Medicine and Health Sciences Commons^™

Measuring The Impact Of Primary Care Team Composition On Patient Activation Utilizing Electronic Health Record Big Data Analytics, Kristen K. Will, Yue Liang, Chih-Lin Chi, Gerri Lamb, Michael Todd, Connie Delaney

Journal of Patient-Centered Research and Reviews

Purpose

Team-based care has been linked to key outcomes associated with the Quadruple Aim and a key driver of high-value patient-centered care. Use of the electronic health record (EHR) and machine learning have significant potential to overcome previous barriers to studying the impact of teams, including delays in accessing data to improve teamwork and optimize patient outcomes.

Methods

This study utilized a large EHR dataset (n = 316,542) from an urban health system to explore the relationship between team composition and patient activation, a key driver of patient engagement. Teams were operationalized using consensus definitions of teamwork from the literature. …

Adult Development And Associated Health Risks, Elizabeth C. Halloran

Journal of Patient-Centered Research and Reviews

Much has been learned about adult development in recent decades. Adults go through stages of development (emerging adulthood, young adulthood, middle adulthood, post-retirement, and very old age) with certain challenges at each stage. Viewing patients through a developmental lens is part of providing patient-centered care. Knowing the prominent issues, stressors, and risks at each stage of development is important in understanding patients. This knowledge can help customize medical advice to patients regarding obesity, disability, sleep, substance use, relationships, and age-related declines. This paper summarizes an updated view of adult development and discusses its relevance to health risks and patient-centered care …

Research Frameworks: Critical Components For Reporting Qualitative Health Care Research, Ann Z. George

Journal of Patient-Centered Research and Reviews

Qualitative health care research can provide insights into health care practices that quantitative studies cannot. However, the potential of qualitative research to improve health care is undermined by reporting that does not explain or justify the research questions and design. The vital role of research frameworks for designing and conducting quality research is widely accepted, but despite many articles and books on the topic, confusion persists about what constitutes an adequate underpinning framework, what to call it, and how to use one. This editorial clarifies some of the terminology and reinforces why research frameworks are essential for good-quality reporting of …

Real-World Experiences Of Parkinson's Disease Off Time And Role Of Demographics, Radhika Devraj, Ahmad Elkouzi, Marlon R. Tracey

Journal of Patient-Centered Research and Reviews

Purpose

OFF periods are episodes when Parkinson’s disease (PD) medications work suboptimally, with symptoms returning and impacting quality of life. We aimed to characterize OFF periods using patient-reported frequency, severity, and duration, as well as determine these characteristics’ associations with demographics.

Methods

A retrospective cohort study using Fox Insight Data Exploration Network (Fox DEN) database was conducted. Eligible patients had PD and were > 18 years. The experience of OFF periods was characterized by frequency (number of episodes/day), duration (duration/episode), and severity (impact on activities). Significance level was Bonferroni-corrected for multivariate analyses.

Results

From a population of 6,757 persons with PD, …

Antibiotic Treatment For Well-Appearing Infants Born At ≥35 Weeks’ Gestation To Mothers With Chorioamnionitis Before And After Implementation Of Neonatal Early-Onset Sepsis Calculator, Surichhya Bajracharya, Preetha Prazad, Catherine Bennett, Nahren Asado

Journal of Patient-Centered Research and Reviews

Purpose

Our quality improvement study aimed to determine whether application of a neonatal early-onset sepsis calculator (NSC) among well-appearing infants born at ≥ 35 weeks’ gestation to mothers with chorioamnionitis decreases the number of lab evaluations (LEs) and antibiotic treatments (Abxs) without missing early-onset sepsis.

