A skills network approach to physicians’ competence in shared decision making

BackgroundMeasurement of physicians’ competence in shared decision making (SDM) remains challenging with frequent disagreement between assessment methods.ObjectiveTo conceptualize and measure physicians’ SDM competence as an organized network of behavioural skills and to determine whether processing patient‐reported data according to this model can be used to predict observer‐rated competence.DesignSecondary analysis of an observational study.Setting and participantsPrimary and specialty outpatient care physicians and consecutively recruited adult patients with a chronic condition who faced a treatment decision with multiple acceptable choices.MeasuresNetwork parameters constructed from patients’ assessment of physicians’ SDM skills as measured by the 9‐item Shared Decision Making Questionnaire (SDM‐Q‐9) and observer‐rated SDM competence of physicians measured by three widely used observer‐rated instruments.Results29 physicians (12 female, 17 male; mean age 50.3 years) recruited 310 patients (59.4% female, 40.6% male; mean age 54.0 years) facing a decision mainly regarding type 2 diabetes (36.4%), chronic back pain (32.8%) or depressive disorder (26.8%). Although most investigated skills were interrelated, elicitation of the patient''s treatment preferences showed the strongest associations with the other skills. Network parameters of this skill were also decisive in predicting observer‐rated competence. Correlation between predicted competence scores and observer‐rated measurements ranged from 0.710 to 0.785.ConclusionsConceptualizing physicians’ SDM competence as a network of interacting skills enables the measurement of observer‐rated competence using patient‐reported data. In addition to theoretical implications for defining and training medical competences, the findings open a new way to measure physicians’ SDM competence under routine conditions.     

Development of a patient decision aid for choice of surgical treatment for breast cancer

Purpose A patient decision aid for the surgical treatment of early stage breast cancer was developed and evaluated. The rationale for its development was the knowledge that breast conserving therapy (lumpectomy followed by breast radiation) and mastectomy produce equivalent outcomes, and the current general agreement that the decision for the type of surgery should rest with the patient.
Methods A decision aid was developed and evaluated in sequential pilot studies of 18 and 10 women with newly diagnosed breast cancer who were facing a decision for breast conserving therapy or mastectomy. Both qualitative (general reaction, self-reported anxiety, clarity, satisfaction) and quantitative (knowledge and decisional conflict) measures were assessed.
Results The decision aid consists of an audiotape and workbook and takes 36 min to complete. Based on qualitative comments and satisfaction ratings, 17 of 18 women reported a positive reaction to the decision aid, and all 18 reported that it helped clarify information given by the surgeon. Women did not report an increase in anxiety and 17 of 18 women were either satisfied or very satisfied with the decision aid.
Conclusion This pilot study supports the hypothesis that this decision aid may be a helpful adjunct in the decision for surgical management of early stage breast cancer. We are currently conducting a randomized trial of the decision aid versus a simple educational pamphlet to evaluate its efficacy as measured by knowledge, decisional conflict, anxiety and post-decisional regret.     

A treatment decision aid may increase patient trust in the diabetes specialist. The Statin Choice randomized trial

Aims Decision aids in practice may affect patient trust in the clinician, a requirement for optimal diabetes care. We sought to determine the impact of a decision aid to help patients with diabetes decide about statins (Statin Choice) on patients’ trust in the clinician. Methods We randomized 16 diabetologists and 98 patients with type 2 diabetes referred to a subspecialty diabetes clinic to use the Statin Choice decision aid or a patient pamphlet about dyslipidaemia, and then to receive these materials from either the clinician during the visit or a researcher prior to the visit. Providers and patients were blinded to the study hypothesis. Immediately after the clinical encounter, patients completed a survey including questions on trust (range 0 to total trust = 100), knowledge, and decisional conflict. Researchers reviewed videotaped encounters and assessed patient participation (using the OPTION scale) and visit length. Results Overall mean trust score was 91 (median 97.2, IQR 86, 100). After adjustment for patient characteristics, results suggested greater total trust (trust = 100) with the decision aid [odds ratio (OR) 1.77, 95% CI 0.94, 3.35]. Total trust was associated with knowledge (for each additional knowledge point, OR 1.3, 95% CI 1.1, 1.6), patient participation (for each additional point in the OPTION scale, OR 1.1, 95% CI 1.1, 1.2), and decisional conflict (for every 5‐point decrease in conflict, OR 1.5, 95% CI 1.2, 1.9). Total trust was not associated with visit length, which the decision aid did not significantly affect. There was no significant effect interaction across the trial factors. Conclusions Preliminary evidence suggests that decision aids do not have a large negative impact on trust in the physician and may increase trust through improvements in the decision‐making process.     

