM), a process where patients partner with their physician to incorporate personal preferences into treatment decisions, is a tenet of high-value healthcare. It is unknown if high-value care associated with SDM manifests in the form of decreased out-of-pocket costs. Therefore, this study analyzes the relationship between patient preference for SDM and financial toxicity in metastatic breast cancer (MBC). Methods: This cross-sectional study utilized surveys of women age ≥ 18 with MBC who received care at two academic hospitals in Alabama between 2017 and 2019. SDM preference and financial toxicity were measured using the Control Preferences Scale and the Comprehensive Score for Financial Toxicity (COST) tool (11-item scale from 0-44, with lower scores indicating worse FT), respectively. Patient demographic and clinical data were abstracted from the electronic medical record. Effect sizes were calculated using Cohen’s d or Cramer’s V. Differences in financial toxicity by SDM preference were estimated using mixed models clustered by site and treating medical oncologist. Results: In 79 women with MBC, 41% preferred SDM, 33% preferred provider-driven decision making, and 22% preferred patient-driven decision making. Patients preferring SDM were more often college educated (48% vs. 40%; V = .15), higher income (52% vs. 44%; V = .09), and privately insured (47% vs. 41%; V = .11). Overall median COST score was 23 (interquartile range 16-30), which varied modestly by SDM preference. After adjusting for patient demographic and clinical characteristics, similar financial toxicity levels were found in patients who preferred SDM (COST 22, 95% confidence interval [CI] 19-25), patient-driven decision making (COST 22, 95% CI 18-26), and provider-driven decision making (COST 24, 95% CI 20-27). Conclusions: Similar levels of financial toxicity were found in patients with differing decision–making preferences regarding their MBC treatment, which may be secondary to lack of discussions about cost. Further research is needed to determine if and how financial toxicity is being identified or included within decision-making.

“It’s important to me”: A qualitative analysis of shared decision-making and patient preferences in early-stage breast cancer patients.

227 Background: Shared decision-making (SDM) occurs when both patient and provider are involved in the treatment decision-making process. SDM allows patients to understand the pros and cons of different treatments while also helping them select the one that aligns with their care goals when multiple options are available. This qualitative study sought to understand different factors that influence early-stage breast cancer (EBC) patients’ approach in selecting treatment. Methods: This cross-sectional study included women with stage I-III EBC receiving treatment at the University of Alabama at Birmingham from 2017-2018. To understand SDM preferences, patients completed the Control Preferences Scale and a short demographic questionnaire. To understand patient’s values when choosing treatment, semi-structured interviews were conducted to capture patient preferences for making treatment decisions, including surgery, radiation, or systemic treatments. Interviews were audio-recorded, transcribed, and analyzed using NVivo. Two coders analyzed transcripts using a constant comparative method to identify major themes related to decision-making preferences. Results: Amongst the 33 women, the majority of patients (52%) desired shared responsibility in treatment decisions. 52% of patients were age 75+ and 48% of patients were age 65-74, with an average age of 74 (4.2 SD). 21% of patients were African American and 79% were Caucasian. Interviews revealed 19 recurrent treatment decision-making themes, including effectiveness, disease prognosis, physician and others’ opinions, side effects, logistics, personal responsibilites, ability to accomplish daily activities or larger goals, and spirituality. EBC patient preferences varied widely in regards to treatment decision-making. Conclusions: The variety of themes identified in the analysis indicate that there is a large amount of variability to what preferences are most crucial to patients. Providers should consider individual patient needs and desires rather than using a “one size fits all” approach when making treatment decisions. Findings from this study could aid in future SDM implementations.

Patient Perspectives on Decision Making for Carpal Tunnel Syndrome

Interventions that improve a patient's understanding of the problem and their options might reduce surgeon-to-surgeon variation, activate healthier patient behaviors and mindset, and optimize stewardship of resources while improving quality of care. Patients with carpal tunnel syndrome (CTS) have more uncertainty about which course of action to take (so-called decision conflict) than hand surgeons. We studied patient preferences regarding shared decision making (SDM) for different parts of the treatment for CTS. We assessed the following hypotheses: (1) Younger age does not correlate with a preference for greater involvement in decisions; (2) Demographic and socioeconomic factors are not independently associated with (A) preferences for decision making (separated into preoperative, operative, postoperative, and the full SDM scale) and (B) the Control Preference Scale; (3) the SDM scale does not correlate with the Control Preference Scale. We prospectively invited 113 new and postoperative patients with CTS to participate in the study. We recorded their demographics and they completed the SDM scale and the Control Preference Scale. The full SDM scale and all subsets showed a patient preference toward sharing the decisions for treatment with the surgeon with a moderate tendency toward patients wanting more surgeon involvement in decision making. On multivariable analysis, having commercial insurance compared with Medicare was independently associated with a preference for less surgeon involvement (ie, higher SDM scores) in decision making (regression coefficient, 0.60; 95% confidence interval, 0.03-1.2). Patients with CTS generally prefer to share decisions with their surgeon with a tendency for more surgeon involvement especially in the operative and postoperative period. Decision aids and preference elicitation tools used to ensure diagnostic and treatment decisions for CTS that are aligned with patient preferences are needed. Future studies might address the routine use of these tools on patient outcomes.

