Participation In Treatment Decisions Research Articles

A randomized controlled trial of shared decision-making treatment planning process to enhance shared decision-making in patients with MBC

PurposeOpportunities exist for patients with metastatic breast cancer (MBC) to engage in shared decision-making (SDM). Presenting patient-reported data, including patient treatment preferences, to oncologists before or during a treatment plan decision may improve patient engagement in treatment decisions.MethodsThis randomized controlled trial evaluated the standard-of-care treatment planning process vs. a novel treatment planning process focused on SDM, which included oncologist review of patient-reported treatment preferences, prior to or during treatment decisions among women with MBC. The primary outcome was patient perception of shared decision-making. Secondary outcomes included patient activation, treatment satisfaction, physician perception of treatment decision-making, and use of treatment plans.ResultsAmong the 109 evaluable patients from December 2018 to June 2022, 28% were Black and 12% lived in a highly disadvantaged neighborhood. Although not reaching statistical significance, patients in the intervention arm perceived SDM more often than patients in the control arm (63% vs. 59%; Cramer’s V = 0.05; OR 1.19; 95% CI 0.55–2.57). Among patients in the intervention arm, 31% were at the highest level of patient activation compared to 19% of those in the control arm (V = 0.18). In 82% of decisions, the oncologist agreed that the patient-reported data helped them engage in SDM. In 45% of decision, they reported changing management due to patient-reported data.ConclusionsOncologist engagement in the treatment planning process, with oncologist review of patient-reported data, is a promising approach to improve patient participation in treatment decisions which should be tested in larger studies.Trial registrationNCT03806738.

Acute Pain Services and pain-related patient-reported outcomes in Hungarian hospitals

BackgroundPostoperative pain management is an important part of surgical care, where Acute Pain Service offers added value in terms of patient outcomes and costs. The technology, however, has hardly been adopted in Hungary, with only two hospitals operating Acute Pain Service and whose performance has not been evaluated yet. This research compared pain management outcomes of surgical, orthopedic, and traumatology patients in Hungarian hospitals with and without Acute Pain Service.MethodsWe recruited 348 patients, 120 in the APS group and 228 in the control group, whose experience was surveyed with an adapted version of the American Pain Society Patient Outcome Questionnaire. The questionnaire covered pain intensity, pain interference with physical and emotional functions, side effects, patient satisfaction, information received, and participation in treatment decisions. The differences were analyzed by Fisher’s exact test and Mann–Whitney U test.ResultsThe APS group showed better results with lower pain intensity scores regarding worst postoperative pain (χ2 = 18.919, p = 0.0043). They reported less pain interference with activities in bed (χ2 = 21.978, p = 0.0006) and out of bed (χ2 = 14.341, p = 0.0129). Furthermore, patients in the APS group experienced fewer pain-management-related side effects, like nausea (χ2 = 15.240, p = 0.0101), drowsiness (χ2 = 26.965, p = 0.0001), and dizziness (χ2 = 13.980, p = 0.0124). However, patient information (χ2 = 3.480, p = 0.0945) and patient satisfaction (χ2 = 5.781, p = 0.2127) did not differ significantly between the two groups.ConclusionsOur findings confirm earlier international evidence on the benefits of Acute Pain Service in postoperative pain management and support the wider adoption of the technology in Hungarian hospitals. Nevertheless, close attention should be paid to patient information and involvement as better outcomes alone do not necessarily increase patient satisfaction.

Experiences of treatment decision-making among older newly diagnosed adults with acute myeloid leukemia: a qualitative descriptive study.

Treatment decision-making for older adults with acute myeloid leukemia (AML) is complex and preference-sensitive. We sought to understand the patient experience of treatment decision-making to identify specific challenges in shared decision-making to improve clinical care and to inform the development of directed interventions. We conducted in-depth interviews with newly diagnosed older (≥ 60years) adults with AML and their caregivers following a semi-structured interview guide at a public safety net academic hospital. Interviews were digitally recorded, and qualitative thematic analysis was employed to synthesize findings. Eighteen in-depth interviews were conducted. Age ranged from 62 to 78years. Patients received intermediate- (50%) or high-intensity (44%) chemotherapy or best supportive care only (6%). Six themes of patient experiences emerged from the analysis: patients (1) felt overwhelmed and in shock at diagnosis, (2) felt powerless to make decisions, (3) felt rushed and unprepared to make a treatment decision, (4) desired to follow oncologist recommendations for treatment, (5) balanced multiple competing factors during treatment decision-making, and (6) desired for ongoing engagement into their care planning. Patients reported many treatment outcomes that were important in treatment decision-making. Older adults with newly diagnosed AML feel devastated and in shock at their diagnosis which appears to contribute to a feeling of being overwhelmed, unprepared, and rushed into treatment decisions. Because no one factor dominated treatment decision-making for all patients, the use of strategies to elicit individual patient preferences is critical to inform treatment decisions. Interventions are needed to reduce distress and increase a sense of participation in treatment decision-making.

