Shared Decision Making among Children with Medical Complexity: Results from a Population-Based Survey

OBJECTIVES/SPECIFIC AIMS: Children with medical complexity (CMC) comprise less than 5% of the pediatric population and over 40% of pediatric spending, yet receive poorer quality health care compared with other children. The American Academy of Pediatrics recently identified shared decision making (SDM) as a key quality indicator for CMC, but there is no consensus model for SDM in CMC. Objective: To create a model of SDM from perspectives of parents of CMC. METHODS/STUDY POPULATION: Interviews with parents of CMC explored SDM preferences and experiences. Eligible parents were ≥18 years old, English-speaking or Spanish-speaking, with a CMC <12 years old. Interviews were recorded, transcribed, and analyzed by 3 independent coders for shared themes using grounded theory. RESULTS/ANTICIPATED RESULTS: Interviews were with 31 parents [26 English speakers, median parent age 33 years (SD 11), median child age 3 years (SD 3.6)] in inpatient and outpatient settings. We identified specific, unique components of SDM that affect decision quality, the alignment of a decision with the parent’s preferences and values. Themes included: concerns about uncertainty of the child’s life trajectory, conflict during parent-provider communication, health system factors such as provider schedule; parent agency, and the influence of the source of information. DISCUSSION/SIGNIFICANCE OF IMPACT: Our findings provide specific components of SDM unique to CMC that can inform future research and interventions to support SDM for parents and providers of CMC.

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Parent Perspectives in Shared Decision-Making for Children With Medical Complexity

Academic Pediatrics ◽

10.1016/j.acap.2020.06.008 ◽

2020 ◽

Vol 20 (8) ◽

pp. 1101-1108

Author(s):

Jody L. Lin ◽

Catherine L. Clark ◽

Bonnie Halpern-Felsher ◽

Paul N. Bennett ◽

Shiri Assis-Hassid ◽

...

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Shared Decision ◽

Parent Perspectives ◽

Children With Medical Complexity ◽

Medical Complexity

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Feasibility of implementing systematic social needs assessment for children with medical complexity

Implementation Science Communications ◽

10.1186/s43058-021-00237-3 ◽

2021 ◽

Vol 2 (1) ◽

Author(s):

David Y. Ming ◽

Kelley A. Jones ◽

Elizabeth Sainz ◽

Heidie Tkach ◽

Amy Stewart ◽

...

Keyword(s):

Decision Making ◽

Needs Assessment ◽

Shared Decision Making ◽

Tertiary Care ◽

Social Needs ◽

Complex Care ◽

Shared Decision ◽

Children With Medical Complexity ◽

Implementation Outcomes ◽

Medical Complexity

Abstract Background Children with medical complexity (CMC) have inter-related health and social needs; however, interventions to identify and respond to social needs have not been adapted for CMC. The objective of this study was to evaluate the feasibility of implementing social needs screening and assessment within pediatric complex care programs. Methods We implemented systematic social needs assessment for CMC (SSNAC) at two tertiary care centers in three phases: (1) pre-implementation, (2) implementation, and (3) implementation monitoring. We utilized a multifaceted implementation package consisting of discrete implementation strategies within each phase. In phase 1, we adapted questions from evidence-informed screening tools into a 21-item SSNAC questionnaire, and we used published frameworks to inform implementation readiness and process. In phases 2–3, clinical staff deployed the SSNAC questionnaire to parents of CMC in-person or by phone as part of usual care and adapted to local clinical workflows. Staff used shared decision-making with parents and addressed identified needs by providing information about available resources, offering direct assistance, and making referrals to community agencies. Implementation outcomes included fidelity, feasibility, acceptability, and appropriateness. Results Observations from clinical staff characterized fidelity to use of the SSNAC questionnaire, assessment template, and shared decision-making for follow-up on unmet social needs. Levels of agreement (5-point Likert scale; 1 = completely disagree; 5 = completely agree) rated by staff for key implementation outcomes were moderate to high for acceptability (mean = 4.7; range = 3–5), feasibility (mean = 4.2; range = 3–5), and appropriateness (mean = 4.6; range = 4-5). 49 SSNAC questionnaires were completed with a 91% response rate. Among participating parents, 37 (76%) reported ≥ 1 social need, including food/nutrition benefits (41%), housing (18%), and caregiver needs (29%). Staff responses included information provision (41%), direct assistance (30%), and agency referral (30%). Conclusions It was feasible for tertiary care center-based pediatric complex care programs to implement a standardized social needs assessment for CMC to identify and address parent-reported unmet social needs.

