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Summary: Restless legs syndrome (RLS) is a common neurological disorder characterised by an urge to move arms and legs, usually associated with discomfort, pain, motor restlessness, and sleep disturbance. An individually adapted treatment is needed but difficult to optimise, which makes shared decision‐making (SDM) important. However, brief validated instruments on how patients with RLS perceive their involvement in treatment decisions are lacking. Therefore, the aim was to validate two instruments, SURE (Sure of myself, Understand information, Risk–benefit ratio, Encouragement, i.e., to assess decisional conflict) and CollaboRATE (brief patient survey focused on SDM, i.e., to assess SDM), in patients with RLS. A cross‐sectional design, including 788 participants with RLS (65% females, mean [SD] age 70.8 [11.4] years) from a national patient organisation for RLS, was used. A postal survey was sent out to collect data regarding weight, height, comorbidities, demographics, and RLS‐related treatment data. The following instruments were included: the SURE, CollaboRATE, Restless Legs Syndrome‐6 Scale, and eHealth Literacy Scale. Confirmatory factor analysis and Rasch models were used to assess the validity and reliability of the SURE and CollaboRATE. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age, gender, and medication groups were assessed. The SURE and CollaboRATE were both identified as unidimensional instruments with satisfactory internal consistency. No DIF across age and gender was identified, while significant DIF was observed for both the SURE and CollaboRATE regarding medication use categories. However, both the SURE and CollaboRATE are potential instruments to be used in research, but also as reflection tools by healthcare professionals, patients, and students to explore and assess SDM, and support its development in clinical care. [ABSTRACT FROM AUTHOR]

STUDY QUESTION Does a purpose-designed Decision Aid for women considering elective egg freezing (EEF) impact decisional conflict and other decision-related outcomes? SUMMARY ANSWER The Decision Aid reduces decisional conflict, prepares women for decision-making, and does not cause distress. WHAT IS ALREADY KNOWN Elective egg-freezing decisions are complex, with 78% of women reporting high decisional conflict. Decision Aids are used to support complex health decisions. We developed an online Decision Aid for women considering EEF and demonstrated that it was acceptable and useful in Phase 1 testing. STUDY DESIGN, SIZE, DURATION A single-blind, two-arm parallel group randomized controlled trial was carried out. Target sample size was 286 participants. Randomization was 1:1 to the control (existing website information) or intervention (Decision Aid plus existing website information) group and stratified by Australian state/territory and prior IVF specialist consultation. Participants were recruited between September 2020 and March 2021 with outcomes recorded over 12 months. Data were collected using online surveys and data collection was completed in March 2022. PARTICIPANTS/MATERIALS, SETTING, METHODS Females aged ≥18 years, living in Australia, considering EEF, proficient in English, and with internet access were recruited using multiple methods including social media posts, Google advertising, newsletter/noticeboard posts, and fertility clinic promotion. After completing the baseline survey, participants were emailed their allocated website link(s). Follow-up surveys were sent at 6 and 12 months. Primary outcome was decisional conflict (Decisional Conflict Scale). Other outcomes included distress (Depression Anxiety and Stress Scale), knowledge about egg freezing and female age-related infertility (study-specific measure), whether a decision was made, preparedness to decide about egg freezing (Preparation for Decision-Making Scale), informed choice (Multi-Dimensional Measure of Informed Choice), and decision regret (Decision Regret Scale). MAIN RESULTS AND THE ROLE OF CHANCE Overall, 306 participants (mean age 30 years; SD: 5.2) were randomized (intervention n = 150, control n = 156). Decisional Conflict Scale scores were significantly lower at 12 months (mean score difference: −6.99 [95% CI: −12.96, −1.02], P  = 0.022) for the intervention versus control group after adjusting for baseline decisional conflict. At 6 months, the intervention group felt significantly more prepared to decide about EEF than the control (mean score difference: 9.22 [95% CI: 2.35, 16.08], P  = 0.009). At 12 months, no group differences were observed in distress (mean score difference: 0.61 [95% CI: −3.72, 4.93], P  = 0.783), knowledge (mean score difference: 0.23 [95% CI: −0.21, 0.66], P  = 0.309), or whether a decision was made (relative risk: 1.21 [95% CI: 0.90, 1.64], P  = 0.212). No group differences were found in informed choice (relative risk: 1.00 [95% CI: 0.81, 1.25], P  = 0.983) or decision regret (median score difference: −5.00 [95% CI: −15.30, 5.30], P  = 0.337) amongst participants who had decided about EEF by 12 months (intervention n = 48, control n = 45). LIMITATIONS, REASONS FOR CAUTION Unknown participant uptake and potential sampling bias due to the recruitment methods used and restrictions caused by the coronavirus disease 2019 pandemic. Some outcomes had small sample sizes limiting the inferences made. The use of study-specific or adapted validated measures may impact the reliability of some results. WIDER IMPLICATIONS OF THE FINDINGS This is the first randomized controlled trial to evaluate a Decision Aid for EEF. The Decision Aid reduced decisional conflict and improved women's preparation for decision making. The tool will be made publicly available and can be tailored for international use. STUDY FUNDING/COMPETING INTEREST(S) The Decision Aid was developed with funding from the Royal Women's Hospital Foundation and McBain Family Trust. The study was funded by a National Health and Medical Research Council (NHMRC) Project Grant APP1163202, awarded to M. Hickey, M. Peate, R.J. Norman, and R. Hart (2019–2021). S.S. M.P. D.K. and S.B. were supported by the NHMRC Project Grant APP1163202 to perform this work. R.H. is Medical Director of Fertility Specialists of Western Australia and National Medical Director of City Fertility. He has received grants from MSD, Merck-Serono, and Ferring Pharmaceuticals unrelated to this study and is a shareholder of CHA-SMG. R.L. is Director of Women's Health Melbourne (Medical Practice), ANZSREI Executive Secretary (Honorary), RANZCOG CREI Subspecialty Committee Member (Honorary), and a Fertility Specialist at Life Fertility Clinic Melbourne and Royal Women's Hospital Public Fertility Service. R.A.A. has received grants from Ferring Pharmaceuticals unrelated to this study. M.H. K.H. and R.J.N. have no conflicts to declare. TRIAL REGISTRATION NUMBER ACTRN12620001032943 TRIAL REGISTRATION DATE 11 August 2020 DATE OF FIRST PATIENT'S ENROLMENT 29 September 2020 [ABSTRACT FROM AUTHOR]

Objectives: Decision‐making for patients with a locally advanced laryngeal carcinoma (T3 and T4) is challenging due to the treatment choice between organ preservation and laryngectomy, both with different and high impact on function and quality of life (QoL). The complexity of these treatment decisions and their possible consequences might lead to decisional conflict (DC). This study aimed to explore the level of DC in locally advanced laryngeal carcinoma patients facing curative decision‐making, and to identify possible associated factors. Methods: In this multicenter prospective cohort study, participants completed questionnaires on DC, level of shared decision‐making (SDM), and a knowledge test directly after counseling and 6 months after treatment. Descriptive statistics and Spearman correlation tests were used to analyze the data. Results: Directly after counseling, almost all participants (44/45; 98%) experienced Clinically Significant DC score (CSDC >25, scale 0–100). On average, patients scored 47% (SD 20%) correct on the knowledge test. Questions related to radiotherapy were answered best (69%, SD 29%), whilst only 35% (SD 29%) of the questions related to laryngectomy were answered correctly. Patients' perceived level of SDM (scale 0–100) was 70 (mean, SD 16.2), and for physicians this was 70 (SD 1.7). Conclusion: Most patients with advanced larynx cancer experience high levels of DC. Low knowledge levels regarding treatment aspects indicate a need for better patient counseling. Level of Evidence: 4 Laryngoscope, 134:3604–3610, 2024 [ABSTRACT FROM AUTHOR]

Background Nearly 40% of unplanned pregnancies in the USA are the result of inconsistent or incorrect contraceptive use. Finding ways to increase women's comfort and satisfaction with contraceptive use is therefore critical to public health. One promising pathway for improving patient outcomes is through the use of digital decision aids that assist women and their physicians in choosing a contraceptive option that women are comfortable with. Testing the ability of these aids to improve patient outcomes is therefore a necessary first step toward incorporating this technology into traditional physician appointments. Purpose To evaluate the effectiveness of a novel contraceptive decision aid at minimizing decisional conflict and increasing comfort with contraception among adult women. Methods In total, 310 adult women were assigned to use either the Tuune contraceptive decision aid or a control aid modeled after a leading online contraceptive prescriber's patient intake form. Participants then completed self-report measures of decisional conflict, contraceptive expectations, satisfaction, and contraceptive use intentions. Individual between-subjects analysis of variance (ANOVA) models were used to examine these outcomes. Results Women using the Tuune decision aid (vs. those using the control aid) reported lower decisional conflict, more positive contraceptive expectations, greater satisfaction with the decision aid and recommendation, and more positive contraceptive use intentions. Conclusions Use of Tuune improved each of the predicted patient outcomes relative to a control decision aid. Online decision aids, particularly when used alongside physician consultations, may be an effective tool for increasing comfort with contraceptive use. Clinical Trials Registration # NCT05177783 , ClinicalTrials.gov, https://clinicaltrials.gov/ct2/show/NCT05177783 [ABSTRACT FROM AUTHOR]

