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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 275 Research Studies DisplayedSprackling CM, Kieren MQ, Nacht CL
Adolescent access to clinicians' notes: adolescent, parent, and clinician perspectives.
This study’s goal was to identify adolescent, parent, and clinician perspectives on the anticipated benefits and concerns of giving adolescents access to clinicians’ notes and strategies in response to a 2021 federal mandate. The authors conducted six focus groups with adolescents, parents, and clinicians at a children's hospital from May to October 2021. A semistructured facilitator guide captured patient perspectives of the benefits, concerns, and strategies. A total of 38 stakeholders (17 adolescents, 10 parents, and 11 clinicians) described four benefits, three concerns, and four implementation strategies regarding adolescent note-sharing. Potential benefits captured in the focus groups included adolescents using notes to remember and reinforce the visit, gaining knowledge about their health, strengthening the adolescent-clinician relationship, and increasing agency in health care decisions. Concerns the guide captured included notes leading to a breach in confidentiality, causing negative emotions, and becoming less useful for clinicians. Strategies to address these concerns included making note-sharing more secure, optimizing note layout and content, setting clear expectations, and having a portion of the note for clinician use only.
AHRQ-funded; HS027214; HS027894.
Citation: Sprackling CM, Kieren MQ, Nacht CL .
Adolescent access to clinicians' notes: adolescent, parent, and clinician perspectives.
J Adolesc Health 2024 Jan; 74(1):155-60. doi: 10.1016/j.jadohealth.2023.08.008..
Keywords: Children/Adolescents, Clinician-Patient Communication, Patient and Family Engagement
Buchanan 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, Decision Making, Patient and Family Engagement, Clinician-Patient Communication
Moffit R, McTigue K, Conroy MB
Aspects of program engagement in an online physical activity intervention and baseline predictors of engagement.
The authors described participant engagement in ActiveGOALS, a 3-month, self-directed online physical activity (PA) intervention and identified the baseline factors related to engagement. Participants were adult primary care patients aged 21-70 years. Program engagement was found to be high, but average time between completed lessons was longer than expected and participants only contacted their coach about 1 of every 3 weeks. Individual predictors related to health, health care, demographics, lifestyle, and quality of life were significantly related to engagement. The authors concluded that examining multiple aspects of engagement and a large number of potential predictors might be needed to determine facilitators and barriers for high engagement in multi-faceted online intervention programs.
AHRQ-funded; HS022989.
Citation: Moffit R, McTigue K, Conroy MB .
Aspects of program engagement in an online physical activity intervention and baseline predictors of engagement.
Am J Health Promot 2023 Nov; 37(8):1100-08. doi: 10.1177/08901171231194176..
Keywords: Patient and Family Engagement, Health Promotion, Health Information Technology (HIT)
Wagner L, Corona L, Khan N
Development of an app for tracking family engagement with early intervention services: focus groups and pilot evaluation study.
This paper describes the results of a two-part study to develop a mobile health app to help young families navigate the early intervention (EI) system for their young children, focusing on underserved communities. In Study 1, the authors conducted focus groups to access a broad range of perspectives on the process of navigating the EI system, with the dual goals of identifying ways in which a patient-facing app might facilitate this process and identifying barriers to use with traditionally underrepresented and underserved groups. In Study 2, the focus group input informed the development of a patient-facing app, which was subsequently tested with a pilot sample of 5 families. Study 1 included 29 participants from 4 shareholder groups, who provided information about barriers families experience as they navigate the EI system, and their ideal features of a patient-facing app designed to track family engagement with the EI system, and potential barriers. In Study 2, 5 families used the Family on Track pilot app, and then provided information on app functionality and usability. App features included were survey customization, timing and delivery of prompts, and questions related to barriers and service satisfaction. Implementation supports that were included were a visual guide for app installation, resources related to common family questions, and availability of study personnel to guide families through installation and provide ongoing support.
AHRQ-funded; HS026395.
Citation: Wagner L, Corona L, Khan N .
Development of an app for tracking family engagement with early intervention services: focus groups and pilot evaluation study.
