Involvement In Treatment Decisions Research Articles

PHS61 Patient Involvement in Treatment Decisions and Its Perceived Impact on Patient Outcomes in Systemic Lupus Erythematosus (SLE): A Comparison of Physician and Patient Perspectives

PHS61 Patient Involvement in Treatment Decisions and Its Perceived Impact on Patient Outcomes in Systemic Lupus Erythematosus (SLE): A Comparison of Physician and Patient Perspectives

Medicines non-adherence: adult literacy and implications for practice

Functional health literacy is defined as the level at which individuals can obtain, process and understand basic health information (Martin et al, 2009). Government statistics suggest low functional health literacy is an under-recognised and growing problem in UK health care. It is associated with high hospitalisation (Baker et al, 1998) and increased medicines non-adherence (Kalichman et al, 1999). Health professionals are poor at assessing and identifying those at risk because they have yet to acknowledge the prevalence of the problem. Initiatives attempting to address medicines non-adherence promote patient involvement in treatment decisions but remain ineffective if patients cannot read or understand written instructions. To help patients with low functional health literacy practitioners should speak slowly, repeat information, use plain, non-medical language and adopt teach-back techniques. These actions take extra time but are relatively easy to adopt and with a little thought become part of everyday practice.

African American prostate cancer survivors’ treatment decision-making and quality of life

ObjectiveTo examine African-American prostate cancer (PCa) survivors’ involvement in treatment decision-making (TDM), and examine the association between TDM and quality of life (QOL), using secondary data. MethodsAfrican-American PCa survivors (181) were recruited from the North Carolina Central Cancer Registry. Participants completed a cross-sectional survey that asked about their chosen cancer treatment, TDM factors, and PCa-specific QOL (using the Expanded Prostate Cancer Index Composite – EPIC). Multivariate analysis of covariance was conducted to determine the association between TDM and QOL, controlling for confounders. ResultsMost men reported being active (44.2%) or collaborative (38.1%) in TDM, while 14.4% preferred a passive role. Adjusting for marital status, education and treatment, passive patients reported somewhat better QOL compared to active patients in the following QOL domains: urinary summary (p=0.04), urinary function (p=0.01), and urinary incontinence (p=0.03). ConclusionMost African-American PCa survivors preferred to be, and were, actively or collaboratively involved in TDM. However, those who preferred a passive role reported better PCa-specific QOL for the urinary domain compared to others. Practice implicationsIt is important to assess patients’ TDM preference. Patients’ QOL may differ by their TDM role, such that active patients may be more bothered by treatment side effects than other patients.

Parental satisfaction, involvement, and presence after pediatric intensive care unit admission

PurposeTo describe satisfaction, involvement, presence, and preferences of parents following their child's admission to an intensive care unit (ICU). MethodsA survey, administered 1 month after their child's ICU admission, described perceptions of parental satisfaction with their interaction with healthcare providers, their presence during resuscitation, involvement in treatment decision-making, and preferences if events were to be re-enacted. ResultsOne hundred three parents of 91 patients were enrolled; 64 primary parents (70%) completed the survey at 1 month. The mean (SD) satisfaction rating was 87.6 (±14.8) and involvement rating was 70.2 (±34.4) on a scale from 0 (not satisfied/involved) to 100 (completely satisfied/involved). There were no differences in satisfaction (P = .46), involvement (P = .69) and change in preferences (P = .97) between parents who were present and not present. After adjusting for child's baseline illness, receipt of more ICU therapies was associated with worse parental satisfaction (P = .03). Twenty-four (38%) parents reported that if events were repeated, they would have changed their preferences. ConclusionsOverall, parental satisfaction ratings were high, lower in parents of children receiving more ICU therapies, and not associated with presence during resuscitation. These data contrast the American Heart Association's recommendation and suggestion of benefit from parental presence during periods of intensive therapies.