INTRODUCTION: Patients with acute uncomplicated appendicitis will be increasingly asked to choose between surgery and antibiotic management. We developed a novel decision aid for patients in the emergency department (ED) with acute appendicitis who are facing this choice. We describe the development of the decision aid and an initial feasibility study of its implementation in a busy tertiary care ED. MATERIALS AND METHODS: We conducted a prepost survey analysis comparing patients before and after standardized implementation of the decision aid. Patients were surveyed about their experience making treatment decisions after discharge from the hospital. The primary outcome measure was the total score on the decisional conflict scale (; 0-100; lower scores better). RESULTS: The study included 24 participants (12 in the predecision aid period; 12 in the post period). Only 33% of participants in each group knew antibiotics were a treatment option prior to arriving at the ED. Prior to implementing the use of decision aid, only 75% of patients reported being told antibiotics were a treatment option, while this increased to 100% after implementation of the decision aid. The mean total decisional conflict scalescores were similar in the pre and post periods (mean difference = 0.13, 95% CI: -13 - 13, P > 0.9). CONCLUSIONS: This novel appendicitis decision aid was effectively integrated into clinical practice and helped toinform patients about multiple treatment options. These data support further large-scale testing of the decision aid as part of standardized pathways for the management of patients with acute appendicitis.

Julia Sabin,1 Elisa Salas,2 Jesús Martín-Martínez,3 Antonio Candeliere-Merlicco,4 Francisco Javier Barrero Hernández,5 Ana María Alonso Torres,6 José Luis Sánchez-Menoyo,7 Laura Borrega,8 María Rodríguez-Rodríguez,9 Montserrat Gómez-Gutiérrez,10 Sara Eichau,11 Miguel Ángel Hernández-Pérez,12 Carmen Calles,13 Eva Fernandez-Diaz,14 Olga Carmona,15 Aida Orviz,16 Ana López-Real,17 Pablo López-Muñoz,18 Amelia Mendoza Rodríguez,19 Eduardo Aguera-Morales,20 Jorge Maurino2 1Department of Neurology, Hospital Universitario Puerta de Hierro, Madrid, Spain; 2Medical Department, Roche Farma, Madrid, Spain; 3Department of Neurology, Hospital Universitario Miguel Servet, Zaragoza, Spain; 4Department of Neurology, Hospital Rafael Méndez, Lorca, Spain; 5Department of Neurology, Hospital Clínico Universitario San Cecilio, Granada, Spain; 6Department of Neurology, Hospital Regional Universitario de Málaga, Málaga, Spain; 7Department of Neurology, Hospital de Galdakao-Usansolo, Galdakao, Spain; 8Department of Neurology, Hospital Universitario Fundación Alcorcón, Alcorcón, Spain; 9Department of Neurology, Hospital Universitario Lucus Augusti, Lugo, Spain; 10Department of Neurology, Hospital San Pedro de Alcántara, Cáceres, Spain; 11Department of Neurology, Hospital Universitario Virgen Macarena, Sevilla, Spain; 12Department of Neurology, Hospital Universitario Nuestra Señora de Candelaria, Tenerife, Spain; 13Department of Neurology, Hospital Universitario Son Espases, Palma de Mallorca, Spain; 14Department of Neurology, Hospital Universitario de Albacete, Albacete, Spain; 15Department of Neurology, Fundació Salut Empordà, Figueres, Spain; 16Department of Neurology, Hospital Universitario Fundación Jiménez Díaz, Madrid, Spain; 17Department of Neurology, Complejo Hospitalario Universitario A Coruña, A Coruña, Spain; 18Department of Neurology, Hospital Arnau de Vilanova, Llíria, Spain; 19Department of Neurology, Complejo Asistencial de Segovia, Segovia, Spain; 20Department of Neurology, Hospital Universitario Reina Sofía, Córdoba, SpainCorrespondence: Jorge Maurino, Ribera del Loira 50, Madrid, 28042, Spain, Tel + 34 913 24 81 00, Email jorge.maurino@roche.comPurpose: Shared decision-making is critical in multiple sclerosis (MS) due to the uncertainty of the disease trajectory over time and the large number of treatment options with differing efficacy, safety and administration characteristics. The aim of this study was to assess patients’ decisional conflict regarding the choice of a disease-modifying therapy and its associated factors in patients with mid-stage relapsing-remitting multiple sclerosis (RRMS).Methods: A multicenter, non-interventional study was conducted. Adult patients with a diagnosis of RRMS (2017 revised McDonald criteria) and disease duration of 3 to 8 years were included. The level of uncertainty experienced by a patient when faced with making a treatment choice was assessed using the 4-item Decisional Conflict Scale. A battery of patient-reported and clinician-rated measures was administered to obtain information on symptom severity, illness perception, illness-related uncertainty, regret, MS knowledge, risk taking behavior, preferred role in the decision-making process, cognition, and self-management. Patients were recruited during routine follow-up visits and completed all questionnaires online using electronic tablets at the hospital. A multivariate logistic regression analysis was conducted.Results: A total of 201 patients were studied. Mean age (Standard deviation) was 38.7 (8.4) years and 74.1% were female. Median disease duration (Interquartile range) was 6.0 (4.0– 7.0) years. Median EDSS score was 1.0 (0– 2.0). Sixty-seven (33.3%) patients reported a decisional conflict. These patients had lower MS knowledge and more illness uncertainty, anxiety, depressive symptoms, fatigue, subjective symptom severity, a threatening illness perception, and poorer quality of life than their counterparts. Lack of decisional conflict was associated with MS knowledge (Odds ratio [OR]=1.195, 95% CI 1.045, 1.383, p=0.013), self-management (OR=1.049, 95% CI 1.013, 1.093, p=0.018), and regret after a healthcare decision (OR=0.860, 95% CI 0.756, 0.973, p=0.018) in the multivariate analysis.Conclusion: Decisional conflict regarding the selection of a disease-modifying therapy was a common phenomenon in patients with mid-stage RRMS. Identifying factors associated with decisional conflict may be useful to implement preventive strategies that help patients better understand their condition and strengthen their self-management resources.Keywords: multiple sclerosis, disease-modifying therapies, decision-making, decisional conflict, disease-related knowledge, self-management

In times of person‐centered care, it is all the more important to support patients in making good decisions about their care. One way to offer such support to patients is by way of Patient Decision Aids (PDAs). Ranging from patient brochures to web‐based tools, PDAs explicitly state the decisions patients face, inform them about their medical options, help them to clarify and discuss their values, and ultimately make a decision. However, lingering discussions surround effectiveness research on PDAs. In this article, I focus on two subjective measures of decision quality that are widely used as outcome measures in effectiveness research on PDAs (i.e., the Decisional Conflict Scale (DCS) and measures of regret). Although these measurement instruments have attracted critical attention in the scientific literature, bioethicists have hardly engaged with them. Therefore, I set myself to analyze the relationship between (the different subscales of) the DCS and measures of regret, on the one hand, and ethical principles such as beneficence and autonomy, on the other hand. In light of that analysis, I will clarify some discussions regarding the use of these measures of decision quality in effectiveness research on PDAs. This should help us to align the way we evaluate PDAs with ethical principles and avoid that our attempts to support patients in making good decisions about their care that is so central to person‐centered care point in unethical directions. [ABSTRACT FROM AUTHOR]

Background: Human papillomavirus (HPV) poses a significant public health concern, as it is linked to various serious health conditions such as cancer and genital warts. Despite the vaccine's safety, efficacy, and availability through national school programs, HPV vaccination rates remain low in Israel, particularly within the ultra-Orthodox community due to religious and cultural barriers. Decision aids have shown promise in facilitating shared decision making and promoting informed choices in health care. This study aimed to assess the impact of a novel Web-based decision aid on HPV vaccination intentions, knowledge, decision self-efficacy, and decisional conflict among Israeli parents and young adults, with a specific focus on exploring differences between religious groups. Methods: Two Web-based decision aids were developed for parents of children aged 10 to 17 y (n = 120) and young adults aged 18 to 26 y (n = 160). A quasi-experimental study was conducted among Hebrew-speaking parents and young adults eligible for HPV vaccination. Participants completed pre- and postintervention questionnaires assessing vaccination intentions, knowledge about HPV, decision self-efficacy, and decisional conflict. Results: The decision aid significantly improved intentions toward HPV vaccination among most religious groups, except the Jewish ultra-Orthodox community. Ultra-Orthodox participants exhibited reluctance to vaccinate themselves or their children (odds ratio [OR] = 0.23, P < 0.001 for parents' group; OR = 0.43, P < 0.001 for young adults' group). Parental preference for vaccinating girls over boys (OR = 2.66, P < 0.001) and increased inclination for vaccination among Muslim-Arabs were observed (OR = 3.12, P < 0.001). Knowledge levels improved among ultra-Orthodox participants but not decisional conflict and self-efficacy. Conclusions: The Web-based decision aid positively influenced the quality of HPV vaccination decision making among various religious groups in Israel, except for the ultra-Orthodox community. Culturally tailored approaches that address specific community concerns are essential for informed decision making. Highlights: Human papillomavirus (HPV) vaccination rates in Israel are substantially lower than those of other routine vaccinations, particularly among religious and ultra-Orthodox communities, largely due to sociocultural beliefs and misinformation. A newly developed Web-based decision aid was implemented in a study involving parents and young adults to evaluate its impact on vaccination intent, knowledge about HPV, decision self-efficacy, and decisional conflict. While the decision aid significantly enhanced vaccination intention, knowledge, and perceived behavioral control among various religious groups, it did not yield the same outcomes within the ultra-Orthodox Jewish community. This study highlights the vital role of cultural adaptation in HPV vaccine decision aids within Israel, revealing significant disparities in vaccination perceptions and decisions among diverse religious and cultural groups. [ABSTRACT FROM AUTHOR]