Patients’ Participation in Surgical Treatment Decision Making in General Government Hospital of Bharatpur

Background: Patient participation means involvement of the patient in decision making or expressing their opinions about different treatment methods, which includes sharing information, feelings and signs and accepting and rejecting health team instructions. The study aims to find out the level of patient participation in surgical treatment decision making of admitted patient in general government hospital of Chitwan.Methods: A descriptive cross –sectional research was carried out to assess the level of participation in surgical treatment decision making. Non-probability, purposive sampling technique was used. A set of valid instruments containing 16 item was used to assess the level of participation. Ethical clearance was taken from Institutional review Committee of Shree Medical and Technical College (SMTC-IRC 20221206-43). Data were collected and analyzed in statistical package for the social science version. Results: The result of the study shows that maximum respondents 51.8% belonged to age group less or equals to 40 years. Among 226 respondents 58.4% were female and 41.6% were male. Among them, more than half (62.8%) of the respondent had high level of participation and (37.2%) of the respondents had low level of participation.Conclusions: The findings of the study indicate the participation of patient in surgical treatment decision making. These findings may help hospital and concerned authorities to make appropriate policy and take corrective action to increase the level of patient participation in treatment decision making.

Shared decision making in patients with substance use disorders: A one-year follow-up study

Patient-centered care in therapeutic processes has been associated with better clinical outcomes, however, it remains a poorly studied aspect in Substance Use Disorder (SUD). The study aimed to evaluate patient's preferences, perceived participation in treatment decisions and activation level; and how they predict retention, pharmacological adherence and substance use during one-year follow-up. Logistic regression models were used to analyze the association between independent variables, along with a wide number of sociodemographic and clinical covariates, and outcomes. Most patients prefer a shared or passive role when making decisions about their treatment, and showed concordance between their preferred and perceived roles. In the univariate models, perceiving more involvement than desired showed a higher likelihood of treatment discontinuation at 12 months, and substance use at 6 and 12 months. No significant associations were found between the remaining decisional variables or the degree of activation with the assessed outcomes. A majority of SUD patients prefer and perceive to be involved in the decision-making process about their treatment. Patients perceiving more involvement than desired might experience an excess of responsibility that could negatively influence treatment continuation and substance use. Limitations of the study preclude any definitive conclusion, and more research is needed to confirm these results.

Individualized Treatment Patterns for Patients with Narcolepsy Treated with Oxybate: A Clinical Practice Perspective.

Real-world data regarding divided nightly dosing of oxybate and individualized prescribing in patients with narcolepsy are limited. Study objectives were to understand oxybate prescribing practices, including optimizing dose regimens and adjusting dosing per occasional changes in patients' routines, and physician recommendations for representative patient scenarios. A cross-sectional, web- and audio-based survey of physicians treating ≥2 patients with narcolepsy, prescribed nightly oxybate (sodium oxybate) dosing for ≥6 months, was conducted. Physicians were surveyed on patients' usual oxybate dosing regimens, frequency of and reasons for oxybate dosing-related discussions, and preferred methods for and perceptions of adjusting oxybate dosing. Physicians provided dosing-related guidance for 4 representative scenarios. Participating physicians (N=25) were neurologists (52%), psychiatrists (44%), and neuropsychiatrists (4%). Individualized oxybate prescribing practices were reflected by the variability of physicians' reporting of the percentage of their patients being prescribed once-nightly, twice-nightly, and thrice-nightly dosing regimens. Most physicians (68%) reported discussing adjusting individualized treatment to accommodate occasional changes to patients' routines; the most common reasons were consuming contraindicated beverages (alcohol; 65%) and travel (59%). Adjusting total nightly dose (68%) and dose timing (68%) were preferred adjustment methods. Most physicians (88%) felt the ability to individualize oxybate dosing was important and had a positive impact on ability to provide care. For each representative scenario, physicians provided several dose-adjustment recommendations, and physician responses encouraged patient participation in treatment decision-making. Physicians provided guidance supportive of oxybate dose adjustments to accommodate occasional changes in patients' routines, and perceived individualized dosing as important in providing care.