JMIR Hum Factors 2023 Sep 12; 10:e45957. doi: 10.2196/45957..
Keywords: Patient and Family Engagement, Health Information Technology (HIT), Children/Adolescents
Chen KY, Lang Y, Zhou Y
Assessing interventions on crowdsourcing platforms to nudge patients for engagement behaviors in primary care settings: randomized controlled trial.
This study’s goals were to (1) to assess the feasibility of using crowdsourced surveys to evaluate behavioral economics interventions for patient partnerships by examining whether web-based participants responded to simulated incentives in the same way they would have responded to actual incentives, and (2) to assess the impact of 2 behavioral economics-based intervention designs, psychological rewards and loss of framing, on simulated medication reconciliation behaviors in a simulated primary care setting. The authors conducted a randomized controlled trial using a between-subject design on a crowdsourcing platform (Amazon Mechanical Turk) to evaluate the effectiveness of behavioral interventions designed to improve medication adherence in primary care visits. The study group included a control baseline group and 3 groups with simulated interventions, namely monetary compensation, a status effect as a psychological reward, and a loss frame as a modification of the status effect. A total of 569 study participants were recruited, with 132 in the baseline group, 187 in the monetary compensation group, 149 in the psychological reward group, and 101 in the loss frame group. The monetary compensation intervention caused an increase of 17.51% participation, psychological rewards on status increased willingness by 11.85%, and a loss frame on psychological rewards increased willingness by 24.35%.
AHRQ-funded; HS027277.
Citation: Chen KY, Lang Y, Zhou Y .
Assessing interventions on crowdsourcing platforms to nudge patients for engagement behaviors in primary care settings: randomized controlled trial.
J Med Internet Res 2023 Jul 13; 25:e41431. doi: 10.2196/41431..
Keywords: Primary Care, Patient and Family Engagement
Quinn M, Fowler KE, Harrod M
Exploring sacred moments in hospitalized patients: an exploratory qualitative study.
This explorative qualitative study discusses the phenomena known as “sacred moments”, defined as brief periods of time in which people experience a deep interconnectedness that may possess spiritual qualities and emotions in acute care hospital settings. This study included in-depth interviews with patients and healthcare workers at two academic medical centers in the Midwestern United States. Semi-structured telephone interviews were conducted between August 2020 and April 2021 with 30 hospital healthcare workers and discharged patients with a recent hospital stay. Interviews were recorded and transcribed. Findings were organized into three main domains including (1) several common elements described by participants as marking these moments; (2) benefits experienced by both patients and healthcare workers; and (3) suggestions for fostering sacred moments within the hospital setting.
AHRQ-funded; HS028963.
Citation: Quinn M, Fowler KE, Harrod M .
Exploring sacred moments in hospitalized patients: an exploratory qualitative study.
J Gen Intern Med 2023 Jul; 38(9):2038-44. doi: 10.1007/s11606-022-07999-z..
Keywords: Patient and Family Engagement, Provider: Physician, Provider: Health Personnel
Miller-Rosales C, Brewster AL, Shortell SM
Multilevel influences on patient engagement and chronic care management.
This study used data collected from the National Survey of Healthcare Organizations and Systems to examine health system- and physician practice-level capabilities associated with adoption of (1) patient engagement strategies and (2) chronic care management processes for adult patients with diabetes and/or cardiovascular disease. A total of 796 physician practices and 247 health systems were analyzed from 2017 to 2018. Health systems with processes to assess clinical evidence and with more advanced health information technology (HIT) functionality adopted more practice-level chronic care management processes, but not patient engagement strategies, compared with systems lacking these capabilities. More patient engagement strategies and chronic care management processes were adopted by physician practices with cultures oriented to innovation, more advanced HIT functionality, and with a process to assess clinical evidence than those without those characteristics.
AHRQ-funded; HS024075.
Citation: Miller-Rosales C, Brewster AL, Shortell SM .
Multilevel influences on patient engagement and chronic care management.