Methods

We compared 2 years (January 1, 2019–January 3, 2021) of data from a historical-control group before implementation of the NSC to 1 year (January 4, 2021–December 31, 2021) of data from a calculator group after implementation of the NSC to evaluate whether LE and Abx decreased following implementation of the NSC on January 4, …

Understanding Patient-Reported Outcome Measures Used In Adult Survivors Experiencing Long-Term Effects After Covid-19 Infection: A Rapid Review, Egle Barilaite, Harry Watson, Mevhibe B. Hocaoglu

Journal of Patient-Centered Research and Reviews

Purpose

Patient-reported outcome measures (PROMs) are used in individuals experiencing long-term effects from COVID-19 infection, or Long COVID, to evaluate the quality of life and functional status of these individuals. However, little is known about which PROMs are being utilised and the psychometric properties of these PROMs. Our purpose was thus to explore which PROMs are used in Long COVID patients and to discuss the psychometric properties of the PROMs.

Methods

For this rapid review, a systematic literature search was performed in the PubMed, Embase, and CINAHL databases. The found studies were screened using the PRISMA flowchart. We then performed …

Is There Room For Individual Patient-Specified Preferences In The Patient-Reported Outcome Measurement Revolution?, Leif I. Solberg, Jeanette Y. Ziegenfuss, Rachael L. Rivard, Christine K. Norton, Robin R. Whitebird, Glyn Elwyn, Mark Swiontkowski

Journal of Patient-Centered Research and Reviews

Purpose: The study aim was to test the feasibility of collecting qualitative patient-preferred outcomes or goals and the degree of their attainment as an addition to a standardized process for collecting quantitative composite patient-reported outcome measures (PROMs) from patients undergoing knee joint replacement..

Methods: Patients of a large Midwestern medical group scheduled to have total replacement of their knee joint have been asked to complete a PROMs survey preoperatively and at 3 and 12 months after surgery since 2014. In March 2020, an open-ended question about their most important preferred outcome was added to the existing questionnaire. The responses for …

Homebound Older Adult, Caregiver, And Provider Perspectives On The Benefits Of Home-Based Primary Care: A Narrative Review, Nila N. Sabetfakhri

Journal of Patient-Centered Research and Reviews

Home-based primary care (HBPC) is a clinical practice that is being increasingly utilized for the homebound older adult population. As the age demographics in the United States shift over time, these programs will need to be expanded to accommodate the growing aging population. This narrative review aims to compile studies on the benefits of HBPC from the perspective of homebound older adult patients, caregivers, and the health care providers who practice HBPC. Studies were identified through PubMed, Web of Science, and Google Scholar, and a total of 10 papers were included in this review. Identified benefits of HBPC for homebound …

Conference Proceedings: Select Abstracts Presented At 2023 Advocate Aurora Scientific Day

Journal of Patient-Centered Research and Reviews

This abstract supplement includes findings presented at the 49th annual Advocate Aurora Scientific Day on May 24, 2023. The Scientific Day symposium provides a virtual forum for the sharing of preliminary results from research and case studies conducted by faculty, fellows, residents, and other health professionals associated with Illinois-based Advocate Health Care and Wisconsin-based Aurora Health Care.

A Message To Our 2023 Peer Reviewers: Thank You

Journal of Patient-Centered Research and Reviews

As a multidisciplinary medical journal committed to a rigorous peer review process, the Journal of Patient-Centered Research and Reviews utilizes a diverse scholarly group of volunteer reviewers to evaluate the quality of and suggest improvements for original manuscript submissions. Each year, JPCRR publishes this citable acknowledgment as a means of expressing our editorial team’s sincere gratitude for the generous contributions made during the past 12 months by the below clinical, health research, and patient advocacy experts.

A Helping Hand Out Of The River: Refugee Perspectives For Provider Engagement, Brian L. Isakson, Elizabeth R. Stein, Alexandra Olson, Destiny Waggoner, Jill Holtz, Sara Ali, Suha Amer, Martin Ndayisenga

Journal of Patient-Centered Research and Reviews

Purpose: A growing number of refugee groups are seeking care within the U.S. health care system for medical, psychological, and social needs. Research is limited in understanding refugee-specific conceptualizations of helping relationships and provider characteristics that improve interactions in health systems. This study aimed to identify provider characteristics that facilitate engagement and helpfulness in a refugee-specific population from refugee participant voices to inform future practices of health care clinics.

