The role of patient-centered communication and shared decision-making in treatment knowledge and decision preparedness among people with urologic cancers: Findings from the Cancer Experience Registry.

Characterizing Hodgkin lymphoma survivors' shared decision making across the care continuum

The objective of this review is to identify and synthesize the best available evidence related to the meaningfulness of internal and external influences on shared-decision making for adult patients and health care providers in all health care settings.The specific questions to be answered are: BACKGROUND: Patient-centered care is emphasized in today's healthcare arena. This emphasis is seen in the works of the International Alliance of Patients' Organizations (IAOP) who describe patient-centered healthcare as care that is aimed at addressing the needs and preferences of patients. The IAOP presents five principles which are foundational to the achievement of patient-centered healthcare: respect, choice, policy, access and support, as well as information. These five principles are further described as:Within the description of these five principles the idea of shared decision-making is clearly evident.The concept of shared decision-making began to appear in the literature in the 1990s. It is defined as a "process jointly shared by patients and their health care provider. It aims at helping patients play an active role in decisions concerning their health, which is the ultimate goal of patient-centered care." The details of the shared decision-making process are complex and consist of a series of steps including:Three overall representative decision-making models are noted in contemporary literature. These three models include: paternalistic, informed decision-making, and shared decision-making. The paternalistic model is an autocratic style of decision-making where the healthcare provider carries out the care from the perspective of knowing what is best for the patient and therefore makes all decisions. The informed decision-making model takes place as the information needed to make decisions is conveyed to the patient and the patient makes the decisions without the healthcare provider involvement. Finally, the shared decision-making model is representative of a sharing and a negotiation towards treatment decisions. Thus, these models represent a range with patient non-participation at one end of the continuum to informed decision making or a high level of patient power at the other end. Several shared decision-making models focus on the process of shared decision-making previously noted. A discussion of several process models follows below.Charles et al. depicts a process model of shared decision-making that identifies key characteristics that must be in evidence. The patient shares in the responsibility with the healthcare provider in this model. The key characteristics included:This model illustrates that there must be at least two individuals participating, however, family and friends may be involved in a variety of roles such as the collector of information, the interpreter of this information, coach, advisor, negotiator, and caretaker. This model also depicts the need to take steps to participate in the shared decision-making process. To take steps means that there is an agreement between and among all involved that shared decision-making is necessary and preferred. Research about patient preferences, however, offers divergent views. The link between patient preferences for shared decision-making and the actuality of shared decision-making in practice is not strong. Research concerning patients and patient preferences on shared decision-making points to variations depending on age, education, socio-economic status, culture, and diagnosis. Healthcare providers may also hold preferences for shared decision-making; however, research in this area is not as comprehensive as is patient focused research. Elwyn et al. explored the views of general practice providers on involving patients in decisions. Both positive and negative views were identified ranging from receptive, noting potential benefits, to concern for the unrealistic nature of participation and sharing in the decision-making process. An example of this potential difficulty, from a healthcare provider perspective, is identifying the potential conflict that may develop when a patient's preference is different from clinical practice guidelines. This is further exemplified in healthcare encounters when a situation may not yield itself to a clear answer but rather lies in a grey area. These situations are challenging for healthcare providers.The notion of information sharing as a prerequisite to shared decision-making offers insight into another process. The healthcare provider must provide the patient the information that they need to know and understand in order to even consider and participate in the shared decision-making process. This information may include the disease, potential treatments, consequences of those treatments, and any alternatives, which may include the decision to do nothing. Without