Patient desire to be involved in medication treatment decisions

To identify unmet needs of patients taking medications for chronic health conditions and identify medication-related services that patients with chronic health conditions would desire. Descriptive, exploratory, nonexperimental study. Large midwestern state in spring 2010. 465 patients 45 years or older taking one or more prescriptions for chronic health problems. Cross-sectional survey. Patient-reported usefulness of, satisfaction with, and intention to use medication-related services. Respondents wanted to be highly involved in treatment decisions but found medication information they received to be moderately useful and satisfactory. Medication-related services fell into three groups based on reported intention to use: therapy advice, cost advice, and medication organization. Desire to be involved in treatment decisions was a key factor in predicting reported intention to use therapy advice and cost advice services. The perceived affordability of medications was another important factor in patients' intention to use cost advice and medication organization services. Age, chronic conditions, number of prescription drugs, and the cost of therapy were not important in predicting the intention to use medication-related services in this population. Patient desire to be involved in treatment decisions was a key factor in explaining intention to use medication-related services. Identifying individuals with desire for involvement in treatment decisions may increase medication therapy management (MTM) participation. Strategies to provide personalized MTM services to these individuals should be developed and evaluated.

The involvement of parents in healthcare decisions where adult children are at risk of lacking decision‐making capacity: a qualitative study of treatment decisions in epilepsy

Patients with intellectual disabilities (ID) receive health care by proxy. It is family members and/or paid support staff who must recognise health problems, communicate with clinicians, and report the benefits, if any, of a particular treatment. At the same time international and national statutes protect and promote the right of people with disabilities to access the highest attainable standards of health on the basis of free and informed consent. To consider the role of parent-proxies in the management of epilepsy in adult children with ID who are at risk of lacking capacity to make decisions about their health care we interviewed 21 mothers. These mothers are not pursuing changes in treatment that might improve their son or daughter's epilepsy, nor are they willing to countenance changes in treatment. Clinicians concerned to build and sustain therapeutic alliances with these mothers, our evidence suggests, may well avoid going against their wishes. Our research highlights the interactional contingencies of a hitherto neglected three-way clinical relationship comprising parent-proxy, an adult at risk of lacking decision-making capacity, and a treating clinician. This is a relationship, our findings suggest, where little importance is attached to either patient consent, or involvement in treatment decisions.

Meeting the Decision-Making Preferences of Patients With Breast Cancer in Oncology Consultations: Impact on Decision-Related Outcomes

To investigate how involvement preferences of patients with breast cancer change during the treatment decision-making process and determine the impact of meeting patients' expectations on decision-making outcomes. Participants were 683 patients with breast cancer from 62 oncologists in five different countries recruited to an International Breast Cancer Study Group (IBCSG 33-03) project. Questionnaires elicited patients' pre- and postconsultation preferences for involvement in treatment decision making and whether these were met or not. Decision-related outcomes were assessed postconsultation. Before the consultation, most patients preferred shared or patient-directed treatment decision making. After the consultation, 43% of patients' preferences changed, and most shifted toward patient-directed decisions. The actual postconsultation decision was more likely to be made according to postconsultation rather than preconsultation preferences. Compared with patients who were less involved than they had hoped to be, patients who were as involved as they had hoped to be or were even more involved in decision making had significantly better decision-related outcomes. This was true regardless of whether preference change occurred. Many patients with early-stage breast cancer have treatment options and approach treatment decisions with a desire for decisional control, which may increase after their consultation. Patients' ultimate involvement preferences were more likely to be consistent with the way the decision was actually made, suggesting that patients need to feel concordance between their preference and the actual decision. Patients who directed decisions, even if more than they hoped for, fared better on all decision-related outcomes. These results emphasize the need for oncologists to endorse and facilitate patient participation in treatment decision making.

How well are we meeting haematological cancer survivors’ preferences for involvement in treatment decision making?