“Either go through chemotherapy or go through dying”: A qualitative study of the experiences of treatment decision-making among older newly-diagnosed adults with acute myeloid leukemia.

253 Background: Treatment decision making for older adults with acute myeloid leukemia (AML) is complex. An informed discussion between the patient and physician that incorporates patient values and preferences is crucial to arrive at a personalized treatment plan. We sought to understand the patient experience of treatment decision making and identify challenges to aligning care to patient preferences. Methods: We conducted in-depth interviews with newly diagnosed older (≥60 years) adults with AML and their caregivers following a semi-structured interview guide. Qualitative thematic analysis was used to summarize findings. Results: 16 in-depth interviews were conducted. Major themes emerged including: 1) Patients were overwhelmed and in shock (“I was shocked.” “... like my face was hit with a water hose turned all the way up.” “It’s like you have been hit by a truck.”) 2) Patients felt powerless, without true treatment options (“You don’t feel like you are in the driver seat.” “I didn’t see that there was a decision to be made.” “I mean, I had no choice.” “Either go through chemotherapy or go through dying.”) 3) Patients felt rushed and unprepared to make a treatment decision (“I don’t feel like we were prepared at all. It was all thrown in your face, and you had to decide.” “But the mindset when they went through the typical course of chemo... laying that all on me in a two-hour period and wanting me to decide right there and then, I think that that should not be allowed... you can’t make sound decisions in a two-hour period about your life and whether you are going to live or not.”) 4) Patients predominantly followed physician recommendations for treatment (“What went through my mind was I was told that I had a great doctor who was going to be looking at me and I leave stuff like that up to the professionals.” “They told me what needed to be done and I just let them do it.”) 5) Patients balanced many factors when making treatment decisions including survival, quality of life, and spending time with family (“Dr. [Name], I want to live long and strong.” “And both of us prefer quality for a shorter time than we do a longer time in agony.” “I’m not scared to die... it’s just the fact that I’ll miss everyone.”) 6) Patients desired greater input on care plans (“[I suggest] trying to let the patients have a little bit of input on their treatment plan.” “It has to be catered to the patients making those decisions.”). Conclusions: Older adults with newly diagnosed AML feel overwhelmed, unprepared, and rushed into treatment decisions. No one factor dominated treatment decision making highlighting the need for physicians to assess individual patient priorities to arrive at a treatment plan. Interventions to reduce distress, elicit patient preferences and values, and increase participation in treatment decision making would improve the quality of treatment decisions.

Characterizing the Patient Journey in Multiple Myeloma: Qualitative Review.