Objective: Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision‐making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life‐sustaining treatments and care utilisation to inform their broader use in ACP studies. Methods: Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. Results: Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's =.31–.37, p <.001), and ACP engagement (r's = −.41 to −.37, p <.001) indicated convergent validity. Conclusion: A substantial proportion of older adults reported clinically significant levels of decisional conflict when responding to a range of hypothetical scenarios about care or treatment. Two scenarios showed acceptable comprehensibility and response characteristics. A third scenario may be suitable following further refinement. Patient or Public Contribution: The scenarios tested here were designed in collaboration with a community representative and were further piloted with two groups of community members with relevant lived experiences; four people with life‐limiting conditions and five current or former care partners. [ABSTRACT FROM AUTHOR]

Abstract Purpose Women diagnosed with ductal carcinoma in situ (DCIS) face confusion and uncertainty about treatment options. The objective of this study was to determine whether there are differences in decisional conflict about treatment by age and race/ethnicity. Methods A cross-sectional survey was conducted of women (age ≥ 18) diagnosed with DCIS enrolled at Kaiser Permanente of Southern California. The Decisional Conflict Scale (DCS) measured personal perceptions of decision uncertainty, values clarity, and effective decision-making. We used a multivariable regression to study whether age, race, and ethnicity were associated with patient-reported DCS. Results 45% (N = 1395) of women who received the online survey, participated. The mean age was 56 (± 9.6) years, the majority were white. Compared to women younger than 50, women aged 60–69 reported lower overall DCS scores (-5.4; 95% CI -1.5 to -9.3). Women > 70 had lower values clarity scores (-9.0; 95% CI -2.8 to -15.2) about their treatment compared to women aged 50–59 and 60–69 (-7.1; 95% CI -2.9 to -11.3 and − 7.2; 95% CI -2.9 to -11.5) and likewise, lower effective decision-making scores (-5.4; 95% CI -1.7 to -9.2 and − 5.2; 95% CI -1.4 to -9.0) compared to women 70). Age based tailored discussions about treatment options, health education, and supportive decision-making interventions/tools may reduce decision conflict in future DCIS patients. Trade registration The IRB number is 10678.

Aim: Patient understanding of disease can guide decision‐making in the management of anal fistula. This prospective feasibility study aimed to assess the acceptability and methods of assessing the impact of viewing realistic models on patients with anal fistula. Methods: New referrals to a tertiary clinic participated in this single‐centre, parallel‐group randomized controlled study. Baseline characteristics, Decisional Conflict Scale and understanding of disease were assessed pre‐consultation. Participants were randomized to a standard consultation, where disease and treatment options were explained using magnetic resonance images and drawn diagrams, or a similar consultation supplemented with an appropriate generic three‐dimensional (3D) printed model. Understanding of disease and proposed surgery, Decisional Conflict Scale and ratings of visual aids were assessed post‐consultation, along with 3D model feedback. Results: All 52 patients who were approached agreed to be randomized (25 standard, 27 3D consultation). Understanding of disease increased post‐consultation in both groups. Post‐consultation decisional conflict (0, no; 100, high decisional conflict) was low (median 27 post‐standard vs. 24 post‐3D consultation). Patients scored highly on measures assessing understanding of proposed surgery. 3D models were rated highly, with 96% of patients wanting to see them again in future consultations. Conclusions: Three‐dimensional printed fistula models are a welcome addition to outpatient consultations with results suggesting that understanding of surgery is improved. A future trial should be powered to detect whether 3D models result in a significant improvement in understanding beyond traditional methods of explanation and explore the conditions in which models have their maximal utility. ClinicalTrials.gov Registration ID This study was registered on ClinicalTrials.gov (ID: NCT04069728). Registered on 23 August 2019. [ABSTRACT FROM AUTHOR]

Background: Informed consent is an ethical prerequisite for psychotherapy. There are no routinely used standardized strategies for obtaining informed consent. A new optimized informed consent consultation (OIC) strengthened treatment‐relevant aspects. It remains unclear which factors influence the OIC efficacy regarding clinical and decision‐related outcomes. Methods: N = 122 adults were included in a randomized controlled online trial. Participants received an information brochure on psychotherapy (TAU; n = 61) or OIC + TAU (n = 61). The main and interaction effects of group allocation, therapeutic alliance, prior knowledge about psychotherapy and treatment motivation on treatment expectations, decisional conflict and capacity to consent were tested. Floodlight analyses were conducted for significant interactions. Results: Large interaction effects were shown between treatment motivation and group allocation on treatment expectations (β = −0.53) and between prior knowledge and group assignment on capacity to consent (β = 0.68). The interaction between treatment motivation and group allocation was significant up to a motivation score of 5.54 (range: 1–7). The interaction between prior knowledge and group assignment was significant up to a knowledge score of 14.38 (range: 5–20). Conclusion: Moderator analyses indicated varying efficacy degrees for the OIC regarding decisional outcomes and expectation. Especially patients with little treatment motivation or low prior knowledge benefited from optimized information about the efficacy and possible side effects of psychotherapy. Trial Registration: PsychArchives (https://doi.org/10.23668/psycharchives.4929): 17.06.2021 [ABSTRACT FROM AUTHOR]

Purpose: Women diagnosed with ductal carcinoma in situ (DCIS) face confusion and uncertainty about treatment options. The objective of this study was to determine whether there are differences in decisional conflict about treatment by age and race/ethnicity. Methods: A cross-sectional survey was conducted of women (age ≥ 18) diagnosed with DCIS enrolled at Kaiser Permanente of Southern California. The Decisional Conflict Scale (DCS) measured personal perceptions of decision uncertainty, values clarity, and effective decision-making. We used a multivariable regression to study whether age, race, and ethnicity were associated with patient-reported DCS. Results: 45% (N = 1395) of women who received the online survey, participated. The mean age was 56 (± 9.6) years, the majority were white. Compared to women younger than 50, women aged 60–69 reported lower overall DCS scores (-5.4; 95% CI -1.5 to -9.3). Women > 70 had lower values clarity scores (-9.0; 95% CI -2.8 to -15.2) about their treatment compared to women aged 50–59 and 60–69 (-7.1; 95% CI -2.9 to -11.3 and − 7.2; 95% CI -2.9 to -11.5) and likewise, lower effective decision-making scores (-5.4; 95% CI -1.7 to -9.2 and − 5.2; 95% CI -1.4 to -9.0) compared to women < 50. Compared to whites, blacks reported lower decision conflict (-4.4; 95% CI 0.04 to -8.8) and lower informed decision (-5.2; 95% CI -0.18 to -10.3) about DCIS treatment. Conclusion: Younger women reported higher decisional conflict about DCIS treatment, compared to older women (> 70). Age based tailored discussions about treatment options, health education, and supportive decision-making interventions/tools may reduce decision conflict in future DCIS patients. Trade registration: The IRB number is 10678. [ABSTRACT FROM AUTHOR]

Background: Children and young adults needing surgery for a primary malignant bone tumour around the knee face a difficult, life changing decision. This study describes the level of shared decision making (SDM) experienced and preferred by these patients, parents and physicians in surgical consultations, and its relation to experienced decisional conflict and decisional regret. Methods: Multicentre, cross-sectional cohort study. All patients who underwent surgery for a primary bone tumour around the knee in the Dutch designated orthopaedic oncological centres between 2012 and 2015, and their parents, were invited to complete the SDM-patient-Questionnaire (SDM-Q-9), Decisional Conflict Scale (DCS), Decisional Regret Scale (DRS) and Control Preferences Scale (CPS). Physicians completed the SDM- physician-Questionnaire (SDM-Q-Doc) and CPS. Results: Twenty-four patients >16 years with twenty-two parents, and ten parents of patients between 5 and 16 years old, completed the questionnaires. Patients’ median SDM-Q-9 score was 60 (8.9–97.8), parents’ 77.8 (8.9–100) and physicians’ 82.2 (66.7–97.8). The SDM-Q-9 scores of patients (rs=−0.753, p

