Preferred Role In Decision Research Articles

Understanding Patient Perspectives Toward Shared Decision-Making in Patients With Pulmonary Hypertension

Clinical guidelines for pulmonary hypertension (PH) recommend shared decision-making and individualized treatment. However, patient perspectives on PH treatment goals, preference toward a decision-making style of treatment, and adoption of shared decision-making remain unclear. This cross-sectional questionnaire-based study assessed the patients' preferred and actual participation role in treatment decision-making, rated on 5 scales (ranging from passive [patients leave all decisions to physicians] to active [patients make the decision after physicians show patients several options]) and evaluated the concordance between preferred and actual participation roles. The important factors underlying patients' perspectives in treatment decision-making (i.e., prognosis; symptom, financial, family, and social burdens; patient values; and physician recommendation) were evaluated. Univariate logistic regression analysis was performed to determine the patients with a positive preference toward "physician recommendation" in treatment decision-making. Among 130 patients with PH (median age: 58years; mean pulmonary arterial pressure: 23mm Hg; 27.7% were males), 59.2% preferred that "physicians make the decision regarding treatment after showing patients therapeutic options (i.e., intermediate between passive and active roles)." The patient-preferred and actual participation roles in decision-making had moderate agreement (Cohen's kappa=0.46). The most important factor in treatment decisions was "symptom burden reduction" (93.8%). Although 85.0% of patients chose "physician recommendation" as an important factor, 49.6% chose "alignment with my values." The determinants of patients who chose "physician recommendation" were less severe hemodynamics and better functional capacity. In conclusion, patients with PH preferred that the "physicians make the decision after showing patients therapeutic options" and prioritized physician recommendation over their values.

Shared Decision Making in Health Care Visits for CKD: Patients’ Decisional Role Preferences and Experiences

Research on shared decision making (SDM) in chronic kidney disease (CKD) has focused almost exclusively on the modality of kidney replacement treatment. We explored what other CKD decisions are recognized by patients, what their preferences and experiences are regarding these decisions, and how decisions are made during their interactions with medical care professionals. Cross-sectional study. Patients with CKD receiving (outpatient) care in 1 of 2 Dutch hospitals. Patients' preferred decisional roles fortreatment decisions were measured using theControl Preferences Scale survey administered after a health care visit with medical professionals. Number of decisions for which patients experienced a decisional role that did or did not match their preferred role. Observed levels of SDM and motivational interviewing in audio recordings of health care visits, measured using the 4-step SDM instrument (4SDM) and Motivational Interviewing Treatment Integrity coding tools. The results were characterized using descriptive statistics, including differences in scores between the patients' experienced and preferred decisional roles. According to the survey (n=122) patients with CKD frequently reported decisions regarding planning (112 of 122), medication changes (82 of 122), or lifestyle changes (59 of 122). Of the 357 reported decisions in total, patients preferred that clinicians mostly (125 of 357) or fully (101 of 357) make the decisions. For 116 decisions, they preferred a shared decisional role. For 151 of 357 decisions, the patients' preferences did not match their experiences. Decisions were experienced as "less shared/patient-directed" (76 of 357) or "more shared/patient-directed" (75 of 357) than preferred. Observed SDM in 118 coded decisions was low (median4; range, 0 - 22). Motivational interviewing techniques were rarely used. Potential recall and selection bias, and limited generalizability. We identified multiple discrepancies between preferred, experienced, and observed SDM in health care visits for CKD. Although patients varied in their preferred decisional role, a considerable number of patients expressed a preference for shared decision making for many decisions. However, SDM behavior during the health care visits was observed infrequently. Shared decision making (SDM) may be a valuable approach for common chronic kidney disease (CKD) decisions, but our knowledge is limited. We collected patient surveys after health care visits for CKD. Patients most frequently experienced decisions regarding planning, medication, and lifestyle. Three decisional roles were preferred by comparable numbers of patients: let the clinician alone decide, let the clinician decide for the most part, or "equally share" the decision. Patients' experiences of who made the decision did not always match their preferences. In audio recordings of the health care visits, we observed low levels of SDM behavior. These findings suggest that the preference for "sharing decisions" is often unmet for a large number of patients.

A prospective cohort study of decision-making role preferences of patients with advanced cancer and their family caregivers.