Am J Manag Care 2023 Apr; 29(4):196-202. doi: 10.37765/ajmc.2023.89348..
Keywords: Patient and Family Engagement, Chronic Conditions, Patient-Centered Healthcare
Bell SK, Dong ZJ, Desroches CM
Partnering with patients and families living with chronic conditions to coproduce diagnostic safety through OurDX: a previsit online engagement tool.
Involving patients and their families in the diagnostic process is crucial, but there is a lack of methods for consistent engagement. The implementation of policies providing patients with access to electronic health records offers new possibilities. The researchers evaluated a novel online tool ("OurDX"), co-created with patients and families, to examine the nature and frequency of potential safety issues identified by patients and their families with chronic health conditions and whether these insights were incorporated into visit notes. At two US healthcare facilities, patients and their families were encouraged to participate via an online pre-visit questionnaire, which covered: (1) visit priorities, (2) recent medical history and symptoms, and (3) potential diagnostic concerns. Two physicians assessed patient-reported diagnostic issues to validate and classify diagnostic safety opportunities (DSOs). The researchers performed a chart review to determine if patient inputs were integrated into the visit note. Descriptive statistics were employed to report implementation outcomes, DSO verification, and chart review findings. The study found that OurDX reports were completed in 7075 of 18,129 (39%) eligible pediatric subspecialty visits (site 1) and 460 of 706 (65%) eligible adult primary care visits (site 2). Of the patients expressing diagnostic concerns, 63% were confirmed as probable DSOs. Overall, 7.5% of pediatric and adult patients and their families with chronic health conditions identified probable DSOs. The most frequent DSO types included patients and families feeling unheard; issues or delays in tests or referrals; and complications or delays in clarification or subsequent steps. The chart review revealed that most clinician notes incorporated all or some of the patient or family priorities and patient-reported histories.
AHRQ-funded; HS027367
Citation: Bell SK, Dong ZJ, Desroches CM .
Partnering with patients and families living with chronic conditions to coproduce diagnostic safety through OurDX: a previsit online engagement tool.
J Am Med Inform Assoc 2023 Mar 16;30(4):692-702. doi: 10.1093/jamia/ocad003.
Keywords: Chronic Conditions, Diagnostic Safety and Quality, Health Information Technology (HIT), Patient and Family Engagement, Healthcare Delivery
Short VL, Gannon M, Sood E
Opportunities to increase well-child care engagement for families affected by maternal opioid use disorder: perceptions of mothers and clinicians.
The objectives of this qualitative study were to gather in-depth information regarding maternal and clinician-reported factors that facilitate or hinder well-child care (WCC) engagement as well as information from mothers' experiences during WCC visits. Thirty mothers in treatment for parental opioid use disorder (OUD) and 13 clinicians working at a pediatric primary care clinic participated by completing one telephone session which involved a brief questionnaire followed by a semi-structured interview. Facilitators identified by mothers and clinicians, included continuity of care, addressing material needs, and clinician OUD training and knowledge. Barriers to WCC included: stigma toward mothers with OUD, gaps in basic parenting knowledge, competing specialized health care needs, and insufficient time to address concerns.
AHRQ-funded; HS027399.
Citation: Short VL, Gannon M, Sood E .
Opportunities to increase well-child care engagement for families affected by maternal opioid use disorder: perceptions of mothers and clinicians.
Acad Pediatr 2023 Mar;23(2):425-33. doi: 10.1016/j.acap.2022.07.013.
Keywords: Children/Adolescents, Family Health and History, Opioids, Substance Abuse, Behavioral Health, Caregiving, Patient and Family Engagement
Darling KE, Warnick J, Guthrie KM
Weight management engagement for teens from low-income backgrounds: qualitative perspectives from adolescents and caregivers.
