Preparation For Decision-making Research Articles

Iterative Development of an Interactive Website to Support Shared Decision-Making in Metastatic Breast Cancer.

Recent treatment advances have resulted in significantly increased survival times following metastatic breast cancer (MBC) diagnosis. Novel treatment approaches-and their related side effects-have changed the landscape of MBC treatment decision-making. We developed a prototype of an online educational tool to prepare patients with MBC for shared decision-making with their oncologists. We describe the five phases of tool development: (1) in-depth, semi-structured qualitative interviews and (2) feedback on storyboards of initial content with patients with MBC and oncology providers. This was followed by three phases of iterative feedback with patients in which they responded to (3) initial, non-navigable website content and (4) a beta version of the full website. In the final phase (5), patients newly diagnosed with MBC (N = 6) used the website prototype for 1week and completed surveys assessing acceptability, feasibility, treatment knowledge, preparation for decision-making, and self-efficacy for decision-making. Participants in Phase 1 characterized a cyclical process of MBC treatment decision-making and identified key information needs. Website content and structure was iteratively developed in Phases 2-4. Most participants in Phase 5 (n = 4) accessed the website 2-5 times. All participants who accessed the website at least once (n = 5) felt they learned new information from the website prototype and would recommend it to others newly-diagnosed with MBC. After using the website prototype, participants reported high preparation and self-efficacy for decision-making. This multiphase, iterative process resulted in a prototype intervention designed to support decision-making for MBC patients.

Effectiveness of evidence-based decision aids for women with pathogenic BRCA1 or BRCA2 variants in the german health care context: results from a randomized controlled trial

BackgroundWomen with pathogenic BRCA1 or BRCA2 variants are at high risk for breast and ovarian cancer. Preventive options include risk-reducing breast and ovarian surgeries and intensified breast surveillance. However, individual decision-making is often associated with decisional conflicts. Two evidence-based decision aids have recently been developed for these women (healthy or with unilateral breast cancer) for the German context to support them in their decision-making process. This study evaluated their effectiveness.MethodsIn a randomized controlled study, women (aged 18–70 years) with pathogenic BRCA1 or BRCA2 variants were randomly assigned 1:1 to the intervention (IG, n = 230) or control (CG, n = 220) group. All participants received usual care. After baseline survey (t0), IG participants additionally received the DAs. Follow-up surveys were at three (t1) and six (t2) months. Primary outcome was decisional conflict at t1. Secondary analyses included decision status, decision regret, knowledge on risks and preventive options, self-reported psychological symptoms, acceptability of DAs, and preparation for decision-making.ResultsOf 450 women recruited, 417 completed t0, 398 completed t1 and 386 completed t2. Compared to CG, IG participants had lower decisional conflict scores at t1 (p = 0.049) and t2 (p = 0.006) and higher scores for knowledge (p = 0.004), acceptability (p = 0.000), and preparation for decision-making (p < 0.01).ConclusionsThese DAs can help improve key parameters of decision-making in women with pathogenic BRCA1 and BRCA2 variants and, thus, provide a useful add-on to the current counseling and care concept for these women in Germany.Trial registrationGerman Clinical Trials Register, DRKS-ID: DRKS00015823, retrospectively registered 14/06/2019.

