Patient Involvement In Treatment Decisions Research Articles

"Critical issues detrimental to a cooperative cancer treatment:  Perspectives of Radiation oncologists and Raditional Health Practitioners in KwaZulu-Natal, South Africa"

Introduction / Background: The mortality and morbidity as a result of cancer is expected to escalate in the coming decades due to the increase in cancer occurences globally. The most common treatment for cancer provided by the Radiation Oncologists (ROs) is radiation therapy. In developing countries where there are constrained radiotherapy resources, patients consult concurrently with Traditional Health Practitioners (THPs) and Radiation Oncologists (ROs) for cure or relief from the cancer. Consequently, there are interruptions of treatment and patients present with advanced cancer. Studies have shown that cooperative practice in cancer treatment is crucial for continuity of care. However, there is lack of information on critical issues that can be detrimental to a cooperative practice in cancer treatment. The current study explored those issues as perceived by THPs and ROs in KwaZulu-Natal (KZN), South Africa.
 Methods: A qualitative case study approach was utilised in this study. This is part of a bigger study conducted to develop a framework for a cooperative practice cancer treatment between THPs and ROs in KZN. Five focus group interviews were conducted with 28 THPs who were selected using snowball. Those were the THPs from eight of 11 districts in KZN who were practising and involved in the treatment of cancer. Furthermore, individual interviews were conducted to collect data from four purposively selected ROs employed at public oncology hospitals. Using a framework analysis, data were analysed to identify themes.
 Results: The THPs were classified as traditional herbalists, diviners and spiritual healers who were involved in the treatment of patients with cancer. On the other hand, four of seven ROs employed at public hospitals, agreed to participate in the study. With regards to issues detrimental to a cooperative cancer treatment, the emergent themes included lack of relationship, team work, respect and trust, communication, patient involvement in treatment decision making, and delays in patient referrals. 
 Discussion: Despite the ROs’ concern about the role of THPs in cancer treatment, both parties are willing to work together. The issues detrimental to a cooperative practice in cancer treatment between THPs and ROs, need to be rectified. The THPs indicated the desire to build a relationship with the ROs. They felt this would allow them to be able to refer patients to the ROs to confirm a diagnosis before commencing treatment, evaluate their treatments, and provide further treatment if their initial treatment was unsuccessful.
 
 Conclusion: Based on the findings of the study, it can be concluded that the THPs and ROs should operate as parallel systems but have a working relationship in order to facilitate the movement of cancer patients between them and ensure that there is continuity of care.
 Furthermore, cooperation can be encouraged through formal government policies, and that a representative for THPs is needed in all government structures associated with cancer treatment.
 

Current level of shared decision-making in hepatobiliary surgical oncology (SAPACHA)

BackgroundShared decision-making (SDM) may improve patient autonomy and health outcomes. This study assessed the level of SDM at both ends of the spectrum of hepatobiliary surgery to identify needs and opportunities for improvement. MethodsA mixed-methods study was performed. Consultations regarding surgery for perihilar cholangiocarcinoma (pCCA) or hepatocellular adenoma (HCA) were prospectively included between September 2020 and December 2022. The level of patient involvement in treatment decision-making was assessed objectively by analysis of audio-recorded consultations using the OPTION-5 instrument. The perceived level of SDM was appreciated by patients (SDM-Q-9) and surgeons (SDM-Q-doc) through questionnaires. Higher scores indicated higher levels of SDM. Outcomes were compared between patient groups and two focus groups were held. ResultsTen pCCA- and nine HCA-patients were included in the quantitative part of the study. Median OPTION-5, SDM-Q-9 and SDM-Q-doc scores were 35% (IQR: 25–45%), 86% (IQR: 76–96%), and 73% (IQR: 71–78%), respectively. SDM-Q-9 scores among HCA-patients (79% [IQR: 71–82%]) were significantly lower than in pCCA-patients (96% [IQR: 93–100%], p < 0.001). In focus groups, patients reported a lack of information, support, and expressed positive attitudes towards decision support tools (DSTs). ConclusionPatient involvement and information provision among HPB-surgical patients show room for improvement, particularly for HCA-patients. DSTs may be helpful for this purpose.

Involvement in treatment decision-making and self-reported efficacy among patients with advanced colorectal cancer: a nationwide multi-center cross-sectional study.