Adolescents from low-income backgrounds are at a higher risk for obesity and obesity-related negative health outcomes. In addition, these adolescents have lower access to, and success in, weight management (WM) programs. The purpose of this qualitative study was to explore engagement in a hospital-based WM program from the adolescent and caregiver perspective at varying levels of program initiation and engagement. The researchers conducted qualitative interviews with 55 participants, including 29 adolescents and 26 caregivers. This included: a) those who were referred to WM treatment, but never initiated (non-initiators); b) those who dropped out from treatment; and c) those who that had continuous participation in treatment (engaged). The study found that participants across all groups reported that they did not have a complete understanding of the scope or goals of the WM program after initial referral. In addition, many participants identified misperceptions of the program (e.g., perceptions of a screening visit as compared to an intensive program). Both caregivers and adolescents identified caregivers as drivers of engagement, with adolescents often tentative about participation in the program. However, engaged adolescents found the program valuable and sought ongoing participation following caregiver initiation.
AHRQ-funded; HS02707.
Citation: Darling KE, Warnick J, Guthrie KM .
Weight management engagement for teens from low-income backgrounds: qualitative perspectives from adolescents and caregivers.
J Pediatr Psychol 2023 Feb 15; 48(7):593-601. doi: 10.1093/jpepsy/jsad008..
Keywords: Children/Adolescents, Obesity: Weight Management, Obesity, Low-Income, Patient and Family Engagement
Theiss LM, Wood L, Shao C
Disparities in perioperative use of patient engagement technologies - not all use is equal.
The objective of this retrospective cohort study was to determine the association of patient-level characteristics and the use of a patient engagement technology during the perioperative period. Patients who had undergone elective colorectal surgery were enrolled in a patient engagement technology at a single institution and received educational content, healthcare reminders, patient reported outcome surveys, and health checks. Findings indicated that use of a patient engagement technology in the perioperative period differs significantly by sex, race/ethnicity, and insurance status. The authors concluded that this diverse usage should be considered during implementation of interventions to improve surgical outcomes.
AHRQ-funded; HS023009.
Citation: Theiss LM, Wood L, Shao C .
Disparities in perioperative use of patient engagement technologies - not all use is equal.
Ann Surg 2023 Jan;277(1):e218-e25. doi: 10.1097/sla.0000000000004970.
Keywords: Patient and Family Engagement, Disparities, Surgery, Hospital Discharge
Hinesley JLG, Brooks EM, O'Loughlin K
Feasibility of patient navigation for care planning in primary care.
The purpose of this study was to help better control chronic conditions by connecting patients with a navigator for support creating a personal care goal. Twenty-four clinicians in 12 practices in the Virginia Ambulatory Care Outcomes Research Network (ACORN) participated in a care planning intervention under a structured process that guided 87 patients with uncontrolled chronic conditions, trained navigators, and adapted the navigation process to meet the needs of each practice. Findings indicated that patient navigation to address care plans should be feasible, with a minimal time commitment and non-intensive training. However, given the burden and competing demands in primary care, this help cannot be offered without additional resources.
AHRQ-funded; HS026223.
Citation: Hinesley JLG, Brooks EM, O'Loughlin K .
Feasibility of patient navigation for care planning in primary care.
J Prim Care Community Health 2022 Jan-Dec;13:21501319221134754. doi: 10.1177/21501319221134754..
Keywords: Primary Care, Chronic Conditions, Patient and Family Engagement
Schuttner L, Hockett Sherlock S, Simons CE
My goals are not their goals: barriers and facilitators to delivery of patient-centered care for patients with multimorbidity.
This study’s goal was to clarify facilitators and barriers perceived by primary care physicians in the Veterans Health Administration to delivering patient-centered care for high-risk or complex patients with multimorbidity. The authors conducted semi-structured telephone interviews from April to July 2020 with 23 physicians across 20 clinical sites, with most being female (61%). Facilitators included: effective physician-patient communication to individualize care, prioritize among multiple needs, and elicit goals to improve patient engagement; access to care, enabled by interdisciplinary teams, and dictating personalized care planning; effortful but worthwhile care coordination and continuity; meeting complex needs through effective teamwork; and integrating medical and non-medical care aspects in recognition of patients' psychosocial contexts. Barriers included: intra- and interpersonal (e.g., perceived patient reluctance to engage in care); organizational (e.g., limited encounter time); and community or policy impediments (e.g., state decisional capacity laws) to patient-centered care.