Smartphone-Based Video Antenatal Preterm Birth Education

Preterm birth is a leading cause of infant mortality and child morbidity. Preterm birth is not always unexpected, yet standard prenatal care does not offer anticipatory education to parents at risk of delivering preterm, which leaves parents unprepared to make health care choices during the pregnancy that can improve survival and decrease morbidity in case of preterm birth. To evaluate the effect of the Preemie Prep for Parents (P3) program on maternal knowledge of preterm birth, preparation for decision-making, and anxiety. Recruitment for this randomized clinical trial conducted at a US academic medical center took place from February 3, 2020, to April 12, 2021. A total of 120 pregnant persons with a risk factor for preterm birth were enrolled between 16 and 21 weeks' gestational age and followed up through pregnancy completion. Starting at 18 weeks' gestational age, P3 program participants received links delivered via text message to 51 gestational age-specific short animated videos. Control participants received links to patient education webpages from the American College of Obstetricians and Gynecologists. At 25 weeks' gestation, scores on the Parent Prematurity Knowledge Questionnaire (scored as percent correct), Preparation for Decision Making Scale (scored 0-100), and Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety computerized adaptive test. Analysis was based on an intention to treat. A total of 120 pregnant participants (mean [SD] age, 32.5 [4.9] years) were included in the study; 60 participants were randomized to each group. Participants in the P3 group scored higher than those in the control group on knowledge of long-term outcomes at 25 weeks (88.5% vs 73.2%; estimated difference, 15.3 percentage points; 95% CI, 8.3-22.5 percentage points; P < .001). Participants in the P3 group reported being significantly more prepared than did participants in the control group for neonatal resuscitation decision-making at 25 weeks (Preparation for Decision Making Scale score, 76.0 vs 52.3; difference, 23.7; 95% CI, 14.1-33.2). There was no difference between the P3 group and the control group in anxiety at 25 weeks (mean [SE] PROMIS Anxiety scores, 53.8 [1.1] vs 54.0 [1.1]; difference, -0.1; 95% CI, -3.2 to 2.9). In this randomized clinical trial, pregnant persons randomly assigned to the P3 program had more knowledge of core competencies and were more prepared to make decisions that affect maternal and infant health, without experiencing worse anxiety. Mobile antenatal preterm birth education may provide a unique benefit to parents with preterm birth risk factors. ClinicalTrials.gov Identifier: NCT04093492.

Patient decision aid for chemotherapy or exclusion in cisplatin-intolerant patients with locally advanced cervical cancer (CECIL): Development, alpha testing, and peer-validation.

e13506 Background: In locally advanced cervical cancer (LACC), adding chemotherapy (ChT) to radiotherapy (RT) improves survival but increases toxicity. In the Philippines, about 33% of cervical cancers are diagnosed in the elderly and about 36% present with ureteral obstruction. RT compliance may be compromised by cisplatin toxicity. Shared decision-making (SDM) better engages the patient in the decision-making and implementation planning process. Patient decision aids (PtDA) may increase knowledge and self-efficacy, thereby decreasing decisional conflict and attitudinal barriers and improving treatment compliance. Methods: The Interprofessional Shared Decision-Making Model was used as a conceptual framework. The PtDA defines the index decision, facilitates information exchange and examination of values and preferences, towards the determination of a practicable choice. Using a mixed-methods design and following International Patient Decision Aid Standards (IPDAS) guidelines, a steering panel consisting of radiation oncologists (RO) (2), gynecologic oncologists (GO) (1), oncology nurse (1), clinical psychologist (1), cancer survivor (1), and caregiver (1) developed the CECIL prototype, a PtDA for cisplatin-intolerant LACC patients faced with the decision of adding ChT to RT. The elements were based on the Decision Support Framework and the content, on current international and local guidelines, and a recent systematic review. The prototype was alpha-tested by the steering committee using the e-Delphi method. The PtDR Ottawa Acceptability Practitioner and Patient Questionnaires were used to evaluate comprehensibility, length, amount of information, neutrality, and overall suitability for decision-making. The prototype was then independently evaluated by local internal (RO, 1) and external (GO, 1), and international (RO, 1) reviewers using the IPDAS checklist version 4, which covers 9 relevant domains: information, probabilities, values, guidance, development, evidence, disclosure, plain language, and evaluation. Results: Alpha testing showed high practitioner acceptability (all items with mean and median scores ≥4; overall mean score 4.70/5) and good patient acceptability (all items good to excellent). Content validation showed that the PtDA satisfied all IPDAS qualifying (6) and certification (6) criteria, with high overall mean score (3.63/4) for applicable quality (17) criteria. All reviewers' comments were considered in the subsequent revision of the prototype. Conclusions: The CECIL prototype shows good practitioner and patient acceptability, and content validity on peer review. It will be pilot-tested and subjected to the phase 2 of the clinical trial (NCT05701735) to determine its utility in preparation for decision-making and effectiveness in reducing decisional conflict. Clinical trial information: NCT05701735 .