Information,deliberation, and decisional control preferences for participation in medical decision‐making and its influencing factors among Chinese cancer patients

BackgroundPatient‐centred care should strive to respond to the individual patient''s needs and preferences when possible. Yet, preferences of cancer patients for participation in different stages of the medical decision‐making process to increase matching of preferred and actual participation of the patients in decision‐making are not well known.ObjectiveThis study aimed to determine the level of information, deliberation and decisional control preferences in decision‐making practices among Chinese cancer patients and to explore their association with the sociodemographic and clinical variables of the patients.MethodsA cross‐sectional study was conducted involving a convenience sample of 328 cancer patients from three public hospitals in Guangzhou, China. The Patient Expectation for Participation in Medical Decision‐making Scale (PEPMDS) was used to evaluate information, deliberation and decisional control preferences of the patients. Binary logistic regressions were conducted to determine the association between sociodemographic variables, clinical variables and preferences of the patients.ResultsMost patients reported a high preference for information (73.2%) and deliberation (73.8%), while a small number (37.2%) reported a high preference for decisional control. Younger patients and patients with higher levels of education were significantly more likely to have a high preference for information, deliberation and decisional control. Patients with low annual family incomes were significantly more likely to have a low preference for decisional control.ConclusionPreferences of patients for involvement in different stages of decision‐making practices could vary. The level of preferences appears to be related to the patient''s age, education level, and financial status.Practice ImplicationsHealthcare providers should tailor the participatory approaches of patients considering individual preferences for information, deliberation and decisional control during medical decision‐making.Patient ContributionPatients participated in the survey and filled in the questionnaires.     

‘Triadic’ shared decision making in mental health: Experiences and expectations of service users,caregivers and clinicians in Germany

BackgroundShared decision making (SDM) in mental health may contribute to greater patient satisfaction and is sometimes associated with better health outcomes. Here, SDM should not only involve service users and clinicians but also involve the service users'' caregivers.AimThis study aimed to achieve better insight into the current SDM patterns of triads of service users, caregivers and clinicians in inpatient mental health care and the three parties'' expectations towards the prospects of triadic SDM.DesignThe current research uses data from a representative cross‐sectional study on caregivers in psychiatric inpatient treatment. We analysed data on n = 94 triads of service users, their caregivers and their clinicians.ResultsAll three parties acknowledge caregivers to be of great support to monitor the progress with mental disease. The caregiver''s role during consultations is most often described as being an expert, receiving or providing information and supporting service users. However, caregivers at times try to seek support for themselves during caregiver‐clinician interaction, or their behaviour was described as unhelpful. The potential prospects of caregiver involvement are clearly acknowledged despite the low implementation of caregiver involvement in this sample (only in one‐third of the cases).ConclusionTriadic SDM rarely takes place in routine inpatient care. First, there should be a focus on interventions aiming at inviting caregivers to consultations. Only in the second step should a better conceptualisation of triadic SDM be undertaken.Public ContributionEarly results were discussed with a local peer support group for caregivers of individuals living with mental illness.     