Abstract Objective Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision‐making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life‐sustaining treatments and care utilisation to inform their broader use in ACP studies. Methods Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. Results Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's = .31–.37, p

Abstract Background Venous thromboembolism (VTE) in pregnancy is a major cause of maternal morbidity and death. The use of low-molecular-weight heparin (LMWH), despite being the standard of care to prevent VTE, comes with some challenges. Shared decision-making (SDM) interventions are recommended to support patients and clinicians in making preference-sensitive decisions. The quality of the SDM process has been widely assessed with the decisional conflict scale (DCS). Our aim is to report participants’ perspectives of each of the components of an SDM intervention (DASH-TOP) in relation to the different subscales of the DCS. Methods Design: A convergent, parallel, mixed-methods design. Participants: The sample consisted of 22 health care professionals, students of an Applied Clinical Research in Health Sciences (ICACS) master program. Intervention: We randomly divided the participants in three groups: Group 1 received one component (evidence -based information), Group 2 received two components (first component and value elicitation exercises), and Group 3 received all three components (the first two and a decision analysis recommendation) of the SDM intervention. Analysis: For the quantitative strand, we used a non-parametric test to analyze the differences in the DCS subscales between the three groups. For the qualitative strand, we conducted a content analysis using the decisional conflict domains to deductively categorize the responses. Results Groups that received more intervention components experienced less conflict and better decision-making quality, although the differences between groups were not statistically significant. The decision analysis recommendation improved the efficacy with the decision-making process, however there are some challenges when implementing it in clinical practice. The uncertainty subscale showed a high decisional conflict for all three groups; contributing factors included low certainty of the evidence-based information provided and a perceived small effect of the drug to reduce the risk of a VTE event. Conclusions The DASH-TOP intervention reduced decisional conflict in the decision -making process, with decision analysis being the most effective component to improve the quality of the decision. There is a need for more implementation research to improve the delivery of SDM interventions in the clinical encounter.

Abstract Background Women 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. Methods In 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. Results Of 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

Background: Venous thromboembolism (VTE) in pregnancy is a major cause of maternal morbidity and death. The use of low-molecular-weight heparin (LMWH), despite being the standard of care to prevent VTE, comes with some challenges. Shared decision-making (SDM) interventions are recommended to support patients and clinicians in making preference-sensitive decisions. The quality of the SDM process has been widely assessed with the decisional conflict scale (DCS). Our aim is to report participants' perspectives of each of the components of an SDM intervention (DASH-TOP) in relation to the different subscales of the DCS. Methods: Design: A convergent, parallel, mixed-methods design. Participants: The sample consisted of 22 health care professionals, students of an Applied Clinical Research in Health Sciences (ICACS) master program. Intervention: We randomly divided the participants in three groups: Group 1 received one component (evidence -based information), Group 2 received two components (first component and value elicitation exercises), and Group 3 received all three components (the first two and a decision analysis recommendation) of the SDM intervention. Analysis: For the quantitative strand, we used a non-parametric test to analyze the differences in the DCS subscales between the three groups. For the qualitative strand, we conducted a content analysis using the decisional conflict domains to deductively categorize the responses. Results: Groups that received more intervention components experienced less conflict and better decision-making quality, although the differences between groups were not statistically significant. The decision analysis recommendation improved the efficacy with the decision-making process, however there are some challenges when implementing it in clinical practice. The uncertainty subscale showed a high decisional conflict for all three groups; contributing factors included low certainty of the evidence-based information provided and a perceived small effect of the drug to reduce the risk of a VTE event. Conclusions: The DASH-TOP intervention reduced decisional conflict in the decision -making process, with decision analysis being the most effective component to improve the quality of the decision. There is a need for more implementation research to improve the delivery of SDM interventions in the clinical encounter. [ABSTRACT FROM AUTHOR]

Background: Women 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. Methods: In 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. Results: Of 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). Conclusions: These 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 registration: German Clinical Trials Register, DRKS-ID: DRKS00015823, retrospectively registered 14/06/2019. [ABSTRACT FROM AUTHOR]

This study aims to investigate decisional conflict and elucidate challenges in decision-making among perinatal women using or considering using antidepressant (AD) during pregnancy. A sequential, mixed-methods study was employed among pregnant and postnatal women in Norway who had been offered ADs in the last 5 years. Quantitative data were obtained through an electronic questionnaire. Decisional conflict in pregnancy was assessed using the Decisional Conflict Scale (DCS) defined as either low (< 25) or moderate-high (≥ 25) (evaluated retrospectively for postnatal women). Logistic regression was used to identify factors associated with moderate–high decisional conflict. Qualitative data were collected through focus groups with pregnant and postnatal women, and an inductive approach was used for data analysis. Among 174 pregnant and 102 postnatal women, 67.8% and 69.6%, respectively, reported moderate–high decisional conflict during pregnancy. Unsatisfactory doctor-patient relationship was associated with greater likelihood of having moderate–high decisional conflict in pregnancy, both in pregnant (aOR = 1.20, 95% CI: 1.00–1.44) and postnatal women (aOR = 1.40, 95% CI: 1.08–1.82). Reported barriers to decision-making regarding AD use in pregnancy encompassed five DCS subscales: uninformed knowledge following contradictory research and unfamiliarity with authorised resources, unclear values due to emotional blunting and fear associated with AD use, inadequate support, uncertainty in decisions and ineffective decisions due to difficulty in finding personalised treatment, and diverging recommendations by the healthcare providers (HCPs). The quality of the interaction with the HCP plays a crucial role in managing decisional conflict and supporting informed decisions in the management of perinatal mental illness. This study highlights the need for increased provision of clear, evidence-based information by HCPs to facilitate shared decision-making and create personalised treatments for perinatal women considering AD use during pregnancy. [ABSTRACT FROM AUTHOR]

Decisional conflict surrounding the topic of circumcision in the newborn male is assumed in some parents but has not been quantified or qualified. It is known that parents often base their decision on cultural and social factors and that physician discussions do affect ultimate decision-making. Information on parents' decision-making surrounding newborn circumcision and ways to mitigate conflict or uncertainty around the decision-making process is needed to better counsel them appropriately. To identify the presence or absence of decisional conflict in parents-to-be deciding whether or not to circumcise their child as well as to identify determinants of this conflict to direct future educational measures. Parents presenting to obstetrics clinic as well as contacted by institutional email were recruited using convenience sampling and completed the validated Decisional Conflict Scale (DCS). A smaller subset of subjects were recruited via institutional email to complete semi-structured interviews regarding the decision-making process and specifically uncertainty regarding the decision. Descriptive statistics and unpaired t tests were used for analysis of survey data. For interview data, an iterative, grounded theory methodology was used. 173 subjects completed the DCS. 12% of all participants had high decisional conflict. Intuitively, those who had not yet decided whether to circumcise had the highest proportion of high DCS (69%), followed by those who had decided to circumcise (9.3%) and those who had decided not to circumcise (1.7%). 24 subjects were interviewed, and based on their DCS scores and interview responses were classified as low, intermediate and high conflict. Three primary themes emerged delineating the high from low conflict groups. There were notable differences in the feelings of subjects regarding knowledge and feeling informed, the importance of particular values and clarity of the roles of these values in decision-making, and feelings of supported decision-making. These themes were used to create a visual model depicting the individual needs of each decision-maker (Fig. 1). This study highlights the need for decision support for parents that is not only information-based but focuses on values clarity and supported decision-making. This study provides a jumping-off point for creation of shared decision-making tools directed at individual needs. The limitations of this study are a single institution design and homogeneous population, so when designing materials, additional unrecognized needs will likely be identified. A small, but real proportion of parents-to-be experience significant uncertainty around the decision to circumcise their newborn boys. Identified needs of parents include feeling informed, feeling supported and clarification of important values related to the problem. [Display omitted] [ABSTRACT FROM AUTHOR]

Abstract Background Informal caregivers of children with leukemia can be emotionally and psychiatrically vulnerable when facing difficult treatment decisions (e.g., chemotherapy, targeted therapy, radiation, transplantation). A common behavioral manifestation of decisional conflict is the verbalized expression of uncertainty about which medical treatment plan to take. The study aims to examine the associations between decisional conflict, mastery, and depressive symptoms among parental caregivers of children with leukemia in China. It explored the mediating role of mastery in the relationship. Methods A cross-sectional survey design was adopted. A total of 386 parental caregivers were recruited, and 325 valid questionnaires remained. The mean age of caregivers was 37.7 years, and 61.5% caregivers were female. We used Question Format Decisional Conflict Scale to assess decisional conflict, Pearlin’s Mastery Scale to assess mastery, and Center for Epidemiological Studies Depression 10 to assess depressive symptoms. We used mediation analyses to test the mediating effect of mastery. Results The total score of decisional conflict scale, along with its dimensions of uncertainty, support, and effective decision were found negatively associated with depressive symptoms. In contrast, the dimension of information and value were not significantly associated with depressive symptoms. Mediation analyses demonstrated the direct effects of overall decisional conflict and uncertainly were fully mediated by mastery, while the direct effect of support and effective decision were partially mediated. Conclusions Efforts should be made to alleviate parental caregivers’ decisional conflict and enhance sense of mastery. Particular attention should be paid to the psycho-social support to relieve uncertainties and ineffectiveness in decision making.