A Web-Based Decision Aid for Caregivers of Persons With Dementia With Firearm Access (Safe at Home Study): Protocol for a Randomized Controlled Trial.

Firearm safety among individuals with Alzheimer disease and related dementias (ADRD) is an underdiscussed and underresearched concern in the United States, especially given the growing population of community-dwelling adults with ADRD. The "Safety in Dementia" (SiD) web-based decision aid was developed to support caregivers in addressing firearm access; the efficacy of SiD is unknown. Through the SiD decision aid, the Safe at Home (S@H) study aims to support caregivers in making decisions about home safety that align with their goals and values, and behaviors regarding firearm access for persons with ADRD and firearm access. The S@H study is a 2-armed randomized controlled trial to test the effect of the SiD decision aid on caregivers of community-dwelling adults with ADRD who have firearm access. S@H aims to recruit 500 ADRD caregivers (age ≥18 years, fluent in English or Spanish, and in the United States) through online or social media advertisements and through relevant organizations. Participants are randomized to view SiD or a control website at their own pace; all participants complete web-based questionnaires at baseline, 2 weeks, 2 months, and 6 months. The primary outcome is immediate preparation for decision-making; secondary outcomes include longitudinal decision outcomes and self-reported modifications to firearm access. The relative reach and effectiveness of each recruitment method (online/social media and through relevant organizations) will be assessed by examining differences in caregiver participation, retention rates, and relative cost. The study enrollment began in May 2022. As of December 2022, a total of 117 participants had enrolled. The S@H study is the first randomized trial of a firearm safety decision aid for ADRD caregivers. The results from this study will inform how best to support caregivers in decision-making regarding firearm safety. Further, results may guide approaches for recruiting caregivers and for dissemination of resources. ClinicalTrials.gov NCT05173922; https://clinicaltrials.gov/ct2/show/NCT05173922. DERR1-10.2196/43702.

Patient-caregiver communication concordance in cancer—refinement of the Cancer Communication Assessment Tool in an Australian sample

PurposeThe objective of this study was to expand the international psychometric validation of the Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) within a sample of Australian cancer patients.MethodsSurvey data from 181 cancer patient-caregiver dyads ≥ 18 years of age with solid or haematological cancers were analysed (85.4% response rate). Spearman’s rho was used to examine the correlation between CCAT-P and CCAT-F scores and weighted kappa the agreement between them. Exploratory factor analysis using scree plot and Kaiser-Guttman criteria was conducted to evaluate the scale structure. Cronbach’s α and Pearson correlation coefficients were used to measure internal consistency and concurrent validity respectively.ResultsMean scores were the following: CCAT-P 46.2 (9.8), CCAT-F 45.7 (9.4), and CCAT-PF 24.1 (8.0). We confirmed the poor concordance between patient and caregiver reporting of items in the CCAT-PF, with all but two items having weighted kappa values < 0.20 and Spearman’s rho < 0.19. We derived a three-factor solution, disclosure, limitation of treatment, and treatment decision making, with reliability ranging from Cronbach’s α = 0.43–0.53. The CCAT-P and CCAT-F showed strong correlations with preparation for decision-making (CCAT-P: r = 0.0.92; CCATF: r = 0.0.93) but were weakly associated with patient/caregiver distress related with having difficult conversations on future care planning.ConclusionPreliminary validation of the CCAT-PF in the Australian setting has shown some similar psychometric properties to previously published studies, further supporting its potential utility as a tool to assess patient-caregiver dyadic communication.Trial registrationACTRN12620001035910 12/10/2020 retrospectively registered.