AHRQ-funded; HS026369.
Citation: Schuttner L, Hockett Sherlock S, Simons CE .
My goals are not their goals: barriers and facilitators to delivery of patient-centered care for patients with multimorbidity.
J Gen Intern Med 2022 Dec;37(16):4189-96. doi: 10.1007/s11606-022-07533-1..
Keywords: Patient-Centered Healthcare, Healthcare Delivery, Chronic Conditions, Clinician-Patient Communication, Communication, Patient and Family Engagement
Whittington KJ, Ma Y, Butler AM
The impact of infectious diseases consultation for children with Staphylococcus aureus bacteremia.
The purpose of this cohort study was to explore the impact of infectious diseases (ID) consultation for Staphylococcus aureus bacteremia in children. The researchers conducted a study of 306 children at St. Louis Children's Hospital between 2011 to 2018 with S. aureus bacteremia. Adherence to six established quality-of-care indicators (QCIs) was evaluated. The study found that 63% of the study patients received ID consultation, which was associated with greater adherence to all QCIs, including proof-of-cure blood cultures, indicated laboratory studies, echocardiography, source control, targeted antibiotic therapy, and antibiotic duration. In addition, improved outcomes were related with acquiring proof-of-cure blood cultures and all indicated laboratory studies. The researchers concluded that ID consultation improved adherence to QCIs, some of which were associated with improved clinical outcomes, for children with S. aureus bacteremia.
AHRQ-funded; HS024269.
Citation: Whittington KJ, Ma Y, Butler AM .
The impact of infectious diseases consultation for children with Staphylococcus aureus bacteremia.
Pediatr Res 2022 Dec;92(6):1598-605. doi: 10.1038/s41390-022-02251-0..
Keywords: Children/Adolescents, Infectious Diseases, Patient and Family Engagement
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, Decision Making, Patient-Centered Healthcare, Surgery, Women
Valdez RS, Lyon SE, Wellbeloved-Stone C
Engaging the disability community in informatics research: rationales and practical steps.
There is an opportunity for the informatics community to expand its impact by focusing on the disability community as a health disparity population. Digital health technologies can be enhanced by approaching disability from a more holistic framework, simultaneously accounting for multiple forms of disability and the ways that disability intersects with other forms of identity. The authors offer a set of guidelines for effective engagement and argue that such engagement is critical to creating digital health technologies which more fully meet the needs of all disabled individuals.
AHRQ-funded; HS023849.
Citation: Valdez RS, Lyon SE, Wellbeloved-Stone C .
Engaging the disability community in informatics research: rationales and practical steps.
J Am Med Inform Assoc 2022 Oct 7;29(11):1989-95. doi: 10.1093/jamia/ocac136..
Keywords: Patient and Family Engagement, Disabilities, Health Information Technology (HIT)
Steeves-Reece AL, Nicolaidis C, Richardson DM
"It made me feel like things are starting to change in society:" a qualitative study to foster positive patient experiences during phone-based social needs interventions.
Investigators conducted a pragmatic qualitative study with patients who had participated in a health-related social needs (HRSN) intervention. They found that patients were likely to have initial skepticism or reservations about the intervention; they identified 4 positive intervention components regarding patient experience; and they found that patients could be left with feelings of appreciation or hope, regardless of whether they connected with HRSN resources.
AHRQ-funded; HS027707.
Citation: Steeves-Reece AL, Nicolaidis C, Richardson DM .
"It made me feel like things are starting to change in society:" a qualitative study to foster positive patient experiences during phone-based social needs interventions.
Int J Environ Res Public Health 2022 Oct 3;19(19). doi: 10.3390/ijerph191912668..
Keywords: Patient Experience, Patient and Family Engagement, Patient-Centered Healthcare, Telehealth, Health Information Technology (HIT)
Harrison JD, Sudore RL, Auerbach AD
Automated telephone follow-up programs after hospital discharge: do older adults engage with these programs?
