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1.  Shared Decision-Making and Health Care Expenditures Among Children With Special Health Care Needs 
Pediatrics  2012;129(1):99-107.
Background And Objectives
To understand the association between shared decision-making (SDM) and health care expenditures and use among children with special health care needs (CSHCN).
We identified CSHCN <18 years in the 2002–2006 Medical Expenditure Panel Survey by using the CSHCN Screener. Outcomes included health care expenditures (total, out-of-pocket, office-based, inpatient, emergency department [ED], and prescription) and utilization (hospitalization, ED and office visit, and prescription rates). The main exposure was the pattern of SDM over the 2 study years (increasing, decreasing, or unchanged high or low). We assessed the impact of these patterns on the change in expenditures and utilization over the 2 study years.
Among 2858 subjects representing 12 million CSHCN, 15.9% had increasing, 15.2% decreasing, 51.9% unchanged high, and 17.0% unchanged low SDM. At baseline, mean per child total expenditures were $2131. Over the 2 study years, increasing SDM was associated with a decrease of $339 (95% confidence interval: $21, $660) in total health care costs. Rates of hospitalization and ED visits declined by 4.0 (0.1, 7.9) and 11.3 (4.3, 18.3) per 100 CSHCN, and office visits by 1.2 (0.3, 2.0) per child with increasing SDM. Relative to decreasing SDM, increasing SDM was associated with significantly lower total and out-of-pocket costs, and fewer office visits.
We found that increasing SDM was associated with decreased utilization and expenditures for CSHCN. Prospective study is warranted to confirm if fostering SDM reduces the costs of caring for CSHCN for the health system and families.
PMCID: PMC3255469  PMID: 22184653
children with special health care needs; communication; decision-making; health care expenditures
2.  Shared Decision-Making in Pediatrics: A National Perspective 
Pediatrics  2010;126(2):306-314.
To identify patterns of shared decision-making (SDM) among a nationally representative sample of US children with attention-deficit/hyperactivity disorder (ADHD) or asthma and determine if demographics, health status, or access to care are associated with SDM.
We performed a cross-sectional study of the 2002–2006 Medical Expenditure Panel Survey, which represents 2 million children with ADHD and 4 million children with asthma. The outcome, high SDM, was defined by using latent class models based on 7 Medical Expenditure Panel Survey items addressing aspects of SDM. We entered factors potentially associated with SDM into logistic regression models with high SDM as the outcome. Marginal standardization then described the standardized proportion of children’s households with high SDM for each factor.
For both ADHD and asthma, 65% of children’s households had high SDM. Those who reported poor general health for their children were 13% less likely to have high SDM for ADHD (64 vs 77%) and 8% less likely for asthma (62 vs 70%) when adjusting for other factors. Results for behavioral impairment were similar. Respondent demographic characteristics were not associated with SDM. Those with difficulty contacting their clinician by telephone were 26% (ADHD: 55 vs 81%) and 29% (asthma: 48 vs 77%) less likely to have high SDM than those without difficulty.
These findings indicate that households of children who report greater impairment or difficulty contacting their clinician by telephone are less likely to fully participate in SDM. Future research should examine how strategies to foster ongoing communication between families and clinicians affect SDM.
PMCID: PMC3373306  PMID: 20624804
ADHD; asthma; communication; decision-making; telephone care
3.  Details for Manuscript Number: SSM-D-08-01910 R2 “Race and Shared Decision-Making: Perspectives of African-Americans with Diabetes” 
Shared decision-making (SDM) is an important component of patient-centered healthcare and is positively associated with improved health outcomes (e.g. diabetes and hypertension control). In shared decision-making, patients and physicians engage in bidirectional dialogue about patients' symptoms and treatment options, and select treatment plans that address patient preferences. Existing research shows that African-Americans experience SDM less often than whites, a fact which may contribute to racial disparities in diabetes outcomes. Yet little is known about the reasons for racial disparities in shared decision-making. We explored patient perceptions of how race may influence SDM between African-American patients and their physicians. We conducted in-depth interviews (n=24) and five focus groups (n= 27) among a purposeful sample of African-American diabetes patients aged over 21 years, at an urban academic medical center in Chicago. Each interview/focus group was audio-taped, transcribed verbatim and imported into Atlas.ti software. Coding was conducted iteratively; each transcription was independently coded by two research team members. Although there was heterogeneity in patients' perceptions about the influence of race on SDM, in each of the SDM domains (information-sharing, deliberation/physician recommendations, and decision-making), participants identified a range of race-related issues that may influence SDM. Participants identified physician bias/discrimination and/or cultural discordance as issues that may influence physician-related SDM behaviors (e.g. less likely to share information such as test results and more likely to be domineering with African-American patients). They identified mistrust of white physicians, negative attitudes and internalized racism as patient-related issues that may influence African-American patients' SDM behaviors (e.g. less forthcoming with physicians about health information, more deference to physicians, less likely to adhere to treatment regimens). This study suggests that race-related patient and physician-related barriers may serve as significant barriers to shared decision-making between African-American patients and their physicians. Finding innovative ways to address such communication barriers is an important area of future research.
PMCID: PMC2885527  PMID: 20409625
USA; shared decision-making; patient/provider communication; diabetes; race; African-Americans; health disparities; physicians
4.  Physicians’ Shared Decision-Making Behaviors in Depression Care 
Archives of internal medicine  2008;168(13):1404-1408.
Although shared decision making (SDM) has been reported to facilitate quality care, few studies have explored the extent to which SDM is implemented in primary care and factors that influence its application. This study assesses the extent to which physicians enact SDM behaviors and describes factors associated with physicians’ SDM behaviors within the context of depression care.
