Patient Involvement In Decision Research Articles

Patient Involvement in Decision-Making of Nursing Care from the Nurses’ Perspectives

Introduction: High-quality care renders patients to be fully informed and involved in the decision-making process. A literature review also reveals that the involvement of patients in healthcare has been associated with improved clinical outcomes. However, it rarely happens as several studies demonstrated that patient involvement in decision-making is lacking worldwide. Hence, health professionals, especially nurses, play an important role in patient involvement in decision-making as they are mostly engaged with patients during the care plan. This study aimed to assess the nurses’ perceptions and their role on patient involvement in nursing care decision-making. Method: A cross-sectional descriptive study was conducted at one of the university hospitals in Malaysia. About 105 nurses from 3 major departments (internal medicine, general surgery, and orthopaedic) were involved in this study. The data were analysed using IBM SPSS Statistics version 25. Results: The result showed that most of the nurses agree their patient involvement in decision-making relates to their encouragement to participate as well as having opportunity and enough information to participate. However, many of the nurses believe that they have to decide for their patients. Besides, a significant association between nurses’ years of service and their perception of patient’s involvement in decision-making (p = 0.01) was noted. Similarly, there is a significant association between the nurses’ department and their preferred role with p-value of 0.001 (p < 0.05). Conclusion: This study indicates the need to further improve nurses’ awareness of the importance and benefits of patient involvement in decisions related to their nursing care.

Public information needs and attitudes regarding cancer and cancer patients in Oman: a cross-sectional survey

Exploring public information needs and attitudes towards cancer patients might be the first step in developing an intervention that encourages public engagement in early detection and cancer prevention programmes. To explore Omani public information needs and attitudes towards cancer in Oman. A cross-sectional survey design was used. Of the 569 participants, 369 (64.9%) were female; the mean age was 30.9 (SD=9.5) years. Of the participants, 94.4% wanted to be informed if they were found to have cancer in the future. The mean total attitudes score was 40.2 (SD=4.7) out of a maximum 48. Further, being employed, preferring to be informed about cancer diagnosis and having positive attitudes towards cancer and cancer patients predicted higher information needs. The current paternalistic approach seems to be no longer appropriate for cancer patients in Oman, and more active patient involvement in decision-making is needed.

Surgeon Use of Shared Decision-making for Older Adults Considering Major Surgery

Because major surgery carries significant risks for older adults with comorbid conditions, shared decision-making is recommended to ensure patients receive care consistent with their goals. However, it is unknown how often shared decision-making is used for these patients. To describe the use of shared decision-making during discussions about major surgery with older adults. This study is a secondary analysis of conversations audio recorded during a randomized clinical trial of a question prompt list. Data were collected from June 1, 2016, to November 31, 2018, from 43 surgeons and 446 patients 60 years or older with at least 1 comorbidity at outpatient surgical clinics at 5 academic centers. Patients received a question prompt list brochure that contained questions they could ask a surgeon. The 5-domain Observing Patient Involvement in Decision-making (OPTION5) score (range, 0-100, with higher scores indicating greater shared decision-making) was used to measure shared decision-making. A total of 378 surgical consultations were analyzed (mean [SD] patient age, 71.9 [7.2] years; 206 [55%] male; 312 [83%] White). The mean (SD) OPTION5 score was 34.7 (20.6) and was not affected by the intervention. The mean (SD) score in the group receiving the question prompt list was 36.7 (21.2); in the control group, the mean (SD) score was 32.9 (19.9) (effect estimate, 3.80; 95% CI, -0.30 to 8.00; P = .07). Individual surgeon use of shared decision-making varied greatly, with a lowest median score of 10 (IQR, 10-20) to a high of 65 (IQR, 55-80). Lower-performing surgeons had little variation in OPTION5 scores, whereas high-performing surgeons had wide variation. Use of shared decision-making increased when surgeons appeared reluctant to operate (effect estimate, 7.40; 95% CI, 2.60-12.20; P = .003). Although longer conversations were associated with slightly higher OPTION5 scores (effect estimate, 0.69; 95% CI, 0.52-0.88; P < .001), 57% of high-scoring transcripts were 26 minutes long or less. On multivariable analysis, patient age and gender, patient education, surgeon age, and surgeon gender were not significantly associated with OPTION5 scores. These findings suggest that although shared decision-making is important to support the preferences of older adults considering major surgery, surgeon use of shared decision-making is highly variable. Skillful shared decision-making can be done in less than 30 minutes; however, surgeons who engage in high-scoring shared decision-making are more likely to do so when surgical intervention is less obviously beneficial for the patient. ClinicalTrials.gov Identifier: NCT02623335.