Influence of Shared Decision Making on Decisional Conflict and Regret in Postpartum Mother–Infant Care: A Randomized Controlled Trial

ObjectivesAlthough postpartum rooming-in is encouraged by the World Health Organization, independent separated nursery care is still widely adopted in Eastern countries. Our aim is to evaluate the effect of shared decision making (SDM) assisted by patient decision aids on subjective decisional conflict and regret among women who are required to make choices regarding postpartum infant care.MethodsA total of 196 pregnant women who came for routine checkups 1 month before delivery were randomly assigned to the SDM group or the classic group. Before the mothers were discharged after delivery, their decision-making difficulties were evaluated. The primary outcome was the decisional conflict, which was assessed using the SURE (Sure of myself; Understand information; Risk-benefit ratio; Encouragement) scale. The secondary outcome was the decisional regret, which was measured using the Decision Regret scale.ResultsCompared with the classic group, SDM group had surer feelings about the choice (P＜.001), felt more confident about knowing the benefits and risks of each option (P＜.001), had a clearer understanding of the benefits and risks (P＜.001), and felt sufficiently supported with enough advice to make a suitable choice (P＜.001). No significant difference was noted in the Decision Regret scores between groups. The choice of 24-hour rooming-in, 12-hour rooming-in, and separated nursery care was not significantly different between groups.ConclusionsSDM reduced the decisional conflict and uncertainty of the mothers. Available choices of postpartum mother–infant care should be provided to mothers through SDM that includes individual values, health goals, and clear knowledge and transparency.     

A decision aid to support family carers of people living with dementia towards the end‐of‐life: Coproduction process,outcome and reflections

BackgroundFamily carers of people living with dementia often need support with making decisions about care. Many find end‐of‐life care decisions particularly difficult. The aim of this article is to present an evidence‐ and theoretical‐based process for developing a decision aid to support family carers of people with dementia towards the end‐of‐life.MethodsFollowing a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision‐Making model.ResultsThe decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well‐being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers.ConclusionThis is the first decision aid that focusses on multiple decisions towards the end‐of‐life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction.Patient or Public ContributionFamily carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops.     

Randomized trial of a patient decision aid for choice of surgical treatment for breast cancer.

A decision aid for the surgical treatment of early breast cancer was evaluated in a randomized controlled trial. The decision aid, a tape and workbook, includes explicit presentation of probabilities, photographs and graphics, and a values clarification exercise. Community surgeons were randomized to use the decision aid or a control pamphlet. Patients completed a questionnaire prior to using the decision aid, after reviewing it but prior to surgery, and 6 months after enrollment. There was no difference in anxiety, knowledge, or decisional regret across the 2 groups. There was a nonsignificant trend toward lower decisional conflict in the decision aid group. A subgroup of women who were initially leaning toward mastectomy or were unsure had lower decisional conflict. Although the decision aid had minimal impact on the main study outcomes, a subgroup may have benefited. Such subgroups should be identified, and appropriate decision support interventions should be developed and evaluated.     

Impact of an educational video on patient decision making in early breast cancer treatment.

Previous research suggests that patient education programs promoting shared decision making (SDM) may improve patient satisfaction and outcomes, yet controlled clinical trials are lacking. The authors evaluate the impact of an early breast cancer treatment educational video on patients' decisional preferences and behavior. Newly diagnosed stage I/stage II breast cancer patients were assigned to SDM video program or control groups in alternating months. Surveys were administered prior to the provider visit and 1 week following the treatment decision. Variables assessed included autonomy preferences, perceived involvement in care, satisfaction, and treatment choice. There were no significant intervention effects on informational/decisional preferences, anxiety, knowledge, or satisfaction. Although 25% of SDM patients chose mastectomy compared to 14% of controls, this difference was not statistically significant. Eventhough enthusiasm for SDM programs remains high among some patients and providers, this study found only modest benefits.     