This study aimed to examine (1) the evolution of patients-caregiver dyad decision-making role preferences over 3years and the predictors of these preferences; and (2) discordance in decision-making role preferences among dyads. A total of 311 patients with advanced solid cancer and their caregivers in Singapore reported their preferences for decision-making roles every 3months. The predictors for decision-making role preferences among dyads were identified via the actor-partner interdependence framework using a mixed-effect ordered logistic model. The proportion of patients and caregivers preferring patient-led decision-making was higher at the end of third year compared to baseline (patients: 40% vs. 20%, p value <.01; caregivers: 33% vs. 21%, p value=.03). Patients with female (odds ratio [OR], 1.74; p value <.01) and older (1-year OR, 1.02; p value <.01) caregivers and younger patients (1-year OR, 0.97; p value <.01) preferred higher involvement in decision-making. Caregivers with tertiary education (vs. lower education) (OR, 1.59; p value= .02) and those who accurately understood patients' treatment goals (OR, 1.37; p value= .01) preferred greater patient involvement in decision-making. Conversely, caregivers of female patients (OR, 0.68; p value= .03) and younger patients (1-year OR, 0.98; p value <.01) preferred lesser patient involvement in decision-making. The proportion of patient-caregiver dyads with discordance in preferred decision-making was lower at the end of the third year (51%) compared to baseline (68%) (p value <.01). Despite a reduction in the proportion of dyads with discordance toward the end-of-life, the percentage with discordance remained high throughout the illness trajectory. Interventions facilitating open communication between dyads should be pursued in efforts to decrease dyadic discordance.

Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study

ObjectivesTo examine treatment decision-making priorities and experiences among parents of children with cancer in Guatemala.SettingThis study was conducted at Guatemala’s National Pediatric Cancer Center in Guatemala City.ParticipantsSpanish-speaking parents of paediatric...

Preferred Role in Health Care Decision Making Over Time in Patients With Heart Failure: My Decision or My Doctor's Decision?

Understanding patients' preferred role in decision making can improve patient-centered care. This study aimed to determine change and the predictors of change in preferred decision-making roles over time in patients with heart failure. During the CASA (Collaborative Care to Alleviate Symptoms and Adjust to Illness) trial, patients' preferred roles in decision making were measured using the Control Preferences Scale (range 1-5; higher = less active; n = 312) at 4 timepoints over 1 year. The effect of the CASA intervention on preferred decision-making roles was tested using generalized linear mixed models. Whether preferences changed over time in the whole population was determined using linear regression. Demographic and health-related factors were examined as predictors of change using multiple linear regression. At baseline, most participants preferred active (score 1-2, 37.2%) or collaborative (score 3, 44.9%) roles. The CASA intervention did not influence preferred decision-making roles (P > 0.1). Preferences significantly changed over 1 year (P < 0.01), becoming more active (82.1%, 84.2%, 89.0%, 90.1% active/collaborative at each timepoint). Among all models and covariates, there were no significant predictors of change (P > 0.1). Patients' preferred roles in decision making change over time, but changes are not well predicted. Clinicians should frequently and directly communicate with patients about their preferred decision-making roles.

How Involved Do Patients Want to Be in the Medical Decision-Making at the Initial Urogynecology Clinic Visit?

The aim of this study was to compare patients' preferred role in medical decision-making before the initial urogynecology visit to their perceived role after the visit. This prospective cohort study enrolled women presenting for their initial urogynecology visit. Before and after the visit, patients completed the Control Preference Scale (CPS), which categorizes the role that patients want to have in medical decision-making: active, collaborative, or passive. Patients also completed the Pelvic Floor Distress Inventory, CollaboRATE, Patient Global Impression of Improvement, patient satisfaction, and Short Test of Functional Health Literacy in Adults questionnaires. Univariable and multivariable generalized estimating equations were used. Women (n = 100) with a mean age of 59.1 years (SD = 15.5) participated in the study. Based on CPS before the visit, 50% of the women preferred active involvement, whereas 45% preferred collaborative and 5% preferred passive involvement. After the visit, these rates change to 40%, 48%, and 11%, respectively. On univariable analysis, women were 1.56 times more likely to report a collaborative or passive CPS response after the visit (P = 0.02). This remained true on multivariable analysis (odds ratio, 1.57; P = 0.04). Patients' CPS responses were not associated with their responses on CollaboRATE, Patient Global Impression of Improvement, patient satisfaction, or Short Test of Functional Health Literacy in Adults. Eighty-eight percent of women reported a fully collaborative visit based on CollaboRATE, and 87% reported being "completely satisfied" with the visit. Despite a change in women's reported involvement in decision-making after their first urogynecology visit compared with their preferences before the visit, most women perceived collaboration during their visit and were completely satisfied.