In a secondary analysis of data from a randomized experiment, we coded 287 audio-recorded interactions between physicians and standardized patients (SPs) using the Observing Patient Involvement (OPTION) system to assess physician SDM behaviors. We performed a series of generalized linear mixed model analyses to examine physician and patient characteristics associated with SDM behavior.
The mean OPTION score was 11.4 (SD=3.3) out of 48 possible points. Older physicians (partial correlation coefficient = −0.29, b = −0.09, p <.01) and physicians who practiced in an HMO setting (b = −1.60, p <.01) performed fewer SDM behaviors. Longer visit duration was associated with more SDM behaviors (partial correlation coefficient = 0.31, b = 0.08, p <.01). In addition, physicians enacted more SDM behaviors with SPs who made general (b = 2.46, p <.01) and brand-specific (b = 2.21, p <.01) medication requests compared with those who made no request.
In the context of new visits for depressive symptoms, primary care physicians performed few SDM behaviors. However, physician SDM behaviors are influenced by practice setting and patient-initiated requests for medication. Additional research is needed to identify interventions that encourage SDM when indicated.
PMCID: PMC2533269  PMID: 18625920
Shared Decision Making; Physician-Patient Relationship; Communication; Depression; Direct-to-Consumer Advertising
5.  Publication trends of shared decision making in 15 high impact medical journals: a full-text review with bibliometric analysis 
Shared Decision Making (SDM) is increasingly advocated as a model for medical decision making. However, there is still low use of SDM in clinical practice. High impact factor journals might represent an efficient way for its dissemination. We aimed to identify and characterize publication trends of SDM in 15 high impact medical journals.
We selected the 15 general and internal medicine journals with the highest impact factor publishing original articles, letters and editorials. We retrieved publications from 1996 to 2011 through the full-text search function on each journal website and abstracted bibliometric data. We included publications of any type containing the phrase “shared decision making” or five other variants in their abstract or full text. These were referred to as SDM publications. A polynomial Poisson regression model with logarithmic link function was used to assess the evolution across the period of the number of SDM publications according to publication characteristics.
We identified 1285 SDM publications out of 229,179 publications in 15 journals from 1996 to 2011. The absolute number of SDM publications by journal ranged from 2 to 273 over 16 years. SDM publications increased both in absolute and relative numbers per year, from 46 (0.32% relative to all publications from the 15 journals) in 1996 to 165 (1.17%) in 2011. This growth was exponential (P < 0.01). We found fewer research publications (465, 36.2% of all SDM publications) than non-research publications, which included non-systematic reviews, letters, and editorials. The increase of research publications across time was linear. Full-text search retrieved ten times more SDM publications than a similar PubMed search (1285 vs. 119 respectively).
This review in full-text showed that SDM publications increased exponentially in major medical journals from 1996 to 2011. This growth might reflect an increased dissemination of the SDM concept to the medical community.
PMCID: PMC4136407  PMID: 25106844
Shared decision making; Bibliometric analysis; Decision making; Full text search; Review; Information storage and retrieval; PubMed; Text mining
6.  Physicians’ Shared Decision-Making Behaviors in Attention-Deficit/Hyperactivity Disorder Care 
To describe the amount of shared decision-making (SDM) behavior exhibited during treatment planning encounters for children newly diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD) and to explore relationships between participant characteristics and amount of SDM
Prospective cohort study
Seven community-based primary care pediatric practices in the Cincinnati/Northern Kentucky/Southeast Indiana Region from October 5, 2009 to August 9, 2010
Ten pediatricians and 26 families with a 6–10 year old child newly diagnosed with ADHD
Outcome Measure
Amount of SDM behavior exhibited during video-recorded encounters as coded by two independent raters using a validated scale that produces a score ranging from 0 (no parental involvement) to 100 (maximal parental involvement)
Treatment decisions focused on medication initiation. The mean (SD) SDM score was 28.5 (11.7). More SDM was observed during encounters involving families with Caucasian children vs. non-Caucasian (adjusted mean difference score=14.9 [95% confidence interval=10.2, 19.6], p<0.001), private vs. public insurance (adjusted mean difference score=15.1 [11.2, 19.0], p<0.001), mothers with at least some college education vs. high school graduate or less (adjusted mean difference score=12.3 [7.2, 17.4], p<0.001), and parents who did not screen positive for serious mental illness vs. those who did (adjusted mean difference score=15.0 [11.9, 18.1], p<0.001).
Low levels of SDM were observed. Exploratory analyses identified potential disparities and barriers. Interventions may be needed to foster SDM with all parents, especially those of minority race, lower economic status, lower education level, and with serious mental illness.
PMCID: PMC3759988  PMID: 22065181
7.  Perceptions of Shared Decision Making and Decision Aids Among Rural Primary Care Clinicians 
Shared Decision Making (SDM) and Decision Aids (DAs) increase patients’ involvement in healthcare decisions and enhance satisfaction with their choices. Studies of SDM and DAs have primarily occurred in academic centers and large health systems, but most primary care is delivered in smaller practices and over 20% of Americans live in rural areas where poverty, disease prevalence and limited access to care may increase the need for SDM and DAs.
To explore perceptions and practices of rural primary care clinicians regarding SDM and DAs.
Cross sectional survey.
Setting and Participants
Primary care clinicians affiliated with the Oregon Rural Practice-based Research Network (ORPRN).
Surveys were returned by 181 of 231 eligible participants (78%), 174 could be analyzed. Two-thirds of participants were physicians, 84% practiced family medicine, and 55% were male. Sixty five percent of respondents were unfamiliar with the term “SDM”, but following definition, 97% reported they found the approach useful for conditions with multiple treatment options. Over 90% of clinicians perceived helping patients make decisions regarding chronic pain and health behavior change as moderate/hard in difficulty. Although 69% of respondents preferred that patients play an equal role in making decisions, they estimate this happens only 35% of the time. Time was reported as the largest barrier to engaging in SDM (63%). Respondents were receptive to using DAs to facilitate SDM in printed (95%) or web-based formats (72%) and topic preference varied by clinician specialty and decision difficulty.