This cross-sectional study evaluated the involvement of patients with advanced colorectal cancer (CRC) in treatment decision-making, assessed the treatment efficacy according to their self-reports, and investigated the influencing factors. Patients with advanced CRC were recruited from 19 hospitals from March 2020 to March 2021 by a multi-stage multi-level sampling method. A self-designed questionnaire was used to collect demographic and clinical characteristics, involvement of CRC patients in treatment decision-making, treatment methods, and self-reported efficacy. Univariate and unordered multinomial logistic regression analyses were used to evaluate the factors affecting the involvement in treatment decision-making and self-reported efficacy. We enrolled 4533 patients with advanced CRC. The average age at diagnosis was 58.7 ± 11.8 years. For the treatment method, 32.4% of patients received surgery combined with chemotherapy, 13.1% of patients underwent surgery combined with chemotherapy and targeted therapy, and 9.7% of patients were treated with surgery alone. For treatment decision-making, 7.0% of patients were solely responsible for decision-making, 47.0% of patients shared treatment decision-making with family members, 19.0% of patients had family members solely responsible for treatment decision-making, and 27.0% of patients had their physicians solely responsible for treatment decision-making. Gender, age, education level, family income, marital status, treatment cost, hospital type, and treatment method were significantly associated with the involvement of patients in treatment decision-making. A total of 3824 patients submitted self-reported efficacy evaluations during treatment. The percentage of patients with good self-reported efficacy was 76.5% (for patients treated for the first time), 61.7% (for patients treated for the second time), and 43.2% (for patients treated after recurrence and metastasis), respectively. Occupation, education level, average annual family income, place of residence, time since cancer diagnosis, hospital type, clinical stage, targeted therapy, and involvement in treatment decision-making were the main influencing factors of self-reported efficacy of treatment. Conclusively, CRC patients are not highly dominant in treatment decision-making and more likely to make treatment decisions with their family and doctors. Timely and effective communication between doctors and patients can bolster patient involvement in treatment decision-making.

The impact of COVID-19 on patient involvement in treatment decisions in the US and EU4+UK.

e18758 Background: The COVID-19 pandemic has impacted many facets of the healthcare landscape. This study aims to assess the effect of COVID-19 on the evolution of patient involvement in cancer treatment decisions at different time points throughout the pandemic. Methods: The Ipsos COVID-19 Evolution study was run online from April to June 2022 with a total of 353 oncologists responding in the US and EU4+UK (US: 100, EU4+UK: 253). Each physician completed a demographic form and a questionnaire. The demographic form gathered information regarding specialty, practice type and volume of patients treated with anti-cancer drugs in an average month. The questionnaire collected information from physicians on patient workload, diagnosis/tumor characterization, patient management, patient treatment, personal attitude and events, and expectation in the next 6 months. Physicians were required to provide this information by referencing the different time points with regards to the pandemic including pre-pandemic, 1st peak, Delta/Omicron spread, current state and in the next 6 months. Results: Sampled physicians in the US reported an average of 50% of their managed patients involved in treatment decisions pre-pandemic, while the EU4+UK physicians reported an average of 45% of patients. This increased to 56% and 53% in US and EU4+UK, respectively, at the time of this study and was expected to increase further to 57% and 56%, respectively, in 6 months’ time. While most of the physicians reported an increase in the proportion of patients involved, physicians in the UK reported a drop at the 1st peak and Delta/Omicron spread compared to pre-pandemic (-1% and -3% respectively). Physicians in Germany reported the highest increase in the volume of patients being involved at the 1st peak of COVID-19 that quickly dropped during the Delta/Omicron spread (+18% and +6%, respectively). Physicians in Italy reported a much bigger change in the current state and predicted this to grow further in the next 6 months (+27% and +32%, respectively). Besides the recorded growth in the volume of patients involved in treatment decisions, the level of involvement has also increased from pre-pandemic. The average involvement score was 4.8 and 4.7 out of 7 in US and EU4+UK respectively pre-pandemic and grew to 5.2 and 5.0 at the 1st peak. This further increased to 5.6 and 5.8 at the time of this study. Conclusions: Results from this study highlighted participating physicians reported their patients to be more involved in their cancer treatment decisions compared to pre-pandemic levels and predicted more patients to become increasingly involved in the coming months. Further investigation into the continued impact of the pandemic on patient involvement and the benefits of patient participation would provide further insight into optimal ways to provide better treatment experiences through inclusivity. Further investigation using comparator cohort is warranted.