Task-Specific Patient Preferences for Shared Decision-Making in Hand Surgery.

Shared decision-making for surgery can increase patient engagement, satisfaction, and clinical outcomes. However, the level of involvement that patients desire at each step of the decision-making process is unknown. The authors surveyed patients at an academic hand surgery clinic to examine the preferred role in decision-making using validated questionnaires (i.e., Control Preference Scale, Problem-Solving Decision-Making Scale, and General Self-Efficacy Scale). The Control Preference Scale assesses general treatment preferences, whereas the Problem-Solving Decision-Making Scale distinguishes between problem-solving tasks (e.g., making diagnoses, calculating risks/benefits) and decision-making tasks. Patients' self-beliefs and perceived ability to handle difficult situations were assessed with the General Self-Efficacy Scale. The authors used linear regression models and ordinal logistic regression to examine the relationship between self-efficacy and patients' preferred role in treatment decision-making. Patients overall preferred an equal share of decision-making responsibility with the surgeon (mean Control Preference Scale score, 3.3 ± 0.7). Specifically, for problem-solving tasks, however, 81 percent of patients wanted to "hand over" the responsibility and 19 percent preferred shared decision-making. In contrast, for decision-making tasks, 54 percent of patients preferred shared decision-making. Each point increase in General Self-Efficacy Scale score correlated with 12 percent greater odds of preferring to retain the responsibility (OR, 1.12; 95 percent CI, 1.05 to 1.21; p = 0.001). However, self-efficacy did not show a significant effect for problem-solving tasks. The authors found that patients prefer surgeons to provide expert knowledge for problem-solving tasks but desire equal share of responsibility in decision-making tasks. The authors' findings support the current shift away from the paternalistic model of surgical decision-making, and provide an effective strategy to tailor shared decision-making to align care delivery with patient preferences.

Pediatric cancer communication in Guatemala.

e18508 Background: Effective diagnostic communication is a cornerstone of cancer care. While &gt; 90% of children with cancer live in low- and middle-income countries, little is known about patients’ and families’ communication priorities and experiences. We examined parent priorities for communication and the quality of information-exchange and decision-making during diagnostic communication in Guatemala. Methods: This study was conducted at Unidad Nacional de Oncologia Pediatrica. A cross-sectional survey was verbally administered in Spanish to 100 parents of children with cancer within 8 weeks of diagnosis. The survey included items utilized in pediatric communication studies from high-income countries and novel questions developed specifically for the study population. Results: Guatemalan parents prioritized communication functions including information exchange (99%), fostering healing relationships (98%), decision-making (97%), enabling self-management (96%) and managing uncertainty (94%) over functions such as responding to emotions (66%) and cultural awareness (48%). Almost all Guatemalan parents (96%) wanted as many details as possible about their child’s cancer. However, only 67% reported that they were always given the information they needed without asking for it, and most said they sometimes (56%) or always (18%) had questions they wanted to discuss with the doctor but did not. Half of parents (54%) correctly identified their child’s diagnosis, primary site, extent of disease (localized versus metastatic), length of proposed treatment, and treatment intent (curative versus palliative). Parents of children diagnosed with leukemia were more likely to understand all pieces of information than those whose children had solid tumors (p &lt; 0.001). Most parents (76%) preferred to share in decision-making with oncologists. Two-thirds of parents (65%) held their preferred role in decision-making, with fathers more likely to hold their preferred role than mothers (p = 0.02). Reflecting on decisions they had made, 94% of parents strongly agreed they had made the right decisions. However, 17% of parents endorsed feeling that their choices had caused their children harm. Conclusions: Similar to findings from the United States, parents in Guatemala prioritize many aspects of diagnostic communication, especially information exchange, development of healing relationships, and decision-making. Nonetheless, many parents report challenges in information exchange and decision-making, suggesting a need for interventions to support communication processes.