Rural clinicians recognized the value of SDM and were receptive to using DAs in multiple formats. Integration of DAs to facilitate SDM in routine patient care may require addressing practice operation and reimbursement.
PMCID: PMC3665512  PMID: 22247423
Primary Care; Translating Research Into Practice; Shared Decision Making – Decision Aid Tools; Decision Aids – Decision Aid Tools; Survey Methods – Statistical Methods
8.  English language proficiency, health literacy, and trust in physician are associated with shared decision-making in rheumatoid arthritis 
The Journal of rheumatology  2014;41(7):1290-1297.
Treat to Target guidelines promote shared decision-making (SDM) in rheumatoid arthritis (RA). Also, due to high cost and potential toxicity of therapies, SDM is central to patient safety. Our objective was to examine patterns of perceived communication around decision-making in two cohorts of adults with RA.
Data were derived from patients enrolled in one of two longitudinal, observational cohorts (UCSF RA Cohort and RA Panel). Subjects completed a telephone interview in their preferred language that included a measure of patient-provider communication, including items about decision-making. Measures of trust in physician, education, and language proficiency were also asked. Logistic regression was performed to identify correlates of suboptimal SDM communication. Analyses were performed on each sample separately.
Of 509 patients across two cohorts, 30% and 32% reported suboptimal SDM communication. Low trust in physician was independently associated with suboptimal SDM communication in both cohorts. Older age and limited English proficiency were independently associated with suboptimal SDM in the UCSF RA Cohort, as was limited health literacy in the RA Panel.
This study of over 500 adults with RA from two demographically distinct cohorts found that nearly one-third of subjects report suboptimal SDM communication with their clinicians, regardless of cohort. Lower trust in physician was independently associated with suboptimal SDM communication in both cohorts, as was limited English language proficiency and older age in the UCSF RA Cohort and limited health literacy in the Panel. These findings underscore the need to examine the impact of SDM on health outcomes in RA.
PMCID: PMC4286372  PMID: 24931952
arthritis; rheumatoid; health communication; health literacy; trust
9.  Shared decision-making in antihypertensive therapy: a cluster randomised controlled trial 
BMC Family Practice  2013;14:135.
Hypertension is one of the key factors causing cardiovascular diseases. A substantial proportion of treated hypertensive patients do not reach recommended target blood pressure values. Shared decision making (SDM) is to enhance the active role of patients. As until now there exists little information on the effects of SDM training in antihypertensive therapy, we tested the effect of an SDM training programme for general practitioners (GPs). Our hypotheses are that this SDM training (1) enhances the participation of patients and (2) leads to an enhanced decrease in blood pressure (BP) values, compared to patients receiving usual care without prior SDM training for GPs.
The study was conducted as a cluster randomised controlled trial (cRCT) with GP practices in Southwest Germany. Each GP practice included patients with treated but uncontrolled hypertension and/or with relevant comorbidity. After baseline assessment (T0) GP practices were randomly allocated into an intervention and a control arm. GPs of the intervention group took part in the SDM training. GPs of the control group treated their patients as usual. The intervention was blinded to the patients. Primary endpoints on patient level were (1) change of patients’ perceived participation (SDM-Q-9) and (2) change of systolic BP (24h-mean). Secondary endpoints were changes of (1) diastolic BP (24h-mean), (2) patients’ knowledge about hypertension, (3) adherence (MARS-D), and (4) cardiovascular risk score (CVR).
In total 1357 patients from 36 general practices were screened for blood pressure control by ambulatory blood pressure monitoring (ABPM). Thereof 1120 patients remained in the study because of uncontrolled (but treated) hypertension and/or a relevant comorbidity. At T0 the intervention group involved 17 GP practices with 552 patients and the control group 19 GP practices with 568 patients. The effectiveness analysis could not demonstrate a significant or relevant effect of the SDM training on any of the endpoints.
The study hypothesis that the SDM training enhanced patients’ perceived participation and lowered their BP could not be confirmed. Further research is needed to examine the impact of patient participation on the treatment of hypertension in primary care.
Trial registration
German Clinical Trials Register (DRKS): DRKS00000125
PMCID: PMC3847233  PMID: 24024587
Hypertension; Shared decision-making; Ambulatory blood pressure monitoring; Educational training; Primary care; Family medicine; Cluster randomised controlled trial
10.  The Psychometric Properties of CollaboRATE: A Fast and Frugal Patient-Reported Measure of the Shared Decision-Making Process 
Patient-centered health care is a central component of current health policy agendas. Shared decision making (SDM) is considered to be the pinnacle of patient engagement and methods to promote this are becoming commonplace. However, the measurement of SDM continues to prove challenging. Reviews have highlighted the need for a patient-reported measure of SDM that is practical, valid, and reliable to assist implementation efforts. In consultation with patients, we developed CollaboRATE, a 3-item measure of the SDM process.
There is a need for scalable patient-reported measure of the SDM process. In the current project, we assessed the psychometric properties of CollaboRATE.
A representative sample of the US population were recruited online and were randomly allocated to view 1 of 6 simulated doctor-patient encounters in January 2013. Three dimensions of SDM were manipulated in the encounters: (1) explanation of the health issue, (2) elicitation of patient preferences, and (3) integration of patient preferences. Participants then completed CollaboRATE (possible scores 0-100) in addition to 2 other patient-reported measures of SDM: the 9-item Shared Decision Decision Making Questionnaire (SDM-Q-9) and the Doctor Facilitation subscale of the Patient’s Perceived Involvement in Care Scale (PICS). A subsample of participants was resurveyed between 7 and 14 days after the initial survey. We assessed CollaboRATE’s discriminative, concurrent, and divergent validity, intrarater reliability, and sensitivity to change.
