Control Preferences Scale Research Articles

Preferences of Japanese rheumatoid arthritis patients in treatment decision-making

Objectives We investigated the decision-making preferences of rheumatoid arthritis (RA) patients using two different scales: the Decision Making Preference Scale (DMPS) and the modified Control Preference Scale (CPS). In addition, we evaluated the factors associated with patients’ preferences for decision-making.Methods A cross-sectional study was performed using a self-administered anonymous questionnaire between October and December 2010 on 406 RA outpatients who consecutively visited 3 hospitals in Japan. The following variables were investigated: (1) DMPS, which is a subscale of the Autonomy Preference Index, composed of six items; patients responded on a 5-point Likert scale. (2) The modified CPS, in which patients were asked to choose one actual and one desired role in decision-making from among three options (passive role, collaborative role, and active role). (3) Sociodemographic data and RA-specific characteristics. Multivariate analyses were used to assess the relationship between patients’ preferences and selected variables.Results The response rate was 58.6 %. There were few patients who wished to make their own decisions when they were hospitalized or illness became worse. However, the majority of patients desired to collaborate with the doctor in making treatment decisions according to the results of modified CPS. The results of modified CPS were significantly associated with the total scores of DMPS. Multivariate analysis demonstrated they younger age and not-housewife were associated with high scores of DMPS.Conclusions Patient preferences in decision-making vary at RA outpatient clinic. Physicians need to assess decision-making preferences on an individual basis.

Role Preferences of People with Multiple Sclerosis: Image-Revised, Computerized Self-Administered Version of the Control Preference Scale

BackgroundThe Control Preference Scale (CPS) is the most frequently used measure of patients’ preferred roles in treatment decisions. We revised the original CPS and developed a new computerized patient self-administered version (eCPS). We used the eCPS to assess role preferences, and their determinants, in Italian and German people with multiple sclerosis (MS).MethodsNew cartoons were produced, based on MS health professional and patient input/feedback and previous findings, and pilot tested on 26 Italian and German MS patients. eCPS acceptability and reliability (weighted kappa statistic, wK) in comparison to the original tool, was determined in 92 MS patients who received both CPS versions in random order.ResultsThe new cartoons were well accepted and easily interpreted by patients, who reported they based their choices mainly on the text and considered the images of secondary importance. eCPS reliability was moderate (wK 0.53, 95% confidence interval [CI] 0.40–0.65) and similar to the test-retest reliability of face-to-face administration assessed in a previous publication (wK 0.65, 95% CI 0.45–0.81). Higher education (odds ratio [OR] 3.74, 95% CI 1.00–14.05) and German nationality (OR 10.30, 95% CI 3.10–34.15) were associated with preference for an active role in the logistic model.ConclusionsThe newly devised eCPS was well received and considered easy to use by MS patients. Reliability was in line with that of the original version. Role preference appears affected by cultural characteristics and (borderline statistical significance) education.

Printed guide improves knowledge of curative, palliative, and hospice care among women with metastatic breast cancer