Development and evaluation of a breast cancer prevention decision aid for higher-risk women

Objective To develop and evaluate the effectiveness of a breast cancer prevention decision aid for women aged 50 and older at higher risk of breast cancer. Design Pre‐test–post‐test study using decision aid alone and in combination with counselling. Setting Breast Cancer Risk Assessment Clinic. Participants Twenty‐seven women aged 50–69 with 1.66% or higher 5‐year risk of breast cancer. Intervention Self‐administered breast cancer prevention decision aid. Main outcome measures Acceptability; decisional conflict; knowledge; realistic expectations; choice predisposition; intention to improve life‐style practices; psychological distress; and satisfaction with preparation for consultation. Results The decision aid alone, or in combination with counselling, decreased some dimensions of decisional conflict, increased knowledge (P < 0.01), and created more realistic expectations (P < 0.01). The aid in combination with counselling, significantly reduced decisional conflict (P < 0.01) and psychological distress (P < 0.02), helped the uncertain become certain (P < 0.02), and increased intentions to adopt healthier life‐style practices (P < 0.03). Women rated the aid as acceptable, and both women and practitioners were satisfied with the effect it had on the counselling session. Conclusion The decision aid shows promise as a useful decision support tool. Further research should compare the effect of the decision aid in combination with counselling to counselling alone.     

Patient perspectives on the need for implanted device information: Implications for a post‐procedural communication framework

BackgroundShared decision making and patient‐centred communication have become part of pre‐procedural decisions and perioperative care across medical specialties. However, gaps exist in patient communication about the implanted device received and the benefits in sharing information about their procedure and device.ObjectiveTo understand the patients'' knowledge of identifying information for their implanted devices and perspectives on sharing their implanted device information.MethodsFour focus groups were conducted with patients who had received a cardiac or vascular implanted device from one of the study sites within the previous 6 months. Data were transcribed and thematically analysed.ResultsFive themes emerged: lack of awareness of identifying information on implanted devices; value of information on implanted devices; varying trust with sharing device information; perceived risk with sharing device information; and lack of consensus on a systematic process for tracking implanted devices.DiscussionPatients desire post‐procedural information on their implanted device and a designated plan for longitudinal follow‐up, but lack trust and perceive risk with broadly sharing their implanted device information.ConclusionAfter receiving an implanted device, post‐procedural patient communication needs to be expanded to include identifying information on the device including the unique device identifier, how long‐term tracking will be supported and the process for notification in case of a problem with the device. This communication should also include education on how sharing device information supports patients'' long‐term health care, post‐market safety surveillance and research.Patient or Public ContributionThe research team included members who were also patients with implanted devices.     

How does trust affect patient preferences for participation in decision‐making?

Objective  Does trust in physicians aid or hinder patient autonomy? We examine the relationship between trust in the recipient''s doctor, and desire for a participative role in decisions about medical treatment. Design  We conducted a cross‐sectional survey in an urban Canadian teaching hospital. Setting and participants  A total of 606 respondents in three clinics (breast cancer, prostate cancer, fracture) completed questionnaires. Variables studied  The instrument included the Problem Solving Decision Making (PSDM) Scale, which used two vignettes (current health condition, chest pain) to categorize respondents by preferred role, and the Trust‐in‐Physician Scale. Results  Few respondents preferred an autonomous role (2.9% for the current health condition vignette and 1.2% for the chest pain vignette); most preferred shared decision‐making (DM) (67.3% current health condition; 48.7% chest pain) or a passive role (29.6% current health condition; 50.1% chest pain). Trust‐in‐physician yielded 6.3% with blind trust, 36.1% with high trust, 48.6% moderate trust and 9.0% low trust. As hypothesized, autonomous patients had relatively low levels of trust, passive respondents were more likely to have blind trust, while shared respondents had high but not excessive trust. Trust had a significant influence on preferred role even after controlling for the demographic factors such as sex, age and education. Conclusions  Very few respondents wish an autonomous role; those who do tend to have lower trust in their providers. Familiarity with a clinical condition increases desire for a shared (as opposed to passive) role. Shared DM often accompanies, and may require, a trusting patient–physician relationship.     