The final sample consisted of 1341 participants. CollaboRATE demonstrated discriminative validity, with a significant increase in CollaboRATE score as the number of core dimensions of SDM increased from zero (mean score: 46.0, 95% CI 42.4-49.6) to 3 (mean score 85.8, 95% CI 83.2-88.4). CollaboRATE also demonstrated concurrent validity with other measures of SDM, excellent intrarater reliability, and sensitivity to change; however, divergent validity was not demonstrated.
The fast and frugal nature of CollaboRATE lends itself to routine clinical use. Further assessment of CollaboRATE in real-world settings is required.
PMCID: PMC3906697  PMID: 24389354
decision making; physician-patient relations; psychometrics/Instrumentation; patient participation; questionnaires; Internet
11.  Implementing Clinical Practice Guidelines About Health Promotion and Disease Prevention Through Shared Decision Making 
Clinical practice guidelines aim to improve the health of patients by guiding individual care in clinical settings. Many guidelines specifically about health promotion or primary disease prevention are beginning to support informed patient choice, and suggest that clinicians and patients engage in shared discussions to determine how best to tailor guidelines to individuals. However, guidelines generally do not address how to translate evidence from the population to the individual in clinical practice, or how to engage patients in these discussions. In addition, they often fail to reconcile patients’ preferences and social norms with best evidence. Shared decision making (SDM) is one solution to bridge guidelines about health promotion and disease prevention with clinical practice. SDM describes a collaborative process between patients and their clinicians to reach agreement about a health decision involving multiple medically appropriate treatment options. This paper discusses: 1) a brief overview of SDM; 2) the potential role of SDM in facilitating the implementation of prevention-focused practice guidelines for both preference-sensitive and effective care decisions; and 3) avenues for future empirical research to test how best to engage individual patients and clinicians in these complex discussions about prevention guidelines. We suggest that SDM can provide a structure for clinicians to discuss clinical practice guidelines with patients in a way that is evidence-based, patient-centered, and incorporates patients’ preferences. In addition to providing a model for communicating about uncertainty at the individual level, SDM can provide a platform for engaging patients in a conversation. This process can help manage patients’ and clinicians’ expectations about health behaviors. SDM can be used even in situations with strong evidence for benefits at the level of the population, by helping patients and clinicians prioritize behaviors during time-pressured medical encounters. Involving patients in discussions could lead to improved health through better adherence to chosen options, reduced practice variation about preference-sensitive options, and improved care more broadly. However, more research is needed to determine the impact of this approach on outcomes such as morbidity and mortality.
PMCID: PMC3663950  PMID: 23307397
shared decision making; practice guidelines; patient–clinician communication
12.  Family Impacts among Children with Autism Spectrum Disorder: The Role of Health Care Quality 
Academic pediatrics  2014;14(4):398-407.
To compare health care quality and family employment and financial impacts among children with special health care needs (CSHCN) with autism spectrum disorder (CSHCN+ASD), CSHCN with functional limitations (CSHCN+FL), and CSHCN lacking these conditions (other CSHCN). To test whether high health care quality was associated with reduced family impacts among CSHCN+ASD.
Data from the 2009-2010 National Survey of CSHCN were used to compare 3025 CSHCN+ASD, 6505 CSHCN+FL, and 28 296 other CSHCN. Weighted multivariate logistic regression analyses examined six age-relevant, federally-defined health care quality indicators and five family financial and employment impact indicators. Two composite measures were additionally used: (1) receipt of care that met all age-relevant quality indicators; and (2) had ≥ two of the five adverse family impacts.
Across all health care quality indicators CSHCN+ASD fared poorly, with only 7.4% meeting all age-relevant indicators. CSHCN+ASD had worse health care quality than other CSHCN, including CSHCN+FL. CSHCN+ASD also had high rates of adverse family impact, with over half experiencing two or more adverse impacts. Rates of adverse family impact were higher in CSHCN+ASD than other CSHCN, including CSHCN+FL. Among CSHCN+ASD, those whose health care that met federal quality standards were less likely to have multiple adverse family impacts than CSHCN+ASD whose health care did not meet federal quality standards.
CSHCN+ASD are more prone to experience poor health care quality and family impacts than other CSHCN, even CSHCN+FL. Receipt of care meeting federal quality standards may potentially lessen adverse family impacts for CSHCN+ASD.
PMCID: PMC4076703  PMID: 24976352
autism spectrum disorder; disabled children; family health; family burden; financial burden; quality of health care; delivery of health care; integrated
13.  Dutch Translation and Psychometric Testing of the 9-Item Shared Decision Making Questionnaire (SDM-Q-9) and Shared Decision Making Questionnaire-Physician Version (SDM-Q-Doc) in Primary and Secondary Care 
PLoS ONE  2015;10(7):e0132158.
The SDM-Q-9 and SDM-Q-Doc measure patient and physician perception of the extent of shared decision making (SDM) during a physician-patient consultation. So far, no self-report instrument for SDM was available in Dutch, and validation of the scales in other languages has been limited. The aim of this study was to translate both scales into Dutch and assess their psychometric characteristics.
Participants were patients and their treating physicians (general practitioners and medical specialists). Patients (N = 182) rated their consultation using the SDM-Q-9, 43 physicians rated their consultations using the SDM-Q-Doc (N = 201). Acceptability, reliability (internal consistency), and the factorial structure of the instruments were determined. For convergent validity the CPSpost was used.