Methods: Semi-structured interviews with refugee participants were conducted to assess 1) experiences moving on from difficult experiences, 2) engagement with the health system, and 3) provider characteristics that facilitated engagement and …

Pulmonary Specialist-Supported Health Coaching Delivered By Lay Personnel Improves Receipt Of Quality Care For Chronic Obstructive Pulmonary Disease: A Randomized Controlled Trial, Rachel Willard-Grace, Danielle Hessler, Beatrice Huang, Denise Devore, Chris Chirinos, Jessica Wolf, Devon Low, Chris Garvey, Doranne Donesky, Stephanie Tsao, David H. Thom, George Su

Journal of Patient-Centered Research and Reviews

Purpose: Half of people living with chronic obstructive pulmonary disease (COPD) do not receive high-quality, evidenced-based care as described in international guidelines. We conducted secondary data analysis of a previously published study to assess the ability of a model of lay health coaching to improve provision of guideline-based care in a primary care setting.

Methods: As part of a randomized controlled trial, we recruited English- and Spanish-speaking patients with moderate to severe COPD from primary care clinics serving a low-income, predominantly African American population. Participants were randomized to receive usual care or 9 months of health coaching from primary care …

Patients’ Experience Of Specialty Care Coordination: Survey Development And Validation, Varsha G. Vimalananda, Mark Meterko, Kailyn E. Sitter, Shirley Qian, Jolie B. Wormwood, B. Graeme Fincke

Journal of Patient-Centered Research and Reviews

Purpose: Specialty care coordination relies on information flowing bidirectionally between all three participants in the “specialty care triad” — patients, primary care providers (PCPs), and specialists. Measures of coordination should strive to account for the perspectives of each. As we previously developed two surveys to measure coordination of specialty care as experienced by PCPs and specialists, this study aimed to develop and evaluate the psychometric properties of a related survey of specialty care coordination as experienced by the patient, thereby completing the suite of surveys among the triad.

Methods: We developed a draft survey based on literature review, patient interviews, …

Survey Of Pediatric Critical Care Fellows On Postresuscitation Debriefing, Nicole K. Sather, Lauren E. Zinns, Gillian Brennan, Lily Guo, Nadia Khan, Vinod Havalad

Journal of Patient-Centered Research and Reviews

Purpose: Current guidelines recommend debriefing following medical resuscitations to improve patient outcomes. The goal of this study was to describe national trends in postresuscitation debriefing practices among pediatric critical care medicine (PCCM) fellows to identify potential gaps in fellow education.

Methods: A 13-item survey was distributed to fellows in all 76 ACGME-accredited PCCM programs in the United States in the spring of 2021. The online survey addressed frequency and timing of debriefings following medical resuscitations, whether formal training is provided, which medical professionals are present, and providers’ comfort level leading a debriefing. Results were analyzed using descriptive statistics.

Results: A …

Covid-19 Proactive Disease Management Using Covid Virtual Hospital In A Rural Community, Gandhari Loomis, Regina Rhodes, Ed Bujold, Golnosh Sharafsaleh, Ellen Collett, Mark Irwin, Elizabeth W. Staton, John M. Westfall

Journal of Patient-Centered Research and Reviews

Purpose: A community teaching hospital serving a rural population established an intensive “hospital at home” program for patients with COVID-19 utilizing disease risk stratification and pulse oximeter readings to dictate nurse and clinician contact. Herein, we report patient outcomes and provider experiences resulting from this “virtual” approach to triaging pandemic care.

