Medical Specialties Commons^™

Evaluating The Readability Of Online Patient Education Materials For Avascular Necrosis, Gabriella B. Smith, Grady H. Hofmann, Anna V. Gussner, Nicole S. Pham, Nneoma O. Duru, Kevin G. Shea

Journal of Patient-Centered Research and Reviews

Purpose: Avascular necrosis (AVN) is a progressive pathology affecting pediatric and adult patients. Given the risks of joint collapse and surgery, patients frequently research their condition online. The average reading level in the United States is approximately the eighth-grade level. The National Institutes of Health (NIH) recommend that patient materials be written at or below a sixth-grade level. This study aimed to assess the readability and quality of online AVN resources.

Methods: A Google search using the terms “avascular necrosis” and “osteonecrosis” was conducted, and firstpage results were aggregated. Flesch-Kincaid Grade Level, Gunning Fog Index, and Flesch Reading Ease tests …

A Mixed Methods Study Of Inpatients’ Experiences, Priorities, And Health-Related Quality Of Life During High- Flow Nasal Cannula Therapy, Cintamani H. Ellsworth, Rebecca S. Bartlett

Journal of Patient-Centered Research and Reviews

Purpose: High-flow nasal cannula (HFNC) is an oxygen delivery method with numerous benefits for severely ill patients. There is a paucity of research focused on the perspectives of patients receiving HFNC oxygen therapy. This study aimed to engage with patients to gain a clearer understanding of their experiences, priorities, and health-related quality of life.

Methods: A cross-sectional, mixed methods study was completed with 10 adult inpatients who had received HFNC oxygen therapy during their hospital admission. Semi-structured interviews and the Patient Reported Outcomes Measurement Information System (PROMIS) Global Health Scale were used to identify participant perceptions of their physical and …

Development And Psychometric Analysis Of An Instrument To Assess Social Stigma Associated With Parkinson's Disease, Ana Lourdes Guerra-Anzaldo, Arturo Emmanuel Espinosa-Picos, Karen Itzel Sánchez-Ramírez, Ana Jimena Hernández-Medrano, Amin Cervantes-Arriaga, Ariadna Domínguez-García, Mayela Rodríguez-Violante

Journal of Patient-Centered Research and Reviews

Purpose: To develop and report the psychometric properties of a comprehensive scale designed to measure stereotypes and attitudes of the general population towards people with Parkinson’s disease (PwP).

Methods: The development and analysis of the Parkinson's Disease Stigma Perception scale (PDSP) included four phases: 1) literature review, 2) item development, 3) tests of validity and reliability, and 4) dissemination of a preliminary version. Internal consistency was assessed using Cronbach's alpha, exploratory factor analysis (EFA) to explore underlying structures, and confirmatory factor analysis to test the model's fit.

Results: Six (2%) of the 294 survey respondents were disqualified because of incomplete …

Perspectives On Communicating Information And Shared Decision-Making In Patients Undergoing Transtibial Amputation, Lina Walther Sjödin, Lasse J. Lapidus, Eva Torbjörnsson

Journal of Patient-Centered Research and Reviews

Purpose: Patients undergoing lower extremity amputation often desire to take an active part in decision-making. The primary aim of this study was to explore patients’ experiences of the care trajectory and information provided after a new care program was introduced. The secondary aim was to explore patients' perspectives of their involvement and participation in shared decision-making throughout the care process. The care program features new educational material, recommendations for the sagittal surgical technique, and information about a rigid removable dressing, early liner treatment, and a multidisciplinary team follow up three weeks after amputation.

Methods: Fifteen participants who underwent transtibial amputation …

Patient Information Needs During Ambulatory Medication Changes: A Qualitative Study, Elaine Giletta, Vanessa B. Hurley, Yushi Yang, Jessica L. Schwartz, Rabia Jalalzai, Nicole L. Mollenkopf, Raquel Mayne, Samantha I. Pitts

Journal of Patient-Centered Research and Reviews

Purpose: We performed interviews with patients and caregivers to explore whole-person, whole-regimen information needs at times of routine outpatient medication changes. We categorized information needs in this relatively unstudied context and identified which needs were commonly recognized as insufficiently met.

Methods: We explored the content of the semi-structured interviews, which involved nine patients and two caregivers of pediatric patients, all of whom experienced a recent medication change in the outpatient setting of a large urban academic healthcare system. We used inductive thematic analysis to organize information needs into categories to identify key information gaps.

Results: We identified five categories of …

Comparative Efficacy And Safety Of Cryoballoon Vs Laser Balloon Ablation For Pulmonary Vein Isolation In Patients With Paroxysmal Atrial Fibrillation, Mahmoud Ali, Dorota Magdon, Abdulghani Mounir, Lynn Erickson, James Adefisoye, Jim Kanani, Andy Kieu, Abdullah Malik, Ali Ali, Nour Ghosoun, Jodi Zilinski, Arshad Jahangir, M. Eyman Mortada, Imran Niazi, Atul Bhatia

Journal of Patient-Centered Research and Reviews

Purpose: Atrial fibrillation (AF), the most common arrhythmia in older adults, is often treated with cryoballoon ablation (CBA) or laser balloon ablation (LBA) when refractory to medication. We used real-world patient data to investigate differences in arrhythmia-free survival, procedure and fluoroscopy times, and complications between these techniques.