ObjectiveThis study aimed to examine preferred and perceived roles of haematological cancer survivors in treatment decision making. MethodsParticipants were within three years of diagnosis and registered with a cancer registry in one Australian state. 732 eligible survivors were invited to complete a paper and pencil survey. Results268 survivors completed the survey (37% response rate). The majority of participants (46%) preferred a passive role in decision making. Thirty percent of participants preferred to make the decision in collaboration with the doctor, whereas 26% preferred an active role in decision making. Just over half of respondents (56%) reported an exact match between their preferred and perceived roles. Where discordance between preferred and perceived roles were identified, survivors were more likely to report having been more passively than actively involved compared to their preferred roles. ConclusionThere is considerable variation in haematological cancer survivors’ preferred and perceived roles in treatment decision making. Practice implicationsThis study highlights the need to improve clinical communication to ensure that patient experiences align with their preferences for involvement in treatment decision making.

VOICE: Developing a new measure of service users' perceptions of inpatient care, using a participatory methodology

Background Service users express dissatisfaction with inpatient care and their concerns revolve around staff interactions, involvement in treatment decisions, the availability of activities and safety. Traditionally, satisfaction with acute care has been assessed using measures designed by clinicians or academics. Aims To develop a patient-reported outcome measure of perceptions of acute care. An innovative participatory methodology was used to involve services users throughout the research process. Method A total of 397 participants were recruited for the study. Focus groups of service users were convened to discuss their experiences and views of acute care. Service user researchers constructed a measure from the qualitative data, which was validated by expert panels of service users and tested for its psychometric properties. Results Views on Inpatient Care (VOICE) is easy to understand and complete and therefore is suitable for use by service users while in hospital. The 19-item measure has good validity and internal and test–retest reliability. Service users who have been compulsorily admitted have significantly worse perceptions of the inpatient environment. Conclusions A participatory methodology has been used to generate a self-report questionnaire measuring service users' perceptions of acute care. VOICE encompasses the issues that service users consider most important and has strong psychometric properties.

Experiences of treatment decision making for young people diagnosed with depressive disorders: a qualitative study in primary care and specialist mental health settings.

BackgroundClinical guidelines advocate for the inclusion of young people experiencing depression as well as their caregivers in making decisions about their treatment. Little is known, however, about the degree to which these groups are involved, and whether they want to be. This study sought to explore the experiences and desires of young people and their caregivers in relation to being involved in treatment decision making for depressive disorders.MethodsSemi-structured interviews were carried out with ten young people and five caregivers from one primary care and one specialist mental health service about their experiences and beliefs about treatment decision making. Interviews were audio taped, transcribed verbatim and analysed using thematic analysis.ResultsExperiences of involvement for clients varied and were influenced by clients themselves, clinicians and service settings. For caregivers, experiences of involvement were more homogenous. Desire for involvement varied across clients, and within clients over time; however, most clients wanted to be involved at least some of the time. Both clients and caregivers identified barriers to involvement.ConclusionsThis study supports clinical guidelines that advocate for young people diagnosed with depressive disorders to be involved in treatment decision making. In order to maximise engagement, involvement in treatment decision making should be offered to all clients. Involvement should be negotiated explicitly and repeatedly, as desire for involvement may change over time. Caregiver involvement should be negotiated on an individual basis; however, all caregivers should be supported with information about mental disorders and treatment options.

Health-Related Quality of Life Profile and Request of Prognostic Information on Survival At the Time of Diagnosis in Patients with High-Risk Myelodysplastic Syndromes