Health Literacy and Decisional Preferences in Hand Surgery

Patients increasingly prefer to be involved in health decisions. Shared decisions are associated with less decisional conflict and improved satisfaction. This study examines the relationship between health literacy and preferred decision-making role in patients seeking care for hand problems. We performed a cross-sectional study of 226 patients who were presenting to a hand service for the first time, who were older than 18 years, not pregnant, and fluent and literate in English. Patient demographic information, work status, and education level were collected from the patient. Diagnosis and insurance status were collected from the medical record. Pain interference, depression, and upper extremity function were measured using the Patient-Reported Outcomes Measurement Information System (PROMIS) questionnaires administered with computerized adaptive testing. Health literacy and preferred decision-making role were assessed using the Newest Vital Sign Test and Control Preference Scale, respectively. Discordance between preferred and actual decision-making role was assessed using the Control Preference Scale statements with the words "I prefer" omitted. Bivariate and multivariable logistic regressions were used to assess for factors associated with preferred decision-making role and discordance. Seventy-eight percent of patients preferred an active or collaborative, rather than a passive, role in decision making. Sixty-one percent felt they had achieved their preferred role. Preferred role and achievement of that role were not associated with health literacy, age, race, insurance, work status, diagnosis, pain intensity, symptoms of depression, and magnitude of self-reported activity limitations. More years of education was associated with a more active preferred decision-making role but not with obtaining that preferred role. Most people want to participate in decisions about their care even if they have low health literacy. Hand specialists can seek strategies to help people understand and participate in care decisions.

The Treatment Decision-making Preferences of Patients with Prostate Cancer Should Be Recorded in Research and Clinical Routine: a Pooled Analysis of Four Survey Studies with 7169 Patients

Different patients want to take different roles in the treatment decision-making process; these roles can be classified as passive, collaborative, and active. The aim of this study was to investigate the correlation between decision-making preferences among patients with prostate cancer and personal, disease-related, and structural factors. In four survey studies, we asked 7169 prostate cancer patients about their decision-making preferences using the Control Preferences Scale (CPS) and collected clinical, psychological, and quality-of-life measures. Most patients (62.2%) preferred collaborative decision-making, while 2322 (32.4%) preferred an active role, and only 391 (5.5%) preferred a passive role. Age (p < 0.001), data collection mode (p < 0.001), peer-to-peer support (p = 0.018), treatment status (p < 0.001), performed or planned radical prostatectomy (p < 0.001), metastatic disease (p = 0.001), and quality of life (p < 0.001) showed significant associations with patients’ preferred decision-making roles. Oncologic risk group, anxiety, and depression were not significant in the model. In particular, younger prostate cancer patients with higher quality of life completing an online survey want to play a more active role in treatment decision-making. Before treatment has started, patients tend to prefer collaborative decision-making. Few prostate cancer patients in Germany prefer a passive role. These patients are mostly older patients, patients with a metastatic disease, and patients who have opted for prostatectomy. Whether this finding reflects a generational effect or a tendency by age group and disease phase should be investigated. Further research is also needed to describe the causalities of these relationships. The CPS offers valuable information for personal counselling and should be applied in clinical routine. In a large group of patients with prostate cancer, we found that there is a strong desire for joint decision-making with the physician before the actual treatment. Especially younger men, men with active online behaviour, and men with a high quality of life want to be actively involved in therapy decision-making processes.

The Perception of Shared Decision-Making in Hematology by Patients and Physicians Seems Satisfactory, but Important Steps are Still Ahead of Us.

Supplemental Digital Content is available in the text

Role Incongruence and Psychological Stress Symptoms in Substitute Decision Makers of Intensive Care Patients.