BackgroundThe patient experience of multiple myeloma (MM) is multifaceted and varies substantially between individuals. Current published information on the patient perspective and treatment of MM is limited, making it difficult to gain insights into patient needs regarding the condition.ObjectiveIn this review, a combined research method approach (ie, the review of published literature and social media posts) was undertaken to provide insight into patients’ perspectives on the burden and treatment of MM, the impact of the COVID-19 pandemic, and the impact of MM on caregivers of patients with MM.MethodsTargeted searches of PubMed and PsycINFO were conducted from November 16, 2010, to November 16, 2020; in parallel, patient-reported information derived from social media posts from 6 patient advocacy websites and YouTube were searched. The review of patient advocacy websites and YouTube targeted patient-reported information from patients with a self-reported diagnosis of MM who discussed their experience of MM and its treatments.ResultsA total of 27 articles and 138 posts were included (patient-reported information included data from 76 individuals), and results from both sources showed that patients experienced a variety of symptoms and treatment side effects, including neuropathy, fatigue, nausea, and back pain. These can affect areas of health-related quality of life (HRQOL), including physical functioning; emotional, psychological, and social well-being; the ability to work; and relationships. Patients valued involvement in treatment decision-making, and both the patient-reported information and the literature indicated that efficacy and tolerability strongly influence treatment decision-making. For patients, caregivers, and physicians, the preference for treatments was strongest when associated with increased survival. Caregivers can struggle to balance care responsibilities and jobs, and their HRQOL is affected in several areas, including emotional-, role-, social-, and work-related aspects of life. The COVID-19 pandemic has challenged patients’ ability to manage MM because of limited hospital access and restrictions that negatively affected their lives, psychological well-being, and HRQOL. Unmet patient needs identified in the literature and patient-reported information were for more productive appointments with health care professionals, better-tolerated therapies, and more support for themselves and their caregivers.ConclusionsThe combination of published literature and patient-reported information provides valuable and rich details on patient experiences and perceptions of MM and its treatment. The data highlighted that patients’ HRQOL is impeded not only by the disease but also by treatment-related side effects. Patients in the literature and patient-reported information showed a strong preference for treatments that prolong life, and patients appeared to value participation in treatment decisions. However, there remain unmet needs and areas for further research, including treatment, caregiver burden, and how to conduct appointments with health care professionals. This may help improve the understanding of the journey of patients with MM.Plain Language SummaryMultiple Myeloma (MM) is the second most common cancer that affects blood cells. In this study, researchers wanted to know patients’ views on the effects of MM and the treatments they received. Researchers also looked at the impact of the COVID-19 pandemic on patients’ treatment and the impact of MM on caregivers. To this end, the researchers reviewed information from 27 published studies and 138 social media posts by 76 patients with MM. Patients commonly reported nerve pain, tiredness, feeling sick, and back pain caused by MM and the treatments they received. The effects of MM and treatments affected patients’ physical function; emotional, psychological, and social well-being; ability to work; and relationships. The researchers found that patients wanted to be involved in decisions related to their treatment. The effectiveness against MM and known negative effects strongly influenced the choice of treatments for patients. Increased survival was the strongest factor in the choice of treatment for patients, caregivers, and doctors. Researchers found that the emotional-, role-, social-, and work-related aspects of caregivers’ lives were affected by caring for patients with MM. The COVID-19 pandemic also affected the ability of patients to manage their MM because of limited hospital access and the effects of restrictions that impacted their lives and psychological well-being. Finally, the researchers identified some areas requiring improvement, including unproductive appointments with health care professionals, the need for treatments with fewer negative effects, and more support for patients with MM and their caregivers. This information may be useful to improve and understand the experience of patients with MM.

Treatment preferences among adults with normal cognition and cognitive impairment.

Although patient participation in treatment decisions is important for preference-concordant care delivery, it is largely unknown how cognitive impairment influences treatment preferences. We investigated whether treatment preferences for the care of serious illness differ between adults with and without cognitive impairment in hypothetical clinical scenarios. Data from the 2018 Health and Retirement Study were used. The sample included 1291 self-respondents (201 respondents with cognitive impairment, and 1090 with normal cognition). We examined treatment preferences for life-extending, limited, and comfort care options in two hypothetical clinical scenarios where the respondent imagines a patient with (1) good physical health with severe cognitive impairment consistent with dementia; and (2) with physical impairment due to a heart attack, but normal cognition. Respondents specified whether they were unsure, or if they would want or not want each treatment option. Linear probability models were used to compare treatment preferences by cognitive status. Respondents with cognitive impairment were more likely to report that they were unsure about treatment options across both clinical scenarios compared to those with normal cognition. For the limited treatment option, cognitive impairment was associated with a lower rate of expressing a treatment preference by 7.3 (p=0.070) and 8.5 (p=0.035) percentage points for dementia and heart attack scenarios, respectively. Among those who articulated preferences, cognitive impairment was associated with a higher rate of preference for life-extending treatment in both dementia (30.1% vs. 20.0%, p=0.044) and heart attack scenarios (30.0% vs. 20.2%, p=0.033). Compared to those with normal cognition, cognitive impairment was associated with greater uncertainty about treatment preferences and higher rates of aggressive care preferences among those who specified preferences. Further research should assess whether preferences for aggressive care become more common as cognition declines in order to improve preference-concordant care delivery for patients with cognitive impairment.