To the Editor:Self-management is the ability of patients along with familymembers to manage physical, psychosocial, and spiritualconsequences of their health condition(s) [1, 2]. Breastcancer survivors want to self-manage [3–7]; however, lackof knowledge about care options—curative, palliative, andhospice care—is an obstacle [8, 9]. Confusion arises becausecare options are not distinct; palliative care can be providedconcurrently with curative care and is part of hospice care.Understanding care options is important because self-management decisions vary by care option. We report resultsof a pilot study testing a self-management intervention forbreast cancer survivors designed to improve knowledge ofcare options and to facilitate self-management by improvingdesiretoself-manage,communicationskills,andself-efficacy,and reducing anxiety, depression, and uncertainty. Self-management is critical for metastatic breast cancer survivorswho may spend years undergoing arduous treatments,weighing choices, and negotiating transitions. Our interven-tion offers support for these challenges. The intervention,“Managing Cancer Care: A Personal Guide”, consists ofseven printed modules of four pages each: “Managing YourSymptoms,”“ManagingYourCareandSettingGoals,”“CareOptions,”“Talking With Health Care Providers,”“Talkingwith Family and Friends,”“Managing Transitions,” and“Acting Confidently During Uncertainty.” Content was basedon our earlier studies of patients’ self-management [3, 10],with input from oncology staff and patients. Modules includepersonalized worksheets, “conversation starters”, and links toadditional resources. This intervention provides patients withinformation, tools, and empowerment to self-manage withfamily members and clinicians, and we believe that this isthe first study to focus on integrating knowledge of careoptions into self-management.This one-group, pre-post test study was conducted over2 months, and was approved by the Yale University HumanInvestigationCommittee.Eligibleparticipantswererecruitedata breast clinic January–May 2010 and included English-speaking women aged 21+, with metastatic breast cancer, anda prognosis of ≥3 months. Potential participants wereapproachedbytheirchemotherapynurse.Ifinterested,researchstaff explained the study and obtained consent. Following pre-test data collection, participants were oriented to all modules.After 1 month, participants were phoned to assess use of theguide,answerquestions,andschedulepost-testdatacollection,including an interview, 1 month later. Participants were askedto rate each module and the set on usefulness and appearance(1 = least; 10 = most) and to provide feedback.Data collection included demographic and clinical data,and six outcome measures. The Knowledge of Care Optionstest (KOCO), content validated in this study, uses a true–false format to assess knowledge of care options [8]. Anadapted Control Preferences Scale (CPS) was used to mea-sure preferred and actual roles in self-management [11]. TheMedical Communication Competence Scale [12] was usedto measure medical communication. Anxiety and depressionwere assessed with the Hospital Anxiety and DepressionScale [13]. Uncertainty was measured using the Uncertaintyin Illness Scale [14]. The Chronic Disease Self-EfficacyScale (CDSE) [15] was used to measure self-efficacy.Descriptive statistics were calculated for demographic andclinical data. Signed Rank Tests investigated change in out-come measures. Cohen’s effect sizes were calculated withmean differences and standard deviations. The WilcoxonRank Sum test was used to examine differences in changedscores on outcome measures between dichotomized demo-graphic groups. Descriptive statistics were calculated for par-ticipants’ ratings of the guide. Content analysis was used toexamine responses to interview questions.

A multicenter survey of Hispanic caregiver preferences for patient decision control in the United States and Latin America

Background: Understanding family caregivers’ decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient’s decisional role preferences. There are limited studies on family caregivers’ preferences of the patient’s decision control at the end of life among Hispanics. Aims: To identify Hispanic caregivers’ preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Hispanic Latin American and Hispanic American caregivers. Design: We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient’s decision control were evaluated using the Control Preference Scale. Caregivers’ and patients’ sociodemographic variables, patient performance status, and Hispanic American patient acculturation level were also collected. Participants: A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. Results: Caregiver preference of patient’s decision control was passive, shared, and active for 10 (11%), 45 (52%), and 32 (37%) Hispanic American caregivers and 54 (19%), 178 (62%), and 55 (19%) Hispanic Latin American caregivers (p = 0.0023), respectively. Caregiver acculturation level did not affect the preferences of the Hispanic American sample (p = 0.60). Conclusions: Most Hispanic family caregivers preferred the patient to make shared decisions. Hispanic Latin American caregivers more frequently preferred patients to assume a passive decisional role. Acculturation did not influence the preferences of Hispanic American caregivers.

Implementation of Shared Decision Making in Physical Therapy: Observed Level of Involvement and Patient Preference

