National Healthcare Quality and Disparities Report
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Topics
- Access to Care (1)
- Ambulatory Care and Surgery (1)
- Back Health and Pain (1)
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- Cancer (2)
- (-) Caregiving (22)
- Children/Adolescents (14)
- Chronic Conditions (1)
- Clinician-Patient Communication (8)
- Communication (7)
- Cultural Competence (1)
- Diagnostic Safety and Quality (1)
- Disabilities (1)
- Disparities (1)
- Education: Patient and Caregiver (3)
- Elderly (1)
- Emergency Department (1)
- Healthcare Utilization (1)
- Health Information Technology (HIT) (2)
- Health Services Research (HSR) (1)
- Heart Disease and Health (1)
- Intensive Care Unit (ICU) (1)
- Kidney Disease and Health (1)
- Low-Income (1)
- Medical Devices (1)
- Medication (1)
- Neonatal Intensive Care Unit (NICU) (1)
- Newborns/Infants (3)
- Palliative Care (2)
- Patient-Centered Healthcare (3)
- Patient-Centered Outcomes Research (1)
- Patient and Family Engagement (8)
- Patient Experience (3)
- Provider (3)
- Provider: Physician (3)
- Provider Performance (1)
- Public Reporting (1)
- Quality Indicators (QIs) (1)
- Quality of Care (2)
- Racial and Ethnic Minorities (4)
- Respiratory Conditions (1)
- Risk (1)
- (-) Shared Decision Making (22)
- Sickle Cell Disease (1)
- Sleep Problems (2)
- Surgery (5)
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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 22 of 22 Research Studies DisplayedLinks 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, Shared Decision Making, Clinician-Patient Communication, Communication, Provider: Physician, Provider
Leu GR, Links AR, Ryan MA
Assessment of parental choice predisposition for tonsillectomy in children.
The decision to proceed with tonsillectomy to treat pediatric obstructive sleep-disordered breathing (OSDB) often falls on individual families. Despite emphasis on shared decision-making between parents and surgeons about tonsillectomy for OSDB, the extent to which parents have already decided about surgery prior to the child's consultation is not known. The objective of this study was to identify predictors of parent choice predisposition for surgical treatment of OSDB with tonsillectomy and describe its association with parent-clinician communication.
AHRQ-funded; HS022932.
Citation: Leu GR, Links AR, Ryan MA .
Assessment of parental choice predisposition for tonsillectomy in children.
JAMA Otolaryngol Head Neck Surg 2021 Mar;147(3):263-70. doi: 10.1001/jamaoto.2020.5031..
Keywords: Children/Adolescents, Caregiving, Shared Decision Making, Surgery, Sleep Problems, Respiratory Conditions
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)
Greenzang KA, Al-Sayegh H, Ma C
Parental considerations regarding cure and late effects for children with cancer.
The purpose of this study was to learn how parents and physicians consider late-effects risks against a potential survival benefit when making treatment decisions. Parents of children with cancer and physicians at Dana-Farber/Boston Children's Cancer and Blood Disorders Center were surveyed. Investigators found that avoidance of severe neurocognitive impairment was the predominant driver of parent and physician treatment preferences, even over an increased chance of cure. They concluded that their study highlights the importance of exploring parental late-effects priorities when discussing treatment options.
AHRQ-funded; HS022986.
Citation: Greenzang KA, Al-Sayegh H, Ma C .
Parental considerations regarding cure and late effects for children with cancer.
Pediatrics 2020 May;145(5):e20193552. doi: 10.1542/peds.2019-3552..
Keywords: Children/Adolescents, Cancer, Shared Decision Making, Caregiving, Risk
Links AR, Callon W, Wasserman C
Parental role in decision-making for pediatric surgery: perceptions of involvement in consultations for tonsillectomy.
This study examined the parental role in decision-making for pediatric surgery, in particular perceptions of involvement in consultations for tonsillectomy. The investigators analyzed consults between 63 parents and 8 otolaryngologists. Over a third (37%) of clinicians and parent ratings showed inadequate agreement of preferred roles. Parents perceived greater involvement when clinicians discussed reasons to have or not have the surgery. There was less perception of parental involvement when clinicians used jargon, parents trusted clinicians, or experienced greater decisional conflict.
