Medicine and Health Sciences Commons^™

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, …

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 …

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 …

A Clear, Succinct Research Question Portends The Rest Of The Story, Jessica J. F. Kram, Lisa Sullivan Vedder, Brenda Fay, Deborah Simpson

Journal of Patient-Centered Research and Reviews

The goal of any research manuscript is to convey the story of a systematic answer to an important question in the field. A clear, succinct research or study question is what provides the storyline that connects all the sections of a manuscript. One of the most common strategies to developing a meaningful research question is the FINER approach, which encompasses five standards to determine the quality of a question: feasible, interesting, novel, ethical, and relevant. Using the FINER approach can provide the guidepost for all design and reporting decisions. This editorial recommends creating a study protocol aimed at answering your …

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 …

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.

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 …

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) …

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 …

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 …

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 …

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.

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.

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 …

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 …

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 …

Patients And Families As Partners In Patient-Oriented Research: How Should They Be Compensated?, Monika Novak-Pavlic, Jan Willem Gorter, Michelle P. Phoenix, Samantha K. Micsinszki, Kinga Pozniak, Lin Li, Linda Nguyen, Alice K. Soper, Elaine Yuen Ling Kwok, Jael N. Bootsma, Francine Buchanan, Hanae Davis, Sandra Abdel Malek, Karen M. Van Meeteren, Peter L. Rosenbaum

Journal of Patient-Centered Research and Reviews

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient 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 …

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. …

Shifting Perspectives: A Qualitative Study To Understand Family Expectations At The Time Of Their Child’S Admission, Rosamarie Maiorella, Avital Fischer, Sumeet L. Banker

Journal of Patient-Centered Research and Reviews

Purpose: Patient-centered approaches to health care acknowledge the important role that families have in patients’ lives. Shared expectations between families and providers have the potential to improve patient and family experience, hospital care, and outcomes. We aimed to understand families’ expectations for their child’s admission from the vantage point of the start of a hospital stay.

Methods: This qualitative research studied families of hospitalized children at a large pediatric tertiary care center. Family members were approached if their child was admitted to the general pediatrics team, was under 18 years of age, had a length of stay less than 5 …

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 …