Abstract Background Non-invasive prenatal testing (NIPT) is offered as a reproductive choice in many countries. However, pregnant women, particularly those who are primipara or lack knowledge of prenatal testing, experience difficulties understanding adequate information and making decisions on NIPT. This study developed a preconception education program about NIPT, focusing on interest in genetics, and aimed to clarify the effectiveness of the program to help women make decisions on future NIPT. Methods This was a one-group, quasi-experimental, pre-post-test study. The study population was female undergraduate students in Japan who participated in the education program. This program included two games and was based on the Attention, Relevance, Confidence, and Satisfaction (ARCS) model, which is an instructional design that stimulates learning interest and motivation. The data of 73 pre-pregnant women who completed all three questionnaires—before, immediately after, and three months after the intervention—were analyzed to clarify the time effects. Moreover, all variables were analyzed using logistic regression analysis to investigate factors related to decisional conflict. Results Interest in genetics, knowledge of genetics and prenatal testing, and indecisive attitudes toward NIPT significantly improved immediately after the intervention, and consequently, these changes and reduction of decisional conflict were maintained at three months. Moreover, low decisional conflict at follow-up was significantly associated with a high interest in genetics (adjusted odds ratio, 3.42). Conclusions These findings provide preliminary evidence that this preconception education program, which focused on facilitating interest in genetics, assists pre-pregnant women to reduce decisional conflict about future NIPT. Trial registration The trial was registered at the UMIN-CTR registry (January 16, 2023), registration number UMIN000050047.

Abstract Introduction Migraine symptoms vary significantly between patients and within the same patient. Currently, an increasing number of therapeutic options are available for symptomatic and preventive treatment. Guidelines encourage physicians to use shared decision-making (SDM) in their practice, listening to patients’ treatment preferences in order to select the most suitable and effective therapy. Although training for healthcare professionals could increase their awareness of SDM, results concerning its effectiveness are inconclusive. This study aimed to analyze the impact of a training activity to promote SDM in the context of migraine care. This was addressed by evaluating the impact on patients’ decisional conflict (main objective), patient-physician relationship, neurologists’ perceptions of the training and patient’s perception of SDM. Methods A multicenter observational study was conducted in four highly specialized headache units. The participating neurologists received SDM training targeting people with migraine in clinical practice to provide techniques and tools to optimize physician-patient interactions and encourage patient involvement in SDM. The study was set up in three consecutive phases: control phase, in which neurologists were blind to the training activity and performed the consultation with the control group under routine clinical practice; training phase, when the same neurologists participated in the SDM training; and SDM phase, in which these neurologists performed the consultation with the intervention group after the training. Patients in both groups with a change of treatment assessment during the visit completed the Decisional conflict scale (DCS) after the consultation to measure the patient’s decisional conflict. Also, patients answered the patient-doctor relationship questionnaire (CREM-P) and the 9-item Shared Decision-Making Questionnaire (SDM-Q-9). The mean ± SD scores obtained from the study questionnaires were calculated for both groups and compared to determine whether there were significant differences (p

Patients with acute uncomplicated appendicitis will be increasingly asked to choose between surgery and antibiotic management. We developed a novel decision aid for patients in the emergency department (ED) with acute appendicitis who are facing this choice. We describe the development of the decision aid and an initial feasibility study of its implementation in a busy tertiary care ED. We conducted a prepost survey analysis comparing patients before and after standardized implementation of the decision aid. Patients were surveyed about their experience making treatment decisions after discharge from the hospital. The primary outcome measure was the total score on the decisional conflict scale (; 0-100; lower scores better). The study included 24 participants (12 in the predecision aid period; 12 in the post period). Only 33% of participants in each group knew antibiotics were a treatment option prior to arriving at the ED. Prior to implementing the use of decision aid, only 75% of patients reported being told antibiotics were a treatment option, while this increased to 100% after implementation of the decision aid. The mean total decisional conflict scalescores were similar in the pre and post periods (mean difference = 0.13, 95% CI: -13 - 13, P > 0.9). This novel appendicitis decision aid was effectively integrated into clinical practice and helped toinform patients about multiple treatment options. These data support further large-scale testing of the decision aid as part of standardized pathways for the management of patients with acute appendicitis. • Decision aid development followed principles of user-centered design. • The decision aid increased knowledge of both treatment options. • The decision aid was effectively integrated into clinical practice. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers of children with leukemia can be emotionally and psychiatrically vulnerable when facing difficult treatment decisions (e.g., chemotherapy, targeted therapy, radiation, transplantation). A common behavioral manifestation of decisional conflict is the verbalized expression of uncertainty about which medical treatment plan to take. The study aims to examine the associations between decisional conflict, mastery, and depressive symptoms among parental caregivers of children with leukemia in China. It explored the mediating role of mastery in the relationship. Methods: A cross-sectional survey design was adopted. A total of 386 parental caregivers were recruited, and 325 valid questionnaires remained. The mean age of caregivers was 37.7 years, and 61.5% caregivers were female. We used Question Format Decisional Conflict Scale to assess decisional conflict, Pearlin's Mastery Scale to assess mastery, and Center for Epidemiological Studies Depression 10 to assess depressive symptoms. We used mediation analyses to test the mediating effect of mastery. Results: The total score of decisional conflict scale, along with its dimensions of uncertainty, support, and effective decision were found negatively associated with depressive symptoms. In contrast, the dimension of information and value were not significantly associated with depressive symptoms. Mediation analyses demonstrated the direct effects of overall decisional conflict and uncertainly were fully mediated by mastery, while the direct effect of support and effective decision were partially mediated. Conclusions: Efforts should be made to alleviate parental caregivers' decisional conflict and enhance sense of mastery. Particular attention should be paid to the psycho-social support to relieve uncertainties and ineffectiveness in decision making. [ABSTRACT FROM AUTHOR]

Introduction: Migraine symptoms vary significantly between patients and within the same patient. Currently, an increasing number of therapeutic options are available for symptomatic and preventive treatment. Guidelines encourage physicians to use shared decision-making (SDM) in their practice, listening to patients' treatment preferences in order to select the most suitable and effective therapy. Although training for healthcare professionals could increase their awareness of SDM, results concerning its effectiveness are inconclusive. This study aimed to analyze the impact of a training activity to promote SDM in the context of migraine care. This was addressed by evaluating the impact on patients' decisional conflict (main objective), patient-physician relationship, neurologists' perceptions of the training and patient's perception of SDM. Methods: A multicenter observational study was conducted in four highly specialized headache units. The participating neurologists received SDM training targeting people with migraine in clinical practice to provide techniques and tools to optimize physician-patient interactions and encourage patient involvement in SDM. The study was set up in three consecutive phases: control phase, in which neurologists were blind to the training activity and performed the consultation with the control group under routine clinical practice; training phase, when the same neurologists participated in the SDM training; and SDM phase, in which these neurologists performed the consultation with the intervention group after the training. Patients in both groups with a change of treatment assessment during the visit completed the Decisional conflict scale (DCS) after the consultation to measure the patient's decisional conflict. Also, patients answered the patient-doctor relationship questionnaire (CREM-P) and the 9-item Shared Decision-Making Questionnaire (SDM-Q-9). The mean ± SD scores obtained from the study questionnaires were calculated for both groups and compared to determine whether there were significant differences (p < 0.05). Results: A total of 180 migraine patients (86.7% female, mean age of 38.5 ± 12.3 years) were included, of which 128 required a migraine treatment change assessment during the consultation (control group, n = 68; intervention group, n = 60). A low decisional conflict was found without significant differences between the intervention (25.6 ± 23.4) and control group (22.1 ± 17.9; p = 0.5597). No significant differences in the CREM-P and SDM-Q-9 scores were observed between groups. Physicians were satisfied with the training and showed greater agreement with the clarity, quality and selection of the contents. Moreover, physicians felt confident communicating with patients after the training, and they applied the techniques and SDM strategies learned. Conclusion: SDM is a model currently being actively used in clinical practice for headache consultation, with high patient involvement in the process. This SDM training, while useful from the physician's perspective, may be more effective at other levels of care where there is still room for optimization of patient involvement in decision-making. [ABSTRACT FROM AUTHOR]

COVID-19 vaccine uptake among 5–11-year-olds is significantly lower than that of the 12+ age group. Some parents may have decided against vaccinating their children for COVID-19; others may be undecided and may be seeking more information to support their decision. We aimed to assess the effect of a decision support tool on parents' level of decisional conflict, vaccine hesitancy, and intention to vaccinate. We conducted a single-arm, cross-sectional online pre-post intervention survey of parents from Victoria, Australia, who had not yet vaccinated their 5–11-year-old child for COVID-19. We measured change in decisional conflict, intention, and hesitancy towards COVID-19 vaccines for children before and after viewing a decision support tool. We used logistic regression to identify characteristics associated with reduced decisional conflict. Between May and September 2022, 108 parents took part in the study. The tool reduced decision conflict in 25% (27/107) of parents, with reduced decisional conflict more likely among parents initially undecided about vaccinating, compared to parents who did not intend to vaccinate their child (OR, 12.58 95% CI 3.21 to 9.30). For most parents, hesitancy (83%, 90/108) and intention (89%, 96/108) remained the same. The decision support tool was modestly effective at reducing decisional conflict, particularly among undecided parents. [ABSTRACT FROM AUTHOR]