AHRQ-funded; HS022932.
Citation: Links AR, Callon W, Wasserman C .
Parental role in decision-making for pediatric surgery: perceptions of involvement in consultations for tonsillectomy.
Patient Educ Couns 2020 May;103(5):944-51. doi: 10.1016/j.pec.2019.12.012..
Keywords: Children/Adolescents, Shared Decision Making, Surgery, Caregiving
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
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, Shared Decision Making, Cultural Competence, Racial and Ethnic Minorities, Clinician-Patient Communication, Communication, Caregiving, Behavioral Health
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
Goff SL, Garb JL, Guhn-Knight H
Spatial analysis of factors influencing choice of paediatric practice for mothers from low-income and minority populations.
Publicly reported quality data theoretically enable parents to choose higher-performing paediatric practices. However, little is known about how parents decide where to seek paediatric care. In this study, the investigators explored the relationship between geographic factors, care quality and choice of practice to see if the decision-making process could be described in terms of a 'gravity model' of spatial data.
AHRQ-funded; HS021879.
Citation: Goff SL, Garb JL, Guhn-Knight H .
Spatial analysis of factors influencing choice of paediatric practice for mothers from low-income and minority populations.
J Paediatr Child Health 2019 Aug;55(8):948-55. doi: 10.1111/jpc.14322..
Keywords: Caregiving, Shared Decision Making, Low-Income, Quality of Care, Racial and Ethnic Minorities
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, Shared Decision Making, Education: Patient and Caregiver, Provider, Provider: Physician
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
Crosby LE, Walton A, Shook LM
Development of a hydroxyurea decision aid for parents of children with sickle cell anemia.
This study developed a decision aid for use of hydroxyurea for parents of children with sickle cell anemia. There are national evidence-based guidelines, but they do not offer strategies for implementation. A multicomponent decision aid was developed via a needs assessment, clinic observations and iterative feedback. The decision aid was considered useful by the 75 parents and 28 clinicians who participated in all phases of the study.
AHRQ-funded; HS021114.
Citation: Crosby LE, Walton A, Shook LM .
Development of a hydroxyurea decision aid for parents of children with sickle cell anemia.
J Pediatr Hematol Oncol 2019 Jan;41(1):56-63. doi: 10.1097/mph.0000000000001257..
Keywords: Caregiving, Children/Adolescents, Chronic Conditions, Shared Decision Making, Education: Patient and Caregiver, Medication, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Sickle Cell Disease
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, Shared 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, Shared Decision Making, Elderly, Health Information Technology (HIT), Patient-Centered Healthcare, Clinician-Patient Communication, Web-Based
Harris VC, Links AR, Walsh J
A systematic review of race/ethnicity and parental treatment decision-making.
Researchers examined patient race/ethnicity as it affects health care utilization, provider trust, and treatment choice in pediatric care. Pooled results from their systematic review showed (1) racial/ethnic minorities tended to prefer more aggressive end-of-life care; (2) familial tradition of neonatal circumcision influenced the decision to circumcise; and (3) non-Hispanic Whites were less likely to pursue human papillomavirus vaccination but more likely to complete the vaccine series if initiated. They recommended further investigation.
AHRQ-funded; HS022932.
Citation: Harris VC, Links AR, Walsh J .
A systematic review of race/ethnicity and parental treatment decision-making.
Clin Pediatr 2018 Oct;57(12):1453-64. doi: 10.1177/0009922818788307..
Keywords: Children/Adolescents, Shared Decision Making, Caregiving, Racial and Ethnic Minorities, Healthcare Utilization
Jolles MP, Lee PJ, Javier JR
Shared decision-making and parental experiences with health services to meet their child's special health care needs: racial and ethnic disparities.