Shared decision making (SDM) reduces the asymmetrical power between the therapist and the patient. Patient involvement improves patient satisfaction, adherence, and health outcomes and is a prerequisite for good clinical practice. The opportunities for using SDM in physical therapy have been previously considered. The objective of this study was to examine the status of SDM in physical therapy, patients' preferred levels of involvement, and the agreement between therapist perception and patient preferred level of involvement. This was an observational study of real consultations in physical therapy. In total, 237 consultations, undertaken by 13 physical therapists, were audiorecorded, and 210 records were analyzed using the Observing Patient Involvement (OPTION) instrument. Before the consultation, the patient and therapist completed the Control Preference Scale (CPS). Multilevel analysis was used to study the association between individual variables and the level of SDM. Agreement on preferences was calculated using kappa coefficients. The mean OPTION score was 5.2 (SD=6.8), out of a total score of 100. Female therapists achieved a higher OPTION score (b=-0.86, P=0.01). In total, 36.7% of the patients wanted to share decisions, and 36.2% preferred to give their opinion before delegating the decisions. In the majority of cases, therapists believed that they had to decide. The kappa coefficient for agreement was poor at .062 (95% confidence interval=-.018 to .144). Only 13 out of 125 therapists who were personally contacted agreed to participate. Shared decision making was not applied; although patients preferred to share decisions or at least provide their opinion about the treatment, physical therapists did not often recognize this factor. The participating physical therapists were more likely to make decisions in the best interest of their patients; that is, these therapists tended to apply a paternalistic approach rather than involving the patient.

The relation between cancer patient treatment decision‐making roles and quality of life

The objective of this study was to explore relations between patient role preferences during the cancer treatment decision-making process and quality of life (QOL). One-year cancer survivors completed a survey in 2000 as part of a larger survey conducted by the American Cancer Society. The current report was based on survey respondents from Minnesota (response rate, 37.4%). Standardized measures included the Profile of Mood States (scores were converted to have a range, from 0 to 100, with 100 indicating the best mood), the Medical Outcomes Survey 36-item short-form health survey (SF-36) (standardized scores), and the Control Preferences Scale. Patients' actual and preferred role preference distributions and concordance between roles were compared with QOL scores using 2-sample t test methodology. The actual role of survivors (n = 594) in cancer care was 33% active, 50% collaborative, and 17% passive. Their preferred role was 35% active, 53% collaborative, and 13% passive. Overall, 88% of survivors had concordant preferred and actual roles. Survivors who had concordant roles had higher SF-36 Physical Component Scale (PCS) scores (P < .01), higher vitality (P = .01), less fatigue (P < .01), less confusion (P = .01), less anger (P = .046), and better overall mood (P = .01). These results were similar among both women and younger individuals (aged <60 years). Survivors who had active actual roles had higher PCS scores (P < .01), less tension (P = .04), and higher vitality (P = .04) than survivors who were either collaborative or passive. No differences existed in QOL scores according to preferred role. Survivors who experienced discordance between their actual role and their preferred role reported substantial QOL deficits in both physical and emotional domains. These results indicate the need to support patient preferences.

Attitudes Toward Hysterectomy in Women Undergoing Evaluation for Uterovaginal Prolapse

To investigate attitudes toward hysterectomy in women seeking care for pelvic organ prolapse. Two hundred twenty women referred for evaluation of prolapse without evidence of previous hysterectomy were surveyed with the Pelvic Organ Prolapse Distress Inventory; the Control Preferences Scale; and questions regarding patients' perception of the impact of hysterectomy on health, social life, and emotional well-being. Additional items presented hypothetical scenarios. Surveys were distributed in small batches until 100 responses were obtained from patients who met inclusion criteria. One hundred women with an intact uterus responded. Sixty percent indicated they would decline hysterectomy if presented with an equally efficacious alternative to a hysterectomy-based prolapse repair. The doctor's opinion, risk of surgical complications, and risk of malignancy were the most important factors in surgical decision making. Many women with prolapse prefer to retain their uterus at the time of surgery in the absence of a substantial benefit to hysterectomy. These findings should provide further impetus to investigate the efficacy of uterine-sparing procedures to help women make informed decisions regarding prolapse surgery.