Background: Non-invasive prenatal testing (NIPT) is offered as a reproductive choice in many countries. However, pregnant women, particularly those who are primipara or lack knowledge of prenatal testing, experience difficulties understanding adequate information and making decisions on NIPT. This study developed a preconception education program about NIPT, focusing on interest in genetics, and aimed to clarify the effectiveness of the program to help women make decisions on future NIPT. Methods: This was a one-group, quasi-experimental, pre-post-test study. The study population was female undergraduate students in Japan who participated in the education program. This program included two games and was based on the Attention, Relevance, Confidence, and Satisfaction (ARCS) model, which is an instructional design that stimulates learning interest and motivation. The data of 73 pre-pregnant women who completed all three questionnaires—before, immediately after, and three months after the intervention—were analyzed to clarify the time effects. Moreover, all variables were analyzed using logistic regression analysis to investigate factors related to decisional conflict. Results: Interest in genetics, knowledge of genetics and prenatal testing, and indecisive attitudes toward NIPT significantly improved immediately after the intervention, and consequently, these changes and reduction of decisional conflict were maintained at three months. Moreover, low decisional conflict at follow-up was significantly associated with a high interest in genetics (adjusted odds ratio, 3.42). Conclusions: These findings provide preliminary evidence that this preconception education program, which focused on facilitating interest in genetics, assists pre-pregnant women to reduce decisional conflict about future NIPT. Trial registration: The trial was registered at the UMIN-CTR registry (January 16, 2023), registration number UMIN000050047. [ABSTRACT FROM AUTHOR]

Objective Method Results Conclusions This study aimed to examine decisional conflict and identify its predictors in Chinese pregnant women who were making decisions about further prenatal testing after receiving a screening result of high-risk for Down syndrome.A cross-sectional study was conducted from September 2020 to July 2021 in Guangzhou, China. Two-hundred and sixty pregnant women receiving a screening result of high-risk for Down syndrome completed a questionnaire comprising the Decisional Conflict Scale, Self‐rating Anxiety Scale, and Social Support Rating Scale.The mean decisional conflict score was 28.8 ± 13.6, representing a moderate level. Advanced age (≥35 years), having a religious belief, not knowing about non-invasive or invasive prenatal testing, choosing NIPT for further prenatal testing, high levels of anxiety, and low levels of social support were significant predictors of decisional conflict, explaining 28.4% of its variance (F = 18.115, p < 0.001).The results highlighted the necessity of assessing patients’ decisional conflict and providing adequate interventions along the prenatal care trajectory. The results also showed that providing good support has an essential value for women by relieving their decisional conflict. [ABSTRACT FROM AUTHOR]

Worry is a cognitive process anticipating the possible consequences of a situation that affects decision-making processes beyond its adaptive function of alertness and balance of own resources to cope with situations. Early research on worry focuses on its most common causes and frequency. More recently, some studies examined people's explanations to justify high levels of worry despite the high costs involved. From this second perspec-tive, in this study, we analyze worry and its relationship with decision-making patterns in a Mexican sample (N= 116; 66 males, 50 females). We also compare the scores of the Mexican sample in decision-making patterns with those of the members of other cultures, Anglo-Saxon and Asian. [ABSTRACT FROM AUTHOR]

Background: Gender-affirming surgical procedures, such as metoidioplasty and phalloplasty for those assigned female at birth, are complex and multistaged and involve risks. Individuals considering these procedures experience greater uncertainty or decisional conflict, compounded by difficulty finding trustworthy information. Aim: (1) To explore the factors contributing to decisional uncertainty and the needs of individuals considering metoidioplasty and phalloplasty gender-affirming surgery (MaPGAS) and (2) to inform development of a patient-centered decision aid. Methods: This cross-sectional study was based on mixed methods. Adult transgender men and nonbinary individuals assigned female at birth at various stages of MaPGAS decision making were recruited from 2 study sites in the United States to participate in semistructured interviews and an online gender health survey, which included measures of gender congruence, decisional conflict, urinary health, and quality of life. Trained qualitative researchers conducted all interviews with questions to explore constructs from the Ottawa decision support framework. Outcomes: Outcomes included goals and priorities for MaPGAS, expectations, knowledge, and decisional needs, as well as variations in decisional conflict by surgical preference, surgical status, and sociodemographic variables. Results: We interviewed 26 participants and collected survey data from 39 (24 interviewees, 92%) at various stages of MaPGAS decision making. In surveys and interviews, affirmation of gender identity, standing to urinate, sensation, and the ability to "pass" as male emerged as highly important factors for deciding to undergo MaPGAS. A third of survey respondents reported decisional conflict. Triangulation of data from all sources revealed that conflict emerged most when trying to balance the strong desire to resolve gender dysphoria through surgical transition against the risks and unknowns in urinary and sexual function, appearance, and preservation of sensation post-MaPGAS. Insurance coverage, age, access to surgeons, and health concerns further influenced surgery preferences and timing. Clinical Implications: The findings add to the understanding of decisional needs and priorities of those considering MaPGAS while revealing new complexities among knowledge, personal factors, and decisional uncertainty. Strengths and Limitations: This mixed methods study was codeveloped by members of the transgender and nonbinary community and yielded important guidance for providers and individuals considering MaPGAS. The results provide rich qualitative insights for MaPGAS decision making in US contexts. Limitations include low diversity and sample size; both are being addressed in work underway. Conclusions: This study increases understanding of the factors important to MaPGAS decision making, and results are being used to guide development of a patient-centered surgical decision aid and informed survey revision for national distribution. [ABSTRACT FROM AUTHOR]

Abstract Background Supporting people living with HIV using anti-retroviral therapy (ART) is important due to the requirement for strict medication adherence. To date, no data from longitudinal studies evaluating adherence by treatment-naïve people living with HIV are currently available. We investigated the adherence of treatment-naïve people living with HIV over time and examined the relationships among decisional conflicts, adherence, and health-related quality of life (HRQL). Methods The survey items included adherence (visual analogue scale [VAS]), decisional conflict (decisional conflict scale [DCS]), and HRQL (Medical Outcomes Study HIV Health Survey [MOS-HIV]). The DCS and MOS-HIV scores and the VAS and MOS scores were collected electronically at the ART initiation time point and at 4-, 24-, and 48-week post-treatment time points. Results A total of 215 participants were enrolled. The mean DCS score was 27.3 (SD, 0.9); 23.3% of participants were in the high-score and 36.7% in the low-score groups. The mean adherence rates at 4, 24, and 48 weeks were 99.2% (standard error [SE], 0.2), 98.4% (SE, 0.4), and 96.0% (SE, 1.2), respectively. The least-square means of the MOS-HIV for the DCS (high vs. low scores) were 64.4 vs. 69.2 for general health perceptions and 57.7 vs. 64.0 for HRQL, respectively. Conclusion Adherence among treatment-naïve people living with HIV was maintained at a higher level, and HRQL tended to improve with ART. People with high levels of decisional conflict tended to have lower HRQL scores. Support for people living with HIV during ART initiation may be related to HRQL.

Background: This study aimed to develop and evaluate the effectiveness of two web-based decision aids designed to help parents of children aged 10–17 years and young adults aged 18–26 years make informed decisions about the HPV vaccine. Methods: The decision aids were developed according to the International Patient Decision Aid Standards (IPDAS) criteria and included information about the vaccine, probabilities of benefits and side effects, personal narratives, and values clarification. The study utilized a quasi-experimental design and included 120 Hebrew-speaking parents and 160 young adults. Participants completed baseline surveys and, two weeks after using the decision aid, completed a follow-up survey. Results: Both parents and young adults experienced a reduction in decisional conflict, an increase in self-efficacy, and greater confidence in the safety and effectiveness of the vaccine. The proportion of participating parents deciding to vaccinate their children against HPV increased from 46% to 75%, and the proportion of participating young adults leaning towards receiving the HPV vaccine increased from 64% to 92%. Conclusions: The study highlights the importance of using decision aids to support informed decision making about vaccination and suggests that web-based decision aids may be a useful tool for supporting Israeli parents and young adults to make HPV vaccination decisions. [ABSTRACT FROM AUTHOR]