The impact of patient demographics on involvement in cancer care decisions in the US.

e18746 Background: As the oncology market continues to expand and more treatment options become available, the potential for highly personalized cancer care increases. In recent years, emphasis has been placed on patient involvement in treatment decisions, aiding physicians in generating care plans that focus on individual preferences and priorities. Shared decision making between patients and healthcare providers has been shown to improve patients’ perceptions and quality of life throughout the continuum of care (1). Methods: The Ipsos Global Oncology Monitor is an online, multi-center medical chart review of oncology patients receiving drug therapy. 470 cancer-treating physicians in the United States were screened for seniority and caseload and submitted data on 64,124 cancer patients (aggregate; all tumour types) between January 2022 to December 2022. Data included tumor type, age, gender identity, ECOG performance score and treatments received. The level of patient involvement in care decisions was determined by sampled physicians and recorded on a scale of 1-10 (1 = low involvement, 10 = high involvement). Results: Reported patient engagement with treatment was generally high, with an average involvement score of 7.50. 45% of sampled physicians rated patient involvement as a score of 9 or higher. In comparison to the entire study pool, reported patients diagnosed with breast cancer (7.89), non-small cell lung cancer (7.66), non-Hodgkin’s lymphoma (7.85) and colorectal cancers (7.64) all had significantly higher average involvement levels (p &lt; 0.05). In contrast, individuals diagnosed with prostate tumors or myeloma recorded ratings significantly lower than the average (7.03 and 7.44, respectively). In relation to gender identity, reported female patients were significantly more likely to be engaged with their care decisions (7.70) than their male counterparts (7.25). Additionally, ECOG performance scores and individual involvement seemed to align: patients with an ECOG score of 0 had the highest rated involvement (7.82) and as ECOG scores worsened, the average scores fell near or below the wider reported patient cohort mean. Conclusions: Results from this study highlight that reported US patient involvement in cancer treatment decisions is generally high, reinforcing the importance of joint evaluation in bettering care outcomes. However, specific patient cohorts are more likely to be highly involved than others. These discrepancies merit a more conscious effort to support patient engagement and continue improving quality of care. Further investigation using comparator cohort is warranted. https://participatorymedicine.org/journal/columns/innovations/2017/04/13/the-future-of-patient-engagement-in-the-oncology-setting-how-practical-patient-engagement-recommendations-and-innovative-inter-professional-education-can-drive-change/.

Current Treatment Strategies and Risk Stratification for Oral Carcinoma

Management of oral cavity squamous cell carcinoma (OSCC) involves a multidisciplinary team approach. Surgery is ideally the primary treatment option for nonmetastatic OSCC, and less invasive curative surgical approaches are preferred in early-stage disease to minimize surgical-related morbidity. For patients at high risk of recurrence, adjuvant treatment using radiation therapy or chemoradiation is often used. Systemic therapy may also be used in the neoadjuvant setting (for advanced-stage disease with the intent of mandibular preservation) or in the palliative setting (for nonsalvageable locoregional recurrence and/or distant metastases). Patient involvement in treatment decision is the key for patient-driven management, particularly in clinical situation with poor prognosis, for example, early postoperative recurrence before planned adjuvant therapy.

Premature termination, satisfaction with care, and shared decision-making during home treatment compared to inpatient treatment: A quasi-experimental trial.

Inpatient equivalent home treatment (IEHT), implemented in Germany since 2018, is a specific form of home treatment. Between 2021 and 2022, IEHT was compared to inpatient psychiatric treatment in a 12-months follow-up quasi-experimental study with two propensity score matched cohorts in 10 psychiatric centers in Germany. This article reports results on the treatment during the acute episode and focuses on involvement in decision-making, patient satisfaction, and drop-out rates. A total of 200 service users receiving IEHT were compared with 200 matched statistical "twins" in standard inpatient treatment. Premature termination of treatment as well as reasons for this was assessed using routine data and a questionnaire. In addition, we measured patient satisfaction with care with a specific scale. For the evaluation of patient involvement in treatment decisions, we used the 9-item Shared Decision Making Questionnaire (SDM-Q-9). Patients were comparable in both groups with regard to sociodemographic and clinical characteristics. Mean length-of-stay was 37days for IEHT and 28days for inpatient treatment. In both groups, a similar proportion of participants stopped treatment prematurely. At the end of the acute episode, patient involvement in decision-making (SDM-Q-9) as well as treatment satisfaction scores were significantly higher for IEHT patients compared to inpatients. Compared to inpatient care, IEHT treatment for acute psychiatric episodes was associated with higher treatment satisfaction and more involvement in clinical decisions.