The purpose of this study was to examine whether and how older adults experience automated post-hospital discharge telephone follow-up programs and characterize the prevalence of patient-reported post-discharge issues. Eighteen thousand and seventy-six patients, all part of a post-hospital discharge program between May 1, 2018 and April 30, 2019, were included and categorized into age groups. The study found that more patients 65-84 years old were reached compared to patients 64 years old or less (84.3% compared to 78.9%). Patients aged 85 or older were more likely to have questions about their follow-up plans and require assistance scheduling appointments compared to those 64 years old or less (19.0% vs. 11.9%). The researchers concluded that post-hospital automated telephone calls are effective at reaching older adults.
AHRQ-funded; HS026383.
Citation: Harrison JD, Sudore RL, Auerbach AD .
Automated telephone follow-up programs after hospital discharge: do older adults engage with these programs?
J Am Geriatr Soc 2022 Oct;70(10):2980-87. doi: 10.1111/jgs.17939..
Keywords: Elderly, Patient and Family Engagement, Hospital Discharge, Transitions of Care, Telehealth, Health Information Technology (HIT)
Lobach DF, Boxwala A, Kashyap N
AHRQ Author: Lomotan EA, Harrison MI, Dymek C, Swiger J
Integrating a patient engagement app into an electronic health record-enabled workflow using interoperability standards.
The authors sought to use interoperability standards to integrate the COVID-19 Tracker, a patient mobile application, with an EHR. Their clinical decision support integration project benefited from a standards-based approach, but they encountered challenges due to issues concerning implementation and experience of the standards-based application programming interface, Health Level 7 Fast Healthcare Interoperability Resources (FHIR) in the EHR. The authors concluded that FHIR standards may provide a promising mechanism for overcoming barriers in the integration of patient engagement apps with EHRs, but that expansion of available FHIR resources will improve workflow integration.
AHRQ-authored; AHRQ-funded; 233201500023I.
Citation: Lobach DF, Boxwala A, Kashyap N .
Integrating a patient engagement app into an electronic health record-enabled workflow using interoperability standards.
Appl Clin Inform 2022 Oct;13(5):1163-71. doi: 10.1055/s-0042-1758736..
Keywords: Electronic Health Records (EHRs), Health Information Technology (HIT), Patient and Family Engagement, Workflow, COVID-19
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, Decision Making
Beeber AS, Hoben M, Leeman J
Developing a toolkit to improve resident and family engagement in the safety of assisted living: Engage-A stakeholder-engaged research protocol.
This paper describes an AHRQ-funded study protocol (Engage) to develop a toolkit for increasing resident and family engagement in assisted living (AL) safety. The study goals are to engage AL residents and family caregivers, AL staff, and other AL stakeholders to (1) identify common AL safety problems; (2) prioritize safety problems and identify and evaluate existing PFE interventions with the potential to address safety problems in the AL setting; and (3) develop a testable toolkit to improve PFE in AL safety. Methods, including qualitative interviews, a scoping review of persona and family engagement (PFE) interventions, and stakeholder panel meetings are discussed. The authors also detail how the protocol was modified to address the unique challenges of the COVID-19 pandemic.
AHRQ-funded; HS026473.
Citation: Beeber AS, Hoben M, Leeman J .
Developing a toolkit to improve resident and family engagement in the safety of assisted living: Engage-A stakeholder-engaged research protocol.
Res Nurs Health 2022 Aug;45(4):413-23. doi: 10.1002/nur.22232..
Keywords: Patient and Family Engagement, Patient Safety, Caregiving, Public Health, Long-Term Care
Womack DM, Kennedy R, Chamberlin SR
Patients' lived experiences and recommendations for enhanced awareness and use of integrative oncology services in cancer care.