Shared Decision Making in the Psychiatric Inpatient Setting: An Ethnographic Study about Interprofessional Psychiatric Consultations.

Shared decision making is increasingly receiving attention in health care and might improve both the quality of care and patient outcomes. Nevertheless, due to its complexity, implementation of shared decision making in clinical practice seems challenging. This ethnographic study aimed to gain a better understanding of how psychiatric inpatients and the interprofessional care team interact during regular interprofessional psychiatric consultations. Data were collected through participant observation on two different psychiatric wards in a large psychiatric hospital in Switzerland. The observation focused on the contextual aspects of interprofessional patient consultations, the communication and interaction as well as the extent to which patients were involved in decision making. Participants included patients, psychiatrists, junior physicians, nurses, psychologists, social workers and therapists. We observed 71 interprofessional psychiatric consultations and they differed substantially in both wards in terms of context (place and form) and culture (way of interacting). On the contrary, results showed that the level of patient involvement in decision making was comparable and depended on individual factors, such as the health care professionals’ communication style as well as the patients’ personal initiative to be engaged. The main topics discussed with the patients related to pharmacotherapy and patient reported symptoms. Health care professionals in both wards used a rather unidirectional communication style. Therefore, in order to promote patient involvement in the psychiatric inpatient setting, rather than to focus on contextual factors, consultations should follow a specific agenda and promoting a bidirectional communication style for all parties involved is strongly recommended.

Development and evaluation of evidence-based patient information handbooks about multiple sclerosis immunotherapies

BackgroundMultiple sclerosis treatment options are increasing. Evidence-based patient information (EBPI) are therefore crucial to enable patient involvement in decision making. Based on earlier work on decision support, patient information handbooks on 8 MS immunotherapies were developed, piloted and evaluated with support from the German Clinical Competence Network MS and the German MS Society. MethodsHandbooks were structured according to EBPI concepts. Drafts were commented by patient representatives and neurologists with an MS expertise. Executive boards of the German MS Society and the Competence Network as well as pharmaceutical companies’ feedback was included. Handbooks were distributed among MS neurologists by the German MS Society. Evaluation followed applying a mixed methods approach with interviews, focus groups and surveys. One survey addressed persons with MS (pwMS) based on a questionnaire included in each handbook. Neurologists who received printed patient handbooks were invited to give feedback in a second survey. ResultsEight handbooks were developed providing absolute and relative risk information in numbers and figures as well as monitoring needs and drug fact boxes. Despite the high amount of information and the display of low absolute risk reduction rates of treatments, handbooks were overall appreciated by pwMS (n=107) and mostly also by physicians (n=24). For more than 70% of the pwMS the information was new, understandable and supportive for decision making. But patients felt uncomfortable with relative risk information. However, response rates in the evaluation were low, exposing the challenges when implementing EBPI into clinical care. Therefore, conclusions must be considered preliminary. ConclusionEBPI on immunotherapies for MS seem feasible and are appreciated by patients and treating neurologists but more implementation research is needed.

Barriers to Patient Involvement in Decision-Making in Advanced Cancer Care: Culture as an Amplifier.

In advanced cancer care, patient preferences regarding treatment are sometimes insufficiently integrated in the decision-making process. This can be the case with patients from non-Western cultural backgrounds undergoing treatment in the US. This study aimed to understand oncology and palliative care physicians' and nurses' perceptions of factors that impact involvement in treatment decisions by patients from diverse cultural backgrounds. Seventeen participants (6 MDs, 9 RNs, and 2 NPs) were interviewed using a semi-structured guide. Interviews were analyzed using conventional content analysis. Findings revealed six barriers to patient involvement in decision-making: language, socio-economic status, educational status, gender, family attitudes, and healthcare providers' behavior and attitudes. Participants did not view culture itself as a barrier to patient involvement, but rather, noted culture-amplified barriers that occurred with patients across all cultural backgrounds. To overcome these barriers, a wider integration of cultural competence in patient care is needed.

Patient and Surgeon Ratings of Patient Involvement in Decision-Making Are Not Aligned.