A MULTIMOORA-Based Risk Evaluation Approach for CCUS Projects by Utilizing D Numbers Theory

As the global climate warms, carbon emissions must be reduced in order to alleviate the human climate crisis. Carbon capture, utilization and storage (CCUS) is an emerging technology that can reduce carbon emissions. However, most of the CCUS projects have ended in failure. The reason can be attributed to insufficient risk assessment. To this end, the purpose of this study is to construct a comprehensive risk assessment model for CCUS projects. The main body of this research is divided into two parts. First, in order to evaluate the CCUS project, a risk indicator system is constructed. In what follows, a decision-making framework for risk assessment under the D numbers environment is proposed, including two stages of decision-making preparation and decision-making process. The main task of the preparation stage is to gather evaluation experts and collect decision-making information. In the decision-making stage, this paper takes the D numbers theory as the core (acting on the effective expression and fusion of subjective evaluation information), respectively, proposes the method of determining the weight of risk evaluators, the fusion method of decision-making information from different experts, and the comprehensive decision model based on the MULTIMOORA method. In order to verify the effectiveness of the constructed model, the case of CCUS project site selection in Shengli power plant is analyzed, and the results showed that the third site is the best option. This study finds the importance of a comprehensive and timely risk assessment for the successful implementation of CCUS projects, and suggests that stakeholders carry out a risk assessment of CCUS projects prior to implementation based on the method presented in this paper, so as to improve the success rate.

Evaluation of two evidence-based decision aids for female BRCA1/2 mutation carriers in Germany: study protocol for a randomised controlled parallel-group trial

BackgroundWomen with BRCA1/2 mutations have a higher risk of developing breast and ovarian cancer compared to women of the general population. Various preventive options are available to deal with the increased risk of developing cancer. These include intensified breast cancer screening and risk-reducing bilateral mastectomy and salpingo-oophorectomy. The choice of a preventive option can lead to increased decisional conflict. To support these women in their decision-making process, two evidence-based decision aids were developed in an upstream research process and adapted to the German healthcare context. These will be evaluated within a randomised controlled trial (RCT) in terms of their effects on decision-making, women’s level of information and psychological outcome variables.MethodsA sample of 310 women carrying BRCA1/2 mutations (A) without a history of cancer or (B) with a history of unilateral breast cancer who have received post-test genetic counselling will be enrolled. Upon study consent, women will be randomly assigned to either the intervention or the control group. All participants will receive standard care including a physician’s letter summarising the counselling content. After baseline data collection (t0), the intervention group receives the respective decision aid while the control group receives standard care only. The primary outcome variable assessed at a 3-month follow-up (t1) is the change of extent in decisional conflict (measured with the Decisional Conflict Scale). Secondary outcome variables comprise the stage of decision-making, self-reported symptoms of anxiety, depression and stress due to the genetic test result, and knowledge regarding cancer risks and preventive options. At t1, the extent of preparation for decision-making and acceptability of the decision aids will also be examined. Another secondary outcome variable assessed at 6-month follow-up (t2) is the extent of decision regret.DiscussionThese will be the first decision aids available for BRCA1/2 mutation carriers in Germany to be evaluated regarding their effectiveness and acceptability in clinical use within an RCT. Subsequently, they are to be integrated into the care concept of the centres of the German Consortium for Hereditary Breast and Ovarian Cancer and the affiliated breast centres.Trial registration {2a}DRKS DRKS00015823. Retrospectively registered on 14 June 2019

Patient–caregiver dyads advance care plan value discussions: randomised controlled cancer trial of video decision support tool

ObjectiveUptake of advance care planning (ACP) in cancer remains low. An emphasis on personal value discussions and adoption of novel interventions may serve as the catalyst to increase engagement. This...

