National Healthcare Quality and Disparities Report
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- Adverse Events (1)
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- (-) Patient and Family Engagement (69)
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- Primary Care: Models of Care (2)
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- Racial and Ethnic Minorities (2)
- (-) Shared Decision Making (69)
- Sickle Cell Disease (1)
- Social Stigma (1)
- Stroke (1)
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- Surgery (6)
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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 25 of 69 Research Studies DisplayedBuchanan CL, Morris MA, Matlock D
Parental experience and understanding of parent-provider discussions of treatment for infants with ureteropelvic junction obstruction.
The objective of this study was to understand what families perceive as necessary information to guide decisionmaking in the treatment of children with ureteropelvic junction obstruction (UPJO). The authors conducted semi-structured interviews with parents of children with UPJO. Their findings were organized into three major themes: barriers to meaningful participation in decisionmaking, logistical aspects, and psychosocial aspects. They concluded that these results highlighted the importance of caregivers needing clear and accurate information to engage in meaningful discussions related to surgical decisionmaking regarding UPJO treatment. They recommended patient education and enhanced psychosocial support for more meaningful parental engagement in the surgical decisionmaking process.
AHRQ-funded; HS024597.
Citation: Buchanan CL, Morris MA, Matlock D .
Parental experience and understanding of parent-provider discussions of treatment for infants with ureteropelvic junction obstruction.
PEC Innov 2023 Dec; 2:100142. doi: 10.1016/j.pecinn.2023.100142..
Keywords: Newborns/Infants, Patient Experience, Shared Decision Making, Patient and Family Engagement, Clinician-Patient Communication
Schumacher JR, Zahrieh D, Chow S
Increasing socioeconomically disadvantaged patients' engagement in breast cancer surgery decision-making through a shared decision-making intervention (A231701CD): protocol for a cluster randomised clinical trial.
This paper describes the protocol for a multisite randomized trial to test the impact of a newly developed decision aid to increase socioeconomically disadvantaged patients' engagement in breast cancer surgery decision-making. The study will be conducted through 10 surgical clinics within the National Cancer Institute Community Oncology Research Program (NCORP). A stepped-wedge design with clinics will be randomized to the time of transition from usual care to the decision aid arm. Study participants will be female, aged ≥18 years, with newly diagnosed stage 0-III breast cancer who are planning breast surgery. Data collection will include a baseline surgeon survey, baseline patient survey, audio-recording of the surgeon-patient consultation, a follow-up patient survey and medical record data review. A subset of patients, surgeons, and clinic stakeholders will participate in interviews and focus groups.
AHRQ-funded; HS025194.
Citation: Schumacher JR, Zahrieh D, Chow S .
Increasing socioeconomically disadvantaged patients' engagement in breast cancer surgery decision-making through a shared decision-making intervention (A231701CD): protocol for a cluster randomised clinical trial.
BMJ Open 2022 Nov 17;12(11):e063895. doi: 10.1136/bmjopen-2022-063895..
Keywords: Cancer: Breast Cancer, Cancer, Patient and Family Engagement, Shared Decision Making, Patient-Centered Healthcare, Surgery, Women
Miller-Rosales C, Lewis VA, Shortell SM
Adoption of patient engagement strategies by physician practices in the United States.
Researchers analyzed data collected from the National Survey of Healthcare Organizations and Systems (NSHOS) on physician practice adoption of patient engagement strategies. They found modest adoption of shared decision-making and motivational interviewing, and low adoption of shared medical appointments. They noted that risk-based payment reform has the potential to motivate greater practice-level patient engagement, but the extent to which it occurs may depend on internal practice capabilities.
AHRQ-funded; HS024075.
Citation: Miller-Rosales C, Lewis VA, Shortell SM .
Adoption of patient engagement strategies by physician practices in the United States.
Med Care 2022 Sep;60(9):691-99. doi: 10.1097/mlr.0000000000001748..
Keywords: Patient and Family Engagement, Provider: Physician, Shared Decision Making
Rosenberg SM, Gierisch JM, Revette AC
"Is it cancer or not?" A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ.
This study investigated the impact of a ductal carcinoma in situ (DCIS) diagnosis by engaging self-identified patients regarding their experience. Findings showed that, in a large, national sample, participants with a history of DCIS reported confusion and concern about the diagnosis and treatment, which caused worry and significant uncertainty.