knowing this information the patient will not be able to participate in the shared decision-making process. The complexity of this step is realized if one considers what the healthcare provider needs to know in order to first assess what the patient knows and does not know, the readiness of the patient to participate in this educational process and learn the information, as well as, the individual learning styles of the patient taking into consideration the patient's ideas, values, beliefs, education, culture, literacy, and age. Depending on the results of this assessment the health care provider then must communicate the information to the patient. This is also a complex process that must take into consideration the relationship, comfort level, and trust between the healthcare provider and the patient.Finally, the treatment decision is reached between both the healthcare provider and the patient. Charles et al. portrays shared decision-making as a process with the end product, the shared decision, as the outcome. This outcome may be a decision as to the agreement of a treatment decision, no agreement reached as to a treatment decision, and disagreement as to a treatment decision. Negotiation is a part of the process as the "test of a shared decision (as distinct from the decision-making process) is if both parties agree on the treatment option."Towle and Godolphin developed a process model that further exemplifies the role of the healthcare provider and the patient in the shared decision-making process as mutual partners with mutual responsibilities. The capacity to engage in this shared decision-making rests, therefore, on competencies including knowledge, skills, and abilities for both the healthcare provider and the patient. This mutual partnership and the corresponding competencies are presented for both the healthcare provider and the patient in this model. The competencies noted for the healthcare provider for shared decision making include:Patient competencies include:This model illustrates the shared decision-making process with emphasis on the role of the healthcare provider and the patient very similar to the prior model. This model, however, gives greater emphasis to the process of the co-participation of the healthcare provider and the patient. The co-participation depicts a mutual partnership with mutual responsibilities that can be seen as "reciprocal relationships of dialogue." For this to take place the relationship between and among the participants of the shared decision-making process is important along with other internal and external influences such as communication, trust, mutual respect, honesty, time, continuity, and commitment. Cultural, social, and age group differences; evidence; and team and family are considered within this model.Elwyn et al. presents yet another model that depicts the shared decision-making process; however, this model offers a view where the healthcare provider holds greater responsibility in this process. In this particular model the process focuses on the healthcare provider and the essential skills needed to engage the patient in shard decisions. The competencies outlined in this model include:The healthcare provider must demonstrate knowledge, competencies, and skills as a communicator. The skills for communication competency require the healthcare provider to be able to elicit the patient's thoughts and input regarding treatment management throughout the consultation. The healthcare provider must also demonstrate competencies in assessment skills beyond physical assessment that includes the ability to assess the patient's perceptions and readiness to participate. In addition, the healthcare provider must be able to assess the patient's readiness to learn the information that the patient needs to know in order to fully engage in the shared decision-making process, assess what the patient already knows, what the patient does not know, and whether or not the information that the patient knows is accurate. Once this assessment is completed the healthcare provider then must draw on his/her knowledge, competencies, and skills necessary to teach the patient what the patient needs to know to be informed. This facilitates the notion of the tailor-made information noted previously. The healthcare provider also requires competencies in how to check and evaluate the entire process to ensure that the patient does understand and accept with comfort not only the plan being negotiated but the entire process of sharing in decision-making. In addition to the above, there are further competencies such as competence in working with groups and teams, competencies in terms of cultural knowledge, competencies with regard to negotiation skills, as well as, competencies when faced with ethical challenges.Shared decision-making has been associated with autonomy, empowerment, and effectiveness and efficiency. Both patients and health care providers have noted improvement in relationships and improved interactions when shared decision-making is in evidence. Along with this improved relationship and interaction enhanced complianc