Video decision support tool promoting values conversations in advanced care planning in cancer: protocol of a randomised controlled trial

BackgroundViews on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and life goals, patient-caregiver communication and decision making, and family preparation. This study will evaluate the potential utility of a video decision support tool (VDST) that models values-based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared-decisions when completing ACP’s.MethodsThis open-label, parallel-arm, phase II randomised control trial will recruit cancer patient-caregiver dyads across a large health network. Previously used written vignettes will be converted to video vignettes using the recommended methodology. Participants will be ≥18 years and be able to complete questionnaires. Dyads will be randomised in a 1:1 ratio to a usual care (UC) or VDST group. The VDST group will watch a video of several patient-caregiver dyads communicating personal values across different cancer trajectory stages and will receive verbal and written ACP information. The UC group will receive verbal and written ACP information. Patient and caregiver data will be collected individually via an anonymous questionnaire developed for the study, pre and post the UC and VDST intervention.Our primary outcome will be ACP completion rates. Secondarily, we will compare patient-caregiver (i) attitudes towards ACP, (ii) congruence in communication, and (iii) preparation for decision-making.ConclusionWe need to continue to explore innovative ways to engage cancer patients in ACP. This study will be the first VDST study to attempt to integrate values-based conversations into an ACP intervention. This pilot study’s findings will assist with further refinement of the VDST and planning for a future multisite study.Trial registrationAustralian New Zealand Clinical Trials Registry No: ACTRN12620001035910. Registered 12 October 2020. Retrospectively registered.

Effectiveness of Decision Aid in Men with Localized Prostate Cancer: a Multicenter Randomized Controlled Trial at Tertiary Referral Hospitals in an Asia Pacific Country.

There are several treatment options for localized prostate cancer with very similar outcome but vary in terms of technique and side effect profiles and risks. Considering the potential difficulty in choosing the best treatment, a patient decision aid (PDA) is used to help patients in their decision-making process. However, the use and applicability of PDA in a country in Asia Pacific region like Malaysia is still unknown. This study aims to evaluate the effectiveness of a PDA modified to the local context in improving patients' knowledge, decisional conflict, and preparation for decision making among men with localized prostate cancer. Sixty patients with localized prostate cancer were randomly assigned to control and intervention groups. A self-administered questionnaire, which evaluate the knowledge on prostate cancer (23 items), decisional conflict (10 items) and preparation for decision-making (10 items), was given to all participants at pre- and post-intervention. Data were analyzed using independent T test and paired T test. The intervention group showed significant improvement in knowledge (p = 0.02) and decisional conflict (p = 0.01) from baseline. However, when compared between the control and intervention groups, there were no significant differences at baseline and post-intervention on knowledge, decisional conflict and preparation for decision-making. A PDA on treatment options of localized prostate cancer modified to the local context in an Asia Pacific country improved patients' knowledge and decisional conflict but did not have significant impact on the preparation for decision-making. The study was also registered under the Australian New Zealand Clinical Trials Registry (ANZCTR), ACTRN12614000668606 registered on 25/06/2014.

Effectiveness of the Genomics ADvISER decision aid for the selection of secondary findings from genomic sequencing: a randomized clinical trial

PurposeTo evaluate the effectiveness of the Genomics ADvISER (www.genomicsadviser.com) decision aid (DA) for selection of secondary findings (SF), compared with genetic counseling alone. MethodsA randomized controlled trial (RCT) was conducted to evaluate whether the Genomics ADvISER is superior to genetic counseling when hypothetically selecting SF. Participants were randomized to use the DA followed by discussion with a genetic counselor, or to genetic counseling alone. Surveys were administered at baseline and post-intervention. Primary outcome was decisional conflict. Secondary outcomes were knowledge, preparation for, and satisfaction with decision-making, anxiety, and length of counseling session. ResultsParticipants (n = 133) were predominantly White/European (74%), female (90%), and ≥50 years old (60%). Decisional conflict (mean difference 0.05; P = 0.60), preparation for decision-making (0.17; P = 0.95), satisfaction with decision (–2.18; P = 0.06), anxiety (0.72; P = 0.56), and knowledge of sequencing limitations (0.14; P = 0.70) did not significantly differ between groups. However, intervention participants had significantly higher knowledge of SF (0.39; P < 0.001) and sequencing benefits (0.97; P = 0.01), and significantly shorter counseling time (24.40 minutes less; P < 0.001) ConclusionsThe Genomics ADvISER did not decrease decisional conflict but reduced counseling time and improved knowledge. This decision aid could serve as an educational tool, reducing in-clinic time and potentially health care costs.