Guillain-Barre Syndrome Following Falciparum Malaria:A Rare Association

Objective: Unplanned Caesarean section (CS) constitutes a very stressful event, and is associated with traumatic birth experience. Especially feelings of helplessness, poor information and communication are reported as distressing factors in unplanned Caesarean birth. Addressing these stressors by offering timely patient education and counselling, might be a way to improve sense of control and reduce anxiety. This study compared anxiety and sense of control between women who had a planned caesarean section (PCS) and patients who had an unplanned/secondary caesarean section (SCS). Methods: The sample consisted of 129 women (PCS=66; SCS=63). It was hypothesized that the PCS group benefitted more from patient education than the SCS group leading to lower levels of anxiety and a higher sense of control. Possible confounding factors were controlled for (example, previous child birth experiences and the patient’s locus of control). Anxiety and sense of control were measured by Visual Analogue Scales intraoperatively and one day postoperatively. The Control Preferences Scale and the Multidimensional Health Locus of Control assessed the discrepancy between desired - perceived control and the locus of control, respectively. By means of a checklist it was registered whether subjects had an adequate comprehension of the patient education provided. Multiple regression analyses were used to analyze the data. Results: Intraoperative sense of control during SCS was scored significantly lower as compared to PCS. A higher sense of control was associated with significantly lower anxiety scores in both groups. Furthermore, a more internal locus of control was related to a greater discrepancy between desired and perceived control. Additional patient education in the PCS condition seemed to increase the sense of control. Conclusion: Patient education about the Caesarean procedure might benefit the psychological well-being of the mothers as it lowers anxiety scores indirectly via a heightened sense of control.

Decisional Control Preferences of Hispanic Patients With Advanced Cancer From the United States and Latin America

ContextUnderstanding cancer patients' preferences in decisional roles is important in providing quality care and ensuring patient satisfaction. There is a lack of evidence on decisional control preferences (DCPs) of Hispanic Americans, the fastest growing population in the U.S. ObjectivesThe primary aims of this study were to describe DCPs of Hispanics with advanced cancer in the U.S. (HUSs) and compare the frequency of passive DCPs in this population with that of Hispanics with advanced cancer in Latin America (HLAs). MethodsWe conducted a prospective survey of patients with advanced cancer referred to outpatient palliative care clinics in the U.S., Chile, Argentina, and Guatemala. Information was collected on sociodemographic variables, Karnofsky Performance Scale scores, acculturation (Marin Acculturation Assessment Tool), and DCP (Control Preference Scale). Chi-square tests were used to determine the differences in DCPs between HUSs and HLAs. ResultsA total of 387 patients were surveyed: 91 in the U.S., 100 in Chile, 94 in Guatemala, and 99 in Argentina. The median age of HUSs was 56 years, 59% were female, and the median Karnofsky Performance Scale score was 60; the corresponding values for HLAs were 60 years, 60%, and 80. HLAs used passive DCP strategies significantly more frequently than HUSs did with regard to the involvement of the family (24% vs. 10%; P=0.009) or the physician (35% vs. 16%; P<0.001), even after age and education were controlled for. Eighty-three percent of HUSs and 82% of HLAs preferred family involvement in decision making (P=non-significant). No significant differences were found in DCPs between poorly and highly acculturated HUSs (P=0.91). ConclusionHUSs had more active DCPs than HLAs did. Among HUSs, acculturation did not seem to play a role in DCP determination. Our findings confirm the importance of family participation for both HUSs and HLAs. However, HUSs were less likely to want family members to make decisions on their behalf.

Preferences of Japanese rheumatoid arthritis patients in treatment decision-making

We investigated the decision-making preferences of rheumatoid arthritis (RA) patients using two different scales: the Decision Making Preference Scale (DMPS) and the modified Control Preference Scale (CPS). In addition, we evaluated the factors associated with patients' preferences for decision-making. A cross-sectional study was performed using a self-administered anonymous questionnaire between October and December 2010 on 406 RA outpatients who consecutively visited 3 hospitals in Japan. The following variables were investigated: (1) DMPS, which is a subscale of the Autonomy Preference Index, composed of six items; patients responded on a 5-point Likert scale. (2) The modified CPS, in which patients were asked to choose one actual and one desired role in decision-making from among three options (passive role, collaborative role, and active role). (3) Sociodemographic data and RA-specific characteristics. Multivariate analyses were used to assess the relationship between patients' preferences and selected variables. The response rate was 58.6%. There were few patients who wished to make their own decisions when they were hospitalized or illness became worse. However, the majority of patients desired to collaborate with the doctor in making treatment decisions according to the results of modified CPS. The results of modified CPS were significantly associated with the total scores of DMPS. Multivariate analysis demonstrated they younger age and not-housewife were associated with high scores of DMPS. Patient preferences in decision-making vary at RA outpatient clinic. Physicians need to assess decision-making preferences on an individual basis.