Methods: COVID-19-positive patients appropriate for outpatient management were enrolled in our COVID Virtual Hospital (CVH). Patients received pulse oximeters and instructions for home monitoring of vital signs. CVH nurses contacted the patient within 12–48 hours. The primary care provider was alerted of the patient’s diagnosis and held a virtual …

Interpreting P Values In 2023, Jennifer K. Homa-Bonell

Journal of Patient-Centered Research and Reviews

If recent experiences shared among the biostatistician community are indicative of a sea change in research, then a most-welcome culture shift in dialogue surrounding the proper use and interpretation of the P value, which measures statistical probability, is underway. This editorial strives to offer guidance for researchers who would like to incorporate more comprehensive reporting in their research, namely, a broader discussion that goes beyond looking at the P value by itself and includes effect size estimates, confidence intervals, and clinical implications when interpreting quantitative results. Another evolving development in clinical research is the preferred language when referring …

Examining Racial Disparities In Unemployment Among Health Care Workers Before, During, And After The Covid-19 Pandemic, Jason Semprini

Journal of Patient-Centered Research and Reviews

Among the U.S. health care workforce, the COVID-19 pandemic appeared to greatly impact employment levels in 2020. However, no research has examined how the pandemic’s impact on employment varied by racial/ethnic group or beyond the initial emergency year. Our study aimed to quantitatively evaluate workforce trends by race/ethnicity before, during, and after the COVID-19 pandemic. This study analyzed each March supplement of the Current Population Survey over a 5-year span (2018–2022). We restricted the sample to nurses, physician assistants, and other non-physician health care workers (HCW), per specific census occupation codes, and constructed an event-history study to test for differential …

Abstracts From The 2023 Health Care Systems Research Network (Hcsrn) Annual Conference, Denver, Colorado

Journal of Patient-Centered Research and Reviews

The Health Care Systems Research Network (HCSRN) is comprised of 20 learning health systems with embedded population-based research units. The network’s annual conference serves as a forum for research teams from member institutions to disseminate project findings, explore scientific collaborations, and share insights about conducting research in real-world care delivery settings. Abstracts presented at HCSRN 2023 are published in this issue supplement of Journal of Patient-Centered Research and Reviews, the journal of record for HCSRN’s annual conference proceedings.

Previous Health Care Experiences’ Influence On Health Care Perceptions Among Residents In Six Homeless Shelters In Seattle, Washington, July–October 2021, Ashley A. Meehan, Sarah N. Cox, Nicholas B. Thuo, Julia H. Rogers, Amy C. Link, Miguel A. Martinez, Natalie K. Lo, Brian J. Manns, Melissa A. Rolfes, Eric J. Chow, Helen Y. Chu, Emily Mosites, Morhaf Al Achkar

Journal of Patient-Centered Research and Reviews

Purpose: The study purpose was to learn and describe 1) where homeless shelter residents receive health care, 2) what contributes to positive or negative health care experiences among shelter residents, and 3) shelter resident perceptions toward health care.

Methods: Semi-structured interviews (SSIs) utilizing purposive sampling and focus group discussions (FGDs) utilizing convenience sampling were conducted at 6 homeless shelters in Seattle-King County, Washington, during July–October 2021. All residents (age ≥ 18) were eligible to participate. SSIs were conducted with 25 residents, and 8 FGDs were held. Thematic analysis was conducted using Dedoose.

Results: Participants received health care …

Calcium Carbonate As A Potential Intervention To Prevent Labor Dystocia: Narrative Review Of The Literature, Sabahat Raees, Marie Forgie, Rita Mitchell, Emily Malloy

Journal of Patient-Centered Research and Reviews

Anecdotally, there are attestations from clinicians of calcium carbonate being used successfully for laboring people experiencing labor dystocia. The goal of this narrative review was to provide a synopsis of pertinent literature on calcium use in obstetrics to explore the potential benefit of calcium carbonate as a simple and low-cost intervention for prevention or treatment of labor dystocia. To answer how calcium and carbonate physiologically contribute to myometrium contractility, we conducted a literature search of English-language peer-reviewed articles, with no year limitation, consisting of the keywords “calcium,” “calcium carbonate,” “calcium gluconate,” “pregnancy,” “hemorrhage,” and variations of “smooth muscle contractility” and …