Exploring “Human Skills” through a Cinemeducation Workshop during a Health Professions Education Conference in India

Dear Editor, The Academy of Health Professions Educators organizes the National Conference of Health Professions Educators (NCHPE) to facilitate and accelerate the diffusion of educational innovations, and experience sharing of effective teaching methods. The authors facilitated a workshop on cinemeducation (the use of movies in medical and health professions education)[1] during the 2022 conference. They have used films to explore human skills, the history of medicine, and pharmacology among other topics. PRECONFERENCE WORKSHOPS The organizers of the 13th NCHPE at Dehra Dun, India (https://hims.srhu.edu.in/nchpe-2022/), were interested in offering a preconference Cinemeducation workshop. A channel of communication was established among the workshop facilitators using both e-mail and other online applications. The first task was to delineate the scope of the workshop within the conference theme.[2] The next priority was the areas to address and design and evaluation of the interactive presentations and activities. Recently, in India, an attitude, ethics, and communication (AETCOM) module was introduced during the undergraduate medical (MBBS) program.[3] We decided to focus on the “human skills” of communication, empathy, proper attitude, and ethical behavior. We decided to start with an ice-breaking session using four short questions-the name of the person, the institution and city, one fact about them that is not widely known, and a movie that had the greatest influence on their life and why. This would be followed by an interactive session on the history of cinemeducation, important concepts, types of movies, and practical aspects of cinemeducation. The first small group activity was followed by an interactive discussion led by the third author on the use of movies in the AETCOM module. We had senior educators among the audience who had been involved in developing the module and this added to the richness of the discussion. A second movie clip activity then followed, and each group analyzed how they could use the clip during the module, the common challenges, and how these can be overcome. Table 1 provides details of the different movies from where clips were used. The layout of the room was studied. In addition to the three groups, we also required space for the facilitators and the student volunteers. The seating should be comfortable and should promote group work.Table 1: Movies from which clips were used during the workshopThe movie clips addressed the doctor–patient relationship, patient involvement in treatment decisions, a child’s right over her body, balancing the needs of a sick sibling with personal needs, patient involvement in clinical trials, restricting personal freedom to combat an infectious disease, preparation for death from cancer, a patient coming to terms with slow cognitive decline, use of unfair means during examinations, scientific clinical research, and among others. Communication between patient and nurse, a doctor and his friend, family members, a child and her lawyer, a team of researchers and public health officials, a researcher, and a formal committee was addressed. The facilitators were able to facilitate a cinemeducation workshop using existing facilities in a low-resource setting. They utilized the experience and knowledge of senior faculty participants to enrich the discussion. Yours sincerely. Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.

General population-based study on preferences towards end-of-life care in Southern Thailand: a cross-sectional survey

BackgroundEnd-of-life care preferences are potentially due to individual choice and feature variation due to culture and beliefs. This study aims to examine end-of-life care preferences and any associated factors, among the general Thai population. This could inform physicians in regards to how to optimize the quality of life for patients that are near the end of their lives.MethodsA cross-sectional study surveyed the general population in the Thai province of Songkhla; from January to April 2021. The questionnaires inquired about: 1) demographic information, 2) experiences with end-of-life care for their relatives, and 3) end-of-life care preferences. To determine end-of-life preferences, the data were analyzed using descriptive statistics. The data concerning patient demographics and end-of-life care preferences were compared using Fisher’s exact test.ResultsThe majority of the 1037 participants (67.6%) were female. The mean age among the adult and older adult groups were 40.9 ± 12.2, 70.0 ± 5.1, respectively. Half of them (48%) had an experience of observing someone die and 58% were satisfied with the care that their relatives had received. Most participants identified the following major end-of-life care preferences: having loved ones around (98.1%), being free from distressing symptoms (95.8%), receiving the full truth (95.0%), and having meaning in their lives (95.0%). There were no statistically significant differences in regards to end-of-life care preferences apart from being involved in treatment decisions, between adult and older adult groups.ConclusionThere was only one difference between the end-of-life preferences of the adult group versus the older adult group in regards to the topic of patient involvement in treatment decisions. Furthermore, receiving the full truth regarding their illness, being free from distressing symptoms, having loved ones around, and living with a sense of meaning were important end-of-life care preferences for both groups. Therefore, these should be taken into account when developing strategies towards improving patient life quality during their end-of-life period.

