National Healthcare Quality and Disparities Report
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Topics
- Adverse Events (2)
- Ambulatory Care and Surgery (1)
- Behavioral Health (1)
- Cancer (3)
- Cardiovascular Conditions (1)
- Care Coordination (2)
- (-) Caregiving (23)
- Children/Adolescents (14)
- Clinician-Patient Communication (16)
- (-) Communication (23)
- Cultural Competence (3)
- Decision Making (7)
- Diagnostic Safety and Quality (1)
- Education: Patient and Caregiver (3)
- Elderly (4)
- Electronic Health Records (EHRs) (3)
- Emergency Department (1)
- Health Information Technology (HIT) (7)
- Health Literacy (1)
- Health Promotion (1)
- Heart Disease and Health (1)
- Hospitalization (3)
- Hospitals (2)
- Infectious Diseases (1)
- Inpatient Care (2)
- Intensive Care Unit (ICU) (1)
- Medical Errors (1)
- Neurological Disorders (1)
- Newborns/Infants (1)
- Palliative Care (1)
- Patient-Centered Healthcare (1)
- Patient and Family Engagement (6)
- Patient Experience (1)
- Patient Safety (2)
- Policy (2)
- Prevention (1)
- Provider (2)
- Provider: Physician (2)
- Racial and Ethnic Minorities (2)
- Sexual Health (1)
- Social Media (1)
- Surgery (1)
- Telehealth (1)
- Vaccination (1)
- Web-Based (2)
- Young Adults (1)
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 23 of 23 Research Studies DisplayedEjem D, Steinhauser K, Dionne-Odom JN
Exploring culturally responsive religious and spirituality health care communications among African Americans with advanced heart failure, their family caregivers, and clinicians.
This study explored how religion and spirituality (R/S) impacts the ways that African Americans (AAs) cope with serious illness. In particular, this study looks at AAs with advanced heart failure and their family caregivers’ (FCGs) preferences about R/S in patient-clinician communication. Transcribed interviews were analyzed to identify emergent themes. AA patient participants (n = 15) were a mean age of 62, 40% female, and 87% had >high school diploma/GED. AA FCGs (n = 14) were a mean age of 58, 93% female, 93% had >high school diploma/GED, and 86% were unemployed. Most caregivers were patients’ spouses/partners. All participants were Protestants. Patients and FCGs perspectives differed in relation to inclusion of R/S in health care communication. Patients felt that R/S should not be discussed in clinical encounters and discussed only if patient initiated. FCGs felt that clinicians’ R/S communication is not a priority, but clinicians should openly acknowledge patients’ R/S beliefs and should engage in R/S conversations with patients.
AHRQ-funded; HS013852.
Citation: Ejem D, Steinhauser K, Dionne-Odom JN .
Exploring culturally responsive religious and spirituality health care communications among African Americans with advanced heart failure, their family caregivers, and clinicians.
J Palliat Med 2021 Dec;24(12):1798-806. doi: 10.1089/jpm.2021.0044..
Keywords: Racial and Ethnic Minorities, Communication, Heart Disease and Health, Cardiovascular Conditions, Caregiving
Links AR, Callon W, Wasserman C
Treatment recommendations to parents during pediatric tonsillectomy consultations: a mixed methods analysis of surgeon language.
A deeper understanding of the dialogue clinicians use to relay treatment recommendations is needed to fully understand their influence on patient decisions about surgery. In this study, the authors characterize how otolaryngologists provide treatment recommendations and suggest a classification framework. The investigators concluded that clinicians provide treatment recommendations in a variety of ways that may introduce more or less certainty and choice to parental treatment decisions.
AHRQ-funded; HS022932.
Citation: Links AR, Callon W, Wasserman C .
Treatment recommendations to parents during pediatric tonsillectomy consultations: a mixed methods analysis of surgeon language.
Patient Educ Couns 2021 Jun;104(6):1371-79. doi: 10.1016/j.pec.2020.11.015..
Keywords: Children/Adolescents, Surgery, Caregiving, Decision Making, Clinician-Patient Communication, Communication, Provider: Physician, Provider
Zellmer BM, Nacht CL, Coller RJ
BedsideNotes: sharing physicians' notes with parents during hospitalization.
Physicians increasingly share ambulatory visit notes with patients to meet new federal requirements, and evidence suggests patient experiences improve without overburdening physicians. Whether sharing inpatient notes with parents of hospitalized children yields similar outcomes is unknown. In this pilot study, the investigators evaluated parent and physician perceptions of sharing notes with parents during hospitalization. The investigators concluded that parents all valued having access to physicians' notes during their child's hospital stay; however, some physicians remained concerned about the potential negative consequences of sharing.