Older adults' preferred and perceived roles in decision-making about palliative chemotherapy, decision priorities and information preferences

AimPatients with cancer have varied preferences for involvement in decision-making. We sought older adults' preferred and perceived roles in decision-making about palliative chemotherapy; priorities; and information received and desired. MethodsPatients ≥65y who had made a decision about palliative chemotherapy with an oncologist completed a written questionnaire. Preferred and perceived decision-making roles were assessed by the Control Preferences Scale. Wilcoxon rank-sum tests evaluated associations with preferred role. Factors important in decision-making were rated and ranked, and receipt of, and desire for information was described. ResultsCharacteristics of the 179 respondents: median age 74y, male (64%), having chemotherapy (83%), vulnerable (Vulnerable Elders Survey-13 score ≥ 3) (52%). Preferred decision-making roles (n = 173) were active in 39%, collaborative in 27%, and passive in 35%. Perceived decision-making roles (n = 172) were active in 42%, collaborative in 22%, and passive in 36% and matched the preferred role for 63% of patients. Associated with preference for an active role: being single/widowed (p = .004, OR = 1.49), having declined chemotherapy (p = .02, OR = 2.00). Ranked most important (n = 159) were “doing everything possible” (30%), “my doctor's recommendation” (26%), “my quality of life” (20%), and “living longer” (15%). A minority expected chemotherapy to cure their cancer (14%). Most had discussed expectations of cure (70%), side effects (88%) and benefits (82%) of chemotherapy. Fewer had received quantitative prognostic information (49%) than desired this information (67%). ConclusionOlder adults exhibited a range of preferences for involvement in decision-making about palliative chemotherapy. Oncologists should seek patients' decision-making preferences, priorities, and information needs when discussing palliative chemotherapy.

Shared decision making: Physicians’ preferred role, usual role and their perception of its key components

ObjectiveTo investigate physicians’ preferred and usual roles in decision making in medical consultations, and their perception of shared decision making (SDM). MethodsA cross-sectional survey of 785 physicians in a large Dutch general teaching hospital was undertaken in June 2018, assessing their preferred and usual decision making roles (Control Preference Scale), and their view on SDM key components (SDMQ9 questionnaire). ResultsMost physicians (n = 232, 58%) preferred SDM, but more often performed paternalistic decision making (n = 121, 31%) in daily practice than they preferred (n = 80, 20%, p < 0.0001), most commonly because they judged the patient to be incapable of participating in decision making. Most physicians preferring SDM presented different options for treatment (n = 213, 92%) with their advantages and disadvantages (n = 209, 90%) but fewer made clear that a decision had to be made (n = 104, 45%) or explored the patient’s wish how to be involved in decision making (n = 80, 34%). ConclusionAlthough most physicians prefer SDM, they often revert to a paternalistic approach and tend to limit SDM to discussing treatment options. Practice implicationTeaching physicians in SDM should include raising awareness about discussing the decision process itself and help physicians to counter their tendency to revert to paternalistic decision making in daily practice.

Do parents of children with cancer want to participate in treatment decision-making?

This study aimed to describe parents' preferences regarding their role in treatment decision-making when a child has cancer and examines whether their preferences were related to parents sociodemographic characteristics (sex and education level), patients' characteristics (age group and treatment status), and healthcare context features (parents' perception of family-centered care). Two hundred and twenty-eight parents of children/adolescents with cancer were recruited from two Portuguese pediatric oncology wards. Participants provided sociodemographic and clinical information. The Control Preferences Scale for Pediatrics was used to assess the parents' preferred role in treatment decision-making. The Measure of Process of Care assessed the parents' perception of family-centered care (family-centered services and providing general information subscales). Results showed that parents preferred a passive-collaborative role (45.2%), followed by collaborative (27.2%), passive (21.0%), and active-collaborative (6.6%). None preferred an active role. Chi-square test showed that the group of parents preferring a passive role had a lower proportion of more-educated parents, compared to those preferring active-collaborative or collaborative roles. Additionally, groups did not proportionally differ according to the parents' sex, patients' age, and treatment status. A multivariate analysis of variance showed that parents preferring an active-collaborative role reported lower mean scores on family-centered services compared to those preferring passive-collaborative and passive roles. Finally, no significant differences were found concerning providing general information. This study's findings may guide professionals in identifying parents' preferences regarding their participation in treatment decision-making process. Mapping their preferences may support professionals in promoting desirable levels of parental involvement in decisions in pediatric oncology context.