AHRQ-funded; HS023680.
Citation: Rosenberg SM, Gierisch JM, Revette AC .
"Is it cancer or not?" A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ.
Cancer 2022 Apr 15;128(8):1676-83. doi: 10.1002/cncr.34126..
Keywords: Cancer: Breast Cancer, Cancer, Shared Decision Making, Women, Patient-Centered Healthcare, Clinician-Patient Communication, Patient and Family Engagement, Communication
De Roo AC, Vitous CA, Rivard SJ
High-risk surgery among older adults: not-quite shared decision-making.
This study explored surgeons’ approaches to decision-making for surgery among adults ≥65 years at high-risk of postoperative complications or death. The authors conducted semistructured in-depth interviews with 46 practicing surgeons across Michigan. They found that although shared decision-making is strongly recommended, surgeons who perform high-risk operations among older adults predominantly focused on assessing risk and setting expectations with patients and families rather than inviting them to actively participate in the decision-making process. Surgeons were also influenced by quality metrics, referrals, and personal experiences.
AHRQ-funded; HS026772; HS000053.
Citation: De Roo AC, Vitous CA, Rivard SJ .
High-risk surgery among older adults: not-quite shared decision-making.
Surgery 2021 Sep;170(3):756-63. doi: 10.1016/j.surg.2021.02.005..
Keywords: Elderly, Surgery, Shared Decision Making, Patient and Family Engagement
Aronson PL, Politi MC, Schaeffer P
Development of an app to facilitate communication and shared decision-making with parents of febrile infants ≤ 60 days old.
This study’s aim was to develop and test a tool to engage parents of febrile infants 60 days or less of age evaluated in the emergency department (ED). The tool was designed to improve communication between parents and healthcare providers and to support shared decision-making (SDM) about whether to perform a lumbar puncture (LP) for infants 29 to 60 days of age. The authors conducted a multi-phase development and testing process including individual, semi-structured interviews with parents and clinicians; design of a “storyboard” of the tool with design impression testing; development of a software application prototype called e-Care; and usability testing of e-Care using qualitative assessment and the System Usability Scale (SUS). The authors interviewed 27 parents and 23 clinicians. After the interviews, they developed separate versions of e-Care for infants aged 28 days or less and 29 to 60 days of age in both English and Spanish. e-Care is divided into 4 sections: 1) homepage; 2) why testing is done; 3) what tests are done; and 4) what happens after testing. The mean SUS score given by parents and clinicians was 90.3 representing “excellent” usability.
AHRQ-funded; HS026006.
Citation: Aronson PL, Politi MC, Schaeffer P .
Development of an app to facilitate communication and shared decision-making with parents of febrile infants ≤ 60 days old.
Acad Emerg Med 2021 Jan;28(1):46-59. doi: 10.1111/acem.14082..
Keywords: Clinician-Patient Communication, Communication, Newborns/Infants, Caregiving, Shared Decision Making, Patient and Family Engagement, Emergency Department, Health Information Technology (HIT)
Valentine KD, Mancini B, Vo H
Using standardized videos to examine the validity of the shared decision making process scale: results of a randomized online experiment.
The Shared Decision Making (SDM) Process scale is a brief, patient-reported measure of SDM with demonstrated validity in surgical decision-making studies. In this study, the investigators examined the validity of the scores in assessing SDM for cancer screening and medication decisions through standardized videos of good-quality and poor-quality SDM consultations. The investigators concluded that SDM process scores showed good evidence of validity in a hypothetical scenario but were lacking in ability to classify good-quality or poor-quality videos accurately.
AHRQ-funded; HSO25718.
Citation: Valentine KD, Mancini B, Vo H .
Using standardized videos to examine the validity of the shared decision making process scale: results of a randomized online experiment.
Med Decis Making 2022 Jan;42(1):105-13. doi: 10.1177/0272989x211029267..
Keywords: Shared Decision Making, Patient and Family Engagement
Ruhnke GW, Tak HJ, Meltzer DO
Association of preferences for participation in decision-making with care satisfaction among hospitalized patients.