AHRQ-funded; HS027214.
Citation: Zellmer BM, Nacht CL, Coller RJ .
BedsideNotes: sharing physicians' notes with parents during hospitalization.
Hosp Pediatr 2021 May;11(5):503-08. doi: 10.1542/hpeds.2020-005447..
Keywords: Children/Adolescents, Clinician-Patient Communication, Communication, Caregiving, Hospitalization
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, Decision Making, Patient and Family Engagement, Emergency Department, Health Information Technology (HIT)
Hale KL, Wallace DD, Blanco-Duran D
Conversations between Latina mothers and their child's mental health provider: An observational study of shared decision-making regarding pediatric patient mental health needs.
The authors evaluated shared decision-making (SDM) and delineated SDM processes in audio-recorded conversations between language-congruent Spanish-/English-speaking clinicians and parents of pediatric mental health patients. They found that their present sample performed on par with other populations studied to date, and that it expanded the evaluation of observed SDM to include Latino patients and new clinician populations. The practical implications of their findings is that use of the Observer OPTION(5) instrument highlights that eliciting and integrating parent/patient preferences is a skill that requires attention when delivering culturally competent interventions.
AHRQ-funded; HS000032.
Citation: Hale KL, Wallace DD, Blanco-Duran D .
Conversations between Latina mothers and their child's mental health provider: An observational study of shared decision-making regarding pediatric patient mental health needs.
Patient Educ Couns 2020 Jan;103(1):96-102. doi: 10.1016/j.pec.2019.08.013..
Keywords: Children/Adolescents, Decision Making, Cultural Competence, Racial and Ethnic Minorities, Clinician-Patient Communication, Communication, Caregiving, Behavioral Health
Ancker JS, Sharko M, Hong M
Should parents see their teen's medical record? Asking about the effect on adolescent-doctor communication changes attitudes.
Parents routinely access young children's medical records, but medical societies strongly recommend confidential care during adolescence, and most medical centers restrict parental records access during the teen years. In this study, the investigators sought to assess public opinion about adolescent medical privacy. The investigators concluded that although medical societies recommend confidential care for adolescents, public opinion was largely in favor of parental access.
AHRQ-funded; HS021531.
Citation: Ancker JS, Sharko M, Hong M .
Should parents see their teen's medical record? Asking about the effect on adolescent-doctor communication changes attitudes.
J Am Med Inform Assoc 2018 Dec;25(12):1593-99. doi: 10.1093/jamia/ocy120..
Keywords: Caregiving, Children/Adolescents, Clinician-Patient Communication, Communication, Electronic Health Records (EHRs), Health Information Technology (HIT), Policy
Meyer AND, Giardina TD, Khanna A
Pediatric clinician perspectives on communicating diagnostic uncertainty.
This study examined how pediatric clinicians discussed diagnostic uncertainty with their patients’ parents. A sample study was conducted at two large academic medical institutions in Texas. Twenty pediatric clinicians participated. Some clinicians felt more comfortable expressing diagnostic uncertainty to parents who were more educated. The strength of the parent-clinician relationship also changed how clinicians communicated with parents.
AHRQ-funded; HS022087; HS023602
Citation: Meyer AND, Giardina TD, Khanna A .
Pediatric clinician perspectives on communicating diagnostic uncertainty.
Int J Qual Health Care 2019 Nov 30;31(9):G107-G12. doi: 10.1093/intqhc/mzz061..
Keywords: Children/Adolescents, Caregiving, Clinician-Patient Communication, Communication
Khan A, Yin HS, Brach C
AHRQ Author: Brach C
Association between parent comfort with English and adverse events among hospitalized children.
The purpose of this study was to examine the association between parents’ limited comfort with English (LCE) and adverse events in a cohort of hospitalized children. Participants included Arabic-, Chinese-, English-, and Spanish-speaking parents of patients 17 years and younger in the pediatric units of seven North American hospitals. Findings showed that hospitalized children of parents expressing LCE were twice as likely to experience harms due to medical care. Targeted strategies are needed to improve communication and safety for this vulnerable group of children.
AHRQ-authored; AHRQ-funded; HS022986.
Citation: Khan A, Yin HS, Brach C .
Association between parent comfort with English and adverse events among hospitalized children.
JAMA Pediatr 2020 Dec;174(12):e203215. doi: 10.1001/jamapediatrics.2020.3215..