Abstract 2078 Background:Health-related quality of life profile (HRQOL) of patients diagnosed with high-risk myelodysplastic syndromes (MDS) can be compromised already at the time of diagnosis before receiving any kind of treatment. Clinical decision-making is challenging due to the poor prognosis and no data exist on the possible relationships between patient's HRQOL and the request of prognostic information on survival during consultation. Aim:The main objectives were to assess preferences for prognostic information of patients with high-risk MDS and the relationship between such preferences and patient characteristics including HRQOL. To date no such evidence exists in this population.Patients and Methods: Data were gathered through an ongoing international prospective observational study that recruits newly diagnosed patients with MDS. These patients typically have a limited life expectancy. At the time of diagnosis, and during one of the first clinical consultations in which treatment options were discussed, patients completed the European Organization for Research and treatment of Cancer, Quality of life Questionnaire (EORTC QLQ-C30). The EORTC QLQ-C30 is a psychometrically robust generic HRQOL cancer measure assessing both symptoms and functional aspects. Physicians also completed an extensive survey about their patient's preference for involvement in treatment decisions and whether the patient explicitly requested prognostic information for survival. Associations between request for prognostic information, HRQOL socio-demographic characteristics (i.e., living arrangements, age, gender, education) and clinical data including: performance status, comorbidity and disease severity (i.e. IPSS risk category intermediate 2 vs. high risk) were investigated using Fisher's exact test and Wilcoxon-Mann-Whitney test as appropriate. Results:Overall, 184 patients (36% female and 64% male) were analyzed. Mean age of patients was 70 years (range: 31–88). 65% explicitly requested information about expected survival at the time of diagnosis. The symptom profile of patients requesting prognostic information was better than those who did not in 7 out of the 8 symptoms evaluated. The largest clinically meaningful difference was found for fatigue with a mean score of 39 (SD:26) and 52 (SD:28) respectively for those requesting prognostic information versus those who did not. Request for prognostic information was significantly associated with younger age (P=.01) and fewer comorbidities (P=.04). In addition, better physical functioning (P=.009), better role functioning (P=.002) and a lower level of fatigue (P=.002) were also associated with a request for prognostic information during consultation. Additional supportive analysis revealed that patients with a higher overall mean symptom score did not request information about survival (P=.02). Conclusion:These data suggest that the majority of patients with high-risk MDS request prognostic information on survival from their physicians at the time of diagnosis. There is also an indication that patients who are more likely to request such information are those who are in better health condition reporting higher functional abilities and lower symptoms. Disclosures:No relevant conflicts of interest to declare.

Physician-related facilitators and barriers to patient involvement in treatment decision making in early stage breast cancer: perspectives of physicians and patients.

To identify patients' and physicians' perceptions of physician-related verbal and nonverbal facilitators and barriers to patient involvement in treatment decision making (TDM) occurring during clinical encounters for women with early stage breast cancer (ESBC). Eligible women were offered treatment options including surgery and adjuvant therapy. Eligible physicians provided care for women with ESBC in either a teaching hospital or an academic cancer centre. In Phase 1, women were interviewed 1-2 weeks after their initial consultation. In Phase 2, women and their physicians were interviewed separately while watching their own consultation on a digital video disk. All interviews were audiotaped, transcribed and analysed. Forty women with ESBC and six physicians participated. Patients and physicians identified thirteen categories of physician facilitators of women's involvement. Of these, seven categories were frequently identified by women: conveyed a rationale for patient involvement in TDM; explained the risk of cancer recurrence; explained treatment options; enhanced patient understanding of information; gave time for TDM; offered a treatment recommendation; and made women feel comfortable. Physicians described similar information-giving facilitators but less often mentioned other facilitators. Few physician barriers to women's involvement in TDM were identified. Women with ESBC and cancer physicians shared some views of how physicians involve patients in TDM, although there were important differences. Physicians may underestimate the importance that women's place on understanding the rationale for their involvement in TDM and on feeling comfortable during the consultation.