This article describes the emergency care experience of a patient with chronic obstructive pulmonary disease, using shared decision-making between doctors and patients to help patients make final medical decisions. During the nursing care period, from 01:19 am to 04:10 pm on November 27, 2019, an overall assessment was carried out according to the Gordon 11 Functional Health Pattern. Three major health problems were identified, 1. gas interchange disturbance, 2. Activity Intolerance, 3. Decisional Conflict. The patient was guided to express their concerns about terminal medical care and provided with answers to their questions, using the medical aid tool of shared decision-making between doctors and patients to assist cases in setting medical goals. Additionally, through rehabilitation activities the patient could reach Oxygen saturation 95% without oxygen use before discharge. At 04:10 pm of the same day, the patient decided to sign the consent form of hospice palliative and was discharged from the hospital. On November 28, outpatient follow-up visits and follow-up telephone interviews were conducted. It is hoped that this nursing experience will provide a reference for caring for such cases. [ABSTRACT FROM AUTHOR]

Background: Patient decision aids (PDAs) are tools that facilitate informed shared decision-making between patients and health care providers. To address a previously identified need in treatment decision-making in hidradenitis suppurativa (HS), we developed an HS-PDA.Methods: Development of the HS-PDA was based on International Patient Decision Aids Standards. Evidence was derived from the North American Clinical Management Guidelines for HS.Results: Content from guidelines was transformed into patient-friendly language and reviewed by three physicians and two patient representatives. Feedback on HS-PDA content, presentation and practicality was obtained from 7 HS patients and 5 physicians. Revisions were made following thematic analysis. All patients felt the content on treatment options contained the right amount of information and 5 found it helpful to see these options contextualized to their values. Each stated they would use the HS-PDA during treatment decision-making. Three and four physicians respectively indicated the content was accurate and language was patient-friendly.Limitations: Small sample sizes may limit generalizability.Conclusion: This HS-PDA was developed in accordance with international standards based on current HS guidelines with input from patients and physicians. It is available online without cost.

Background: Supporting people living with HIV using anti-retroviral therapy (ART) is important due to the requirement for strict medication adherence. To date, no data from longitudinal studies evaluating adherence by treatment-naïve people living with HIV are currently available. We investigated the adherence of treatment-naïve people living with HIV over time and examined the relationships among decisional conflicts, adherence, and health-related quality of life (HRQL). Methods: The survey items included adherence (visual analogue scale [VAS]), decisional conflict (decisional conflict scale [DCS]), and HRQL (Medical Outcomes Study HIV Health Survey [MOS-HIV]). The DCS and MOS-HIV scores and the VAS and MOS scores were collected electronically at the ART initiation time point and at 4-, 24-, and 48-week post-treatment time points. Results: A total of 215 participants were enrolled. The mean DCS score was 27.3 (SD, 0.9); 23.3% of participants were in the high-score and 36.7% in the low-score groups. The mean adherence rates at 4, 24, and 48 weeks were 99.2% (standard error [SE], 0.2), 98.4% (SE, 0.4), and 96.0% (SE, 1.2), respectively. The least-square means of the MOS-HIV for the DCS (high vs. low scores) were 64.4 vs. 69.2 for general health perceptions and 57.7 vs. 64.0 for HRQL, respectively. Conclusion: Adherence among treatment-naïve people living with HIV was maintained at a higher level, and HRQL tended to improve with ART. People with high levels of decisional conflict tended to have lower HRQL scores. Support for people living with HIV during ART initiation may be related to HRQL. [ABSTRACT FROM AUTHOR]

Objective This study aimed to assess the use of a standardized prenatal genetic testing educational video and its effects on patient uptake of prenatal testing, patient knowledge, decisional conflict, and decisional regret. Study Design This was an Institutional Review Board–approved randomized controlled trial. Patients were randomized to intervention (standardized video education) or control (no video education). The video education group viewed a 5-minute educational video on genetic testing options, and the control group did not review the video. Both groups answered validated questionnaires to assess maternal knowledge (Maternal Serum Screening Knowledge Questionnaire [MSSK]), conflict (Decisional Conflict Scale [DCS]), and regret (Decisional Regret Scale [DRS]). The primary outcome was genetic testing uptake; secondary outcomes were knowledge-based test score, and level of decisional conflict and regret. Results We enrolled 210 patients between 2016 and 2020, with 208 patients randomized, 103 patients in the video education group and 105 patients in the control group. Four patients were excluded from the video education group for missing data. Video education was associated with a 39% lower chance of prenatal testing compared with patients who did not receive video education, (odds ratio 0.39, 95% confidence interval 0.16–0.92). Patients in the video education group had higher mean MSSKQ scores by 2.9 points (8.5 vs. 5.7, p < 0.001), lower Decisional Conflict Scores by 7.3 points (31.5 vs. 38.8, p < 0.001), lower Decisional Regret Scores by 5.4 points (23.8 vs. 29.2, p < 0.001). Conclusion We found that video education on prenatal genetic testing improved patients' knowledge, decreased testing and decisional conflict and regret regarding testing. This may indicate improved understanding of testing options and more informed decisions that align with their personal values and beliefs. This standardized video can be easily implemented in clinical practice to increase patient understanding and support decisions that align with patient's values. Key Points A standardized educational video improves patient knowledge about prenatal testing options in pregnancy. Video education decreases testing and decisional conflict and decisional regret in pregnancy. A standardized educational video may be used in the clinical setting to educate patients on testing options and help them make informed decisions about testing. [ABSTRACT FROM AUTHOR]

Parents of infants born with differences in sex development (DSD) face many difficult decisions. As part of a larger project designed to develop educational interventions to promote shared decision making, this study assessed healthcare professionals' (HCPs) perceptions of parental decision-making needs when an infant is born with a DSD. A cross-sectional web-based survey following the Ottawa Decision Support Framework was conducted in two waves, between October 2020 and June 2022. Survey domains included: common DSD decisions , indicators of parents' decisional needs , and resources and approaches to support parental decision making. Eligible participants were HCPs working within interprofessional pediatric DSD centers in the USA. Up to three reminders were sent. Descriptive analysis was conducted. 71 HCPs participated; most (>90%) reported parents experience signs of decisional conflict including feeling unsure, worrying about what could go wrong, and fear of choosing a "wrong," irreversible option. The majority (90%) reported parents experience strong emotions interfering with their receptivity to information or deliberation. The majority (>70%) identified inadequate parental knowledge of the DSD as a barrier to decision making, coupled with information overload (>90%). HCPs rated several factors as "very" important, including: parents having information on benefits, harms, and other features of options (93%), having information about all the available options (87%), and having access to providers to discuss the options (84%). Providers endorsed using a variety of approaches to support parents' decision making; however, access to decision aids was not universally rated as highly important (very, 44%; somewhat , 46%; a little, 10%). Overall, HCPs expressed favorable attitudes toward supporting active parental participation in medical decision making. Opportunities for enhanced support of shared decision making included: a) recognizing and addressing parental emotional distress and informational overload at a time when parents need to consider complex options for their infant or young child; and b) the need for HCPs to encourage values clarification in decision-making encounters with parents. [ABSTRACT FROM AUTHOR]

Purpose: In the Netherlands, patients can often choose between the laparoscopic Roux-en-Y gastric bypass (RYGB) and sleeve gastrectomy (SG) as primary bariatric surgery. Yet, patients confronted with medical options may experience decisional conflict when their stakes are high and outcomes uncertain. This study aimed to assess if a decision aid helps patients make informed choices between two bariatric procedures by lowering the level of decisional conflict. Materials and Methods: This study was a single-center comparative cohort of patients who accessed a web-based decision aid (intervention group) and those who did not use the decision aid (control group) to help choose between two bariatric procedures additional to the standard provided care. The primary outcome was the level of decisional conflict in these patients using the decisional conflict scale (DCS). Secondary outcomes were patient satisfaction with the provided information (BODY-QTM—satisfaction with information), preference of involvement in procedure selection, level of shared decision-making (SDM-Q-9 questionnaire), and patient knowledge. Results: The level of decisional conflict assessed with the decisional conflict scale (DCS) showed a significantly lower mean total DCS of 25.5 ± 11.5 for the intervention group vs. 29.1 ± 12.4 in the control group (p = 0.022). Both groups did not significantly differ in satisfaction regarding provided information, involvement in the selection procedure, shared decision-making, and patient knowledge. Conclusion: The results suggest that the additional use of a decision aid significantly lowers the level of decisional conflict in patients awaiting bariatric surgery. However, the added value should be further investigated. [ABSTRACT FROM AUTHOR]

Couples at risk of transmitting a genetic disease to their offspring may experience doubts about their reproductive options. This study examines the effects of an online decision aid (DA) on the (joint) reproductive decision‐making process of couples (not pregnant at time of inclusion) at risk of transmitting a genetic disease to their offspring. The primary outcome is decisional conflict, and secondary outcomes are knowledge, realistic expectations, deliberation, joint informed decision‐making, and decisional self‐efficacy. These outcomes were measured with a pretest–posttest design: before use (T0), after use (T1), and 2 weeks after use (T2) of the decision aid (DA). Usability of the DA was assessed at T1. Paired sample t‐tests were used to compute differences between baseline and subsequent measurements. The comparisons of T0‐T1 and T0‐T2 indicate a significant reduction in mean decisional conflict scores with stronger effects for participants with high baseline decisional conflict scores. Furthermore, use of the DA led to increased knowledge, improved realistic expectations, and increased levels of deliberation, with higher increase in participants with low baseline scores. Decision self‐efficacy only improved for participants with lower baseline scores. Participants indicated that the information in the DA was comprehensible and clearly organized. These first results indicate that this online DA is an appropriate tool to support couples at risk of transmitting a genetic disease and a desire to have (a) child(ren) in their reproductive decision‐making process. [ABSTRACT FROM AUTHOR]