Most intensive care patients require substitute decision makers (SDMs) to make decisions. The SDMs may prefer an active, shared, or passive decision-making role. Role incongruence is when preferred and actual roles differ. To evaluate the impact of decision-making role preferences and role incongruence on psychological distress symptoms in SDMs. A multicenter, interviewer-administered survey was conducted among SDMs of critically ill adults. The Control Preferences Scale was used to evaluate role preferences. Psychological distress was defined as anxiety, depression, or posttraumatic stress symptoms with predefined cut points on the Hospital Anxiety and Depression Scale (score > 10 on the anxiety or the depression subscale) and Impact of Events Scale (score > 30). One hundred eighty SDMs were recruited; 64% responded. Most were white (71%) and female (65%); 46% were spouses. Role preferences varied: active, 24%; shared, 44%; and passive, 31%. Almost half (49%) reported incongruence. Symptom prevalence was 50% for posttraumatic stress, 32% for anxiety, and 16% for depression. Most (56%) reported some psychological distress. In multivariable logistic regression, the composite outcome of psychological distress was independently associated with patient death (odds ratio, 2.95; 95% CI, 1.08-8.02; P = .03), female sex of SDM (odds ratio, 2.96; 95% CI, 1.49-5.89; P = .002), and incongruence (odds ratio, 3.26; 95% CI, 1.67-6.36; P < .001). Adverse psychological symptoms are prevalent in SDMs of critically ill patients and are related to role incongruence.

A cross-sectional study investigating patients' preferences regarding shared decision-making in adult orthodontic patients.

Introduction Shared decision-making (SDM) is a process by which patients and clinicians work collaboratively to make decisions about healthcare. Previously, research has shown that patients want to be more involved in decisions about their care, but more recent evidence suggests that some patients may not wish to have the level of involvement that is now expected of them.Aims This study therefore investigated adult orthodontic patients' preferred and perceived roles in treatment decision-making.Methods This cross-sectional study was carried out in a teaching hospital using the Control Preferences Scale (CPS). This involved asking patients to choose one of five cards relating, firstly, to their preferred role in orthodontic decision-making, and then their perceived role in their current orthodontic treatment decision-making, and these were compared.Results One hundred patients were recruited and perceived roles in decision-making tended to be more passive than those patients said they preferred. Males were significantly more likely to select a passive role than females (p = 0.018).Conclusions Adult orthodontic patients perceived a more passive role in their current treatment decisions than they would have preferred. This highlights the importance of clinicians asking patients about their preferred role in treatment decision-making from the outset.

Exploration of Decisional Control Preferences in Adolescents and Young Adults with Cancer and Other Complex Medical Conditions.

Purpose: Adolescent and young adults (AYA) with cancer encounter many medical treatment decisions but may have variable desires for involvement in decision-making. This study describes the degree of decisional control AYA patients preferred in complex medical decisions. Methods: A cross-sectional descriptive correlational design evaluated experienced AYA patients' decision-making role preferences using the Control Preference Scale and explored relationships in a proposed model of decision control. Results: Overall, most patients preferred an "active collaborative" role (39%), where the patient prefers to make the final decision with input from the provider, or a "shared decision-making" role (34%), wherein the decision is jointly made between patient and provider. Oncology AYA patients tended to prefer a more passive role than nononcology AYA patients. Time since diagnosis also positively correlated with control preference, with patients preferring a more active level of decisional control as the number of days from diagnosis increased. While no other statistically significant relationships were found between factors put forth in the exploratory model and decision control, there were strong associations between the factors themselves that warrant future study. Conclusion: The findings advance the knowledge of AYA preferences for decision-making involvement, enhancing our ability to identify patients at risk for low health care engagement and explore the consequences of limited or impaired decisional capacity. Future research might examine interventions to promote self-management skills and patient decisional role preferences, fulfilling the need to respect both the desire for decision-making involvement of some patients and the preference to defer to the expertise of providers for others.

Parental role in decision-making for pediatric surgery: Perceptions of involvement in consultations for tonsillectomy

ObjectiveParental role in decision-making has implications for quality of care. We describe roles of parent participation in decision-making for tonsillectomy. MethodsParents reported preferred role in decision-making before consultations for tonsillectomy and the role they experienced after their consult. Parents completed questionnaires, including items evaluating clinician/parent communication. Clinicians rated perception of parents’ preferred role in decision-making. Congruence between parent and clinician responses was evaluated via kappa analysis. Logistic regression identified associations between decision-making roles and socioemotional and communication factors. ResultsConsults between 63 parents and 8 otolaryngologists were analyzed.There was inadequate agreement between clinician and parent ratings of preferred roles (37%, p = 0.6, 95% CI [-0.09, 0.001]). Parents perceived greater involvement when clinicians discussed reasons to have (OR = 4.3, p = 0.03) or not have (OR = 4.1, p = 0.005) surgery. Parents perceived less involvement when clinicians used jargon (OR = 0.1, p = 0.03), and when parents trusted clinicians (OR = 0.4, p = 0.049), or experienced greater decisional conflict (OR = 0.9, p = 0.03). ConclusionsParents and clinicians perceived parental preference for decision-making involvement differently during consultations for tonsillectomy. Clinician information-sharing, jargon use, and parent trust in clinician predicted extent of perceived engagement. Practice implicationsFindings may enhance understanding of strategies to effectively communicate and engage parents in shared decision-making for pediatric surgical care.