Effect of a Patient Decision Aid on Lung Cancer Screening Decision-Making by Persons Who Smoke

Lung cancer screening with low-dose computed tomography lowers lung cancer mortality but has potential harms. Current guidelines support patients receiving information about the benefits and harms of lung cancer screening during decision-making. To examine the effect of a patient decision aid (PDA) about lung cancer screening compared with a standard educational material (EDU) on decision-making outcomes among smokers. This randomized clinical trial was conducted using 13 state tobacco quitlines. Current and recent tobacco quitline clients who met age and smoking history eligibility for lung cancer screening were enrolled from March 30, 2015, to September 12, 2016, and followed up for 6 months until May 5, 2017. Data analysis was conducted between May 5, 2017, and September 30, 2018. Participants were randomized to the PDA video Lung Cancer Screening: Is It Right for Me? (n = 259) or to EDU (n = 257). The primary outcomes were preparation for decision-making and decisional conflict measured at 1 week. Secondary outcomes included knowledge, intentions, and completion of screening within 6 months of receiving the intervention measured by patient report. Of 516 quit line clients enrolled, 370 (71.7%) were younger than 65 years, 320 (62.0%) were female, 138 (26.7%) identified as black, 47 (9.1%) did not have health insurance, and 226 (43.8%) had a high school or lower educational level. Of participants using the PDA, 153 of 227 (67.4%) were well prepared to make a screening decision compared with 108 of 224 participants (48.2%) using EDU (odds ratio [OR], 2.31; 95% CI, 1.56-3.44; P < .001). Feeling informed about their screening choice was reported by 117 of 234 participants (50.0%) using a PDA compared with 66 of 233 participants (28.3%) using EDU (OR, 2.56; 95% CI, 1.72-3.79; P < .001); 159 of 234 participants (68.0%) using a PDA compared with 110 of 232 (47.4%) participants using EDU reported being clear about their values related to the harms and benefits of screening (OR, 2.37; 95% CI, 1.60-3.51; P < .001). Participants using a PDA were more knowledgeable about lung cancer screening than participants using EDU at each follow-up assessment. Intentions to be screened and screening behaviors did not differ between groups. In this study, a PDA delivered to clients of tobacco quit lines improved informed decision-making about lung cancer screening. Many smokers eligible for lung cancer screening can be reached through tobacco quit lines. ClinicalTrials.gov identifier: NCT02286713.

A psychometric evaluation of the Family Decision-Making Self-Efficacy Scale among surrogate decision-makers of the critically ill.

The purpose of this study was to report the psychometric properties, in terms of validity and reliability, of the Unconscious Version of the Family Decision-Making Self-Efficacy Scale (FDMSE). A convenience sample of 215 surrogate decision-makers for critically ill patients undergoing mechanical ventilation was recruited from four intensive care units at a tertiary hospital. Cross-sectional data were collected from participants between days 3 and 7 of a decisionally impaired patient's exposure to acute mechanical ventilation. Participants completed a self-report demographic form and subjective measures of family decision-making self-efficacy, preparation for decision-making, and decisional fatigue. Exploratory factor analyses, correlation coefficients, and internal consistency reliability estimates were computed to evaluate the FDMSE's validity and reliability in surrogate decision-makers of critically ill patients. The exploratory factor analyses revealed a two-factor, 11-item version of the FDMSE was the most parsimonious in this sample. Furthermore, modified 11-item FDMSE demonstrated discriminant validity with the measures of fatigue and preparation for decision-making and demonstrated acceptable internal consistency reliability estimates. This is the first known study to provide evidence for a two-factor structure for a modified, 11-item FDMSE. These dimensions represent treatment and palliation-related domains of family decision-making self-efficacy. The modified FDMSE is a valid and reliable instrument that can be used to measure family decision-making self-efficacy among surrogate decision-makers of the critically ill.