Older adults’ preferred and perceived roles in decision making about palliative chemotherapy: Their decision priorities, and information preferences.

11546 Background: We sought older adults’ preferred and perceived roles in decision-making about palliative chemotherapy; their decision-making priorities; and information received and desired. Methods: Patients aged ≥65 years with incurable cancer who had discussed palliative chemotherapy with an oncologist and made a decision about whether or not to receive palliative chemotherapy were invited to complete a written questionnaire. Preferred and perceived decision-making roles were assessed by the Control Preferences Scale (CPS). Associations with preferred decision-making role were examined using Wilcoxon rank sum tests. Factors important in making a decision about chemotherapy, and receipt of and desire for information were described. Results: The 179 respondents had a median age of 74 years (range 65 to 92 years). Most were male (114, 64%) and had chosen to receive chemotherapy (148, 83%). Half (92, 52%) were vulnerable by the Vulnerable Elders Survey-13 (score ≥3). Preferred decision-making roles (n = 173) were active in 39%, collaborative in 27%, and passive in 35%. Perceived decision-making roles (n = 172) were active in 42%, collaborative in 22%, and passive in 36%, and matched the preferred role for 63% of patients. Preference for an active role was associated with being single/widowed (p = 0.004, OR 1.49) and declining chemotherapy (p = 0.02, OR 2). Factors ranked most important when making a decision about chemotherapy (n = 159) were “doing everything possible” (30%), “my doctor’s recommendation” (26%), “my quality of life” (20%), and “living longer” (15%). A minority expected chemotherapy to cure their cancer (14%). Most had discussed expectations of cure (70%), side effects (88%) and benefits (82%) of chemotherapy, though fewer had received quantitative prognostic information (49%) than desired this (67%). Conclusions: Older adults showed varied preferences for involvement in decision-making about palliative chemotherapy, and most played the role that they preferred. To facilitate shared decision-making, oncologists should seek patients’ decision-making preferences, priorities and information needs when discussing palliative chemotherapy.

The individualized Goals of Care Discussion Guide: A simple tool to empower patients with metastatic breast cancer.

11622 Background: Individualized treatment planning is a critical part of quality cancer care, but how best to achieve this for patients with metastatic breast cancer (MBC) is unclear. We evaluated the feasibility, acceptability and impact of using a simple and scalable “Individualized Goals of Care Discussion Guide” (IGCDG) to facilitate patient-provider communication at the time of treatment decisions. Methods: We developed the IGCDG based on structured interviews with MBC patients and input from experts in cancer care, decision sciences, psychology and palliative care. We then conducted a single arm feasibility trial among patients with newly diagnosed or progressive MBC. Prior to clinic, patients received the IGCDG, an 8-page MBC informational brochure and 1-page questionnaire regarding treatment preferences, personal goals and priorities for care planning. The completed questionnaire was provided to the oncology team at the patient’s visit. Pre and post assessment included the Distress Thermometer (DT), Patient Satisfaction with Cancer Care Scale and the Control Preferences Scale. Feasibility was defined as: 1) accrual of &gt; 50%, 2) attrition rate &lt; 32%, and 3) &lt; 50% of patients experiencing increased distress following the intervention. Results: Among 60 eligible patients, 42 participated (70% accrual), 40 completed all surveys (2% attrition), and only 7 (18%) reported increased distress. Mean age was 57 (range 31 – 79), 85% were white, 7% black, 5% Hispanic, 66% were college graduates, and 40% reported high baseline distress (DT &gt; 4). Patient priorities for discussion included cancer directed therapy (70%), symptom management (70%), and prognosis/planning ahead (60%). At 2-month follow-up, 53% reported decreased distress compared to baseline. Satisfaction with cancer care was high at baseline and follow-up. Most patients preferred shared decision making (77%), and 79% reported decision roles concordant with preferences. Overall, 72% of participants found the IGCDG helpful, 93% found the questionnaire easy to complete, and 44% felt it improved communication with their doctor (49% unsure). Conclusions: Administration of the Individualized Goals of Care Discussion Guide is feasible and provides patients with MBC an opportunity to define their goals of care and priorities for discussion in clinic. Clinical trial information: NCT03375827.