Treatment decision making (TDM): a qualitative study exploring the perspectives of patients with chronic haematological cancers.

ObjectivesHaematological malignancies are the fifth most common cancer in the UK, with chronic subtypes comprising around a third of all new diagnoses. These complex diseases have some similarities with other cancers, but often require different management. Surgical resection is not possible, and while some are curable with intensive chemotherapy, most indolent subtypes are managed with non-aggressive intermittent or continuous treatment, often over many years. Little is known about the views of patients with chronic haematological cancers regarding treatment decision making (TDM), a deficit our study aimed to address.Setting and designSet within the Haematological Malignancy Research Network (HMRN: www.hmrn.org), an ongoing population-based cohort that provides infrastructure to support evidence-based research, HMRN data were augmented by qualitative information from in-depth interviews. Data were analysed for thematic content, combining inductive and deductive approaches. Interpretation involved seeking meaning, salience and connections within data.ParticipantsThirty-five patients with four chronic subtypes: chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma, and myeloma. Ten relatives were present and contributed to varying extents.ResultsFive themes were discerned: (1) Preference for clinician recommendations; (2) Factors implicated in patient involvement in TDM; (3) Perceptions of proactive/non-proactive approaches to TDM; (4) Experiences of TDM at various points in the disease trajectory; (5) Support from others. Our principal finding relates to a strong preference among interviewees for treatment recommendations from haematologists, based on trust in their expertise and perceptions of empathetic patient–clinician relationships.ConclusionInterviewees wanted to be involved in TDM to varying extents, contingent on complex, inter-related factors, that are dynamic and subject to change according to differing clinical and personal contexts. Patients may benefit from clinicians assessing their shifting preferences for involvement on multiple occasions. Strong preferences for acceptance of recommendations was associated with cancer complexity, trust in clinician expertise and positive perceptions of patient–clinician relationships.

Enhancing Choices Regarding the Administration of Insulin Among Patients With Diabetes Requiring Insulin Across Countries and Implications for Future Care.

There are a number of ongoing developments to improve the care of patients with diabetes across countries given its growing burden. Recent developments include new oral medicines to reduce cardiovascular events and death. They also include new modes to improve insulin administration to enhance adherence and subsequent patient management thereby reducing hypoglycaemia and improving long-term outcomes. In the case of insulins, this includes long-acting insulin analogues as well as continuous glucose monitoring (CGM) systems and continuous subcutaneous insulin infusion systems, combined with sensor-augmented pump therapy and potentially hybrid closed-loops. The benefits of such systems have been endorsed by endocrine societies and governments in patients with Type 1 diabetes whose HbA1c levels are not currently being optimised. However, there are concerns with the low use of such systems across higher-income countries, exacerbated by their higher costs, despite studies suggesting their cost-effectiveness ratios are within accepted limits. This is inconsistent in higher-income countries when compared with reimbursement and funding decisions for new high-priced medicines for cancer and orphan diseases, with often limited benefits, given the burden of multiple daily insulin injections coupled with the need for constant monitoring. This situation is different among patients and governments in low- and low-middle income countries struggling to fund standard insulins and the routine monitoring of HbA1c levels. The first priority in these countries is to address these priority issues before funding more expensive forms of insulin and associated devices. Greater patient involvement in treatment decisions, transparency in decision making, and evidence-based investment decisions should help to address such concerns in the future.

Fostering Patient Choice Awareness and Presenting Treatment Options Neutrally: A Randomized Trial to Assess the Effect on Perceived Room for Involvement in Decision Making.