Specialists want to guide patients toward making informed treatment choices consistent with what matters most to them (their values). One measure of this goal is alignment between patient and surgeon-perceived involvement in decision-making. We performed a cross-sectional survey of patients presenting for musculoskeletal specialty care to determine agreement between patients and surgeons regarding patient involvement in shared decision-making. We also tested (1) factors associated with specialist-perceived involvement, accounting for the patient's perceived involvement in decision-making, and (2) factors associated with patient perception of involvement in decision-making, accounting for ratings of preferred involvement. In this cross-sectional survey, 136 patients seeking musculoskeletal care for conditions involving the upper or lower extremities rated their preferred level of involvement in decision-making (Control Preferences Scale) before the visit and their perceived level of involvement (Modified Control Preferences Scale) after the visit. Participants also completed measures of symptoms of depression and pain self-efficacy. After the visit, the surgeons rated their perception of the patient's involvement in decision-making (Modified Control Preferences Scale). There was poor agreement between patients and surgeons regarding the extent of patient participation in decision-making (ICC = 0.11). The median difference was 1 point on a 5-point Likert scale (interquartile range: 0 to 1). Accounting for demographic characteristics and personal factors in multivariable analysis, specialists rated patients who did not have a high school diploma as having less involvement in decision-making. Specialist-perceived patient involvement in decision-making was not related to patient-perceived involvement. The only factor associated with higher patient-rated involvement was higher patient-preferred involvement (OR = 3.9; 95% CI = 2.6 to 5.8; p < 0.001). The observation that surgeons misperceive patient participation in decision-making emphasizes the need for strategies to ensure patient participation, such as methods to help patients gain awareness of what matters most to them (their values), clinician checklists for identification and reorientation of common misinterpretations of symptoms, and decision aids or motivational interviewing tools that can help to ensure that patient choices are consistent with their values and are unhindered by misconceptions.

The Decision-Making Process for Palliative Sedation for Patients with Advanced Cancer-Analysis from a Systematic Review of Prospective Studies.

Simple SummaryThe involvement of patients in decision making about their healthcare plans is being emphasized, but little is known how the decision making on palliative sedation is conducted and who are involved in. The aim of this study is to understand how decisions about palliative sedation are taken. The results may help to understand the reality of this decision-making considering when and by whom the decision-making process is initiated, patient involvement, family involvement and healthcare involvement. This may contribute to identifying aspects that should be improved.Background. The involvement of patients in decision making about their healthcare plans is being emphasized. In the context of palliative sedation, it is unclear how these decisions are made and who are involved in. The aim of the study is to understand how this decision-making is taken. Method. Information from a systematic review on clinical aspects of palliative sedation prospective studies were included. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014–December 2019). Data extraction and analysis regarded: (a) When and by whom the decision-making process is initiated; (b) patient involvement; (c) family involvement and (d) healthcare involvement. Results. Data about decision making were reported in 8/10 included articles. Palliative sedation was reported in 1137 patients (only 16 of them were non-cancer). Palliative sedation was introduced by the palliative care team during the disease process, at admission, or when patients experienced refractory symptoms. Only two studies explicitly mentioned the involvement of patients in decision making. Co-decision between families and the regular health care professionals was usual, and the health care professionals involved had been working in palliative care services. Conclusion. Patient participation in decision making appeared to be compromised by limited physical or cognitive capacity and family participation is described. The possibility of palliative sedation should be discussed earlier in the disease process.

Barriers to Patient Involvement in Decision-Making in Advanced Cancer Care: Culture as an Amplifier

In advanced cancer care, patient preferences regarding treatment are sometimes insufficiently integrated in the decision-making process. This can be the case with patients from non-Western cultural backgrounds undergoing treatment in the US. This study aimed to understand oncology and palliative care physicians’ and nurses’ perceptions of factors that impact involvement in treatment decisions by patients from diverse cultural backgrounds. Seventeen participants (6 MDs, 9 RNs, and 2 NPs) were interviewed using a semi-structured guide. Interviews were analyzed using conventional content analysis. Findings revealed six barriers to patient involvement in decision-making: language, socio-economic status, educational status, gender, family attitudes, and healthcare providers’ behavior and attitudes. Participants did not view culture itself as a barrier to patient involvement, but rather, noted culture-amplified barriers that occurred with patients across all cultural backgrounds. To overcome these barriers, a wider integration of cultural competence in patient care is needed.