Tapering Biologic Therapy for Rheumatoid Arthritis: A Qualitative Study of Patient Perspectives.

Biologic therapies are cost effective for active rheumatoid arthritis but have adverse effects and are costly. Tapering of biologics is emerging as an important consideration when sustained remission is achieved. Recent trials have highlighted the clinical feasibility of tapering, but there is little evidence on how proposed tapering would be received by patients. The aim of this study was to explore factors influencing hypothetical decisions of patients with rheumatoid arthritis on tapering their biologics and their perspectives on remission and flare when considering the possibility of tapering. Patients with rheumatoid arthritis with diverse experiences of biologics with different modes of administration were purposively sampled to participate in one of six focus groups (n = 43) or an individual interview (n = 2). Transcripts were analyzed using inductive thematic analysis. Five overarching themes on what influences a participant's decision to taper their biologic were identified. First, participants were fearful of uncertain outcomes of tapering, especially flare and joint damage. Second, participants prioritized quality of life from continuing biologics over the risk of adverse effects. Third, tapering biologics was seen as providing relief from the inconvenience of taking biologics regularly. Fourth, participants wanted assurance of prompt access to healthcare if their rheumatoid arthritis were to flare when tapering. Fifth, preferences for involvement in decision making varied, but fulfilling information needs was desired to aid a patient's preferred role in decision making on tapering. This study provides novel insight into the perspectives of patients with rheumatoid arthritis on tapering biologics when sustained remission is achieved at a crucial juncture in global affordability for healthcare systems. These patient perspectives can inform the planning of decision aids and clinical trials of decision-making processes when tapering is proposed.

Do parents of children with cancer want to participate in treatment decision-making?

This study aimed to describe parents' preferences regarding their role in treatment decision-making when a child has cancer and examines whether their preferences were related to parents sociodemographic characteristics (sex and education level), patients' characteristics (age group and treatment status), and healthcare context features (parents' perception of family-centered care). Two hundred and twenty-eight parents of children/adolescents with cancer were recruited from two Portuguese pediatric oncology wards. Participants provided sociodemographic and clinical information. The Control Preferences Scale for Pediatrics was used to assess the parents' preferred role in treatment decision-making. The Measure of Process of Care assessed the parents' perception of family-centered care (family-centered services and providing general information subscales). Results showed that parents preferred a passive-collaborative role (45.2%), followed by collaborative (27.2%), passive (21.0%), and active-collaborative (6.6%). None preferred an active role. Chi-square test showed that the group of parents preferring a passive role had a lower proportion of more-educated parents, compared to those preferring active-collaborative or collaborative roles. Additionally, groups did not proportionally differ according to the parents' sex, patients' age, and treatment status. A multivariate analysis of variance showed that parents preferring an active-collaborative role reported lower mean scores on family-centered services compared to those preferring passive-collaborative and passive roles. Finally, no significant differences were found concerning providing general information. This study's findings may guide professionals in identifying parents' preferences regarding their participation in treatment decision-making process. Mapping their preferences may support professionals in promoting desirable levels of parental involvement in decisions in pediatric oncology context.

Older adults’ preferred and perceived roles in decision making about palliative chemotherapy: Their decision priorities, and information preferences.