Reliabilities of both scales were high (alpha SDM-Q-9 0.88; SDM-Q-Doc 0.87). The SDM-Q-9 and SDM-Q-Doc total scores correlated as expected with the CPSpost (SDM-Q-9: r = 0.29; SDM-Q-Doc: r = 0.48) and were significantly different between the CPSpost categories, with lowest mean scores when the physician made the decision alone. Principal Component Analyses showed a two-component model for each scale. A confirmatory factor analysis yielded a mediocre, but acceptable, one-factor model, if Item 1 was excluded; for both scales the best indices of fit were obtained for a one-factor solution, if both Items 1 and 9 were excluded.
The Dutch SDM-Q-9 and SDM-Q-Doc demonstrate good acceptance and reliability; they correlated as expected with the CPSpost and are suitable for use in Dutch primary and specialised care. Although the best model fit was found when excluding Items 1 and 9, we believe these items address important aspects of SDM. Therefore, also based on the coherence with theory and comparability with other studies, we suggest keeping all nine items of the scale. Further research on the SDM-concept in patients and physicians, in different clinical settings and different countries, is necessary to gain a better understanding of the SDM-construct and its measurement.
PMCID: PMC4494856  PMID: 26151946
14.  Contrasting Parents' and Pediatricians' Perspectives on Shared Decision-Making in ADHD 
Pediatrics  2010;127(1):e188-e196.
The goal was to compare how parents and clinicians understand shared decision-making (SDM) in attention-deficit/hyperactivity disorder (ADHD), a prototype for SDM in pediatrics.
We conducted semi-structured interviews with 60 parents of children 6 to 12 years of age with ADHD (50% black and 43% college educated) and 30 primary care clinicians with varying experience. Open-ended interviews explored how pediatric clinicians and parents understood SDM in ADHD. Interviews were taped, transcribed, and then coded. Data were analyzed by using a modified grounded theory approach.
Parents and clinicians both viewed SDM favorably. However, parents described SDM as a partnership between equals, with physicians providing medical expertise and the family contributing in-depth knowledge of the child. In contrast, clinicians understood SDM as a means to encourage families to accept clinicians' preferred treatment. These findings affected care because parents mistrusted clinicians whose presentation they perceived as biased. Both groups discussed how real-world barriers limit the consideration of evidence-based options, and they emphasized the importance of engaging professionals, family members, and/or friends in SDM. Although primary themes did not differ according to race, white parents more commonly received support from medical professionals in their social networks.
Despite national guidelines prioritizing SDM in ADHD, challenges to implementing the process persist. Results suggest that, to support SDM in ADHD, modifications are needed at the practice and policy levels, including clinician training, incorporation of decision aids and improved strategies to facilitate communication, and efforts to ensure that evidence-based treatment is accessible.
PMCID: PMC3010085  PMID: 21172996
shared decision-making; attention-deficit/hyperactivity disorder
15.  Validating a conceptual model for an inter-professional approach to shared decision making: a mixed methods study 
Rationale, aims and objectives
Following increased interest in having inter-professional (IP) health care teams engage patients in decision making, we developed a conceptual model for an IP approach to shared decision making (SDM) in primary care. We assessed the validity of the model with stakeholders in Canada.
In 15 individual interviews and 7 group interviews with 79 stakeholders, we asked them to: (1) propose changes to the IP-SDM model; (2) identify barriers and facilitators to the model's implementation in clinical practice; and (3) assess the model using a theory appraisal questionnaire. We performed a thematic analysis of the transcripts and a descriptive analysis of the questionnaires.
Stakeholders suggested placing the patient at its centre; extending the concept of family to include significant others; clarifying outcomes; highlighting the concept of time; merging the micro, meso and macro levels in one figure; and recognizing the influence of the environment and emotions. The most common barriers identified were time constraints, insufficient resources and an imbalance of power among health professionals. The most common facilitators were education and training in inter-professionalism and SDM, motivation to achieve an IP approach to SDM, and mutual knowledge and understanding of disciplinary roles. Most stakeholders considered that the concepts and relationships between the concepts were clear and rated the model as logical, testable, having clear schematic representation, and being relevant to inter-professional collaboration, SDM and primary care.
Stakeholders validated the new IP-SDM model for primary care settings and proposed few modifications. Future research should assess if the model helps implement SDM in IP clinical practice.
PMCID: PMC3170704  PMID: 20695950
conceptual model; decision coaching; inter-professionalism; primary care; shared decision making; validity
16.  Fostering shared decision making by occupational therapists and workers involved in accidents resulting in persistent musculoskeletal disorders: A study protocol 
From many empirical and theoretical points of view, the implementation of shared decision making (SDM) in work rehabilitation for pain due to a musculoskeletal disorder (MSD) is justified but typically the SDM model applies to a one on one encounter between a healthcare provider and a patient and not to an interdisciplinary team.
To adapt and implement an SDM program adapted to the realities of work rehabilitation for pain associated with a MSD. More specific objectives are to adapt an SDM program applicable to existing rehabilitation programs, and to evaluate the extent of implementation of the SDM program in four rehabilitation centres.
For objective one, we will use a mixed perspective combining a theory-based development program/intervention and a user-based perspective. The users are the occupational therapists (OTs) and clinical coordinators. The strategies for developing an SDM program will include consulting the scientific literature and group consensus with clinicians-experts. A sample of convenience of eight OTs, four clinical coordinators and four psychologists all of whom have been working full-time in MSD rehabilitation for more than two years will be recruited from four collaborating rehabilitation centres. For objective two, using the same criteria as for objective one, we will first train eight OTs in SDM. Second, using a descriptive design, the extent to which the SDM program has been implemented will be assessed through observations of the SDM process. The observation data will be triangulated with the dyadic working alliance questionnaire, and findings from a final individual interview with each OT. A total of five patients per trained OT will be recruited, for a total of 40 patients. Patients will be eligible if they have a work-related disability for more than 12 weeks due to musculoskeletal pain and plan to start their work rehabilitation programs.