REPLY

Study Type – Needs assessment survey Level of Evidence 2b What's known on the subject? and What does the study add? Although androgen deprivation therapy (ADT) is widely used to treat men with prostate cancer, little is known about the information needs of patients on ADT. We found that patients are generally very satisfied with using ADT and expressed minimal decisional regret with its use up to four years later. For men receiving ADT in the adjuvant setting, their survival estimates with the addition of ADT were quite reasonable when compared to findings in randomized trails. A key area to enhance patient education appears to be side effects, especially around hot flashes and fatigue, which were also the most bothersome treatment sequelae for patients. OBJECTIVE • To evaluate information needs of men receiving androgen deprivation therapy (ADT). PATIENTS AND METHODS • A cross-sectional survey was distributed to English-speaking prostate cancer patients receiving ADT adjuvant to radical therapy or for biochemical relapse. • Three cohorts were recruited based on duration of ADT use: <6 months (cohort 1), 6–18 months (cohort 2) and 18 months to 4 years (cohort 3). • Several validated questionnaires were used, including the Control Preferences Scale (CPS), Satisfaction with Treatment Decision Scale (SWD) and Decisional Regret Scale (DRS). • Patients on adjuvant ADT were asked to estimate their overall survival with and without ADT. RESULTS • Eighty-five men were recruited, of whom 91.8% were receiving a gonadotrophin-releasing hormone agonist, 4.7% were receiving anti-androgen monotherapy and 3.5% were receiving combined androgen blockade. • Patients preferred the following decision-making roles: 23.5% active, 50.6% collaborative, 27.0% passive. • Mean patient satisfaction for ADT use was high at 24.0/30 and decisional regret was low at 7.9/25. • There was a perceived overall survival benefit of 3.9–6.9% at 5 years, 3.6–17.8% at 10 years and 5.7–18.1% at 15 years with the addition of adjuvant ADT. • Hot flushes and fatigue were reported as the most common theoretical adverse effects as well as those experienced most commonly by patients. CONCLUSIONS • Patients on ADT were generally satisfied with their decisions to start ADT and expressed minimal decisional regret up to 4 years later. • A key area to enhance patient education appears to be adverse effects, especially around hot flushes and fatigue.

Patient satisfaction with participation in phase II/III NCCTG clinical trials: Was it worth it? (N0392).

6133 Background: Patient (pt) trial experience may give insight to quality of life (QOL) factors affecting accrual, retention and outcome. While pts are vital to clinical trial success, we know little about their post-trial opinions. This trial examined pt opinion of their trial and treatment decision making (TDM). Methods: Pts enrolled on designated North Central Cancer Treatment Group (NCCTG) phase II or III treatment trials completed the TDM Control Preferences Scale at baseline and the Was It Worth It (WIWI) satisfaction assessment at the ends of cycle 1 and active protocol treatment. The primary endpoint was the proportion of pts reporting worthwhile participation. Fisher Exact tests compared pt opinion across subgroups. Results: As of 01/15/2012, 264 pts were enrolled on 25 protocols and treated at 79 sites. 86% of pts were in phase II studies and 89% had stage IV disease. At the end of cycle 1, pts felt the trial was worthwhile (74%), would do it again (85%), and would recommend it to others (82%). 85% of pts reported undiminished QOL and only 7% rated the trial worse than expected. End of treatment responses were similar. Satisfaction rates varied by tumor site (p=0.04). 11% of pts having tumor response rated the trial as not worthwhile, and 66% of pts with progressive disease rated it worthwhile (see table). Pts with concordant preferred and actual TDM roles rated participation higher than pts with discordant TDM roles (see table). Conclusions: Most pts endorsed their clinical trial experience. Contrary to popular beliefs, treatment outcome did not have an overwhelming impact on pt satisfaction, and was just one of many factors such as TDM role discordance. Assessing pt satisfaction will inform future study design that can potentially improve pt accrual and retention. [Table: see text]

Patients' and Observers' Perceptions of Involvement Differ. Validation Study on Inter-Relating Measures for Shared Decision Making