Guidelines for the Prevention of Symptomatic Cardiovascular Disease, Based upon the Presence of Coronary Artery Calcified Plaque—Provided by the Society for the Prevention of Symptomatic Heart Disease

Introduction: The epidemic of atherosclerotic cardiovascular disease in the Western World accounts for the majority of morbidity and mortality in adults. This disease is on the increase, and previous recommendations using “risk equations” to prescribe preventive treatment have not been successful in reducing the prevalence of cardiovascular disease. Furthermore, compliance with statin medication has been limited, with approximately 50% of individuals being non-compliant within five years. This situation is unacceptable since atherosclerosis is both preventable and reversible. Methods: The guidelines presented in this article utilize coronary artery calcium scanning as the basis for preventative therapeutic decisions and identifying the presence of asymptomatic cardiovascular disease. This radiographic technique is superior to “risk equations” in predicting future cardiovascular events. It provides a comprehensive assessment of the lifelong insults to the coronary artery vascular endothelium and the resulting inflammation. Coronary artery calcium scanning is widely available, inexpensive, safe, and reproducible. It has the major advantage of increasing treatment compliance in patients with positive coronary artery calcium scores. Results: All suggested guidelines are supported by published scientific data. Citations are provided to allow the reader to obtain further information. The authors are available for further consultation. Each guideline provides specific recommendations that the primary caregiver can discuss with the patient. Patient involvement in decision-making is strongly recommended. Both treatment costs and adverse effects are minimal. Conclusion: It is anticipated that the early identification of asymptomatic cardiovascular disease and its aggressive treatment will result in regression of subclinical atherosclerosis. Adoption of these guidelines will stop the epidemic of symptomatic heart disease and result in healthier and more satisfied patients.

The challenge of involving old patients with polypharmacy in their medication during hospitalization in a medical emergency department: An ethnographic study.

More than 70% of patients admitted to emergency departments (EDs) in Denmark are older patients with multimorbidity and polypharmacy vulnerable to adverse events and poor outcomes. Research suggests that patient involvement and shared decision-making (SDM) could optimize the treatment of older patients with polypharmacy. The patients become more aware of potential outcomes and, therefore, often tend to choose less medication. However, implementing SDM in clinical practice is challenging if it does not fit into existing workflows and healthcare systems. The aim was to explore the determinants of patient involvement in decisions made in the ED about the patient's medication. The design was a qualitative ethnographic study. We observed forty-eight multidisciplinary healthcare professionals in two medical EDs focusing on medication processes and patient involvement in medication. Based on field notes, we developed a semi-structured interview guide. We conducted 20 semi-structured interviews with healthcare professionals to elaborate on the findings. Data were analyzed with thematic analyses. We found five themes (determinants) which affected patient involvement in decisions about medicine in the ED: 1) blurred roles among multidisciplinary healthcare professionals, 2) older patients with polypharmacy increase complexity, 3) time pressure, 4) faulty IT- systems, and 5) the medicine list as a missed enabler of patient involvement. There are several barriers to patient involvement in decisions about medicine in the ED and some facilitators. A tailored medication conversation guide based on the SDM methodology combined with the patient's printed medicine list and well-functioning IT- systems can function as a boundary object, ensuring the treatment is optimized and aligned with the patient's preferences and goals.

Limitation of life-sustaining treatment and patient involvement in decision-making: a retrospective study of a Danish COVID-19 patient cohort

BackgroundThe coronavirus (COVID-19) pandemic and the risk of an extensive overload of the healthcare systems have elucidated the need to make decisions on the level of life-sustaining treatment for patients requiring hospitalisation. The purpose of the study was to investigate the proportion and characteristics of COVID-19 patients with limitation of life-sustaining treatment decisions and the degree of patient involvement in the decisions.MethodsA retrospective observational descriptive study was conducted in three Danish regional hospitals, looking at all patients ≥ 18 years of age admitted in 2020 with COVID-19 as the primary diagnosis. Lists of hospitalised patients admitted due to COVID-19 were extracted. The data registration included age, gender, comorbidities, including mental state, body mass index, frailty, recent hospital admissions, COVID-19 life-sustaining treatment, ICU admission, decisions on limitations of life-sustaining treatment before and during current hospitalisation, hospital length of stay, and hospital mortality.ResultsA total of 476 patients were included. For 7% (33/476), a decision about limitation of life-sustaining treatment had been made prior to hospital admission. At the time of admission, one or more limitations of life-sustaining treatment were registered for 16% (75/476) of patients. During the admission, limitation decisions were made for an additional 11 patients, totaling 18% (86/476). For 40% (34/86), the decisions were either made by or discussed with the patient. The decisions not made by patients were made by physicians. For 36% (31/86), no information was disclosed about patient involvement.ConclusionsLife-sustaining treatment limitation decisions were made for 18% of a COVID-19 patient cohort. Hereof, more than a third of the decisions had been made before hospital admission. Many records lacked information on patient involvement in the decisions.