The purpose of this study was to investigate the association of hospitalized patients' desire to delegate decisions to their physician with care dissatisfaction. The investigators indicated that the findings suggested that patient preferences to participate in medical decision-making were statistically significantly associated with dissatisfaction of hospitalized patients. The authors assert that clinicians should individualize their encouragement of patient participation in diagnostic and management decisions to maximize patient satisfaction.
AHRQ-funded; HS016967.
Citation: Ruhnke GW, Tak HJ, Meltzer DO .
Association of preferences for participation in decision-making with care satisfaction among hospitalized patients.
JAMA Netw Open 2020 Oct;3(10):e2018766. doi: 10.1001/jamanetworkopen.2020.18766..
Keywords: Shared Decision Making, Patient and Family Engagement, Patient Experience, Hospitalization, Hospitals
Hargraves IG, Fournier AK, Montori VM
AHRQ Author: Fournier AK, Montori VM, Bierman AS.
Generalized shared decision making approaches and patient problems. adapting AHRQ's SHARE Approach for Purposeful SDM.
This article focuses on the AHRQ development of SHARE, which is a generalized shared decision making (SDM) approach for clinicians and patients to make decisions together. The authors hope to adapt SHARE to the different problems that patients face using a matrix to relate SHARE steps and use the Purposeful SDM schema published in 2019. They hope that SDM in education, practice, and tools may be supported by adapting generalized SDM approaches in patients’ problems.
AHRQ-authored.
Citation: Hargraves IG, Fournier AK, Montori VM .
Generalized shared decision making approaches and patient problems. adapting AHRQ's SHARE Approach for Purposeful SDM.
Patient Educ Couns 2020 Oct;103(10):2192-99. doi: 10.1016/j.pec.2020.06.022..
Keywords: Shared Decision Making, Patient and Family Engagement
Greenhawt M
Shared decision-making in the care of a patient with food allergy.
The purpose of this study was to determine the value of shared decision-making in the care of patients with food allergy. Data was compiled via a narrative review of the shared decision-making and food allergy outcomes literature for the past 20 years. Findings showed that shared decision-making was an approach that could greatly enhance food allergy care and improve patient-reported outcomes.
AHRQ-funded; HS024599.
Citation: Greenhawt M .
Shared decision-making in the care of a patient with food allergy.
Ann Allergy Asthma Immunol 2020 Sep;125(3):262-67. doi: 10.1016/j.anai.2020.05.031..
Keywords: Shared Decision Making, Clinician-Patient Communication, Patient and Family Engagement
Abrams EM, Shaker M, Oppenheimer J
The challenges and opportunities for shared decision making highlighted by COVID-19.
This article discusses the challenges and opportunities for shared decision making (SDM) that have been emphasized more recently due to the COVID-19 pandemic. It has changed how clinicians deliver care due to the need for social distancing and health service reallocation. It is causing clinicians to reevaluate common practices and enhance effectiveness of their management strategies.
AHRQ-funded; HS024599.
Citation: Abrams EM, Shaker M, Oppenheimer J .
The challenges and opportunities for shared decision making highlighted by COVID-19.
J Allergy Clin Immunol Pract 2020 Sep;8(8):2474-80.e1. doi: 10.1016/j.jaip.2020.07.003.
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Keywords: Shared Decision Making, COVID-19, Healthcare Delivery, Patient and Family Engagement, Patient-Centered Healthcare
Poon BY, Shortell SM, Rodriguez HP
Patient activation as a pathway to shared decision-making for adults with diabetes or cardiovascular disease.
Shared decision-making (SDM) is widely recognized as a core strategy to improve patient-centered care. However, the implementation of SDM in routine care settings has been slow and its impact mixed. In this study, the investigators examined the temporal association of patient activation and patients' experience with the SDM process to assess the dominant directionality of this relationship.
AHRQ-funded; HS022241.
Citation: Poon BY, Shortell SM, Rodriguez HP .
Patient activation as a pathway to shared decision-making for adults with diabetes or cardiovascular disease.
J Gen Intern Med 2020 Mar;35(3):732-42. doi: 10.1007/s11606-019-05351-6.