Keywords: Children/Adolescents, Caregiving, Cultural Competence, Clinician-Patient Communication, Communication, Adverse Events, Patient Safety, Inpatient Care, Hospitalization
Choe AY, Unaka NI, Schondelmeyer AC
Inpatient communication barriers and drivers when caring for limited english proficiency children.
The authors identified barriers to and drivers of effective interpreter service use when caring for hospitalized limited English proficiency (LEP) children from the perspectives of pediatric medical providers and interpreters. Using Group Level Assessment, they found that participants identified unique barriers and drivers that impact communication with LEP patients and their families during hospitalization. They suggested that future directions include exploring the perspective of LEP families and utilizing team-based and family-centered communication strategies to standardize and improve communication practices.
AHRQ-funded; HS025138.
Citation: Choe AY, Unaka NI, Schondelmeyer AC .
Inpatient communication barriers and drivers when caring for limited english proficiency children.
J Hosp Med 2019 Oct;14(10):607-13. doi: 10.12788/jhm.3240..
Keywords: Clinician-Patient Communication, Communication, Cultural Competence, Children/Adolescents, Inpatient Care, Patient and Family Engagement, Caregiving
Links AR, Callon W, Wasserman C
Surgeon use of medical jargon with parents in the outpatient setting.
This study analyzed the use of unexplained medical jargon with parents whose children have sleep-disordered breathing and their consultations with otolaryngologists in a pediatric surgical setting. Participants (64 parents and 8 otolaryngologists) completed questionnaires that evaluated demographics, clinical features and parental role in decision-making. Unexplained medical jargon was commonly used by physicians (mean total utterances per visit = 28.9) while parents used jargon a mean of 4.3 times. Clinicians used more jargon when they felt that parents had greater involvement in decision-making or when parents used more jargon themselves. These results will be incorporated into communication training for clinicians.
AHRQ-funded; HS022932.
Citation: Links AR, Callon W, Wasserman C .
Surgeon use of medical jargon with parents in the outpatient setting.
Patient Educ Couns 2019 Jun;102(6):1111-18. doi: 10.1016/j.pec.2019.02.002..
Keywords: Ambulatory Care and Surgery, Caregiving, Children/Adolescents, Clinician-Patient Communication, Communication, Decision Making, Education: Patient and Caregiver, Provider, Provider: Physician
Asan O, Scanlan MC, Crotty B
Parental perceptions of displayed patient data in a PICU: an example of unintentional empowerment.
The objective of this study was to explore the perceptions of parents of pediatric patients in a PICU regarding real-time open electronic health record data displayed in patient rooms. The investigators suggest that a new health information technology system providing continuous access to open electronic health record data may be an effective way to empower and engage parents in the PICU, but also note potential drawbacks.
AHRQ-funded; HS023626.
Citation: Asan O, Scanlan MC, Crotty B .
Parental perceptions of displayed patient data in a PICU: an example of unintentional empowerment.
Pediatr Crit Care Med 2019 May;20(5):435-41. doi: 10.1097/pcc.0000000000001895..
Keywords: Caregiving, Children/Adolescents, Communication, Electronic Health Records (EHRs), Health Information Technology (HIT), Hospitals, Intensive Care Unit (ICU), Patient and Family Engagement
Armstrong MJ, Rastgardani T, Gagliardi AR
Barriers and facilitators of communication about off periods in Parkinson's disease: qualitative analysis of patient, carepartner, and physician Interviews.
This article discusses barriers and facilitators of communication with Parkinson’s disease patients, care partners, and their physicians specifically during off periods. Twenty persons with Parkinson’s and their care partners, and 20 physicians participated in interviews using a semi-structured questionnaire. Communication barrier levels were identified as patient-level, caregiver-level, and physician-level. For patients cognitive impairment and reluctance to discuss symptoms was the largest barrier. Caregiver absence was also a barrier. For physicians barriers were distraction by technology and lack of appreciation of off period burdens. Various tools such as home diaries, questionnaires and mobile phone videos can be used to aid communication regarding off periods. Patients and their caregivers stressed the need for more formal educational materials and improved educational tools.
AHRQ-funded; HS024159.
Citation: Armstrong MJ, Rastgardani T, Gagliardi AR .
Barriers and facilitators of communication about off periods in Parkinson's disease: qualitative analysis of patient, carepartner, and physician Interviews.
PLoS One 2019 Apr 18;14(4):e0215384. doi: 10.1371/journal.pone.0215384..