PurposeShared decision making calls for clinician communication strategies that aim to foster choice awareness and to present treatment options neutrally, such as by not showing a preference. Evidence for the effectiveness of these communication strategies to enhance patient involvement in treatment decision making is lacking. We tested the effects of 2 strategies in an online randomized video-vignettes experiment.MethodsWe developed disease-specific video vignettes for rheumatic disease, cancer, and kidney disease showcasing a physician presenting 2 treatment options. We tested the strategies in a 2 (choice awareness communication present/absent) by 2 (physician preference communication present/absent) randomized between-subjects design. We asked patients and disease-naïve participants to view 1 video vignette while imagining being the patient and to report perceived room for involvement (primary outcome), understanding of treatment information, treatment preference, satisfaction with the consultation, and trust in the physician (secondary outcomes). Differences across experimental conditions were assessed using 2-way analyses of variance.ResultsA total of 324 patients and 360 disease-naïve respondents participated (mean age, 52 ± 14.7 y, 54% female, 56% lower educated, mean health literacy, 12 ± 2.1 on a 3–15 scale). The results showed that choice awareness communication had a positive (Mpresent = 5.2 v. Mabsent = 5.0, P = 0.042, η2partial = 0.006) and physician preference communication had no (Mpresent = 5.0 v. Mabsent = 5.1, P = 0.144, η2partial = 0.003) significant effect on perceived room for involvement in decision making. Physician preference communication steered patients toward preferring that treatment option (Mpresent = 4.7 v. Mabsent = 5.3, P = 0.006, η2partial = 0.011). The strategies had no significant effect on understanding, satisfaction, or trust.ConclusionsThis is the first experimental evidence for a small effect of fostering choice awareness and no effect of physician preference on perceived room to participate in decision making. Physician preference steered patients toward preferring that option.

Patients as team members: Factors affecting involvement in treatment decisions from the perspective of patients with a chronic condition.

BackgroundActive patient involvement in treatment decisions is seen as a feature of patient‐centred care that will ultimately lead to better healthcare services and patient outcomes. Although many factors have been identified that influence patient involvement in treatment decisions, little is known about the different views that patients have on which factors are most important.ObjectiveThis study explores the views of patients with a chronic condition on factors influencing their involvement in treatment decisions.DesignQ‐methodology was used to study the views of patients. Respondents were asked to rank a set of 42 statements from the least important to the most important for active patient involvement in treatment decision‐making. The set of 42 statements was developed based on a literature search and a pilot in which two external researchers, 15 patients and four healthcare professionals participated. A total of 136 patients with one of three major chronic conditions were included: diabetes types 1 and 2, respiratory disease (i.e., chronic obstructive pulmonary disease and asthma) and cancer (i.e., breast cancer and prostate cancer). Data were collected in a face‐to‐face interview setting in the Netherlands.ResultsFour distinct views on the factors influencing active patient involvement were identified among patients with a chronic condition. (1) Enabled involvement: the extent to which patients are facilitated and empowered to participate will lead to patient involvement. (2) Relationship‐driven involvement: the relationship between patients and healthcare professionals drives patient involvement. (3) Disease impact‐driven involvement: the severity of disease drives patient involvement. (4) Cognition‐driven involvement: knowledge and information drive patient involvement.Discussion and ConclusionFrom the patients' perspective, this study shows that there is no one‐size‐fits‐all approach to involving patients more actively in their healthcare journey. Strategies aiming to enhance active patient involvement among patients with a chronic condition should consider this diversity in perspectives among these patients.Patient ContributionPatients are the respondents as this study researches their perspective on factors influencing patient involvement. In addition, patients were involved in pilot‐testing the statement set.

The effectiveness of interventions to increase patient involvement in decision-making in orthodontics: A systematic review.

To examine the effectiveness of interventions that aim to increase patient involvement in treatment decisions in orthodontic, orthognathic and cleft treatment, based on patient-reported outcomes and patient knowledge. Systematic review. OVID databases (MEDLINE, EMBASE and EBM reviews), CENTRAL, WHO's International Clinical Trials Registry Platform and reference lists of included studies. Studies were selected by two reviewers independently and in duplicate based on pre-defined eligibility criteria: Population: People considering or undergoing orthodontic, orthognathic or cleft treatment. Intervention: Any intervention that aims to increase patient involvement in decision-making. Outcomes: Patient-reported outcomes and patient knowledge. Studies: All experimental studies published in English from January 2000 to October 2019 were eligible. Standardised data extraction of study information and assessment of risk of bias using the Cochrane Risk of Bias Tool for RCTs and ROBINS-I for non-randomised studies of interventions. 13 randomised controlled trials were included. Due to heterogeneity in the studies, a narrative synthesis was undertaken. The majority (n=11) of studies involved orthodontic patients, with one study of cleft patients and one study of orthognathic and orthodontic patients. Six included studies reported significant differences between intervention and control groups with improved patient knowledge or better patient-reported outcomes. A variety of different interventions and outcome measures were used making data synthesis challenging. There is some evidence that interventions to increase patient involvement in decision-making can improve patient-reported outcomes and patient knowledge.