ObjectivePatient involvement into medical decisions as conceived in the shared decision making method (SDM) is essential in evidence based medicine. However, it is not conclusively evident how best to define, realize and evaluate involvement to enable patients making informed choices. We aimed at investigating the ability of four measures to indicate patient involvement. While use and reporting of these instruments might imply wide overlap regarding the addressed constructs this assumption seems questionable with respect to the diversity of the perspectives from which the assessments are administered.MethodsThe study investigated a nested cohort (N = 79) of a randomized trial evaluating a patient decision aid on immunotherapy for multiple sclerosis. Convergent validities were calculated between observer ratings of videotaped physician-patient consultations (OPTION) and patients' perceptions of the communication (Shared Decision Making Questionnaire, Control Preference Scale & Decisional Conflict Scale).ResultsOPTION reliability was high to excellent. Communication performance was low according to OPTION and high according to the three patient administered measures. No correlations were found between observer and patient judges, neither for means nor for single items. Patient report measures showed some moderate correlations.ConclusionExisting SDM measures do not refer to a single construct. A gold standard is missing to decide whether any of these measures has the potential to indicate patient involvement.Practice ImplicationsPronounced heterogeneity of the underpinning constructs implies difficulties regarding the interpretation of existing evidence on the efficacy of SDM. Consideration of communication theory and basic definitions of SDM would recommend an inter-subjective focus of measurement.Trial RegistrationControlled-Trials.com ISRCTN25267500.

Measuring Decisional Control Preferences in Men Newly Diagnosed with Prostate Cancer

The Control Preferences Scale is widely used in decision research to measure patient preferences for participation in treatment decision making with health care providers. Following anecdotal reports of confusion with the scale the authors conducted an exploratory interview study to examine perceptions of the meaning and applicability of the Control Preferences Scale for men with localized prostate cancer seeking treatment in a multidisciplinary urology clinic. The preliminary data suggest potential validity challenges when the Control Preferences Scale is used in a multidisciplinary prostate cancer care setting, including the clinical context of localized prostate cancer and the meaning of shared decision making.

Information needs of men on androgen deprivation therapy

Study Type - Needs assessment survey Level of Evidence 2b. What's known on the subject? and What does the study add? Although androgen deprivation therapy (ADT) is widely used to treat men with prostate cancer, little is known about the information needs of patients on ADT. We found that patients are generally very satisfied with using ADT and expressed minimal decisional regret with its use up to four years later. For men receiving ADT in the adjuvant setting, their survival estimates with the addition of ADT were quite reasonable when compared to findings in randomized trails. A key area to enhance patient education appears to be side effects, especially around hot flashes and fatigue, which were also the most bothersome treatment sequelae for patients. To evaluate information needs of men receiving androgen deprivation therapy (ADT). A cross-sectional survey was distributed to English-speaking prostate cancer patients receiving ADT adjuvant to radical therapy or for biochemical relapse. Three cohorts were recruited based on duration of ADT use: <6 months (cohort 1), 6-18 months (cohort 2) and 18 months to 4 years (cohort 3). Several validated questionnaires were used, including the Control Preferences Scale (CPS), Satisfaction with Treatment Decision Scale (SWD) and Decisional Regret Scale (DRS). Patients on adjuvant ADT were asked to estimate their overall survival with and without ADT. Eighty-five men were recruited, of whom 91.8% were receiving a gonadotrophin-releasing hormone agonist, 4.7% were receiving anti-androgen monotherapy and 3.5% were receiving combined androgen blockade. Patients preferred the following decision-making roles: 23.5% active, 50.6% collaborative, 27.0% passive. Mean patient satisfaction for ADT use was high at 24.0/30 and decisional regret was low at 7.9/25. There was a perceived overall survival benefit of 3.9-6.9% at 5 years, 3.6-17.8% at 10 years and 5.7-18.1% at 15 years with the addition of adjuvant ADT. Hot flushes and fatigue were reported as the most common theoretical adverse effects as well as those experienced most commonly by patients. Patients on ADT were generally satisfied with their decisions to start ADT and expressed minimal decisional regret up to 4 years later. A key area to enhance patient education appears to be adverse effects, especially around hot flushes and fatigue.