Physician and Patient Characteristics Associated With More Intensive End-of-Life Care

ContextAlthough patient and physician characteristics are thought to be predictive of discretionary interventions at the end of life (EoL), few studies have data on both parties. ObjectiveTo test the hypothesis that patient preferences and physician attitudes are both independently associated with discretionary interventions at the EoL. MethodsWe report secondary analyses of data collected prospectively from physicians (n = 38) and patients with advanced cancer (n = 265) in the Values and Options in Cancer Care study. Predictor variables were patient attitudes toward EoL care and physician-reported comfort with medical paternalism, assessed indirectly using a modified version of the Control Preference Scale. We explored whether the magnitude of the physician variable was influenced by the inclusion of particular patient treatment-preference variables (i.e., effect modification). Outcomes were a chemotherapy use score (≤14 days before death [scored 2], 15–31 days before death [scored 1], and >31 days [scored 0]) and an emergency department visit/inpatient admission score (two or more admissions in the last 31 days [scored 2], one admission [1], and 0 admissions [0]) in the last month of life. ResultsChemotherapy scores were nearly 0.25 points higher if patients expressed a preference for experimental treatments with unknown benefit at study entry (0.238 points, 95% CI = 0.047–0.429) or reported an unfavorable attitude toward palliative care (0.247 points, 95% CI = 0.047–0.450). A two–standard deviation difference in physician comfort with medical paternalism corresponded to standardized effects of 0.35 (95% CI = 0.03–0.66) for chemotherapy and 0.33 (95% CI = 0.04–0.61) for emergency department visits/inpatient admissions. There was no evidence of effect modification. ConclusionPatient treatment preferences and physician attitudes are independently associated with higher levels of treatment intensity before death. Greater research, clinical, and policy attention to patient treatment preferences and physician comfort with medical paternalism might lead to improvements in care of patients with advanced disease.

Parenting stress in mothers of children with congenital hand or foot differences and its effect on the surgical decision-making for their children.

The main purposes of this study were to assess the levels of parenting stress in the mothers of children with congenital hand or foot differences and to evaluate the effects of this stress on the preferred roles of mothers in surgical decision-making for their children. This study included 89 mothers of children with polydactyly of the hand, polydactyly of the foot, a hypoplastic thumb, or macrodactyly. The parenting stress level was assessed using the Parenting Stress Index-Short Form (PSI-SF). Additionally, the mothers were requested to indicate their preferred and retrospectively perceived levels of involvement in surgical decision-making for their children using the Control Preferences Scale, which is comprised of five levels ranging from fully active to fully passive. The average PSI-SF scores were 73.9, and 15 mothers (17%) had a clinically significant level of stress (PSI-SF ≥ 90). In the mothers of children with polydactyly of the foot, the PSI score was associated with the preferred role in surgical decision-making. The assessment of parenting stress levels in the mothers of children with congenital hand or foot differences can play an important role in the screening of candidates who require psychiatric treatment or support. An evaluation of the PSI in mothers of children with congenital hand or foot differences may aid physicians to modify their style of decision-making based on the preferred role of the mother. Level of evidence: Level IV Therapeutic study.

Prospective evaluation of a new patient decision aid to enhance prostate cancer screening decision-making.

87 Background: We previously developed screening nomograms to predict 15-year risk of all-cause mortality, prostate cancer diagnosis, and prostate cancer mortality, and incorporated them into a graphical patient decision aid (PtDA). Our objective was to prospectively recruit primary care patients interested in shared-decision making regarding prostate specific antigen (PSA) screening and assess the impact of individualized counseling using our new PtDA. Methods: 50 patients from one internal medicine practice were enrolled in a single-arm sequential trial design, with face-to-face clinician counseling and questionnaires. Eligibility criteria included men age 50-69 years old and life expectancy &gt; 10 years. Patients were excluded for a personal history of prostate cancer or PSA screening within the prior year. Participants completed baseline questionnaires regarding prior PSA testing, demographic information, health literacy, and the Control Preferences Scale (CPS). They then received standardized counseling (based on large trial and epidemiologic data) regarding PSA screening, followed by individualized counseling using our new PtDA. Participants then made a screening decision, and completed a post decision questionnaire including a Decisional Conflict Scale. Results: The median age was 60 (IQR 54; 65). 41 (82%) had a prior PSA test, while 9 (18%) had not. 42 (84%) of participants received some education beyond high school, 41 (82%) demonstrated high health literacy, and 45 (90%) desired to have an active role in decision-making based on the CPS. After undergoing counseling, 34 (68%) participants chose to undergo initial or repeat PSA screening, 8 (16%) chose against future screening, and 8 (16%) remained uncertain. 45 (90%) participants found individualized counseling using the PtDA more useful than standardized counseling. Finally, patients reported reduced decisional conflict compared to historical controls (P &lt; 0.001). Conclusions: Our process of standardized counseling followed by individualized counseling using our new PtDA was effective in reducing decisional conflict. The majority of participants found the PtDA more useful for decision making than standardized counseling. Clinical trial information: NCT03387527.