1272P Living with brain metastases: A longitudinal qualitative study of patient experiences from time of diagnosis

Significant improvements in diagnostics and anticancer treatments have led to an increased incidence of brain metastases (BMs). Patients with BMs experience several symptoms such as headache, nausea, imbalance, seizures, cognitive impairment and fatigue, in addition to impaired quality of life (QoL) and everyday functioning. Research on patient perspectives on living with BMs is scarce. This longitudinal interview study investigates patient experiences with diagnosis and life with BMs. These data can inform health care providers how to best approach BM-patients and their needs. Semi-structured interviews with 20 purposively sampled newly diagnosed BM-patients were conducted at baseline, 2 and 4 months in an ongoing prospective BM-study. The interview guide focused on patient experiences of: receiving the BM diagnosis, participation in treatment decision-making, everyday functioning, symptoms, worries and needs. Transcripts were analysed applying a qualitative longitudinal trajectory approach. were comprised in the following 4 themes that were applicable across the 3 time points: The Brain; an additional burden or more of the same? – A majority of the patients did not seem particularly concerned about the location of the metastatic disease. Trust – Patients have confidence in the treatment they receive and are satisfied with their care in spite of not being involved in treatment decisions. Still, some lack information about diagnosis, treatment, side effects and prognosis, and might have unanswered questions they do not openly address. Distancing - Instead of openly dwelling about their diagnosis or the future, patients actively try to live as usual. The new normal - Patients adapt to the situation and report living well, even when experiencing burdensome symptoms and substantial limitations in daily activities. Life of BM-patients is considerably affected. Although patients cling to normalcy, impaired functioning, unmet information needs and inadequate symptom control may impair their QoL. Health care providers should actively explore each patient’s perspectives, needs and symptoms, and tailor individual treatment and care.

Barriers to accessing treatment for substance use after inpatient managed withdrawal (Detox): A qualitative study

IntroductionAccess to and uptake of evidence-based treatment for substance use disorder, specifically opioid use disorder (OUD), are limited despite the high death toll from drug overdose in the United States in recent years. Patient perceived barriers to evidence-based treatment after completion of short-term inpatient medically managed withdrawal programs (detox) have not been well studied. The purpose of the current study is to elicit patients' perspectives on challenges to transition to treatment, including medications for OUD (MOUD), after detox and potential solutions. MethodsWe conducted semi-structured interviews (N = 24) at a detox center (2018–2019) to explore patients' perspectives on obstacles to treatment. The study managed the data in NVivo and we used content analysis to identify themes. ResultsPatients' characteristics included the following: 54 % male; mean age 37 years; self-identified as White 67 %, Black 13 %, Latinx 8 %, Native Hawaiian/Pacific Islander 4 %, and other 8 %; heroin use in the past 3 months 67 %; and ever injecting drugs 71 %. Patients identified the following barriers: 1) lack of continuity of care; 2) limited number of detox and residential treatment program beds; 3) unstable housing; and 4) lack of options when choosing a treatment pathway. Solutions proposed by participants included: 1) increase low-barrier access to community MOUD; 2) add case managers at the detox center to establish continuity of care after discharge; 3) increase assistance with housing; and 4) encourage patient participation in treatment decisions. ConclusionsPatients identified lack of continuity of care, especially care coordination, as a major barrier to substance use treatment. Increasing treatment utilization, including MOUD, necessitates a multimodal approach to continuity of care, low-barrier access to MOUD, and support to address unstable housing. Patients want care that incorporates options and respect for.individualized preferences and needs.

Satisfaction with Nurse-led Follow-up in Prostate Cancer Patients—A Nationwide Population-based Study

BackgroundSatisfaction with nurse-led follow-up among men with prostate cancer is high. However, it is unclear whether all men are satisfied or whether there are men who would benefit from being followed by a urologist or a nurse. ObjectiveTo investigate the follow-up distribution between urologists and nurses, and whether the high self-reported satisfaction with nurse-led follow-up is independent of other factors such as age or comorbidity. Design, setting, and participantsAll Swedish men, ≤70 yr of age, with a low-risk prostate cancer diagnosis in 2008, answered a questionnaire 7 yr after diagnosis. The extensive questionnaire included a question on satisfaction with care, answered on a seven-point scale. Participants were divided based on whether they were followed up by a nurse, a urologist, or both. Outcome measurements and statistical analysisFactors that could influence the level of satisfaction were identified as age, education, comorbidity, treatment, disease progression, urinary bother, level of information, and participation in treatment decision. Likelihood ratio tests from ordinal regression were used to test the null hypothesis of similar satisfaction between groups. Results and limitationsOut of 1288 men, 1137 (88%) answered both the question on who performed the follow-up and the question regarding satisfaction. In all, 350 men reported that they were followed up by nurses (31%), 598 (52%) by urologists, and 189 (17%) by both. No differences in satisfaction where seen between the groups. Approximately 50% were satisfied completely, regardless of who performed the follow-up. Results were not affected by age, educational level, comorbidity, treatment, disease progression, urinary bother, information, or participation in treatment decision. Limitations include the nonrandomized, retrospective design and a potential recall bias. ConclusionsSatisfaction with nurse-led follow-up is high, regardless of factors such as age, level of education, comorbidity, and treatment. Patient summaryMen with prostate cancer can be offered nurse-led follow-up on a regular basis and still maintain their satisfaction with health care.