Patients’ Preferred and Retrospectively Perceived Levels of Involvement During Decision-Making Regarding Carpal Tunnel Release

Patient-centered care requires physicians to respond to patients' preferences, including their preferences regarding treatment decision-making. The authors surveyed patients to determine their preoperative preferences and their retrospectively perceived levels of involvement in decision-making for carpal tunnel release, and they attempted to identify factors that affect patient preferences and experiences. Seventy-eight patients who underwent carpal tunnel release for carpal tunnel syndrome were requested to indicate their preferred level of involvement preoperatively and to assess their actual levels of involvement postoperatively, using a Control Preferences Scale containing five levels that range from fully active to fully passive. Clinical and demographic factors that potentially affected patients' preoperative preferences and postoperative assessments of levels of involvement were analyzed. Fifty-nine patients (76%) indicated preoperatively that they preferred shared decision-making, and sixty-six (85%) thought postoperatively that they had experienced this type of decision-making. The correlation between preoperative and postoperative Control Preferences Scale assessments was significant (r = 0.525, p &lt; 0.001). A history of a surgical procedure was independently associated with a preoperative preference for a more active role (odds ratio = 4.2), and patients with a caregiver (odds ratio = 4.0) or private insurance (odds ratio = 2.6) were more likely to experience an active role. Patients who preferred a collaborative role had lower scores on the Disabilities of the Arm, Shoulder and Hand questionnaire than those who preferred a fully active role (p = 0.002) or a fully passive role (p = 0.009). The majority of patients with carpal tunnel syndrome preferred to share surgical decision-making with the surgeon, and those who preferred a collaborative role had less severe symptoms than those who preferred a fully active or a fully passive role. A history of a surgical procedure, having a caregiver, and having private insurance were associated with a more active role. This information may assist the establishment of patient-centered consultation in patients with carpal tunnel syndrome.

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

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

Family Understanding of Seriously-ill Patient Preferences for Family Involvement in Healthcare Decision Making

Surrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf. To evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making. Cross-sectional survey. Twenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total). Patients and family members completed the Decision Control Preferences (DCP) scale regarding patient preferences for family involvement in health care decisions using conscious and unconscious scenarios. Patient and family member agreement was 56% (29/52 dyads) for the conscious scenario (kappa 0.29) and 46% (24/52 dyads) for the unconscious scenario (kappa 0.15). Twenty-four family members identified the patient's preference as independent in the unconscious scenario, but six of these patients actually preferred shared decision making and six preferred reliant decision making. In the conscious scenario, preference for independent decision making was associated with higher odds of patient-family agreement (AOR 5.28, 1.07-26.06). In the unconscious scenario, cancer patients had a higher odds of agreement than ALS patients (AOR 3.86; 95% CI 1.02-14.54). Family members were often unable to correctly identify patient preferences for family involvement in end-of-life decision making, especially when patients desired that decisions be made using the best-interest standard. Clinicians and family members should consider explicitly eliciting patient preferences for family involvement in decision making. Additional research is still needed to identify interventions to improve family member understanding of patient preferences regarding the decision-making process itself.

Investigating Preferences and Factors Associated with Involvement In Treatment Decision-Making In Newly Diagnosed Patients with High-Risk Myelodysplastic Syndromes: An International Multicenter Study