Identifying Patient Perceptions Of Inequality In Public Health Care Services: Evidence From A Single Indian Administrative District, Barnali Biswas, Piyal Basu Roy

Journal of Patient-Centered Research and Reviews

Purpose: Assessment of patient experiences is an essential step to revamp patient-centered care and identify systemic effectiveness as part of universal health coverage. This paper analyzes the variation of health care at different levels of the public health care system in India by measuring patients’ experience with the care they have received in the Alipurduar district of India.

Methods: From May 2021 to April 2022, stratified sampling technique was applied to collect primary data from 450 patients having different health problems from different levels of the public health care system. In addition, Consumer Assessment of Healthcare Providers and Systems (CAHPS) …

Leveraging The Strength Of Collaboration In Rapidly Changing Times: The 29th Annual Conference Of The Health Care Systems Research Network, Michael A. Horberg, Suzanne Simons

Journal of Patient-Centered Research and Reviews

On February 21, 2023, the 29th annual conference of the Health Care Systems Research Network (HCSRN) kicked off at the Sheraton Downtown Denver with more than 320 participants from 20 HCSRN member institutions. Attendees gathered, in person, to reconnect and network during the 3-day conference, which featured the theme Leveraging the Power of the Network in Rapidly Changing Times. This paper highlights takeaways from the conference’s plenary sessions, panel discussions, and abstract presentations.

Exploring The Possible Phenomenon Of Viral Interference Between The Novel Coronavirus And Common Respiratory Viruses, Spencer Deleveaux, Alexandria Clarke-Kregor, Xavier Fonseca-Fuentes, Essam Mekhaiel

Journal of Patient-Centered Research and Reviews

At the peak of the 2021 wave of the SARS-CoV-2 alpha variant in North America, there was concern for a superimposed wave of viral respiratory infections. There was, however, an apparent shift in the usual epidemiology of these pathogens, especially during the traditional influenza season from approximately October 2020 to March 2021. This article seeks to briefly describe the epidemiology of notable respiratory pathogens during the first wave of the COVID-19 pandemic and to focus on one possible factor for the trends observed. There are many contributory elements to the observed viral trends, but in particular, we present a synopsis …

“Healing Can Be A Very Jagged Line”: Reflections On Life As A Covid-19 Long Hauler, Leah M. Hecht, Rhonda Adams, Danielle Dutkiewicz, Debbie Radloff, Mallory N. Wales, Jeffory Whitmer, Dana Murphy, Sara Santarossa

Journal of Patient-Centered Research and Reviews

“Long COVID” — a term referring to COVID-19-associated symptoms and conditions (ie, sequelae) that remain or emerge after resolution of a SARS-CoV-2 infection — is a multifaceted condition about which little is known. As part of formalized patient-engaged research at a large Midwestern health system, patient stakeholders with long COVID (N = 5) wrote stories based on their lived experience, as this was their preferred format for detailing their experience with the condition. These patient stakeholders reviewed one another’s stories, identified relevant quotes, and provided opportunities for elaboration. Independently, a trained researcher extracted quotes from the stories, identified themes, and …

Chewed Versus Swallowed Ticagrelor In P2y12 Inhibitor-Naïve Patients Undergoing Percutaneous Coronary Intervention, Thomas F. Wilson, Muddasir Ashraf, M. Fuad Jan, Tonga Nfor, Louie Kostopoulos, Joaquin Solis, Jayant Khitha, Ahmad Khraisat, Anthony C. Defranco, Tanvir Bajwa, Suhail Q. Allaqaband

Journal of Patient-Centered Research and Reviews

Purpose: Dual antiplatelet therapy is standard for patients undergoing percutaneous coronary intervention (PCI) with stents. Traditionally, patients swallow the loading dose of a P2Y12 inhibitor before or during PCI. Time to achieve adequate platelet inhibition after swallowing the loading dose varies significantly. Chewed tablets may allow more rapid inhibition of platelet aggregation. However, data for this strategy in patients with stable ischemic heart disease or non-ST-elevation acute coronary syndrome (NSTE-ACS) are less robust.