Patient participation in treatment decision-making of prostate cancer: a qualitative study.

Despite increasing development in decision-making strategies for patients with prostate cancer, little is known about patients' individual experience and perception throughout the decision-making process. The objective of this study was to explore patients' experiences and perceptions towards treatment decision-making. We conducted a qualitative interview study with 30 patients diagnosed with prostate cancer. We transcribed interviews verbatim and inductively identified codes. Thematic analysis was used to develop and refine a codebook that aided in the identification of themes. Three key themes and nine subthemes emerged, which were as follows: I. less involved in treatment decision-making, (i) passive decisional control, (ii) lack of medical knowledge, and (iii) domination by family members; II. the right to be informed of the disease condition and to choose treatment options, (i) sociocultural influences, (ii) patients believe that they should know the true facts of the disease, and (iii) patient autonomy during treatment; and III. future consideration and advance care planning, (i) fewer future concerns, (ii) advance care planning is poorly understood, and (iii) acceptance of advance care planning. The study results show that patients with prostate cancer have a diversity of needs to cultivate their ability to make treatment decisions, and healthcare professionals should empower patients, as well as provide decision aids or decision support for patients.

PCN164 Impact of Treatment and Patient Attributes on Oncologists Decision-Making in First-line Chronic Lymphocytic Leukemia (CLL) in the United States (US)

This study evaluated the impact of treatment and patient attributes on oncologists’ first-line CLL treatment decisions. This cross-sectional survey assessed board certified medical oncologists practicing and treating CLL patients in the US (October 2019 - January 2020). Survey included a ranking exercise of 13 treatment attributes pertaining to efficacy, adverse effects, and convenience selected from literature, on their relative importance in treatment decision-making. Four clinical vignettes with varying patient attributes (age, gender, IGHV mutation status, etc.) were presented to oncologists to understand their treatment selection process. Other items included demographics, clinical practice type, cytogenetic/mutation testing recommendations, and patient participation in treatment decisions. Results were descriptively analyzed. Fifty oncologists (oncology: 28%, hematology: 10%, both: 62%) completed the survey; most were males (86%), Caucasian (43%), community-based (60%)and treating 53 CLL patients on average with a mean experience of 14 years. Oncologists ranked overall survival, progression free survival, grade III/IV tumor lysis syndrome, grade III/IV atrial fibrillation, and administration route (oral vs intravenous) as the top-five most important treatment attributes. Most clinicians (84%) “often/always” recommended cytogenetic/mutation testing. Vignette responses showed that most oncologists (mean 61%) preferred oral targeted monotherapy as their treatment choice for IGHV mutated/unmutated CLL patients; for older patients this preference was more prominent (mean 67% among vignettes with age 75+). Furthermore, oncologists consistently cited efficacy among the top-two reasons for treatment selection. Most oncologists stated they “completely/somewhat” (84%) understood their patients’ treatment preferences/goals, and their patients had “complete/some” participation (92%) in treatment decision-making. Oncologists considered efficacy as the most important attribute and preferred oral targeted monotherapy for first-line CLL patients. In contrast to previously published real-world testing patterns in CLL, a higher proportion of clinicians recommended cytogenetic/mutation testing. This study is an important step in understanding how treatment and patient attributes impact clinician recommendations

Self-Efficacy for Coping with Breast Cancer Treatment Among Spanish-Speaking Latinas.