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Opportunities to Optimize Shared Decision Making About Tracheostomy for Children with Medical Complexity

10.1164/ajrccm-conference.2020.201.1_meetingabstracts.a1920 ◽

2020 ◽

Author(s):

W.A. Gower ◽

S.L. Golden ◽

N.M.P. King ◽

S. Nageswaran

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Shared Decision ◽

Children With Medical Complexity ◽

Medical Complexity

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A population-based, shared decision-making approach to recruit for a randomized trial of bariatric surgery versus lifestyle for type 2 diabetes

Surgery for Obesity and Related Diseases ◽

10.1016/j.soard.2013.05.006 ◽

2013 ◽

Vol 9 (6) ◽

pp. 837-844 ◽

Cited By ~ 10

Author(s):

David Arterburn ◽

David R. Flum ◽

Emily O. Westbrook ◽

Sharon Fuller ◽

M.A. Mary Shea, ◽

...

Keyword(s):

Type 2 Diabetes ◽

Bariatric Surgery ◽

Decision Making ◽

Randomized Trial ◽

Shared Decision Making ◽

Population Based ◽

Shared Decision

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The association between physician trust and prostate-specific antigen screening: Implications for shared decision-making

Canadian Urological Association Journal ◽

10.5489/cuaj.5351 ◽

2018 ◽

Vol 12 (12) ◽

Author(s):

Zachary Klaassen ◽

Christopher J.D. Wallis ◽

Hanan Goldberg ◽

Thenappan Chandrasekar ◽

Neil E. Fleshner ◽

...

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Prostate Cancer Screening ◽

Specific Antigen ◽

Population Based ◽

Cancer Information ◽

Shared Decision ◽

Screening Guidelines ◽

Psa Screening ◽

Patient Reported

Introduction: Shared decision-making is widely recommended when men are considering prostate cancer screening with prostatespecific antigen (PSA). The role of patients’ trust in cancer information from their physician in such decisions is unknown. Methods: We identified male respondents ≥18 years of age from the Health Information National Trends Survey, a population-based survey of people living in the U.S. (2011–014). We assessed the association between degree of trust in cancer information from respondent’s physician with patient-reported receipt of PSA screening and patient-reported discussion of PSA screening with their physician. Results: Among 5069 eligible respondents, 3606 (71.1%) men reported trusting cancer information from their physician “a lot,” 1186 (23.4%) “somewhat,” 219 (4.3%) “a little,” and 58 (1.1%) “not at all.” A total of 2655 (52.4%) men reported receiving PSA screening. The degree of trust an individual had in his physician for cancer information was strongly associated with his likelihood of having received PSA screening (ptrend<0.0001) (54.9% “a lot” vs. 27.6% “not at all”). These findings persisted after multivariable regression. Similarly, men who had high levels of trust in their physician were more likely to have discussed PSA screening with a strong trend across strata (ptrend<0.0001). Conclusions: The level of trust an individual has in cancer information from his physician is strongly associated with his likelihood of discussing and undergoing PSA screening. As rationale, implementation of PSA screening requires shared decision-making, and the level of trust an individual has in his physician has important implications for dissemination of PSA screening guidelines.

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The Role of Shared Decision-Making in Audiologic Rehabilitation

Perspectives on Aural Rehabilitation and Its Instrumentation ◽

10.1044/arri21.1.15 ◽

2014 ◽

Vol 21 (1) ◽

pp. 15-23 ◽

Cited By ~ 6

Author(s):

Helen Pryce ◽

Amanda Hall

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Behavior Changes ◽

Shared Decision ◽

Patient Centered ◽

Treatment Information ◽

Centered Care ◽

Potential Risks ◽

Audiologic Rehabilitation

Shared decision-making (SDM), a component of patient-centered care, is the process in which the clinician and patient both participate in decision-making about treatment; information is shared between the parties and both agree with the decision. Shared decision-making is appropriate for health care conditions in which there is more than one evidence-based treatment or management option that have different benefits and risks. The patient's involvement ensures that the decisions regarding treatment are sensitive to the patient's values and preferences. Audiologic rehabilitation requires substantial behavior changes on the part of patients and includes benefits to their communication as well as compromises and potential risks. This article identifies the importance of shared decision-making in audiologic rehabilitation and the changes required to implement it effectively.

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