Experiences with and outcomes of Advance Care Planning in bereaved relatives of frail older patients: a mixed methods study.

Advance Care Planning (ACP) may prepare relatives of frail older patients for future decision-making. to investigate (1) how bereaved relatives of frail older patients experience ACP conversations and (2) whether ACP has an effect on relatives' preparation for decision-making and on their levels of anxiety and depression. cluster randomised controlled trial. residential care homes in the Netherlands and community setting. bereaved relatives of care home residents and community-dwelling frail older patients. we randomised 16 residential care homes to either the intervention group, where patient-participants were offered facilitated ACP, or the control group (n = 201), where they received 'care as usual'. If patient-participants died, we approached relatives for an interview. We asked relatives who had attended ACP conversations for their experience with ACP (open-ended questions). Furthermore, we compared relatives' preparation levels for decision-making and levels of anxiety and depression (HADS) between groups. This trial was registered (NTR4454). we conducted interviews with 39/51 (76%) bereaved relatives (intervention group: n = 20, control group: n = 19). Relatives appreciated the ACP conversations. A few considered ACP redundant since they were already aware of the patients' preferences. Nine of 10 relatives in the intervention group felt adequately prepared for decision-making as compared to 5 of 11 relatives in the control group (P = 0.03). Relatives' levels of anxiety and depression did not differ significantly between groups. in our study, bereaved relatives of frail older patients appreciated ACP. ACP positively affected preparedness for decision-making. It did not significantly affect levels of anxiety or depression.

Randomised controlled trial of a repeated consultation support intervention for patients with colorectal cancer.

UK healthcare policy for improving cancer outcomes supports participation of patients in care decisions with clinicians. Consultation Planning, Recording and Summarising (CPRS) has shown evidence of increasing patient decision self-efficacy, reducing uncertainty, and regret of decisions. This is the first trial of CPRS within the colorectal cancer population and delivered over serial medical consultations. This randomised controlled trial compared usual care to the addition of CPRS over consecutive oncology consultations with newly diagnosed colorectal cancer (CRC) patients in Edinburgh, Scotland. The study primarily evaluated patients' perception of their decision self-efficacy, preparation for decision-making, decisional conflict, and decisional regret, with secondary measures of anxiety and depression. Compared with usual care, overall, the intervention group reported significantly higher decision self-efficacy (P=0.001) and preparation for decision-making (P<0.001) and significantly lower decisional conflict (P=0.018) and regret (P=0.039). The repeated intervention patients felt significantly better prepared for each consultation (P<0.05); reported higher DSE before (P=0.05) and after (P=0.031) consultation one, and after consultation three (P=0.004); and reported lower decisional conflict after consultation two (P=0.007). Analyses comparing groups over time on decisional variables and anxiety and depression were underpowered because of attrition. Among colorectal cancer patients, CPRS was associated with decisional benefits before and after each consultation and 3months after the last consultation. It appears that CPRS patients began their first medical consultation on a better trajectory but did not widen the gap over time. More research is needed on the benefits of CPRS being administered once or consecutively.

Phase II Randomised Controlled Trial of a patient decision-aid website to improve treatment decision-making for young adults with bipolar II disorder: A feasibility study protocol.