Keywords: Shared Decision Making, Diabetes, Cardiovascular Conditions, Chronic Conditions, Patient-Centered Healthcare, Patient and Family Engagement
Neu M, Klawetter S, Greenfield JC
Mothers' experiences in the NICU before family-centered care and in NICUs where it is the standard of care.
Family-centered care (FCC) in neonatal intensive care units (NICUs) was initiated in 1992 to promote a respectful response to individual family needs and support parental participation in care and decision-making for their infants. Although benefits of FCC have been reported, changes in the maternal experience in the NICU are unknown. The purpose of this study was to compare mothers' experiences in NICUs where FCC is the standard of care and to compare these with the experiences of mothers 2 decades ago.
AHRQ-funded; HS026370.
Citation: Neu M, Klawetter S, Greenfield JC .
Mothers' experiences in the NICU before family-centered care and in NICUs where it is the standard of care.
Adv Neonatal Care 2020 Feb;20(1):68-79. doi: 10.1097/anc.0000000000000671.
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Keywords: Newborns/Infants, Patient-Centered Healthcare, Neonatal Intensive Care Unit (NICU), Intensive Care Unit (ICU), Caregiving, Shared Decision Making, Patient Experience, Patient and Family Engagement
Hurley VB, Rodriguez HP, Kearing S
The impact of decision aids on adults considering hip or knee surgery.
Investigators analyzed data for 2012-2015 about patients within the ten High Value Healthcare Collaborative member systems who were exposed to condition-specific decision aids in the context of consultations for hip and knee osteoarthritis, with the intention that the aids be used to support shared decision making. They found that, compared to matched patients not exposed to the decision aids, those exposed had two-and-a-half times the odds of undergoing hip replacement surgery and nearly twice the odds of undergoing knee replacement surgery within six months of the consultation. Their findings suggest that health care systems adopting decision aids developed for use in shared decisionmaking, and used in conjunction with hip and knee osteoarthritis consultations, should not expect reduced surgical utilization.
AHRQ-funded; HS024075.
Citation: Hurley VB, Rodriguez HP, Kearing S .
The impact of decision aids on adults considering hip or knee surgery.
Health Aff 2020 Jan;39(1):100-07. doi: 10.1377/hlthaff.2019.00100..
Keywords: Shared Decision Making, Surgery, Orthopedics, Patient and Family Engagement
Schoenfeld EM, Probst MA, Quigley
Does shared decision making actually occur in the emergency department? Looking at it from the patients' perspective.
In this study the investigators sought to assess the frequency, content, and quality of shared decision making (SDM) in the emergency department (ED), from patients' perspectives. The investigators found that fewer than half of ED patients surveyed reported they were involved in SDM. The most common decision for which SDM was used was around ED disposition (admission vs. discharge). When SDM was employed, patients generally rated the discussion highly.
AHRQ-funded; HS025701.
Citation: Schoenfeld EM, Probst MA, Quigley .
Does shared decision making actually occur in the emergency department? Looking at it from the patients' perspective.
Acad Emerg Med 2019 Dec;26(12):1369-78. doi: 10.1111/acem.13850..
Keywords: Shared Decision Making, Emergency Department, Clinician-Patient Communication, Patient and Family Engagement
Bi S, Gunter KE, Lopez FY
Improving shared decision making for Asian American Pacific Islander sexual and gender minorities.
This study examined the challenges Asian American Pacific Islander (AAPI) sexual and gender minorities (SGM) encounter with shared decision making (SDM) with their providers, especially concerning mental health. Focus groups were conducted in San Francisco and interviews were conducted in Chicago and San Francisco. The participants were surveyed about attitudes towards SGM disclosure and preferences about providers. Many participants felt that providers either ignored or overemphasized their identities. Some shared the stigma of SGM identities and effects on mental health in their own families.
AHRQ-funded; HS023050.
Citation: Bi S, Gunter KE, Lopez FY .
Improving shared decision making for Asian American Pacific Islander sexual and gender minorities.
Med Care 2019 Dec;57(12):937-44. doi: 10.1097/mlr.0000000000001212..
Keywords: Shared Decision Making, Racial and Ethnic Minorities, Vulnerable Populations, Patient and Family Engagement, Patient-Centered Healthcare, Behavioral Health, Social Stigma
Garrity B, Berry Crofton, C
Parent-to-parent advice on considering spinal fusion in children with neuromuscular scoliosis.