Background: Cancer-related self-efficacy, a multidimensional construct, is the confidence that one can overcome challenges associated with cancer and its treatment; higher levels have been associated with better psychosocial outcomes of breast cancer survivors. Little is known about factors that influence it among Latina breast cancer survivors.Purpose: Assess associations of several aspects of health care processes and of spirituality with self-efficacy for coping with breast cancer treatment among primarily Spanish-speaking Latina breast cancer survivors.Methods: We analyzed baseline data from a randomized controlled trial of a cognitive–behavioral stress management intervention that enrolled 151 Spanish-speaking Latinas within 1 year of breast cancer diagnosis. Multivariate linear regression models examined associations of health care processes (quality of breast cancer care and information, participating in medical care, difficulty engaging with doctors) and spirituality (meaning/peace, faith, acceptance) with self-efficacy for coping with breast cancer treatment.Results: Mean age was 51 (standard deviation [SD]=11), 66% completed high school or less, and most reported financial hardship in the past year (78%). Average time since diagnosis was 3.8 months (SD=2.7). In bivariate analyses, all six determinants were significantly associated with self-efficacy for coping with breast cancer treatment; participating in medical care (B=0.56, p<0.001) and having a sense of meaning/peace (B=0.76; p<0.001) were independently associated, controlling for sociodemographic and treatment characteristics.Discussion: Interventions that promote participation in treatment decisions and sense of meaning and peace could improve confidence in coping with breast cancer treatment, and potentially quality of life, among Latinas living with breast cancer (Trial Registration Number: NCT01383174 [ClinicalTrials.gov]).

Awareness of and preference for disease prognosis and participation in treatment decisions among advanced cancer patients in Myanmar: Results from the APPROACH study.

To investigate prognostic awareness, preference for prognostic information, and perceived and preferred roles in decision making among patients with advanced cancer in Myanmar. A cross-sectional survey was administered at the Yangon General Hospital to stage 4 cancer patients who were at least 21 years old and aware of their cancer diagnosis. Patients were asked questions about their prognosis, participation in treatment decisions, sociodemographic and clinical information. Data from 131 patients were analyzed using descriptive statistics and logistic regressions. Only 15% of patients surveyed were aware that their cancer was advanced and only a quarter (26%) of patients knew that treatment intent was noncurative. The likelihood of treatment-intent awareness was higher among patients who were male, high income, and aware that they had advanced cancer. Roughly 60% of patients reported playing an active or collaborative role in treatment decisions, with a strong preference (59%) for the latter. For the majority of patients (69%), perceived and preferred roles in decision making were the same. Sociodemographic characteristics did not predict perceived and preferred roles in decision making. This is the first effort to analyze prognostic awareness and decision-making practices among advanced cancer patients in Myanmar. Patients had inadequate knowledge on their disease progression and intent of treatment. Yet, the majority of them were keen to be involved in treatment decisions.

Satisfaction with antipsychotics as a medication: the role of therapeutic alliance and patient-perceived participation in decision making in patients with schizophrenia spectrum disorder

Objectives The aim of this study was to identify independent predictors of satisfaction with antipsychotics in patients with schizophrenia spectrum disorders treated in a mental health catchment area. Methods Observational analytical study of patients (n = 150) recruited through a convenience sampling method from five mental health units. Satisfaction with the antipsychotic as a medication was evaluated using the Treatment Satisfaction Questionnaire for Medication (TSQM). Therapeutic alliance was assessed by the Working Alliance Inventory Short Form (WAI-S). Patient-perceived participation in decision-making was assessed using COMRADE (Combined Outcome Measure for Risk communication And treatment Decision making Effectiveness). A multiple linear regression analysis was performed to identify variables independently associated with the TSQM ‘Global Satisfaction’ total score. Results Two variables – age and higher level of self-perceived participation in treatment decision-making – were directly, significantly, and independently associated (β coefficient values: 0.209 and 0.432, respectively) with a higher TSQM Global satisfaction score. In addition, the severity of psychotic symptoms was inversely associated with satisfaction (β coefficient value: −0.205) (R 2 = 0.355; R 2 adj. = 0.291; F(13) = 5.554; p < 0.01). Conclusions These findings suggest that involving the patient in treatment decision-making and optimising the treatment to reduce symptoms, especially in younger patients, could increase satisfaction with antipsychotic treatment. Key Points Patient involvement in shared decision-making is relevant for treatment satisfaction. Current evidence suggests that improving the doctor–patient relationship optimises antipsychotics outcomes. Self-perceived participation in decision-making predicts satisfaction with antipsychotic medication. Types of antipsychotics do not determine consistent differences in satisfaction.