Patient Involvement in the Transfusion Decision-Making Can Change Patient Blood Management Practice for Better or Worse

Background: Red blood cell transfusion (RBCT) is a therapeutic procedure with important and undesirable secondary effects. Inappropriate overuse of RBCT is significant, and a significant percentage of physicians prescribe RBCT unnecessarily. Patient involvement in treatment decision-making is poor worldwide. Shared (with the patient) transfusion decision-making (TrDM) can temper a “quick finger on the trigger” of blood transfusion (BT). The objective of this study was to determine patients’ preferences surrounding their involvement in the TrDM process as well as physicians’ willingness to involve the patient in TrDM. The study also determined the role of patient age, gender, ethnicity, and schooling years in the TrDM process. Methods: This cross-sectional study was conducted in a variety of departments, with 123 patients over 18 years old, who received a BT for the first time. The patients completed an anonymous questionnaire which included demographic characteristics (age, gender, ethnicity, and schooling years) and 2 questions linked to potential willingness to participate in the decision to transfuse. Results: The questionnaire response rate was 100%. The data showed that 60% of patients (especially younger patients), independent of ethnicity, preferred a passive role in TrDM and 40% preferred to share the decision. Conclusions: The majority of patients, especially younger patients, prefer a passive role in TrDM, possibly due to insufficient information about the need for BT and its significance. We feel that active involvement on the part of the patient can provoke a more judicious thought process about the real need of BT on the part of the physician and have a positive influence on patient blood management.

The Balance of Patient Involvement: Patients' and Health Professionals' Perspectives on Decision-Making in the Treatment of Advanced Prostate Cancer.

Research has shown that involving patients in decisions on treatment may have positive effects for patients. However, there are different understandings of what involving patients implies and different attitudes among physicians toward sharing decisions with patients. This study aimed to explore the attitude of patients with advanced prostate cancer to involvement in treatment decisions and physicians' and nurses' approach to patient involvement. Moreover, it aimed to explore whether the decision-making changes as the treatment course progresses. Data were collected through participant observations and interviews. It was found that treatment decisions are primarily considered as part of physicians' role. Physicians' attitudes to patient involvement in treatment decisions depended on the type of treatment. Among patients and health professionals, there was a lack of confidence in the ability of patients to participate in the decisions. Health professionals and patients have different attitudes toward patient involvement and different views on what it entails.

Decision regret in men living with and beyond nonmetastatic prostate cancer in the United Kingdom: A population-based patient-reported outcome study.

ObjectiveClinical options for managing nonmetastatic prostate cancer (PCa) vary. Each option has side effects associated with it, leading to difficulty in decision‐making. This study aimed to assess the relationship between patient involvement in treatment decision‐making and subsequent decision regret (DR), and quantify the impact of health‐related quality of life (HRQL) outcomes on DR.MethodsMen living in the United Kingdom, 18 to 42 months after diagnosis of PCa, were identified from cancer registration data and sent a questionnaire. Measures included the Decision Regret Scale (DRS), Expanded Prostate cancer Index Composite short form (EPIC‐26), EQ‐5D‐5L, and an item on involvement in treatment decision‐making. Multivariable ordinal regression was utilized, with DR categorized as none, mild, or moderate/severe regret.ResultsA total of 17 193 men with stage I‐III PCa completed the DRS: 36.6% reported no regret, 43.3% mild regret, and 20.0% moderate/severe regret. The odds of reporting DR were greater if men indicated their views were not taken into account odds ratio ([OR] = 6.42, 95% CI: 5.39‐7.64) or were involved “to some extent” in decision‐making (OR = 4.63, 95% CI: 4.27‐5.02), compared with men who were “definitely” involved. After adjustment, including for involvement, men reporting moderate/big problems with urinary, bowel, or sexual function were more likely to experience regret compared with men with no/small problems. Better HRQL scores were associated with lower levels of DR.ConclusionsThis large‐scale study demonstrates the benefit of patient involvement in treatment decision‐making for nonmetastatic PCa. However, men experiencing side effects and poorer HRQL report greater DR. Promoting engagement in clinical decision‐making represents good practice and may reduce the risk of subsequent regret.