Primary care physician involvement during hospitalisation: a qualitative analysis of perspectives from frequently hospitalised patients

ObjectiveTo explore frequently hospitalised patients’ experiences and preferences related to primary care physician (PCP) involvement during hospitalisation across two care models.DesignQualitative study embedded within a randomised controlled trial. Semistructured interviews...

Usability and Perceived Usefulness of the AFib 2gether Mobile App in a Clinical Setting: Single-Arm Intervention Study.

BackgroundAlthough the American Heart Association and other professional societies have recommended shared decision-making as a way for patients with atrial fibrillation (AF) or atrial flutter to make informed decisions about using anticoagulation (AC), the best method for facilitating shared decision-making remains uncertain.ObjectiveThe aim of this study is to assess the AFib 2gether mobile app for usability, perceived usefulness, and the extent and nature of shared decision-making that occurred for clinical encounters between patients with AF and their cardiology providers in which the app was used.MethodsWe identified patients visiting a cardiology provider between October 2019 and May 2020. We measured usability from patients and providers using the Mobile App Rating Scale. From the 8 items of the Mobile App Rating Scale, we reported the average score (out of 5) for domains of functionality, esthetics, and overall quality. We administered a 3-item questionnaire to patients relating to their perceived usefulness of the app and a separate 3-item questionnaire to providers to measure their perceived usefulness of the app. We performed a chart review to track the occurrence of AC within 6 months of the index visit. We also audio recorded a subset of the encounters to identify evidence of shared decision-making.ResultsWe facilitated shared decision-making visits for 37 patients visiting 13 providers. In terms of usability, patients’ average ratings of functionality, esthetics, and overall quality were 4.51 (SD 0.61), 4.26 (SD 0.51), and 4.24 (SD 0.89), respectively. In terms of usefulness, 41% (15/37) of patients agreed that the app improved their knowledge regarding AC, and 62% (23/37) agreed that the app helped clarify to their provider their preferences regarding AC. Among providers, 79% (27/34) agreed that the app helped clarify their patients’ preferences, 82% (28/34) agreed that the app saved them time, and 59% (20/34) agreed that the app helped their patients make decisions about AC. In addition, 32% (12/37) of patients started AC after their shared decision-making visits. We audio recorded 25 encounters. Of these, 84% (21/25) included the mention of AC for AF, 44% (11/25) included the discussion of multiple options for AC, 72% (18/25) included a provider recommendation for AC, and 48% (12/25) included the evidence of patient involvement in the discussion.ConclusionsPatients and providers rated the app with high usability and perceived usefulness. Moreover, one-third of the patients began AC, and approximately 50% (12/25) of the encounters showed evidence of patient involvement in decision-making. In the future, we plan to study the effect of the app on a larger sample and with a controlled study design.Trial RegistrationClinicalTrials.gov NCT04118270; https://clinicaltrials.gov/ct2/show/NCT04118270International Registered Report Identifier (IRRID)RR2-21986

The effect of shared decision-making for stroke prevention on treatment adherence and safety outcomes in patients with atrial fibrillation: a randomized clinical trial