Methods: In this single-center prospective trial, 112 P2Y12-naïve patients with stable ischemic heart disease or NSTE-ACS on aspirin therapy and who received ticagrelor after coronary angiography but …

Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar For Study Of Rare Disease Populations, Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh

Journal of Patient-Centered Research and Reviews

Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) and its variants.

Methods: A single online focus group among those > 18 years of age and living with SCD was conducted. Participants (N = 25) were recruited through a United Kingdom-based SCD charity. Discussions were transcribed verbatim, with data therein analyzed using inductive thematic analysis.

Results: Five primary motivators for sharing health data were identified: improving awareness; knowing …

Perspectives Of People With Cancer Or Hereditary Cancer Risk On The Use And Value Of Online Peer Support, Jill Holdren, Karl Surkan, Andrea Downing

Journal of Patient-Centered Research and Reviews

Purpose: People with cancer routinely seek information and support in peer groups online. While peer communities constitute a major component of the health care landscape, they exist in isolation from clinical and research institutions. This study aimed to explore how and why cancer patients utilize online peer support groups and how they might be improved.

Methods: A convenience sample of members of 6 closed Facebook cancer peer support groups (n = 291) participated in an online needs assessment survey. We further conducted semi-structured interviews with 14 members and 6 moderator-patients, hand-coding the free-text responses and interview transcripts.

Results: Group …

Understanding Quality Of Life In Patients With Acute Leukemia, A Global Survey, Zack Pemberton-Whiteley, Samantha Nier, Jan Geissler, Sophie Wintrich, Bregje Verhoeven, Rita O. Christensen, Sam Salek, Esther Natalie Oliva, Tatyana Ionova, Jennie Bradley

Journal of Patient-Centered Research and Reviews

Purpose: The Acute Leukemia Advocates Network (ALAN) sought to determine which factors are most associated with poor quality of life (QoL) in patients with acute leukemia and to determine key issues and unmet needs through administration of an online survey distributed worldwide via partner patient organizations.

Methods: ALAN developed a questionnaire informed by literature review and based extensively on the hematological malignancy-specific patient-reported outcomes (HM-PRO) measure to assess the impact of acute leukemia on QoL and its relationships with patients’ demographics, disease state, disease impact, and support from health care professionals. Univariate and multivariable statistical analysis was used to investigate …

A Message To Our 2022 Peer Reviewers: Thank You

Journal of Patient-Centered Research and Reviews

Journal of Patient-Centered Research and Reviews utilizes a diverse group of scholars to evaluate original submissions. Through this published acknowledgment, the editors of JPCRR express our sincerest gratitude for the generous volunteer contributions made over the previous 12 months by the following clinical, health research, and patient advocacy experts.

Neighborhood Condition Prevalence Rates Correlate With Covid-19 Mortality In Milwaukee County, Wisconsin, George L. Morris Iii

Journal of Patient-Centered Research and Reviews

Purpose: We sought to determine if census tract-level (ie, neighborhood) COVID-19 death rates in Milwaukee County correlated with the census tract-level condition prevalence rates (CPRs) for individual COVID-19 mortality risk.

Methods: This study used Milwaukee County-reported COVID-19 death rates per 100,000 lives for the 296 census tracts within the county to perform a linear regression with individual COVID-19 mortality risk CPR, mean age, racial composition of census tract (by percentage of non-White residents), and poverty (by percentage within census tract), followed by multiple regression with all 7 CPRs as well as the 7 CPRs combined with the additional demographic variables. …