Why don't patients seek help for chronic post‐surgical pain after knee replacement? A qualitative investigation

BackgroundAlthough many people are satisfied with their outcome after total knee replacement surgery for osteoarthritis, around 20% report chronic post‐surgical pain. People are often disappointed and unsure about whether their pain is normal and what can be done about it. Given the high prevalence of long‐term post‐operative pain after knee replacement, there is potentially a large hidden population with an unaddressed need for care.ObjectiveIn this study, we focus on understanding why some people choose not to consult health care for chronic post‐surgical pain after knee replacement.MethodsSemi‐structured interviews were conducted with people who had received total knee replacement, at either of two National Health Service hospitals in the United Kingdom, and who had chronic post‐surgical pain (n = 34, age 55‐93 years). Data were audio‐recorded, transcribed and analysed thematically.ResultsWe found an overall sense of futility amongst participants who believed that nothing further could be done for their on‐going pain. People''s perception of their pain was often discordant with that of surgeons and physicians. Other factors that contributed to decisions not to seek help included low expectations about effectiveness and the risks involved in further treatment, treatment burden, participants'' prioritization of other health conditions and views about candidacy. Many accepted their on‐going pain.ConclusionOur study indicates why some people with chronic pain after knee replacement do not seek further health care. Understanding patients'' beliefs and expectations about chronic post‐surgical pain can inform approaches that might enable people to seek help in the future.     

The psychological burden of waiting for procedures and patient‐centred strategies that could support the mental health of wait‐listed patients and caregivers during the COVID‐19 pandemic: A scoping review

BackgroundWaiting for procedures delayed by COVID‐19 may cause anxiety and related adverse consequences.ObjectiveTo synthesize research on the mental health impact of waiting and patient‐centred mitigation strategies that could be applied in the COVID‐19 context.MethodsUsing a scoping review approach, we searched 9 databases for studies on waiting lists and mental health and reported study characteristics, impacts and intervention attributes and outcomes.ResultsWe included 51 studies that focussed on organ transplant (60.8%), surgery (21.6%) or cancer management (13.7%). Most patients and caregivers reported anxiety, depression and poor quality of life, which deteriorated with increasing wait time. The impact of waiting on mental health was greater among women and new immigrants, and those of younger age, lower socio‐economic status, or with less‐positive coping ability. Six studies evaluated educational strategies to develop coping skills: 2 reduced depression (2 did not), 1 reduced anxiety (2 did not) and 2 improved quality of life (2 did not). In contrast, patients desired acknowledgement of concerns, peer support, and periodic communication about wait‐list position, prioritization criteria and anticipated procedure date.ConclusionsFindings revealed patient‐centred strategies to alleviate the mental health impact of waiting for procedures. Ongoing research should explore how to optimize the impact of those strategies for diverse patients and caregivers, particularly in the COVID‐19 context.Patient or Public ContributionSix patients and four caregivers waiting for COVID‐19‐delayed procedures helped to establish eligibility criteria, plan data extraction and review a draft and final report.     

A national research centre for the evaluation and implementation of person‐centred care: Content from the first interventional studies

BackgroundPerson‐centred care (PCC) has been suggested as a potential means to improve the care of patients with chronic and long‐term disorders. In this regard, a model for PCC was developed by the University of Gothenburg Centre for Person‐Centred Care (GPCC).ObjectiveThe present study aimed to explore the theoretical frameworks, designs, contexts and intervention characteristics in the first 27 interventional studies conducted based on the ethics for person‐centredness provided by the GPCC.DesignCross‐sectional study.Setting and participantsA questionnaire to the principal investigators of the 27 intervention studies financed by the GPCC and conducted between 2010 and 2016.Main outcome measuresTheoretical frameworks, contexts of studies, person‐centred ethic, and outcome measures.ResultsMost of the interventions were based on the same ethical assumptions for person‐centredness but theories and models in applying the interventions differed. All studies were controlled; 12 randomized and 15 quasi‐experimental. Hospital in‐ and outpatient and primary care settings were represented and the outcome measures were related to the specific theories used. A complexity in designing, introducing and evaluating PCC interventions was evident.ConclusionThe frameworks, designs and interventions in the studies were in line with the established ethical basis of PCC, whereas outcome measures varied widely. Consensus discussions among researchers in the field are needed to make comparisons between studies feasible.Patient or public contributionsPatients or the public made no direct contributions, although most of the studied projects included such initiatives.     