The purpose of this study was to convey advice from families whose children recently underwent spinal fusion to families whose children are under consideration for initial spinal fusion for neuromuscular scoliosis and to providers who counsel families on this decision. Results showed that parents of children who had recently undergone spinal fusion had strong perceptions about what information to convey to families considering surgery, which may improve communication between future parents and physicians. Further investigation is needed to assess how best to incorporate the wisdom and experiences of parent peers into shared decisionmaking and preparation for spinal fusion in children with neuromuscular scoliosis.
AHRQ-funded; HS024453.
Citation: Garrity B, Berry Crofton, C .
Parent-to-parent advice on considering spinal fusion in children with neuromuscular scoliosis.
J Pediatr 2019 Oct;213:149-54. doi: 10.1016/j.jpeds.2019.05.055..
Keywords: Shared Decision Making, Patient and Family Engagement, Caregiving, Children/Adolescents, Back Health and Pain, Surgery
Vemulakonda VM, Hamer MK, Kempe A
Surgical decision-making in infants with suspected UPJ obstruction: stakeholder perspectives.
Although there are significant demographic and clinical variations in treatment decisions for infants with high-grade hydronephrosis concerning for ureteropelvic junction obstruction (UPJO), there has been little research on the roles of parents and surgeons in the surgical decision-making (DM) process. The purpose of this study was to understand parents' and surgeons' perceived roles in the surgical DM process for infants with high-grade hydronephrosis.
AHRQ-funded; HS024597.
Citation: Vemulakonda VM, Hamer MK, Kempe A .
Surgical decision-making in infants with suspected UPJ obstruction: stakeholder perspectives.
J Pediatr Urol 2019 Oct;15(5):469.e1-69.e9. doi: 10.1016/j.jpurol.2019.05.027..
Keywords: Newborns/Infants, Shared Decision Making, Surgery, Kidney Disease and Health, Caregiving, Provider: Physician, Provider, Patient and Family Engagement
Gressler LE, Natafgi NM, DeForge BR
What motivates people with substance use disorders to pursue treatment? A patient-centered approach to understanding patient experiences and patient-provider interactions.
The purpose of this study was to identify and define potential positive and negative factors in patient experiences and patient-provider interactions that are associated with the pursuit and maintenance of treatment by those suffering from substance use disorders (SUD). The investigators conducted two focus groups with patients in treatment for SUD and four in-depth interviews with healthcare providers involved in the treatment of patients with SUD.
AHRQ-funded; HS022135.
Citation: Gressler LE, Natafgi NM, DeForge BR .
What motivates people with substance use disorders to pursue treatment? A patient-centered approach to understanding patient experiences and patient-provider interactions.
J Subst Use 2019;24(6):587-99. doi: 10.1080/14659891.2019.1620891..
Keywords: Clinician-Patient Communication, Shared Decision Making, Healthcare Utilization, Patient-Centered Healthcare, Patient Experience, Patient and Family Engagement, Substance Abuse
Johnston FM, Beckman M
Navigating difficult conversations.
In this paper, the authors discussed breaking bad news and navigating difficult conversations in surgical oncology practice. They note that mounting evidence supports a patient-centered communication approach and models of shared decisionmaking. Physician training in patient-centered cancer communication also continues to evolve.
AHRQ-funded; HS024736.
Citation: Johnston FM, Beckman M .
Navigating difficult conversations.
J Surg Oncol 2019 Jul;120(1):23-29. doi: 10.1002/jso.25472..
Keywords: Cancer, Clinician-Patient Communication, Communication, Shared Decision Making, Patient-Centered Healthcare, Patient and Family Engagement, Provider: Physician, Surgery
Schoenfeld EM, Mader S, Houghton C
The effect of shared decisionmaking on patients' likelihood of filing a complaint or lawsuit: a simulation study.
This study examined the effect of shared decisionmaking on the likelihood of a patient filing a complaint or lawsuit after an adverse event. A simulation experiment using clinical vignettes was conducted. The participants, adults from the US were recruited from an online crowd-sourcing platform. They were randomized to vignettes with 1-3 levels of shared decision making. A total of 804 participants were recruited. Those who were exposed to shared decisionmaking were 80% less like to report a plan to contact a lawyer than those not exposed. They also showed higher levels of physician trust, and less likely to fault their physicians for an adverse outcome.