AbstractAbstract 4953 Background:Shared decision-making between patients and physicians is broadly advocated in medicine, however little research is available to understand whether this approach would be desirable to all patients regardless of disease type and severity or individual patient characteristics. While clinical decision-making in high-risk myelodysplastic syndromes (MDS) is critical for a number of reasons including: associated comorbidity, symptom burden, and limited life expectancy, no evidence-base data currently exist on patients' preferences. Aim:The objective of this study is twofold: 1) to investigate to what extent high-risk MDS patients prefer to be involved in treatment decision making during consultation just after diagnosis; 2) to identify possible clinical, socio-demographic and patient-reported health status factors associated with patients' preferences for involvement in treatment decisions. Patients and Methods:Data were gathered through an ongoing international prospective observational study involving 15 countries that recruits newly diagnosed patients with intermediate-2 or high-risk IPSS score. All patients were classified according to the WHO histology classification. During the first encounter with their treating physicians, discussing treatment options just after diagnosis, patients were administered a previously internationally validated “control preference scale”. This scale broadly categorizes patients into one of three roles depending on the extent of their preferred involvement in treatment decision-making: “active” (where the patient themselves prefer to decide on which would be the most appropriate treatment option for themselves); “collaborative/shared” (where the patient and the doctor jointly decided on the most appropriate treatment option); “passive” (where the patient prefer to leave decision on the most appropriate treatment option to the doctor). Associations with the following variables were investigated: performance status, comorbidity (“Hematopoietic Cell Transplantation”-“Comorbidity index”), living arrangements, age, gender, education, cultural group, IPSS risk category, evolution from lower IPSS risk scores and patient-reported symptoms (using symptom scales of the EORTC QLQ-C30). Descriptive statistics were used and Mann-Whitney U-test, Kruskall-Wallis test and Fisher's exact test were used as appropriate to test statistical significance of performed comparisons. Results:Study population included overall 121 patients (38% female and 62% male). Mean age of patients was 69 years (min:31.3 max: 87.9) and 80% were diagnosed with IPSS int-2 risk score and 20% with IPSS high risk score. Twenty-six percent evolved from lower IPSS risk scores, while 74% were newly diagnosed with higher-risk. Forty-nine percent favored a passive while only 13% preferred an active role in treatment decision-making; the remaining 38% favored a collaborative/shared decision-making approach. Investigation of factors possibly related to preferred roles, found that passive role was significantly associated with lower education levels (P=.04). Among lower educated patients, 62.5% preferred a passive role compared with only 5% preferring an active role. When investigating relationships with patient-reported symptoms, a general trend for patients preferring a passive role, showing worse outcomes, was also evident. Higher symptom mean scores were found for passive vs. active role groups, being respectively: 46 (sd.26.6) vs. 37 (sd.29.9) for fatigue; 20 (sd.31.8) vs. 2 (sd.8.6) for constipation; 34 (sd.33) vs. 24 (sd.29.5) for dyspnea. Exploratory analysis showed that overall mean symptom score was statistically significant worse in patients preferring a passive role vs. those preferring an active role (P=.01). While other trends of associations were noted, these were not statistically significant. Conclusion:This is the first evidence suggesting that a consistent percentage of high-risk MDS patients prefer a passive role when discussing treatment options with their treating physicians at the time of diagnosis. There is also an indication that these patients are those with lower education levels and presenting with a higher symptom burden. Results need to be confirmed in a larger sample size. Disclosures:No relevant conflicts of interest to declare.

An Empirical Study of Surrogates' Preferred Level of Control over Value-laden Life Support Decisions in Intensive Care Units

Despite ongoing ethical debate concerning who should control decisions to discontinue life support for incapacitated, critically ill patients, the perspectives of surrogate decision makers are poorly understood. To determine (1) what degree of decisional authority surrogates prefer for value-sensitive life support decisions compared with more technical biomedical decisions, and (2) what predicts surrogates' preferences for more control over life support decisions. This was a prospective study of 230 surrogate decision makers for incapacitated, mechanically ventilated patients at high risk of death. Surrogates reported their preferred degree of decisional authority using the Degner Control Preferences Scale for two types of decisions: a value-sensitive decision about whether to discontinue life support and a decision regarding which antibiotic to prescribe for an infection. The majority of surrogates (55%, 127/230; 95% confidence interval, 49-62%) preferred to have final control over the value-sensitive life support decision; 40% (91/230) wished to share control equally with the physician; 5% (12/230) of surrogates wanted the physician to make the decision. Surrogates preferred significantly more control over the value-sensitive life support decision compared with the technical decision about choice of antibiotics (P < 0.0001). Factors independently associated with surrogates' preference for more control over the life support decision were: less trust in the intensive care unit physician, male sex, and non-Catholic religious affiliation. Surrogates vary in their desire for decisional authority for value-sensitive life support decisions, but prefer substantially more authority for this type of decision compared with technical, medical judgments. Low trust in physicians is associated with surrogates preferring more control of life support decisions.