Background/aimsThis paper describes the protocol for a feasibility study for a parallel Phase II randomised control trial (RCT) aiming to evaluate a novel decision-aid website (e-DA) to support young adults with bipolar II disorder (BPII), and their families.Material and methodsThe e-DA was developed according to the International Patient Decision-Aid Standards (IPDAS). Participants will be 40 young adults (18–30 years) referred to a specialist outpatient clinical facility, who have a confirmed clinical diagnosis of BPII. Participants will be randomised (1:1) to receive access to the clinic's online factsheets/website with (Intervention) or without (Control) the e-DA. A series of validated and purpose-designed questionnaires will be administered at baseline (T0), immediately post-decision (T1), and 3 months post-decision (T2). Questionnaires assess key decision-making constructs related to decision-making quality, including: decisional conflict, subjective and objective treatment knowledge, values-based informed choice, concordance between preferred/actual decision-making involvement, preparation for decision-making, and decisional regret. Self-report symptom severity and anxiety will ascertain the safety of e-DA use. The focus of analyses will be to assess effect sizes, in order to guide a future RCT.DiscussionThis feasibility study will evaluate a world first, evidence-based online decision-support resource, a DA website, for young adults with BPII and their families who are deciding on treatment options for relapse prevention. Findings will determine the e-DA's feasibility in RCT procedures (i.e., outpatient clinical setting) and provide estimates of effect sizes on outcomes related to improving treatment decision-making and patient outcomes in a sample of potential end-users, compared to usual care.Trial registrationThis trial is registered with the Australian New Zealand Clinical Trials Registry (ANZCTR) - ACTRN12617000840381.

Impact of a web-based prostate cancer treatment decision aid on patient-reported decision process parameters: results from the Prostate Cancer Patient Centered Care trial

PurposeTo compare patients’ evaluation of the treatment decision-making process in localized prostate cancer between counseling that included an online decision aid (DA) and standard counseling.MethodsEighteen Dutch hospitals were randomized to DA counseling (n = 235) or the control group with standard counseling (n = 101) in a pragmatic, cluster randomized controlled trial. The DA was provided to patients at, or soon after diagnosis. Decisional conflict, involvement, knowledge, and satisfaction with information were assessed with a questionnaire after treatment decision-making. Anxiety and depression served as covariates.ResultsThe levels of decision involvement and conflict were comparable between patients in both groups. Patients with a DA felt more knowledgeable but scored equally well on a knowledge test as patients without a DA. Small significant negative effects were found on satisfaction with information and preparation for decision-making. A preference for print over online and depression and anxiety symptoms was negatively associated with satisfaction and conflict scores in the DA group.DiscussionThe DA aimed to support shared decision-making, while outcomes for a majority of DA users were comparable to patients who received standard counseling. Patients, who are less comfortable with the online DA format or experience anxiety or depression symptoms, could require more guidance toward shared decision-making. To evaluate long-term DA effects, follow-up evaluation on treatment satisfaction and decisional regret will be done.

Evaluation of a decision aid for incidental genomic results, the Genomics ADvISER: protocol for a mixed methods randomised controlled trial

IntroductionGenome sequencing, a novel genetic diagnostic technology that analyses the billions of base pairs of DNA, promises to optimise healthcare through personalised diagnosis and treatment. However, implementation of genome sequencing...

Emotion evolutions of sub-topics about popular events on microblogs

PurposeThe development of social media has led to large numbers of internet users now producing massive amounts of user-generated content (UGC). UGC, which shows users’ opinions about events directly, is valuable for monitoring public opinion. Current researches have focused on analysing topic evolutions in UGC. However, few researches pay attention to emotion evolutions of sub-topics about popular events. Important details about users’ opinions might be missed, as users’ emotions are ignored. This paper aims to extract sub-topics about a popular event from UGC and investigate the emotion evolutions of each sub-topic.Design/methodology/approachThis paper first collects UGC about a popular event as experimental data and conducts subjectivity classification on the data to get subjective corpus. Second, the subjective corpus is classified into different emotion categories using supervised emotion classification. Meanwhile, a topic model is used to extract sub-topics about the event from the subjective corpora. Finally, the authors use the results of emotion classification and sub-topic extraction to analyze emotion evolutions over time.FindingsExperimental results show that specific primary emotions exist in each sub-topic and undergo evolutions differently. Moreover, the authors find that performance of emotion classifier is optimal with term frequency and relevance frequency as the feature-weighting method.Originality/valueTo the best of the authors’ knowledge, this is the first research to mine emotion evolutions of sub-topics about an event with UGC. It mines users’ opinions about sub-topics of event, which may offer more details that are useful for analysing users’ emotions in preparation for decision-making.