Chinese immigrant cancer patients report suboptimal patient-provider communication, which increases the likelihood of decisional conflict and unsatisfactory treatment decision-making (TDM) outcomes (e.g., low satisfaction and perceived control over cancer care). This cross-sectional study explored whether (1) communication and decisional conflict factors associated with TDM outcomes differed between Chinese immigrant and non-Hispanic White breast cancer patients, and (2) the association between patient-provider communication and the outcomes were mediated by TDM factors, regardless of race. Ninety-eight breast cancer patients, diagnosed at stage I–III participated in cross-sectional survey interviews. TDM outcomes and possible predictors of the outcomes (e.g., patient-provider communication, decisional conflict, preference for who makes the treatment decision) were assessed. Linear regression and mediational testing were performed to examine associations among variables of interest. Of the 98, 85 were included for analysis. Chinese patients with limited English proficiency (n = 37) had poorer patient-provider communication, higher decisional conflict, and preferred providers to make decisions than non-Hispanic White patients (n = 48; all p <.05). They also had lower satisfaction with their TDM process after controlling for predictors (e.g., patient-provider communication) (p <.001). There were no significant racial differences in perceived control, controlling for covariates. Regardless of race, patients who reported quality patient-provider communication reported less decisional conflict. These patients also reported increased satisfaction and perceived control. The disparities Chinese immigrant cancer patients experienced in the TDM process may be related to their cultural communication style with providers. Facilitating Chinese patients' communication and partnership with providers may reduce decisional conflicts and increase their TDM outcomes. [ABSTRACT FROM AUTHOR]

Introduction: Couples at high risk of transmitting a genetic disease to their offspring have several reproductive options. As decision making is often experienced as difficult, there is a need for a decision aid (DA), to assist couples in their reproductive decisionmaking process and to reduce decisional conflict and increase (joint) informed decisionmaking. This article describes the design of a nationwide randomized controlled trial to assess the efficacy of the online DA. Methods: The development of the DA was based on the International Patient Decision Aid Standards (IPDAS) guidelines. A nationwide multi-centre Randomized Controlled Trial (RCT) will be conducted in the eight genetic centres in the Netherlands to assess the effects of the DA, compared to a website with standardized information based on information provided during standard care. The required sample size is 128 couples. Participants are randomly assigned to either the intervention or control group and are asked to complete four questionnaires within six months to study the effects of the information. The questionnaires will assess decisional conflict, knowledge, attitude, deliberation, and the decision-making process between partners. Discussion: Findings of this study can help to improve the counselling of couples at risk of transmitting a genetic disease to their offspring. Additionally, it provides insight into the joint informed decision-making process of couples. This could help professionals to better support both partners during consultations. [ABSTRACT FROM AUTHOR]

Abstract Background Stage 5 chronic kidney disease (CKD) patients often experience decisional conflict when faced with the selection between the initiation of dialysis and conservative care. The study examined the effects of a brief hope intervention (BHI) on the levels of hope, decisional conflict and the quality of life for stage 5 CKD patients. Methods This is a single-blinded, randomized controlled trial (ClinicalTrials.gov identifier: NCT03378700). Eligible patients were recruited from the outpatient department renal clinic of a regional hospital. They were randomly assigned to either the intervention or the control group (intervention: n = 35; control: n = 37). All participants underwent a customized pre-dialysis education class, while the intervention group received also BHI. Data were collected prior to the intervention, immediately afterwards, and one month following the intervention. The Generalized Estimating Equation was used to measure the effects in the level of hope, decisional conflict scores (DCS) and Kidney Disease Quality of life (KDQOL-36) scores. Estimated marginal means and standard errors with 95% confidence intervals of these scores were also reported to examine the within group and between group changes. Results An increase of the hope score was found from time 1 (29.7, 1.64) to time 3 (34.4, 1.27) in the intervention group. The intervention had a significant effect on the KDQOL-36 sub-scores Mental Component Summary (MCS) (Wald χ2 = 6.763, P = 0.009) and effects of kidney disease (Wald χ2 = 3.617, P = 0.004). There was a reduction in decisional conflict in both arms on the DCS total score (Wald χ2 = 7.885, P = 0.005), but the reduction was significantly greater in the control group (effect size 0.64). Conclusions The BHI appeared to increase the level of hope within the intervention arm. Nonetheless, differences across the intervention and control arms were not significant. The KDQOL-36 sub-scores on MCS and Effects of kidney disease were found to have increased and be higher in the intervention group. The DCS total score also showed that hope was associated with reducing decisional conflict. Trial Registration ClinicalTrials.gov Protocol Registration, NCT03378700 . Registered July 12 2017.

Background Oral anticoagulation reduces stroke and disability in atrial fibrillation (AF) but is underused. We evaluated the effects of a novel patient‐clinician shared decision‐making (SDM) tool in reducing oral anticoagulation patient's decisional conflict as compared with usual care. Methods and Results We designed and evaluated a new digital decision aid in a multicenter, randomized, comparative effectiveness trial, ENHANCE‐AF (Engaging Patients to Help Achieve Increased Patient Choice and Engagement for AF Stroke Prevention). The digital AF shared decision‐making toolkit was developed using patient‐centered design with clear health communication principles (eg, meaningful images, limited text). Available in English and Spanish, the toolkit included the following: (1) a brief animated video; (2) interactive questions with answers; (3) a quiz to check on understanding; (4) a worksheet to be used by the patient during the encounter; and (5) an online guide for clinicians. The study population included English or Spanish speakers with nonvalvular AF and a CHA2DS2‐VASc stroke score ≥1 for men or ≥2 for women. Participants were randomized in a 1:1 ratio to either usual care or the shared decision‐making toolkit. The primary end point was the validated 16‐item Decision Conflict Scale at 1 month. Secondary outcomes included Decision Conflict Scale at 6 months and the 10‐item Decision Regret Scale at 1 and 6 months as well as a weighted average of Mann–Whitney U‐statistics for both the Decision Conflict Scale and the Decision Regret Scale. A total of 1001 participants were enrolled and followed at 5 different sites in the United States between December 18, 2019, and August 17, 2022. The mean patient age was 69±10 years (40% women, 16.9% Black, 4.5% Hispanic, 3.6% Asian), and 50% of participants had CHA2DS2‐VASc scores ≥3 (men) or ≥4 (women). The primary end point at 1 month showed a clinically meaningful reduction in decisional conflict: a 7‐point difference in median scores between the 2 arms (16.4 versus 9.4; Mann–Whitney U‐statistics=0.550; P=0.007). For the secondary end point of 1‐month Decision Regret Scale, the difference in median scores between arms was 5 points in the direction of less decisional regret (P=0.078). The treatment effects lessened over time: at 6 months the difference in medians was 4.7 points for Decision Conflict Scale (P=0.060) and 0 points for Decision Regret Scale (P=0.35). Conclusions Implementation of a novel shared decision‐making toolkit (afibguide.com; afibguide.com/clinician) achieved significantly lower decisional conflict compared with usual care in patients with AF. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT04096781.

As uptake of rapid genome sequencing (GS) in the neonatal period steadily increases, a clinical genetics service that is optimized to the needs of parents becomes increasingly important. We aimed to investigate factors that influence decision making about rapid GS by parents of infants admitted to neonatal intensive care units (NICU) and explore their experiences of decisional conflict and anxiety during this time. Parents of neonates suspected of having a genetic disorder and offered rapid GS in the NICU completed a questionnaire measuring experience with GS counseling, decisional conflict, and anxiety level. Our results demonstrate that despite a largely positive GS experience (70%; 21/30) among the survey respondents, 50.0% (14/28) experienced moderate to severe anxiety measured using the GAD‐7 scale, and 34.6% (9/26) experienced decisional conflict measured using the SURE scale. We also showed that prematurity may be a modifier of anxiety in this group of parents and although not statistically significant, distance lived away from the hospital site could have practical significance. Open‐ended responses to survey questions highlighted that feeling overwhelmed, the types of engagements parents had with healthcare providers, and the timing of information provision also influenced parental decision making in this setting. We suggest that the GAD‐7 scale for generalized anxiety and SURE scale for decisional conflict could be incorporated by genetic counselors into routine care of parents of neonates who have been offered rapid GS to identify those who may need additional support (resources, information, or psychological). These tools may inform ways that communication between patients and providers can be improved and enhanced and clinical genetics services in the NICU can be optimized. We suggest that integrating genetic counselors into the NICU care team could increase access for this population and ensure delivery of optimized patient education and counseling. [ABSTRACT FROM AUTHOR]