The purpose of this study was to involve patients in understanding improved clinic processes and digital health tools to support patient awareness and use of integrative oncology services. The patients were engaged in participatory design to explore their lived experiences as related to the utilization of integrative oncology services during and after conventional cancer treatment. The researchers held 10 design sessions with individual participants, which began with patient story telling regarding their path to and use of integrative oncology services. Feedback was then requested on the functionality of prototypes of mobile app screens intended to support patient symptom alleviation. The study found that oncology patients are active participants in the management of their symptoms and treatment side effects. Patients who used massage, yoga, and acupuncture reported a need for earlier patient education about those services. The study concluded that clinics can collaborate with patients to identify high priority needs, unmet needs and challenges, guide development of clinic process, and co-produce wellbeing in conventional cancer care.
AHRQ-funded; HS000046.
Citation: Womack DM, Kennedy R, Chamberlin SR .
Patients' lived experiences and recommendations for enhanced awareness and use of integrative oncology services in cancer care.
Patient Educ Couns 2022 Jul;105(7):2557-61. doi: 10.1016/j.pec.2021.11.018..
Keywords: Cancer, Patient Experience, Patient and Family Engagement, Education: Patient and Caregiver
Bardach NS, Stotts JR, Fiore DM
Family Input for Quality and Safety (FIQS): using mobile technology for in-hospital reporting from families and patients.
This study’s goal was to test a real-time mobile-responsive website called Family Input for Quality and Safety (FIQS) for inpatient reporting from families and patients. The tool was piloted from June 2017 to April 2018 on the medical-surgical unit of a children’s hospital. The authors enrolled 253 patients aged 13 and older and patient family members. This resulted in 8.15 safety reports/100 patient-days, most frequently regarding medications (29% of reports) and communication (20% of reports). Fifty-one reports met incident reporting (IR) criteria with only 1 having been reported via the IR system. White participants submitted more observations than Latinx participants.
AHRQ-funded; HS028477; HS024553.
Citation: Bardach NS, Stotts JR, Fiore DM .
Family Input for Quality and Safety (FIQS): using mobile technology for in-hospital reporting from families and patients.
J Hosp Med 2022 Jun;17(6):456-65. doi: 10.1002/jhm.2777..
Keywords: Quality of Care, Patient Safety, Health Information Technology (HIT), Patient and Family Engagement
Adolphe S, Fernandez-Pastrana I, Scott H
EASE-ing the way for pediatric providers and parents: the Engagement and Access to Special Education (EASE) Clinic.
Primary Care Providers (PCPs) are tasked by the American Academy of Pediatrics to identify children who need special education and ensure that those children receive appropriate related services provided by the Individuals with Disabilities Education Act (IDEA). The IDEA entitles children between the ages of 3 and 21 to free education through individualized education programs (IEPs), and other related supports. The extent of PCP knowledge about the IDEA, special education, and available related support services and how to assess them, is largely unknown. Existing research indicates there is a lack of knowledge, training, and confidence in providers about special education. Boston Medical Center’s (BMC) Engagement and Access to Special Education (EASE) clinic was developed to provide support to the parents and PCPs of children with special education needs. The purpose of this article was to introduce and describe the EASE clinical model as a useful method for PCPs to strengthen their ability to provide appropriate and available comprehensive care to their patients requiring special education. The authors reported that of the 14,000 pediatric patients at the Boston Medical Center, 308 children were referred to the EASE clinic between its inception in 2017 and May 2021. The majority of children were Black non-Hispanic, English-speaking, and male, with an average age of 8.3 at first clinic. During that same time 452 total visits were completed, with a waiting list of less than 90 days. The authors conclude that for primary care practices with patients with special education needs, the BMC EASE clinic can serve as a useful model for improving their ability to provide care.
AHRQ-funded; HS022242.
Citation: Adolphe S, Fernandez-Pastrana I, Scott H .
EASE-ing the way for pediatric providers and parents: the Engagement and Access to Special Education (EASE) Clinic.
Acad Pediatr 2022 May-Jun;24(4):705-07. doi: 10.1016/j.acap.2022.02.011..
Keywords: Children/Adolescents, Caregiving, Patient and Family Engagement, Vulnerable Populations, Disabilities
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, Decision Making, Women, Patient-Centered Healthcare, Clinician-Patient Communication, Patient and Family Engagement, Communication