Abstract Background Guidelines promote shared decision-making (SDM) for anticoagulation in patients with atrial fibrillation (AF). We recently showed that adding a within-encounter SDM tool to usual care (UC) increases patient involvement in decision making and clinician satisfaction, without affecting encounter length. Purpose We aimed to estimate the extent to which use of an SDM tool affected patient adherence to the decided care plan and clinical safety endpoints. Methods We conducted a multi-center, encounter-level randomized trial assessing the efficacy of UC with vs. without an SDM conversation tool for use during the clinical encounter (Anticoagulation Choice, AC) in patients with non-valvular AF considering starting or reviewing anticoagulation treatment. We conducted a chart and pharmacy review, blinded to randomization status, at 10 months post-enrollment to assess primary adherence (proportion of patients who were prescribed an anticoagulant who filled their first prescription) and secondary adherence (estimated using the proportion of days for which treatment was supplied and filled [PDC] for DOAC, and as time in therapeutic range (TTR) for warfarin). We also followed for any safety outcomes (stroke [stroke or transient ischemic attack], major bleeding, or death). Results We enrolled 922 evaluable patient encounters (AC=463, UC=459), of which 814 (88%) had pharmacy and clinical follow-up. We found no differences between arms in either primary (78% of patients in AC filled their first prescription vs. 81% in UC) or secondary adherence to anticoagulation (see Figure, PDCDOAC was 74.1% in AC vs. 71.6% in UC; TTRwarfarin was 66.6% in AC vs. 64.4% in UC). PDCDOAC was better (65%) in AC than in UC (55%) (OR 1.49, CIs 1.00, 2.22). Safety outcomes, mostly bleeds, occurred in 13% (AC) of and 14% (UC) of participants. Conclusions This is the largest reported randomized trial in AF comparing usual care with and without an SDM tool to promote SDM. Although patients were more actively involved in SDM, we found no significant differences between arms in primary or secondary adherence to anticoagulation or clinical safety outcomes. Funding Acknowledgement Type of funding sources: Other. Main funding source(s): The trial was funded by and conducted independently of the National Heart, Lung, and Blood Institute (NHLBI) of the U.S. National Institutes of Health (RO1 HL131535-01). The funding body had no influence on the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. Figure 1

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.

Effects of patient-driven iCBT for anxiety in routine primary care and the relation between increased experience of empowerment and outcome: A randomized controlled trial

BackgroundThe World Health Organization has declared that primary care should be organized to empower individuals, families, and communities to optimize health. Internet cognitive behavioral therapy (iCBT) tailored by psychologists' initial assessments to meet patients' specific needs have shown promising effects. However, few studies have evaluated patient involvement in decisions during iCBT. AimThis study aimed to explore the effect of patient-driven iCBT compared to standard iCBT on perceived control over treatment, adherence, and level of anxiety symptoms. A secondary aim was to assess the relationship between changes in empowerment and changes in anxiety symptoms. MethodParticipants were patients recruited form primary care and assessed as meeting the criterion for an anxiety disorder. Participants were randomized to patient-driven iCBT (n = 27) or standard iCBT (n = 28). Patient-driven iCBT was adapted to participants' preferences regarding for example focus of treatment program and order of modules. Participants randomized to the control condition received the standard iCBT program for anxiety disorders at the participating unit. The outcome measures were patients' perceived control over treatment, adherence to treatment, symptoms of anxiety, depression and general disability as well as the experience of empowerment. ResultsParticipants in patient-driven iCBT had statistically higher perceived control over treatment (t(43) = 2.13, p = .04). Symptoms were significantly reduced in both arms with regards to anxiety, depression, and general disability. A significant time per condition interaction effect for anxiety symptoms was observed (df = 45.0; F = 3.055; p = .038), where the patient-driven condition had a significantly larger reduction in anxiety. For both groups a significant correlation of r = −0.47 was found between changes in empowerment and changes in anxiety. ConclusionResults indicate that iCBT that is patient-driven, may have a greater effect on anxiety, than standard iCBT. The effect on perceived control over treatment might also be larger in patient-driven treatments than in standard iCBT. Internet-based therapies inherently promote as active agents of their own care and might be well suited for promoting perceived control and empowerment. Findings need to be replicated given the small sample size and the explorative nature of the study. Clinical trials registrationNCT04688567

Making sense of diabetes medication decisions: a mixed methods cluster randomized trial using a conversation aid intervention