Doctor-Patient Communication about Treatment Decisions in Multiple Myeloma: Findings from the Cancer Experience Registry

A Patient-Centered Communication Tool for Older Patients with Acute Myeloid Leukemia, Their Caregivers, and Oncologists: A Single Arm Pilot Study

Cancer patients commonly suffer from loneliness, poor spiritual status, and fear of death; however, these evaluations are rarely revealed in urological cancer patients. Thus, this study aimed to assess the loneliness, spiritual well-being, and death perception, as well as their risk factors in urological cancer patients. A total of 324 urological (including renal, bladder, and prostate) cancer patients and 100 healthy controls were included. The University of California and Los Angeles loneliness scale (UCLA-LS), functional assessment of chronic illness therapy-spiritual well-being (FACIT-Sp), and death attitude profile-revised (DAP-R) scores were evaluated. The results showed that the UCLA-LS score was higher, but the FACIT-Sp score was lower in urological cancer patients than in healthy controls. According to the DAP-R score, fear of death, death avoidance, and approaching death acceptance were elevated, but neutral acceptance was lower in urological cancer patients than in healthy controls. Among urological cancer patients, the UCLA-LS score was highest but the FACIT-Sp score was lowest in bladder cancer patients; regarding the DAP-R score, fear of death and death avoidance were highest, but approaching death acceptance was lowest in bladder cancer patients. Interestingly, single/divorced/widowed status, bladder cancer diagnosis, higher pathological grade, surgery, systemic treatment, and local treatment were independent factors for higher UCLA-LS score or lower FACIT-Sp score. In conclusion, urological cancer (especially bladder cancer) patients bear increased loneliness and reduced spiritual well-being; they also carry higher fear of death, death avoidance, and approaching death acceptance but lower neutral acceptance of death.

Treatment Decision Making and Treatment Satisfaction Among Individuals Living with Chronic Myeloid Leukemia

Shared decision-making (SDM) is a key component of patient-centered healthcare. SDM is particularly pertinent in the relapsed and/or refractory multiple myeloma (RRMM) setting, in which numerous treatment options can present challenges for identifying optimal care. However, few studies have assessed the extent and relevance of SDM and patient-centered communication (PCC) in RRMM. To describe treatment decision-making patterns between physicians and patients in the RRMM setting, we conducted online surveys of patients and physicians in the USA to compare their perspectives on the process of treatment decision-making. We analyzed the surveys descriptively. Two hundred hematologists/oncologists and 200 patients with RRMM receiving second-line (n = 89), third-line (n = 65), and fourth-line (n = 46) therapy participated. Top treatment goals for physicians and patients included extending overall survival (among 76% and 83% of physicians and patients, respectively) and progression-free survival (among 54% and 77% of physicians and patients, respectively), regardless of the number of prior relapses. Thirty percent of physicians believed patients preferred a shared approach to treatment decision-making, while 40% of patients reported most often preferring a shared role in treatment decision-making. One-fourth of patients most often preferred physicians to make the final treatment decision after seriously considering their opinion. Thirty-two percent of physicians and 16% of patients recalled ≥3 treatment options presented at first relapse. Efficacy was a primary treatment goal for patients and physicians. Discrepancies in their perceptions during RRMM treatment decision-making exist, indicating that communication tools are needed to facilitate SDM and PCC.

Variances in patient reported experiences with shared decision-making by biological sex in patients with diffuse large B-cell lymphoma (DLBCL) – an analysis from the lymphoma coalition 2024 global patient survey on lymphomas and CLL

Communication That Enables Shared Decision-Making in Myelodysplastic Syndrome Is Suboptimal: Early Results from the Cancer Experience Registry

420 Background: To align BC treatment with patient goals, it is vital that healthcare providers (HCPs) engage their patients (pts) in SDM for treatment planning. We assessed alignment and discordances on aspects of SDM among BC pts and their urology and oncology teams. Methods: Between 05/2020 and 06/2020, surveys were administered to 53 pts with BC (48% female, mean age 68 years) and 23 HCPs, as part of in-clinic and virtual collaborative patient education sessions across 5 US-based practices. Surveys were designed to assess perceptions, preferences, and experiences with regard to SDM during BC care. Results: Survey findings indicated key alignments and discordances in pts’ reported experience and HCPs’ perceptions of the use of SDM in BC care. HCPs and pts identified the same top 2 patient goals for BC care: 1) preventing progression/recurrence (61% pts, 48% HCPs) and 2) maintaining quality of life (35% pts, 78% HCPs). When asked to identify patient’s top challenges for pts in BC care, both pts and HCPs indicated post-treatment aspects as the top challenge, though pts indicated managing side effects/serious worry about side effects from treatment as the top challenge (22%); whereas, HCPs were split evenly between managing side effects from treatment (26%) and managing life changes as a result of urinary diversion (26%). HCPs overestimated the effect that fatigue and worry had on pts capacity for SDM: only 9% of pts indicated worry or fatigue as a barrier to SDM, but 65% of HCPs indicated this as a likely barrier. Furthermore, the patient experience of SDM differed from HCP perception of SDM (Table); for some aspects of SDM, such as explaining different treatment options, explaining pros/cons of treatment options, and overall involvement in treatment decisions, fewer HCPs indicated that these aspects of SDM always or usually occurred as compared to pts. Conclusions: These findings reveal important alignments and discordances between pts and HCPs with regard to BC care and SDM, which may inform future bladder cancer and SDM initiatives. [Table: see text]