11546 Background: We sought older adults’ preferred and perceived roles in decision-making about palliative chemotherapy; their decision-making priorities; and information received and desired. Methods: Patients aged ≥65 years with incurable cancer who had discussed palliative chemotherapy with an oncologist and made a decision about whether or not to receive palliative chemotherapy were invited to complete a written questionnaire. Preferred and perceived decision-making roles were assessed by the Control Preferences Scale (CPS). Associations with preferred decision-making role were examined using Wilcoxon rank sum tests. Factors important in making a decision about chemotherapy, and receipt of and desire for information were described. Results: The 179 respondents had a median age of 74 years (range 65 to 92 years). Most were male (114, 64%) and had chosen to receive chemotherapy (148, 83%). Half (92, 52%) were vulnerable by the Vulnerable Elders Survey-13 (score ≥3). Preferred decision-making roles (n = 173) were active in 39%, collaborative in 27%, and passive in 35%. Perceived decision-making roles (n = 172) were active in 42%, collaborative in 22%, and passive in 36%, and matched the preferred role for 63% of patients. Preference for an active role was associated with being single/widowed (p = 0.004, OR 1.49) and declining chemotherapy (p = 0.02, OR 2). Factors ranked most important when making a decision about chemotherapy (n = 159) were “doing everything possible” (30%), “my doctor’s recommendation” (26%), “my quality of life” (20%), and “living longer” (15%). A minority expected chemotherapy to cure their cancer (14%). Most had discussed expectations of cure (70%), side effects (88%) and benefits (82%) of chemotherapy, though fewer had received quantitative prognostic information (49%) than desired this (67%). Conclusions: Older adults showed varied preferences for involvement in decision-making about palliative chemotherapy, and most played the role that they preferred. To facilitate shared decision-making, oncologists should seek patients’ decision-making preferences, priorities and information needs when discussing palliative chemotherapy.

Parenting stress in mothers of children with congenital hand or foot differences and its effect on the surgical decision-making for their children.

The main purposes of this study were to assess the levels of parenting stress in the mothers of children with congenital hand or foot differences and to evaluate the effects of this stress on the preferred roles of mothers in surgical decision-making for their children. This study included 89 mothers of children with polydactyly of the hand, polydactyly of the foot, a hypoplastic thumb, or macrodactyly. The parenting stress level was assessed using the Parenting Stress Index-Short Form (PSI-SF). Additionally, the mothers were requested to indicate their preferred and retrospectively perceived levels of involvement in surgical decision-making for their children using the Control Preferences Scale, which is comprised of five levels ranging from fully active to fully passive. The average PSI-SF scores were 73.9, and 15 mothers (17%) had a clinically significant level of stress (PSI-SF ≥ 90). In the mothers of children with polydactyly of the foot, the PSI score was associated with the preferred role in surgical decision-making. The assessment of parenting stress levels in the mothers of children with congenital hand or foot differences can play an important role in the screening of candidates who require psychiatric treatment or support. An evaluation of the PSI in mothers of children with congenital hand or foot differences may aid physicians to modify their style of decision-making based on the preferred role of the mother. Level of evidence: Level IV Therapeutic study.

Patient Preferred and Perceived Control in Dental Care Decision Making.

Shared decision making is increasingly considered the most desirable model for making decisions in medical and dental settings. It supports patients by empowering them to play an active role in the decision-making process. However, dental patients' involvement needs and perceptions have not yet been sufficiently assessed. The aim of this study was to assess patients' preferred roles in decision making for a range of dental treatments and whether patients' preferences are being met. Based on a cross-sectional study design, dental patients' autonomy preferences and actual perceived roles were surveyed in the context of existing dental appointments in a consecutive sample of 101 adult dental patients (aged 20 to 79 y). The questionnaire for the assessment of patient preferred and perceived roles in dental decision making consisted of 14 items, each representing a decision in the broad spectrum of preventive and restorative dental treatment planning, and was administered before the dental appointment and immediately afterward. Responses for each item were indicated on an ordinal 5-point scale, which was adapted from the Control Preference Scale. Differences in overall levels of control and responses for each decision were tested for statistical significance per the Wilcoxon matched-pairs signed-rank test. Furthermore, a multilevel mixed effects linear regression model was computed. Patients rated their preferred role in decision making more active and involved than their perceived role. This effect was observed and statistically significant ( P < 0.05) for 11 of 14 treatment decisions. Perceived roles (follow-up) matched the preferred roles (baseline) for less than half of patients. None of the sociodemographic characteristics had a substantial statistical effect on whether perceived roles matched the preferred roles. Dental patients' perceived roles in decision making do not meet their preferences. Dentists should allow and encourage their patients to be more active in decision making. Since dental patients' perceived roles in decision making do not meet their preferences, clinicians should encourage and enable their dental patients to fulfill the role in decision making that they prefer. This may help in the future to not only fulfill the right of patients to be informed but also empower them to play an active role in the decision-making process and reduce the risk of decisional conflicts.