Breast Cancer Patients' Use of Health Information in Decision Making and Coping

Breast cancer patients are some of today's most proactive healthcare consumers. Given how the media has highlighted the many issues involved in breast cancer, the unprecedented rise of consumerism in general, and the rise of healthcare consumerism specifically, a plethora of information on breast cancer has emerged in both scientific and popular media. It is timely and appropriate to consider breast cancer patients' perspectives regarding their search for health-related information and its use for treatment decision making and coping. The present study explores health information-seeking behaviors (passive and active), use of health information, sources of health information, and how such information is or is not used in patients' decision making about their treatment. This study used a secondary analysis of data regarding health information-seeking behaviors and treatment decisions from 2 separate but compatible qualitative data sets based on in-depth interviews with a total of 35 breast cancer survivors. Data were analyzed using thematic analysis. The majority of participating women were active information seekers (n = 26). Of the subsets of women who described their level of involvement in treatment decision making, the largest number (n = 13) reported a shared responsibility for decision making with their physician, and the next largest subset (n = 9) reported making the final decision themselves. These findings provide an enhanced understanding of the preferred source and method of delivery of information given health information-seeking behaviors and decision-making strategies. How health information is delivered in the future given these findings is discussed with specific attention to matching patient preferences with delivery methods to potentially enhance patients' sense of agency with regard to treatment, which has been shown to improve patients' psychosocial outcomes.

147 Involvement in treatment decisions, desire for prognostic information and quality of life in high-risk myelodysplastic syndromes: the physician's perspective

147 Involvement in treatment decisions, desire for prognostic information and quality of life in high-risk myelodysplastic syndromes: the physician's perspective

Patients’ views of nurse prescribing: effects on care, concordance and medicine taking

Skin disease can have a huge impact on quality of life for patients and their families. Nurses have an important role in the delivery of specialist dermatology services, and prescribing enhances the care they provide. The views of dermatology patients about nurse prescribing are unknown. To explore the views of dermatology patients about nurse prescribing, and its impact on medicines management and concordance. Semistructured interviews were undertaken with a consecutive sample of 42 patients with acne, psoriasis or eczema who attended the clinics of seven dermatology specialist nurse prescribers. Primary and secondary care clinics were included to reflect settings in which nurses typically prescribe for patients within specialist dermatology services in England. Interviews addressed the effects of nurse prescribing on care, the patient's medicine regimen, involvement in treatment decisions and concordance, and influences on medicine taking. Patients believed that nurse prescribing improved access to, and efficiency of, dermatology services. Great value was placed on telephone contact with nurses, and local access. Information exchange and involvement in treatment decisions ensured that treatment plans were appropriate and motivated adherence. Nurses' specialist knowledge, interactive and caring consultation style, and continuity of care improved confidence in the nurse and treatment concordance. Nurse prescribing can increase the efficiency of dermatology services. Patients experienced active involvement in decisions about their treatment which in turn contributed to concordance and adherence to treatment regimens. This study has important implications for maximizing resource use and improving access to and quality of care in dermatology specialist services.

Quality of care for individuals with osteoarthritis: a longitudinal study

The objectives of this paper were to investigate quality of care for individuals with osteoarthritis (OA) and to determine if those most in need had the outcome of a total joint replacement (TJR). Key quality indicators were involvement in treatment decisions, appropriate information provision and outcomes of care. A longitudinal study was conducted on individuals newly referred to an orthopaedic specialist at one hospital in North West England. A total of 268 participants were recruited consecutively and followed up at 3, 6 and 12 months. Validated measurement tools such as, a Visual Analogue Scale for pain and the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) assessed pain and physical functioning. Mean scores on the outcome measures were estimated and plotted over time by joint affected and whether or not the participant had a TJR by 12 months. Most participants (82%) felt that they were involved in the decision about their care, although 21% reported that they had not received a diagnosis of OA. Information was not provided on OA, pain management and exercise to 58%, 65% and 57% of participants, respectively. However, 98% of the 109 having a TJR reported receiving information about the procedure. Among the 118 known not to have had a TJR, pain and physical functioning remained relatively stable over time. It appears that patients with the most severe symptoms of pain and physical functioning were selected for TJR. However, care for individuals with OA could be improved by providing standard information on OA in general and pain management and exercise. In particular, effective strategies for the implementation of the research evidence and guidelines are required to improve quality of care.