Predictors of Patient-Reported Communication with Their Health Care Team about New Treatment Options for Chronic Lymphocytic Leukemia

OBJECTIVE: Shared decision making is advocated as a way of involving patients in medical decisions, but it can be achieved only when both patients and physicians commit to sharing decisions. This study explored psychiatrists' views of shared decision making in schizophrenia treatment. METHOD: A structured questionnaire was given to 352 psychiatrists at the 2007 congress of the German Society of Psychiatry, Psychotherapy, and Nervous Diseases to determine their self-reported decision-making styles. Approximately half of the psychiatrists (N=181) were then asked to rate how 19 patient characteristics would influence whether they would share in decision making, and the other half (N=171) were asked whether 19 decision topics would be suitable for shared decision making. RESULTS: Of the 352 participating psychiatrists, 51% reported regularly applying shared decision making, but decision-making styles were tailored to individual patients and decision topics. Shared decision making was seen as useful for well-informed and compliant patients and for those who currently dislike their antipsychotic, but it was not seen as useful in cases of potentially reduced decisional capacity. Psychosocial matters (for example, work therapy, future housing, and psychotherapy) were considered more suitable for shared decision making than were medical and legal decisions (for example, hospitalization, prescription of antipsychotics, and diagnostic procedures). CONCLUSIONS: It should be clarified whether and how patients with schizophrenia can be empowered and educated so they can share important treatment decisions.

Transforming Chronic Lymphocytic Leukemia Care with Real-World Patient and Provider Perspectives: Results from Two Collaborative Patient-Provider Quality Improvement Programs

Patient-centered communication together with evidence-based practice is seen as the underlying pillars of shared decision making (SDM). However, the application of patient-centered communication in physiotherapy practice has not yet been studied from an observer-based point of view. The purpose was to determine to what extent physiotherapists use patient-centered communication in the first physiotherapy consultations of people with shoulder problems, and to what extent patient-centered communication is related to the level of SDM. In this secondary analysis, 100 audio-recorded initial physiotherapy consultations with people with shoulder problems, obtained through convenience sampling, were analyzed for the level of patient-centered communication using the Four Habit Coding Scheme (4HCS) (0-100, higher 4HCS scores indicate higher level of patient-centered communication). The relation between the level of patient-centered communication and the SDM was analysed in multiple steps. A total of 100 initial physical therapy consultations of 41 participating physical therapists were included. The mean 4HCS score was 45(range 18-90). The correlation between the 4HCS and the OPTION-5 scores was 0.610(CI95 % 0.470 - 0.720). The four categories in the relation between patient-centered communication and SDM show that the most consultations are in the group of low patient-centered communication and low SDM and that there are only two consultations in the low patient-centered communication and high SDM. Our results show that there is room for improvement in the application of patient-centered communication in physiotherapy practice although physiotherapists do apply patient-centered communication more than SDM. Patient-centered communication does not guarantee the application of SDM, although a higher level of SDM does indicate a higher degree of patient-centered communication. Practice implications This study offers clinical guidance on how to improve the integration of patient's perspective, values, and preferences in the decision making.

At the interface of medicine and dentistry: shared decision-making using decision aids and clinical decision support tools