PurposeTo determine the effectiveness of a shared decision-making (SDM) tool versus guideline-informed usual care in translating evidence into primary care, and to explore how use of the tool changed patient perspectives about diabetes medication decision making.MethodsIn this mixed methods multicenter cluster randomized trial, we included patients with type 2 diabetes mellitus and their primary care clinicians. We compared usual care with or without a within-encounter SDM conversation aid. We assessed participant-reported decisions made and quality of SDM (knowledge, satisfaction, and decisional conflict), clinical outcomes, adherence, and observer-based patient involvement in decision-making (OPTION12-scale). We used semi-structured interviews with patients to understand their perspectives.ResultsWe enrolled 350 patients and 99 clinicians from 20 practices and interviewed 26 patients. Use of the conversation aid increased post-encounter patient knowledge (correct answers, 52% vs. 45%, p = 0.02) and clinician involvement of patients (Mean between-arm difference in OPTION12, 7.3 (95% CI 3, 12); p = 0.003). There were no between-arm differences in treatment choice, patient or clinician satisfaction, encounter length, medication adherence, or glycemic control. Qualitative analyses highlighted differences in how clinicians involved patients in decision making, with intervention patients noting how clinicians guided them through conversations using factors important to them.ConclusionsUsing an SDM conversation aid improved patient knowledge and involvement in SDM without impacting treatment choice, encounter length, medication adherence or improved diabetes control in patients with type 2 diabetes. Future interventions may need to focus specifically on patients with signs of poor treatment fit.Clinical trial registrationClinicalTrial.gov: NCT01502891.

Does greater patient involvement in healthcare decision-making affect malpractice complaints? A large case vignette survey.

Although research findings consistently find poor communication about medical procedures to be a key predictor of patient complaints, compensation claims, and malpractice lawsuits ("complaints"), there is insufficient evidence to determine if greater patient involvement could actually affect the inclination to complain. We conducted an experimental case vignette survey that explores whether greater patient involvement in decision-making is likely to influence the intention to complain given different decisions and consequences. Randomized, national case vignette survey with various levels of patient involvement, decisions, and outcomes in a representative Danish sample of men. We used prostate specific antigen (PSA) screening in men aged 45 to 70 years as the intervention illustrated in 30 different versions of a mock clinical encounter. Versions differed in the amount of patient involvement, the decision made (PSA test or no PSA test), and the clinical outcomes (no cancer detected, detection of treatable cancer, and detection of non-treatable cancer). We measured respondents' inclination to complain about care in response to the scenarios on a 5-point Likert scale (from 1: very unlikely to 5: very likely). The response rate was 30% (6,756 of 22,288). Across all scenarios, the likelihood of complaint increased if the clinical outcome was poor (untreatable cancer). Compared with scenarios that involved shared decision-making (SDM), neutral information, or nudging in favor of screening, the urge to complain increased if the patient was excluded from decision-making or if the doctor had nudged the patient to decline screening (mean Likert differences .12 to .16, p < .001). With neutral involvement or nudging in favor of intervention, the desire to complain depended highly on the decision reached and on the patient's course. This dependence was smaller with SDM. Greater patient involvement in decision-making appears to be associated with less intention to complain about health care, with SDM resulting in the greatest reduction in complaint likelihood.

Patient-Reported Roles in Decision-Making Among Asian Patients With Advanced Cancer: A Multicountry Study.

Purpose. We investigated 1) perceived roles in decision-making among advanced cancer patients in 5 Asian countries 2) associations of patient characteristics with these roles, and 3) the association of perceived roles with quality of life and perceived quality of care. Methods. We surveyed 1585 patients with stage IV solid cancer. Multinomial logistic regressions were used to analyze associations of patient characteristics with decision-making roles. Multivariate regressions were used to analyze associations of decision-making roles with quality of life and care. Results. The most common perceived-role was no patient involvement. Most patients (73%) reported roles consistent with their preferences. Being male, nonminority, higher educated, aware of advanced cancer diagnosis, and knowledge of cancer diagnosis for ≥1 year were associated with higher levels of patient involvement in decision-making. Compared to no patient involvement, joint decision-making (together with physicians/family) was associated with higher social (β = 2.49, P < 0.01) and spiritual (β = 2.64, P < 0.01) well-being, and better quality of physician communication (β = 9.73, P < 0.01) and care coordination (β = 13.96, P < 0.01) while making decisions alone was associated with lower emotional (β = −1.43, P < 0.01), social (β = −2.39, P < 0.01), and spiritual (β = −2.98, P < 0.01) well-being. Conclusions. Findings suggest that a substantial number of advanced cancer patients were not (and preferred not to be) involved in decision-making. Despite this finding, joint decision-making together with physicians/family was associated with better quality of life and care. Implications. Physicians should explain the benefits of shared decision making to patients and encourage participation in decision-making, while ensuring that patients feel supported and do not find decision-making overwhelming.