This study will be the first evaluation of the program and it is expected that improvements will be made prior to a broader-scale implementation. The ultimate aim is to improve the quality of decision making, patients' quality of life, and reduce the duration of their work-related disability by improving the services offered during the rehabilitation process.
PMCID: PMC3068973  PMID: 21414207
17.  Shared Decision Making Does Not Influence Physicians against Clinical Practice Guidelines 
PLoS ONE  2013;8(4):e62537.
While shared decision making (SDM) and adherence to clinical practice guidelines (CPGs) are important, some believe they are incompatible. This study explored the mutual influence between physicians’ intention to engage in SDM and their intention to follow CPGs.
Embedded within a clustered randomized trial to assess the impact of training physicians in SDM about using antibiotics to treat acute respiratory tract infections, this study evaluated physicians’ intentions to both engage in SDM and follow CPGs. A self-administered questionnaire based on the theory of planned behavior evaluated both behavioral intentions and their respective determinants (attitude, subjective norm and perceived behavioral control) at study entry and exit. We used path analysis to explore the relationships between the intentions. We conducted statistical analyses using the maximum likelihood method and the variance-covariance matrix. Goodness of fit indices encompassed the chi-square statistic, the comparative fit index and the root mean square error of approximation.
We analyzed 244 responses at entry and 236 at exit. In the control group, at entry we observed that physicians’ intention to engage in SDM (r = 0, t = 0.03) did not affect their intention to follow CPGs; however, their intention to follow CPGs (r = −0.31 t = −2.82) did negatively influence their intention to engage in SDM. At exit, neither behavioral intention influenced the other. In the experimental group, at entry neither behavioral intention influenced the other; at exit, the intention to engage in SDM still did not influence the intention to use CPGs, although the intention to follow CPGs (r = −0.15 t = −2.02) slightly negatively influenced the intention to engage in SDM, but this was not clinically significant.
Physicians’ intention to engage in SDM does not affect their intention to adopt CPGs even after SDM training. Physicians’ intention to adopt CPGs had no clinically significant influence on intention to engage in SDM.
Trial Registration NCT01116076
PMCID: PMC3634782  PMID: 23638111
18.  Healthcare providers' intentions to engage in an interprofessional approach to shared decision-making in home care programs: A mixed methods study 
Journal of Interprofessional Care  2013;27(3):214-222.
In an interprofessional approach to shared decision-making (IP-SDM), an interprofessional team collaborates in identifying best options and helps patients determine their preferences, enabling them to take more control over the treatment plan. However, little is known about fostering IP-SDM in Canada's healthcare system. Therefore, we sought to evaluate health professionals' intentions to engage in IP-SDM in home care and explore the factors associated with this intention. A total of 272 eligible home care providers completed a questionnaire based on the theory of planned behavior. Eight managers and one healthcare team caring for the frail elderly were interviewed about possible barriers and facilitators. Analysis involved descriptive statistics and multivariate analysis of quantitative data and content analysis of qualitative data. On a scale of − 3 (strongly disagree) to +3 (strongly agree), the mean intention to engage in IP-SDM was positive (1.42 ± 1.39). The intention was influenced by the following theory-based determinants (R2 = 57%; p ≤ 0.002), i.e. cognitive attitude (p < 0.001) subjective norm (p < 0.0001) and perceived behavioral control (p < 0.0001), with variations depending on the type of provider. Barriers included lack of time, poor team cohesion and high staff turnover. Facilitators included team cohesion and shared tools. Future programs implementing IP-SDM could address these barriers and facilitators.
PMCID: PMC3665231  PMID: 23394265
Mixed methods; surveys; interprofessional collaboration; shared decision making; home care
19.  Shared Decision Making in Oncology Practice: What Do Oncologists Need to Know? 
The Oncologist  2012;17(1):91-100.
A perspective on how to incorporate shared decision making into routine oncology practice to facilitate patient-centered communication and promote effective treatment decisions is presented.
Learning Objectives
After completing this course, the reader will be able to: Outline the five steps that comprise shared decision making.Identify specific tactics that can be used to engage a patient in a shared decision making process.
This article is available for continuing medical education credit at
There is growing interest by patients, policy makers, and clinicians in shared decision making (SDM) as a means to involve patients in health decisions and translate evidence into clinical practice. However, few clinicians feel optimally trained to implement SDM in practice, and many patients report that they are less involved than they desire to be in their cancer care decisions. SDM might help address the wide practice variation reported for many preference-sensitive decisions by incorporating patient preferences into decision discussions.
This paper provides a perspective on how to incorporate SDM into routine oncology practice to facilitate patient-centered communication and promote effective treatment decisions. Oncology practice is uniquely positioned to lead the adoption of SDM because of the vast number of preference-sensitive decisions in which SDM can enhance the clinical encounter.
Clinicians can facilitate cancer decision making by: (a) determining the situations in which SDM is critical; (b) acknowledging the decision to a patient; (c) describing the available options, including the risks, benefits, and uncertainty associated with options; (d) eliciting patients' preferences; and (e) agreeing on a plan for the next steps in the decision-making process.
Given recent policy movements toward incorporating SDM and translating evidence into routine clinical practice, oncologists are likely to continue expanding their use of SDM and will have to confront the challenges of incorporating SDM into their clinical workflow. More research is needed to explore ways to overcome these challenges such that both quality evidence and patient preferences are appropriately translated and incorporated into oncology care decisions.