Keywords: Communication, Clinician-Patient Communication, Neurological Disorders, Caregiving, Education: Patient and Caregiver, Health Literacy, Patient and Family Engagement
Margolis MA, Brewer NT, Shah PD
Stories about HPV vaccine in social media, traditional media, and conversations.
To understand how stories from media and social interactions shape parents' HPV vaccination decisions, the authors sought to characterize parents' exposure to these stories, as well as associations between story exposure and vaccination behavior. They found that stories of HPV vaccine harms may be associated more strongly with vaccination behavior than stories of HPV vaccine preventable diseases. They recommended that communication campaigns consider strategies to elevate stories of preventable diseases in social and traditional media.
AHRQ-funded; HS000032.
Citation: Margolis MA, Brewer NT, Shah PD .
Stories about HPV vaccine in social media, traditional media, and conversations.
Prev Med 2019 Jan;118:251-56. doi: 10.1016/j.ypmed.2018.11.005..
Keywords: Caregiving, Children/Adolescents, Communication, Education: Patient and Caregiver, Health Promotion, Infectious Diseases, Prevention, Sexual Health, Social Media, Vaccination
Quintana Y, Fahy D, Crotty B
InfoSAGE: Supporting elders and families through online family networks.
With an increasingly elderly population, families are finding it increasingly challenging to coordinate care for their older family members. This paper reports on the findings of InfoSAGE, an online private social network that has tools for communication and care coordination for elders and their families.
AHRQ-funded; HS021495; HS024869.
Citation: Quintana Y, Fahy D, Crotty B .
InfoSAGE: Supporting elders and families through online family networks.
AMIA Annu Symp Proc 2018 Dec 5;2018:932-41..
Keywords: Elderly, Caregiving, Health Information Technology (HIT), Communication, Clinician-Patient Communication, Care Coordination
Greenzang KA, Cronin AM, Kang TI
Parental distress and desire for information regarding long-term implications of pediatric cancer treatment.
In this study, the authors evaluated parental distress associated with information regarding future limitations, and the extent to which distress is associated with information preferences. The investigators concluded that although information regarding future limitations caused by cancer treatment is upsetting to many parents, the majority of them desire this information, and those who are distressed are more likely to value this information.
AHRQ-funded; HS022986.
Citation: Greenzang KA, Cronin AM, Kang TI .
Parental distress and desire for information regarding long-term implications of pediatric cancer treatment.
Cancer 2018 Dec 1;124(23):4529-37. doi: 10.1002/cncr.31772..
Keywords: Cancer, Caregiving, Children/Adolescents, Communication, Children/Adolescents
Kim K, Heinze K, Xu J
Theories of health care decision making at the end of life: a meta-ethnography.
The aim of this meta-ethnography was to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decisionmaking among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS), and their caregivers or providers. A conceptual framework was developed using themes including context of decision making, communication and negotiation of decisionmaking, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes.
AHRQ-funded; HS022140.
Citation: Kim K, Heinze K, Xu J .
Theories of health care decision making at the end of life: a meta-ethnography.
West J Nurs Res 2018 Dec;40(12):1861-84. doi: 10.1177/0193945917723010..
Keywords: Caregiving, Communication, Decision Making, Palliative Care
Quintana Y, Crotty B, Fahy D
Information sharing across generations and environments (InfoSAGE): study design and methodology protocol.
This open prospective cohort study aimed to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting. It used a mixed methods approach, utilizing qualitative survey data along with website usage analytic data.
AHRQ-funded; HS021495.
Citation: Quintana Y, Crotty B, Fahy D .
Information sharing across generations and environments (InfoSAGE): study design and methodology protocol.
BMC Med Inform Decis Mak 2018 Nov 20;18(1):105. doi: 10.1186/s12911-018-0697-4.
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BMC Med Inform Decis Mak 2018 Nov 20;18(1):105. doi: 10.1186/s12911-018-0697-4.
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Keywords: Caregiving, Communication, Decision Making, Elderly, Health Information Technology (HIT), Patient-Centered Healthcare, Clinician-Patient Communication, Web-Based
Bardach NS, Burkhart Q, Richardson LP
Hospital-based quality measures for pediatric mental health care.
The objective of this study was to develop and test medical record-based measures used to assess quality of pediatric mental health care in the emergency department (ED) and inpatient settings. The investigators drafted an evidence-based set of pediatric mental health care quality measures for the ED and inpatient settings and used them to identify sex and race disparities and substantial hospital variation.
AHRQ-funded; HS020506.
Citation: Bardach NS, Burkhart Q, Richardson LP .