How much do we spend on prescription medicines? Out-of-pocket costs for patients in Australia and other OECD countries

To determine changes in out-of-pocket expenditure on prescription medicines for Australian patients, and how patient expenditure compares with other Organisation for Economic Co-operation and Development (OECD) countries. We examined out-of-pocket expenditure on prescription medicines by patients in Australia between 1970 and 2007, and between Australia and 15 other OECD countries (Canada, Czech Republic, Denmark, Finland, France, Germany, Japan, Republic of Korea (South Korea), Luxembourg, Poland, Slovak Republic, Spain, Sweden, Switzerland and the United States) in 2005. Spending on publicly subsidised medicines by Australian patients increased from $16 per person in 1971 to $62 in 2007. Patient expenditure on all prescription medicines had risen to $134 per person in 2007. Out-of-pocket expenditure for Australian patients ranked 4th of 14 OCED countries with universal pharmaceutical subsidies. Australian patients pay 28% of national pharmaceutical expenditure; more than patients in South Korea (27%), Slovak Republic (26%), Sweden (22%), France, Luxembourg, Japan and Switzerland (17%), Germany (15%), Czech Republic (11%) and Spain (6%), but less than patients in Finland (36%), Denmark (33%) and Poland (34%). Compared to other OECD countries, Australian out-of-pocket costs are now in the mid to upper range. Further increases have the potential to significantly affect access to care.

Hospital Patients' Perceptions During Treatment and Early Discontinuation of Serotonin Selective Reuptake Inhibitor Antidepressants

Studies have suggested that discontinuation of treatment in depressed patients is associated with their perceptions about their treatment. We surveyed 403 adults treated for major depressive disorder with a selective serotonin reuptake inhibitor (SSRI) 3 months after onset of treatment to assess their interactions with clinicians, reasons they stopped SSRI treatment, and SSRI side effects (SEs). Bothersome SEs, poorer instruction by physicians about SSRI SEs, and self-reported change in depression, sex, marital status, and employment were significantly (P < 0.05) associated with discontinuation. Logistic regression examined the associations between patients' perceptions during treatment planning and SSRI discontinuation. Seventeen percent of patients felt uninvolved in treatment decisions, 9% disagreed with the diagnosis, and 24% subsequently stopped treatment. Elevated risk of discontinuation was found among patients who felt uninvolved in treatment decisions (unadjusted risk ratio [RR], 2.3; 95% confidence interval [CI], 1.2-4.3) and those who disagreed with the diagnosis (RR, 2.0; CI, 0.9-4.4). Patients who both felt uninvolved and disagreed with the diagnosis were 7-fold as likely to discontinue their SSRI (RR, 7.3; CI, 1.5-36.3) compared with those who felt neither uninvolved nor disagreed. Selective serotonin reuptake inhibitor SEs, specific interactions with clinicians, self-assessed outcomes, and sociodemographics did not explain these associations. To improve adherence to medications, clinicians should consider patients' perceptions about their involvement in treatment decisions and agreement with their diagnosis.

Factors which motivate cancer doctors to involve their patients in reaching treatment decisions

Objective Cancer patients increasingly expect to be involved in treatment decision-making. We investigated factors that motivate cancer doctors to involve their patients in treatment decisions. Methods We conducted 22 telephone interviews with doctors treating breast, colorectal, gynaecological, haematological or prostate/urological cancer. Interviews probed doctors for attitudes to shared decision-making (SDM), views of when patient involvement is appropriate and what motivated them to encourage involvement. Interviews were audio-recorded. Themes were identified using framework analysis. Results Cancer doctors described disease, patient, doctor and societal influences on their support for patient involvement in treatment decisions. Treatment recommendations were described as ‘clear-cut’ or ‘grey’. When treatment options were clear-cut, the impact of treatment on patients’ quality of life and self-image and the influence of consumer groups motivated doctors’ support of patient involvement. Conclusion Australian cancer doctors express differing support of patient involvement in decision-making dependent on context, impact and effect that involvement may have. Doctors described meeting patient involvement preferences as a challenge, and needing to identify different characteristics, anxiety levels and levels of understanding to guide them to involve patients in decisions. Practice implications Models of shared decision-making may warrant refinement to better guide doctors to elicit and discuss information and involvement preferences.

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.