PMCID: PMC3267829  PMID: 22234632
Decision making; Decision support; Health communication
20.  Investigating a training supporting shared decision making (IT'S SDM 2011): study protocol for a randomized controlled trial 
Trials  2011;12:232.
Shared Decision Making (SDM) is regarded as the best practice model for the communicative challenge of decision making about treatment or diagnostic options. However, randomized controlled trials focusing the effectiveness of SDM trainings are rare and existing measures of SDM are increasingly challenged by the latest research findings. This study will 1) evaluate a new physicians' communication training regarding patient involvement in terms of SDM, 2) validate SDMMASS, a new compound measure of SDM, and 3) evaluate the effects of SDM on the perceived quality of the decision process and on the elaboration of the decision.
In a multi-center randomized controlled trial with a waiting control group, 40 physicians from 7 medical fields are enrolled. Each physician contributes a sequence of four medical consultations including a diagnostic or treatment decision.
The intervention consists of two condensed video-based individual coaching sessions (15min.) supported by a manual and a DVD. The interventions alternate with three measurement points plus follow up (6 months).
Realized patient involvement is measured using the coefficient SDMMASS drawn from the Multifocal Approach to the Sharing in SDM (MAPPIN'SDM) which includes objective involvement, involvement as perceived by the patient, and the doctor-patient concordance regarding their judges of the involvement. For validation purposes, all three components of SDMMASS are supplemented by similar measures, the OPTION observer scale, the Shared Decision Making Questionnaire (SDM-Q) and the dyadic application of the Decisional Conflict Scale (DCS). Training effects are analyzed using t-tests. Spearman correlation coefficients are used to determine convergent validities, the influence of involvement (SDMMASS) on the perceived decision quality (DCS) and on the elaboration of the decision. The latter is operationalised by the ELAB coefficient from the UP24 (Uncertainty Profile, 24 items version).
Due to the rigorous blinded randomized controlled design, the current trial promises valid and reliable results. On the one hand, we expect this condensed time-saving training to be adopted in clinical routine more likely than previous trainings. On the other hand, the exhaustivity of the MAPPIN'SDM measurement system qualifies it as a reference measure for simpler instruments and to deepen understanding of decision-making processes.
Trial registration
Current Controlled Trials ISRCTN78716079
PMCID: PMC3267675  PMID: 22029737
21.  Shared decision-making: the perspectives of young adults with type 1 diabetes mellitus 
Shared decision-making (SDM) is at the core of patient-centered care. We examined whether young adults with type 1 diabetes perceived the clinician groups they consulted as practicing SDM.
In a web-based survey, 150 Australians aged 18–35 years and with type 1 diabetes rated seven aspects of SDM in their interactions with endocrinologists, diabetes educators, dieticians, and general practitioners. Additionally, 33 participants in seven focus groups discussed these aspects of SDM.
Of the 150 respondents, 90% consulted endocrinologists, 60% diabetes educators, 33% dieticians, and 37% general practitioners. The majority of participants rated all professions as oriented toward all aspects of SDM, but there were professional differences. These ranged from 94.4% to 82.2% for “My clinician enquires about how I manage my diabetes”; 93.4% to 82.2% for “My clinician listens to my opinion about my diabetes management”; 89.9% to 74.1% for “My clinician is supportive of my diabetes management”; 93.2% to 66.1% for “My clinician suggests ways in which I can improve my self-management”; 96.6% to 85.7% for “The advice of my clinician can be understood”; 98.9% to 82.2% for “The advice of my clinician can be trusted”; and 86.5% to 67.9% for “The advice of my clinician is consistent with other members of the diabetes team”. Diabetes educators received the highest ratings on all aspects of SDM. The mean weighted average of agreement to SDM for all consultations was 84.3%. Focus group participants reported actively seeking clinicians who practiced SDM. A lack of SDM was frequently cited as a reason for discontinuing consultation. The dominant three themes in focus group discussions were whether clinicians acknowledged patients’ expertise, encouraged patients’ autonomy, and provided advice that patients could utilize to improve self-management.
The majority of clinicians engaged in SDM. Young adults with type 1 diabetes prefer such clinicians. They may fail to take up recommended health services when clinicians do not practice this component of patient-centered care. Such findings have implications for patient safety, improved health outcomes, and enhanced health service delivery.
PMCID: PMC3979791  PMID: 24729690
shared decision-making; patient perspective; patient-centered care; patient autonomy; type 1 diabetes; young adults; health service delivery; glycemic control
22.  Shared Decision Making and Other Variables as Correlates of Satisfaction with Health Care Decisions in a United States National Survey 
Patient education and counseling  2012;88(1):100-105.
The purpose of this study was to examine the relationship between shared decision-making (SDM) and satisfaction with decision (SWD) within a larger survey of patient decision-making in health care consultations.
A randomly selected age-proportionate national sample of adults (aged 21–70 years) stratified on race, ethnicity, and gender (N = 488) was recruited from a health research volunteer registry and completed an online survey with reference to a recent health consultation. Measures included the Shared Decision Making-9 questionnaire (SDM-Q-9), Satisfaction With Decision (SWD) scale, sociodemographic, health, and other standardized decision-making measures. Forward selection weighted multiple regression analysis was used to model correlates of SWD.
After controlling for sociodemographic variables, SDM-Q-9 total score was associated with SWD, adjusted R2 = .368, p < .001. Three of nine SDM-Q-9 items accounted for significant proportions of variance in SWD.
SDM was positively associated with SWD and was strongest for three areas of SDM: patients being helped in a health care consultation with understanding information, with treatment preference elicitation, and with weighing options thoroughly.
Practice Implications
By identifying variables such as SDM that are associated with SWD, health care interventions can better target modifiable factors to enhance satisfaction and other outcomes.