Decision aids to prepare patients for shared decision making: Two randomized controlled experiments on the impact of awareness of preference‐sensitivity and personal motives

ObjectiveTo participate in shared decision making (SDM), patients need to understand their options and develop trust in their own decision‐making abilities. Two experiments investigated the potential of decision aids (DAs) in preparing patients for SDM by raising awareness of preference‐sensitivity (Study 1) and showing possible personal motives for decision making (Study 2) in addition to providing information about the treatment options.MethodsParticipants (Study 1: N = 117; Study 2: N = 217) were put into two scenarios (Study 1: cruciate ligament rupture; Study 2: contraception), watched a consultation video and were randomized into one of three groups where they received additional information in the form of (a) narrative patient testimonials; (b) non‐narrative decision strategies; and (c) an unrelated text (control group).ResultsParticipants who viewed the patient testimonials or decision strategies felt better prepared for a decision (Study 1: P < .001, ηP2 = 0.43; Study 2: P < .001, ηP2 = 0.57) and evaluated the decision‐making process more positively (Study 2: P < .001, ηP2 = 0.13) than participants in the control condition. Decision certainty (Study 1: P < .001, ηP2 = 0.05) and satisfaction (Study 1: P < .001, ηP2 = 0.11; Study 2: P = .003, d = 0.29) were higher across all conditions after watching the consultation video, and certainty and satisfaction were lower in the control condition (Study 2: P < .001, ηP2 = 0.05).DiscussionDecision aids that explain preference‐sensitivity and personal motives can be beneficial for improving people''s feelings of being prepared and their perception of the decision‐making process. To reach decision certainty and satisfaction, being well informed of one''s options is particularly relevant. We discuss the implications of our findings for future research and the design of DAs.     

Impact of a Decision Aid on Surrogate Decision-Makers' Perceptions of Feeding Options for Patients With Dementia

ObjectivesIn advanced dementia, feeding problems are nearly universal, and families face difficult decisions about feeding options. Initial interviews for a randomized trial were used to describe surrogates’ perceptions of feeding options, and to determine whether a decision aid on feeding options in advanced dementia would improve knowledge, reduce expectation of benefit from tube feeding, and reduce conflict over treatment choices for persons with advanced dementia.DesignSemistructured interview with prestudy and poststudy design for surrogates in the intervention group.SettingTwenty-four skilled nursing facilities across North Carolina participating in a cluster randomized trial.ParticipantsTwo hundred and fifty-five surrogate decision makers for nursing home residents with advanced dementia and feeding problems, in control (n = 129) and intervention (n = 126) groups.InterventionFor intervention surrogates only, an audiovisual-print decision aid provided information on dementia, feeding problems in dementia, advantages and disadvantages of feeding tubes or assisted oral feeding options, and the role of surrogates in making these decisions.MeasurementsThe interview included open-ended items asking surrogates to report advantages and disadvantages of tube feeding and assisted oral feeding. Knowledge of feeding options was measured with 19 true/false items and items measuring expectation of benefit from tube feeding. Surrogates reported which of these two feeding options they preferred for the person with dementia, and how confident they were in this choice; their level of conflict about the choice was measured using the decisional conflict scale.ResultsBefore the decision aid, surrogates described advantages and disadvantages of assisted oral feeding and tube feeding in practical, ethical, and medical terms. After review of the decision aid, intervention surrogates had improved knowledge scores (15.5 vs 16.8; P < .001), decreased expectation of benefits from tube feeding (2.73 vs 2.32; P = .001), and reduced decisional conflict (2.24 vs 1.91; P < .001). Surrogates preferred assisted oral feeding initially and reported more certainty about this choice after the decision aid.ConclusionsA structured decision aid can be used to improve decision making about feeding options in dementia care.