AHRQ-funded; HS024311.
Citation: Schoenfeld EM, Mader S, Houghton C .
The effect of shared decisionmaking on patients' likelihood of filing a complaint or lawsuit: a simulation study.
Ann Emerg Med 2019 Jul;74(1):126-36. doi: 10.1016/j.annemergmed.2018.11.017..
Keywords: Adverse Events, Shared Decision Making, Medical Errors, Patient-Centered Healthcare, Patient and Family Engagement
Pavlo AJ, O'Connell M, Olsen S
Missing ingredients in shared decision-making?
This article discusses the practice of shared decision making (SDM) for clinicians when making decisions in health care. This widespread practice is considered the best approach for person-centered care, but for individuals diagnosed with serious mental illness there are still many barriers to effective collaboration. The authors suggest that more emphasis needs to be placed on the doctor-patient relationship itself conducting SDM.
AHRQ-funded; HS023000.
Citation: Pavlo AJ, O'Connell M, Olsen S .
Missing ingredients in shared decision-making?
Psychiatr Q 2019 Jun;90(2):333-38. doi: 10.1007/s11126-019-9624-9..
Keywords: Chronic Conditions, Clinician-Patient Communication, Communication, Shared Decision Making, Behavioral Health, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Patient and Family Engagement
Kruser JM, Benjamin BT, Gordon EJ
Patient and family engagement during treatment decisions in an ICU: a discourse analysis of the electronic health record.
This study looked at patient and family engagement during treatment decisions with patients in a medical ICU. A total of 52 patients were included who had been admitted to a hospital ICU during 2016. Half of them met a consensus definition of chronic critical illness, and the other half either died or had transitioned to hospice care in the ICU. Clinical electronic health records (EHRs) were used to document decision points. The phrase “goals of care” was frequently found in the HER and was used to indicate poor prognosis.
AHRQ-funded; HS000078.
Citation: Kruser JM, Benjamin BT, Gordon EJ .
Patient and family engagement during treatment decisions in an ICU: a discourse analysis of the electronic health record.
Crit Care Med 2019 Jun;47(6):784-91. doi: 10.1097/ccm.0000000000003711..
Keywords: Critical Care, Shared Decision Making, Electronic Health Records (EHRs), Health Information Technology (HIT), Intensive Care Unit (ICU), Patient and Family Engagement
Ashcraft LE, Asato M, Houtrow AJ
Parent empowerment in pediatric healthcare settings: a systematic review of observational studies.
The objective of this systematic review was to synthesize potential antecedents and consequences of parent empowerment in healthcare settings. The authors identified six themes within consequences of empowerment: increased parent involvement in daily care, improved symptom management, enhanced informational needs and tools, increased involvement in care decisions, increased advocacy for child, and engagement in empowering others. Six themes summarizing antecedents of empowerment also emerged: parent-provider relationships.
AHRQ-funded; HS022989.
Citation: Ashcraft LE, Asato M, Houtrow AJ .
Parent empowerment in pediatric healthcare settings: a systematic review of observational studies.
Patient 2019 Apr;12(2):199-212. doi: 10.1007/s40271-018-0336-2..
Keywords: Caregiving, Children/Adolescents, Clinician-Patient Communication, Shared Decision Making, Patient and Family Engagement
Fisher KA, Tan ASL, Matlock DD
Keeping the patient in the center: common challenges in the practice of shared decision making.
This study examines the practice of shared-decision making (SDM) to achieve patient-centered decisions. It was determined that not all circumstances make it possible for that to happen and there have to be some basic elements present. Those elements include the patients’ health literacy, their emotional state, their relationship with the clinician and the nature of the decision.
AHRQ-funded; HS024596.
Citation: Fisher KA, Tan ASL, Matlock DD .
Keeping the patient in the center: common challenges in the practice of shared decision making.
Patient Educ Couns 2018 Dec;101(12):2195-201. doi: 10.1016/j.pec.2018.08.007..
Keywords: Clinician-Patient Communication, Shared Decision Making, Health Literacy, Patient-Centered Healthcare, Patient and Family Engagement