PMCID: PMC3492880  PMID: 22410642
shared decision-making; satisfaction with decision; patient-provider communication
23.  Exploring factors influencing asthma control and asthma-specific health-related quality of life among children 
Respiratory Research  2013;14(1):26.
Little is known about factors contributing to children’s asthma control status and health-related quality of life (HRQoL). The study objectives were to assess the relationship between asthma control and asthma-specific HRQoL in asthmatic children, and to examine the extent to which parental health literacy, perceived self-efficacy with patient-physician interaction, and satisfaction with shared decision-making (SDM) contribute to children’s asthma control and asthma-specific HRQoL.
This cross-sectional study utilized data collected from a sample of asthmatic children (n = 160) aged 8–17 years and their parents (n = 160) who visited a university medical center. Asthma-specific HRQoL was self-reported by children using the National Institutes of Health’s Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Asthma Impact Scale. Satisfaction with SDM, perceived self-efficacy with patient-physician interaction, parental health literacy, and asthma control were reported by parents using standardized measures. Structural equation modeling (SEM) was performed to test the hypothesized pathways.
Path analysis revealed that children with better asthma control reported higher asthma-specific HRQoL (β = 0.4, P < 0.001). Parents with higher health literacy and greater perceived self-efficacy with patient-physician interactions were associated with higher satisfaction with SDM (β = 0.38, P < 0.05; β = 0.58, P < 0.001, respectively). Greater satisfaction with SDM was in turn associated with better asthma control (β = −0.26, P < 0.01).
Children’s asthma control status influenced their asthma-specific HRQoL. However, parental factors such as perceived self-efficacy with patient-physician interaction and satisfaction with shared decision-making indirectly influenced children’s asthma control status and asthma-specific HRQoL.
PMCID: PMC3599064  PMID: 23432913
Asthma control; Health-related quality of life; PROMIS; Satisfaction with shared decision-making; Perceived self-efficacy with patient-physician interaction; Structural equation modeling
24.  A conceptual framework for interprofessional shared decision making in home care: Protocol for a feasibility study 
Shared decision making (SDM) is fundamental to informed consent and client-centered care. So far, SDM frameworks have been limited to the client-physician dyad, even though care is increasingly delivered by interprofessional (IP) teams. IP collaboration is especially essential in home care, one of health care's most rapidly growing areas. This study will assess whether it is possible to practice SDM in IP home care.
We will use a qualitative case study and a quantitative survey to capture the macro, meso and micro levels of stakeholders in home care. The case study will follow the knowledge-to-action process framework to evaluate the work of an IP home care team at a Quebec City health center. Sources of data will include one-on-one interviews with patients, family caregivers or surrogates and significant others, and administrators; a focus group of home care health professionals; organizational documents; and government policies and standards. The interview guide for the interviews and the focus group will explore current practices and clinical problems addressed in home care; factors that could influence the implementation of the proposed IP approach to SDM; the face and content validity of the approach; and interventions to facilitate the implementation and evaluation of the approach. The survey will ask 300 health professionals working in home care at the health center to complete a questionnaire based on the Theory of Planned Behaviour that measures their intentions to engage in an IP approach to SDM. We will use our analysis of the individual interviews, the focus group and the survey to elaborate a toolkit for implementing an IP approach to SDM in home care. Finally, we will conduct a pilot study in Alberta to assess the transferability of our findings.
We believe that developing tools to implement IP SDM in home care is essential to strengthening Canada's healthcare system and furthering patient-centered care. This study will contribute to the evaluation of IP SDM delivery models in home care. It will also generate practical, policy-oriented knowledge regarding the barriers and facilitators likely to influence the practice of IP SDM in home care.
PMCID: PMC3045286  PMID: 21281487
25.  Development and pilot testing of an online case-based approach to shared decision making skills training for clinicians 
Although research suggests that patients prefer a shared decision making (SDM) experience when making healthcare decisions, clinicians do not routinely implement SDM into their practice and training programs are needed. Using a novel case-based strategy, we developed and pilot tested an online educational program to promote shared decision making (SDM) by primary care clinicians.
A three-phased approach was used: 1) development of a conceptual model of the SDM process; 2) development of an online teaching case utilizing the Design A Case (DAC) authoring template, a well-tested process used to create peer-reviewed web-based clinical cases across all levels of healthcare training; and 3) pilot testing of the case. Participants were clinician members affiliated with several primary care research networks across the United States who answered an invitation email. The case used prostate cancer screening as the clinical context and was delivered online. Post-intervention ratings of clinicians’ general knowledge of SDM, knowledge of specific SDM steps, confidence in and intention to perform SDM steps were also collected online.
Seventy-nine clinicians initially volunteered to participate in the study, of which 49 completed the case and provided evaluations. Forty-three clinicians (87.8%) reported the case met all the learning objectives, and 47 (95.9%) indicated the case was relevant for other equipoise decisions. Thirty-one clinicians (63.3%) accessed supplementary information via links provided in the case. After viewing the case, knowledge of SDM was high (over 90% correctly identified the steps in a SDM process). Determining a patient’s preferred role in making the decision (62.5% very confident) and exploring a patient’s values (65.3% very confident) about the decisions were areas where clinician confidence was lowest. More than 70% of the clinicians intended to perform SDM in the future.
A comprehensive model of the SDM process was used to design a case-based approach to teaching SDM skills to primary care clinicians. The case was favorably rated in this pilot study. Clinician skills training for helping patients clarify their values and for assessing patients’ desire for involvement in decision making remain significant challenges and should be a focus of future comparative studies.
Electronic supplementary material
The online version of this article (doi:10.1186/1472-6947-14-95) contains supplementary material, which is available to authorized users.
PMCID: PMC4283132  PMID: 25361614
Decision making; Medical education; Primary health care

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