Did You Get What You Wanted? Patient Satisfaction and Congruence Between Preferred and Perceived Roles in Medical Decision Making in a Hungarian National Survey

ObjectivesIn a growing number of countries, patient involvement in medical decisions is considered a cornerstone of broader health policy agendas. This study seeks to explore public preferences for and experiences with participation in treatment decisions in Hungary. MethodsA nationally representative online panel survey was conducted in 2019. Outcome measures included the Control Preferences Scale for the preferred and actual role in the decision, the 9-item Shared Decision Making Questionnaire, and a Satisfaction With Decision numeric rating scale. ResultsA total of 1000 respondents participated in the study, 424 of whom reported having had a treatment decision in the preceding 6 months. Overall, 8%, 18%, 51%, 19%, and 4% of the population preferred an active, semiactive, shared, semipassive, and passive role in decision making, respectively. Corresponding rates for perceived role were as follows: 9%, 15%, 35%, 26%, and 15%. Preferred and perceived roles matched for 52% of the population, whereas 32% preferred more and 16% less participation. Better health status, attaining role congruence, and higher 9-item Shared Decision Making Questionnaire scores were positively associated with satisfaction, accounting for 32% of the variation in Satisfaction With Decision scores (P < .05). ConclusionsThis study represents the first national survey on decisional roles in healthcare in Hungary and, more broadly, in Central and Eastern Europe. Shared decision making is the most preferred decisional role in Hungary; nevertheless, there is still room to improve patient involvement in decision making. It seems that patient satisfaction may be improved through tailoring the decisional role to reflect patients’ preferences and through practices that encourage shared decision making.

Care stress in caregivers of disabled stroke patients: a cross-sectional survey.

A cross-sectional survey was performed on the family membersof disabled stroke survivors, those who are both the patient's medical authorizer and caregiver,to identify the sources of the caring stress and inform appropriate interventions. A total of 242 family members of stroke patients, who were treated in a tertiary geriatric hospital in Haikou, the capital city of Hainan Province, were enrolled in the current study by using convenience sampling. Questionnaire forms were used to investigate care stress caused by family members' current care activitiesand analyze its causes. The care stress of the family members was moderately positively correlated with financial pressure (r=0.476, P<0.01). Family members' educational background, financial pressure, the times of hospitalizations, the dependency of stroke patients, and the degree of family members' participation in treatment decisionmaking during the patient's hospital stay were the primary sources of the caring stress (P<0.05 or P<0.01). A substantial proportion of family members are under high stress when caring for disabled stroke patients. Strategies including knowledge training, empowerment, home-based rehabilitation, and information and emotional support may effectively relieve the caring stress, to improve the family support of patients, improve the quality of life of both patients and caregivers, and enhance the rehabilitation effectiveness.

Awareness of and Preference for Disease Prognosis and Participation in Treatment Decisions Among Patients With Advanced Cancer in Myanmar: Results From the APPROACH study

PURPOSE The aim of this study was to investigate prognostic awareness, preference for prognostic information, and perceived and preferred roles in decision making among patients with advanced cancer in Myanmar. METHODS A cross-sectional survey was administered at Yangon General Hospital to patients with stage 4 cancer who were at least 21 years old and aware of their cancer diagnosis. Patients were asked questions about their prognosis, treatment decisions, and sociodemographic and clinical information. Data from 131 patients were analyzed using descriptive and comparative statistics. RESULTS Only 15% of patients surveyed were aware that their cancer was advanced, and only 26% knew that it was terminal. One third of patients (34%) had prognostic awareness, defined as the knowledge that treatment intent is noncurative. The likelihood of awareness was higher among patients who were male, high income, and aware that they had advanced cancer. Approximately 60% of patients reported playing an active or collaborative role in treatment decisions, with a strong preference (59%) for the latter. For the majority of patients (69%), perceived and preferred roles in decision making were the same. Sociodemographic characteristics did not predict perceived and preferred roles in decision making. CONCLUSION To our knowledge, this is the first effort to analyze prognostic awareness and decision-making practices among patients with advanced stage cancer in Myanmar. Patients had inadequate knowledge of their disease progression and intent of treatment. Yet, a majority of them were keen to be involved in treatment decisions. Thus, physicians should effectively communicate prognosis and treatment intent, encouraging patients to participate in decisions whenever possible.