This study investigated the relationship between shared decision-making (SDM) and parents’ frustrations in getting health needs met for their special needs child. Secondary analysis was done on data from the 2009-2010 National Survey of Children with Special Health Care Needs. More Whites than Blacks engaged in SDM, and when Blacks did engage they had a higher odds of negative experiences than Whites. Researchers weren’t sure what the cause was of that, but speculated it was due to increased awareness of service challenges.
AHRQ-funded; HS000032.
Citation: Jolles MP, Lee PJ, Javier JR .
Shared decision-making and parental experiences with health services to meet their child's special health care needs: racial and ethnic disparities.
Patient Educ Couns 2018 Oct;101(10):1753-60. doi: 10.1016/j.pec.2018.05.022..
Keywords: Access to Care, Caregiving, Children/Adolescents, Shared Decision Making, Disabilities, Disparities, Racial and Ethnic Minorities
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, Shared Decision Making, Diagnostic Safety and Quality, Patient Experience, Patient and Family Engagement
Jolles MP, Wells R
Does caregiver participation in decision making within child welfare agencies influence children's primary and mental health care service use?
This study uses a national sample of children involved with child welfare to compare their health service use between those children served through a participatory decision making (PDM) practice and those who did not experience it. It concluded that lower-risk families were more likely to be served through PDM which was positively associated with child use of primary health services.
AHRQ-funded; HS000032.
Citation: Jolles MP, Wells R .
Does caregiver participation in decision making within child welfare agencies influence children's primary and mental health care service use?
Child Care Health Dev 2017 Mar;43(2):192-201. doi: 10.1111/cch.12384.
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Keywords: Caregiving, Children/Adolescents, Shared Decision Making, Health Services Research (HSR), Patient and Family Engagement
Boss EF, Links AR, Saxton R
Parent experience of care and decision making for children who snore.
The researchers identified factors associated with parental experience and decision making in pediatric sleep-disordered breathing (SDB) and adenotonsillectomy (AT) surgery. They found that while clinical factors were influential for decision making, interpersonal factors helped parents feel comfortable and influenced their overall experience
AHRQ-funded; HS022932.
Citation: Boss EF, Links AR, Saxton R .
Parent experience of care and decision making for children who snore.
JAMA Otolaryngol Head Neck Surg 2017 Mar;143(3):218-25. doi: 10.1001/jamaoto.2016.2400.
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Keywords: Children/Adolescents, Sleep Problems, Caregiving, Patient Experience, Shared Decision Making, Clinician-Patient Communication
Blumenthal-Barby JS, Kostick KM, Delgado ED
Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: implications for informed consent and shared decision-making.
The authors investigated the decision-making process and informational and decisional needs of patients and their caregivers regarding left ventricular assist device (LVAD) placement. They found that participants easily and clearly identified their values: life extension; family; and mobility. Participants reported the need to meet other patients and caregivers before device placement and to have an involved caregiver to synthesize information. They further found that some participants demonstrated a lack of clarity regarding transplant probability.
AHRQ-funded; HS024849.
Citation: Blumenthal-Barby JS, Kostick KM, Delgado ED .
Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: implications for informed consent and shared decision-making.
J Heart Lung Transplant 2015 Sep;34(9):1182-9. doi: 10.1016/j.healun.2015.03.026.
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Keywords: Caregiving, Shared Decision Making, Heart Disease and Health, Medical Devices, Patient and Family Engagement
Smith B, McDuff J, Naierman N
What consumers want to know about quality when choosing a hospice provider.
This study drew on focus group and survey data collected in 5 metropolitan areas to learn more about hospice quality data. The researchers found that participants placed top priority on measures related to pain and symptom management. The National Quality Forum-approved measures resonate well with consumers, who also appear to be ready for access to data on the quality of hospice providers.
AHRQ-funded; HS021870.
Citation: Smith B, McDuff J, Naierman N .
What consumers want to know about quality when choosing a hospice provider.
Am J Hosp Palliat Care 2015 Jun;32(4):393-400. doi: 10.1177/1049909114524475.
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Keywords: Caregiving, Education: Patient and Caregiver, Shared Decision Making, Palliative Care, Provider Performance, Public Reporting, Quality of Care, Quality Indicators (QIs)