Oncologist-patient-caregiver decision-making discussions in the context of advanced cancer in an Asian setting.

ObjectivePatient involvement in treatment decisions is recommended in clinician‐patient encounters. Little is known about how oncologists engage patients in shared decision making in non‐Western countries. We assessed the prevalence of shared decision making among Singaporean oncologists and analysed how they discussed prognosis.MethodsWe audio‐recorded 100 consultations between advanced cancer patients and their oncologists. We developed a coding system to assess oncologist encouragement of patient participation in decision making and disclosure of an explicit prognosis. We assessed patient and oncologist characteristics that predicted these behaviours.ResultsForty‐one consultations involved treatment discussions. Oncologists almost always listed more than one treatment option (90%). They also checked patient understanding (34%), discussed pros and cons (34%) and addressed uncertainty (29%). Oncologists discussed prognosis mostly qualitatively (34%) rather than explicitly (17%). They were more likely to give an explicit prognosis when patients/caregivers asked questions related to prognosis.ConclusionOncologists in our sample engaged their patients in decision making. They have areas in which they can improve to involve patients at a deeper level to ensure shared decision making. Findings will be used to develop an intervention targeting oncologists and patients to promote patient involvement in decision making.

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

▪Background: Chronic lymphocytic leukemia (CLL) progresses with time and, as a result, patients can be challenged by considering multiple treatment options. Importantly, over the past decade, an array of new CLL treatments have emerged, including targeted therapy and immunotherapy options. Health care teams, therefore, play an important role in discussing new treatments with patients to ensure shared decision making. A substantial proportion of patients, however, report not discussing newly approved treatment options with clinicians. Our goal was to understand the sociodemographic and clinical factors associated with doctors' likelihood of discussing new treatment options in a national sample of CLL patients.Methods: Using data from the Cancer Support Community's Cancer Experience Registry®, our analytic sample included 187 participants who report CLL as their primary diagnosis. The dependent variable in all analyses was a dichotomous, patient-reported indicator of whether or not their doctor discussed new treatment options (e.g., ibrutinib, idealisib, obinutuzumab) with them. Our independent variables included: 1) sociodemographic characteristics: age, gender, education, urbanicity, and race; 2) clinical factors: genetic risk, treatment status, years since diagnosis, CLL risk (low, intermediate or high; based on patient report of how doctor estimated their CLL may progress over time), and relapse; and 3) patient-clinician communication: patient involvement in treatment decision making, patient's consideration of financial cost of care, discussion of health care team's goals for treatment, and discussion of patient's goals for treatment.Our analyses proceeded in two steps. First, we descriptively compared patients who discuss new treatments with their doctors and those who do not using Student's t-test. Second, multivariate logistic regression models estimated likelihood of doctor discussing new treatment options by sociodemographic, clinical, and patient-provider characteristics. Multiple imputation accounted for missingness in our regression models.Results: Our sample was 48% female, 96% White, and averaged 62 years of age (SD = 10), with a mean time since diagnosis of 7 years (SD = 5). 18% of our sample reported having a deletion 17p, 22% reported having a deletion 13q, 22% were currently receiving chemotherapy, and 16% reported recurrence of their CLL. 58% of our sample reported discussing new treatment options with their doctor. Descriptively, patients who report higher frequencies of cancer recurrence, intermediate or high risk of their CLL, genetic testing results indicative of deletion 17p and deletion 13q, current chemotherapy, greater involvement in treatment decision making, and lower consideration of financial cost of care were significantly more likely to discuss new treatment options with their doctors. In multivariate models, controlling for all sociodemographic, clinical, and patient-clinician characteristics, our results highlight a greater likelihood of discussing new options among patients who have experienced a relapse of their CLL.Conclusion: Nearly half of our CLL patients did not report discussing new treatment options with their clinician, raising concerns about whether shared decision-making is really taking place in the era of novel CLL therapeutics. While those who experience a relapse are significantly more likely to discuss new treatment options, unmet needs remain. As new treatments are incorporated into standard of care, greater efforts are needed to enhance shared decision-making at all points of care. DisclosuresBuzaglo:Vector Oncology: Employment.

PSY93 - Effect of Patient Involvement in Treatment Decision Making on Disease Outcomes in Rheumatoid Arthritis in the EU5

PSY93 - Effect of Patient Involvement in Treatment Decision Making on Disease Outcomes in Rheumatoid Arthritis in the EU5