Hospital-based quality measures for pediatric mental health care.
Pediatrics 2018 Jun;141(6). doi: 10.1542/peds.2017-3554..
Keywords: Cancer, Caregiving, Children/Adolescents, Clinician-Patient Communication, Communication, Decision Making, Diagnostic Safety and Quality, Patient Experience, Patient and Family Engagement
Wisk LE, Gray SH, Gooding HC
I thought you said this was confidential?-Challenges to protecting privacy for teens and young adults.
In this opinion paper, the authors discuss challenges to protecting privacy for teens and young adults. They specifically examine the implications of the dependent coverage expansion provision of the Affordable Care Act.
AHRQ-funded; HS022986.
Citation: Wisk LE, Gray SH, Gooding HC .
I thought you said this was confidential?-Challenges to protecting privacy for teens and young adults.
JAMA Pediatr 2018 Mar;172(3):209-10. doi: 10.1001/jamapediatrics.2017.3927..
Keywords: Caregiving, Children/Adolescents, Clinician-Patient Communication, Communication, Policy, Young Adults
Gustafson DH, DuBenske LL, Atwood AK
Reducing symptom distress in patients with advanced cancer using an e-alert system for caregivers: Pooled analysis of two randomized clinical trials.
The aim of this paper was to assess the effects on cancer patient symptom distress of an eHealth system that alerts clinicians to significant changes in the patient's symptoms, as reported by a family caregiver. It found that when severe caregiver-reported symptoms were shared with clinicians, the symptoms were more likely to be subsequently reported as improved than when the symptoms were not shared with clinicians.
AHRQ-funded; HS019917.
Citation: Gustafson DH, DuBenske LL, Atwood AK .
Reducing symptom distress in patients with advanced cancer using an e-alert system for caregivers: Pooled analysis of two randomized clinical trials.
J Med Internet Res 2017 Nov 14;19(11):e354. doi: 10.2196/jmir.7466.
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Keywords: Cancer, Caregiving, Communication, Telehealth, Web-Based
Walker J, Crotty BH, O'Brien J
Addressing the challenges of aging: how elders and their care partners seek information.
Elders in retirement communities face many challenges concerning information and communication. The purpose of this study was to gain insights into how these elders and their families manage health information and communication. The study suggests that elders in senior living communities, and their families, piece together information primarily from word of mouth communication. It asserts that electronic social and collaborative technologies may make information gathering easier.
AHRQ-funded; HS021495.
Citation: Walker J, Crotty BH, O'Brien J .
Addressing the challenges of aging: how elders and their care partners seek information.
Gerontologist 2017 Oct 1;57(5):955-62. doi: 10.1093/geront/gnw060..
Keywords: Elderly, Caregiving, Communication, Care Coordination, Patient and Family Engagement, Health Information Technology (HIT)
Khan A, Furtak SL, Melvin P
Parent-provider miscommunications in hospitalized children.
The objectives of this study were to: (1) examine characteristics of parent-provider miscommunications about hospitalized children; (2) describe associations among parent-provider miscommunications, parent-reported errors, and hospital experience; and (3) compare parent and attending physician reports of parent-provider miscommunications. The investigators found that parent-provider miscommunications were associated with parent-reported errors and suboptimal hospital experience. Parents reported parent-provider miscommunications more often than attending physicians did.
AHRQ-funded; HS022986; HS000063.
Citation: Khan A, Furtak SL, Melvin P .
Parent-provider miscommunications in hospitalized children.
Hosp Pediatr 2017 Sep;7(9):505-15. doi: 10.1542/hpeds.2016-0190..
Keywords: Adverse Events, Caregiving, Children/Adolescents, Clinician-Patient Communication, Communication, Hospitalization, Hospitals, Medical Errors, Patient Safety
Crotty BH, Walker J, Dierks M
Information sharing preferences of older patients and their families.
This study identified how patients older than 75 years (hereinafter, elders) and family caregivers of such patients approach sharing of health information, with the hope of applying the results to collaborative patient portals. It found that information sharing and control are complex issues even under the most well-meaning circumstances. While elders may delegate control and share information with family, they want to retain granular control of their information.
AHRQ-funded; HS021495.
Citation: Crotty BH, Walker J, Dierks M .
Information sharing preferences of older patients and their families.
JAMA Intern Med 2015 Sep;175(9):1492-7. doi: 10.1001/jamainternmed.2015.2903..
Keywords: Caregiving, Clinician-Patient Communication, Communication, Elderly, Electronic Health Records (EHRs), Health Information Technology (HIT)