Methods: In this single-center, retrospective study of 178 patients with symptomatic paroxysmal AF referred for first-time pulmonary vein isolation (PVI), 103 underwent CBA, and 75 underwent LBA. Recurrence was defined as any atrial arrhythmia of > 30 seconds’ duration after a three-month blanking period. Complications at 30 days were recorded. Kaplan-Meier analysis was used …

The Use Of Person-Centered Language In Scientific Research Articles Focused On Psychosis, Zach Monahan, Tanner Stone, Vinay Swami, Kelly Dunn, Micah Hartwell

Journal of Patient-Centered Research and Reviews

Purpose: Societal stigma of psychosis leads to delayed treatment for individuals experiencing early symptoms, for fear of being labeled “crazy” or “psychotic.” Delayed treatment can worsen the prognosis of individuals with psychosis. Proper adherence to person-centered language (PCL) guidelines can curb the widely held stigmatized preconceptions about psychotic conditions.

Methods: Our meta-epidemiological analysis began with a systematic search of literature in PubMed discussing psychosis from 2020-2022. From the 14,522 results, we randomly selected 500 articles in journals with at least 20 articles on psychosis (n = 9,775), of which 241 articles met the inclusion criteria. These papers were screened for …

Bridging The Gap Between Knowledge And Practices Pertaining To Naloxone Use: A Single-Institution Experience In North Carolina, Michael S. Argenyi, Gisele Bailey, Christopher J. Mclouth, Erin Barnes, Candice J. Mcneil

Journal of Patient-Centered Research and Reviews

Naloxone is a life-saving medication for opioid overdose, which claims many lives annually. This study investigated provider attitudes about, beliefs about, and barriers to naloxone use to inform an increase in provider prescription of naloxone. The survey took place at a large Southern tertiary health center. An adapted REDCap survey utilizing validated questions was distributed via institutional e-mail listservs. The results (N = 181) were analyzed using descriptive and chi-square statistics. While 90.9% of the providers had heard of the strategy of prescribing naloxone to prevent overdose, only 72.1% of providers would have considered prescribing naloxone. Providers reported implementing treatment …

Cross-Platform Analysis Of Mammography Narratives: A Comparative Study On Social Media Engagement, Thomas Stirrat, Jonathan Garner, Parth Tailor, Daniel Weitz, Muhammad Umair, Yusuf T. Akpolat

Journal of Patient-Centered Research and Reviews

Purpose: This study examines the representation of mammography on social media platforms, specifically, X (Twitter), Facebook, TikTok, and Instagram, from 2006 to 2023. X (Twitter) went public in 2006, Facebook in 2004, Instagram in 2012, and TikTok in 2018 (after merging with Musical.ly). The analysis starts from after the public launch years to analyze personal experiences shared online.

Methods: A retrospective content analysis was conducted on 1,771 posts using specific hashtags related to mammography. Posts were categorized into themes including emotional and psychological impacts, clinical and procedural details, and social and supportive interactions. The analysis involved summarizing the distribution of …

“Ups And Downs, Joys And Sorrows” – Assessment And Clinical Relevance Of Patient Priorities In An Interdisciplinary Parkinson’S Disease Clinic, Esme D. Trahair, Allison M. Allen, Sneha Mantri

Journal of Patient-Centered Research and Reviews

Purpose: Barriers to communication and inaccurate provider assumptions about patient priorities limit the delivery of comprehensive, high-quality, patient-centered care (PCC) to people with Parkinson’s (PWP). This study aimed to analyze priorities of PWP using a qualitative, unstructured single-question survey and to test associations with validated quality of life (QOL) measures.

Methods: During appointments at a subspecialty, interdisciplinary clinic, PWP (n = 139) provided written responses to the prompt: “What is important for your care team to know about you?” Patient Health Questionnaire, Montreal Cognitive Assessment, and Hoehn and Yahr scales were obtained through retrospective chart review. Key qualitative themes were …

“It Is What It Is” – The Lived Experience Of Women With Breast Cancer Undergoing Axillary Lymph Node Dissection, Eva Vikhe Patil, Anna Forsberg, Carina Wennerholm, Jenny Drott

Journal of Patient-Centered Research and Reviews

Purpose: The lived experience of women undergoing axillary procedures as part of their breast cancer (BC) treatment remains unexplored. This lack of in-depth understanding could hamper implementation of person-centred care, which is concerning because BC is the most common form of cancer in women. The aim of this study was therefore to explore the lived experiences of women undergoing axillary lymph node dissection (ALND) due to BC.

Methods: Twelve women with a mean age of 59 years were interviewed about their lived experiences of axillary procedures as part of their BC treatment. The interviews were recorded, transcribed verbatim, and analysed …

Molecular Tumor Testing On Colorectal Adenocarcinoma Specimens In A Large Community-Based Healthcare System, David H. Kruchko, Sareena Ali, Mahbubul Hasan, Madeline Sesselmann, Imad Almanaseer, Eli D. Ehrenpreis

Journal of Patient-Centered Research and Reviews

Purpose: This study aimed to describe the adherence of National Comprehensive Cancer Network guidelines to perform genetic screening for all colorectal cancer (CRC) specimens with molecular tumor testing, eg, immunohistochemical (IHC) testing, in a large community-based healthcare setting. The study also identified trends involving characteristics of CRC, individual reporting physician, and physician location and examined the potential impact of these trends on the performance of molecular tumor testing.

Methods: This was a retrospective, multi-center study using a centralized pathology database to assess molecular testing on CRC specimens. The primary endpoint was whether tumor testing of a CRC specimen was performed. …

Central Nervous System Prophylaxis Utilization In Patients With Newly Diagnosed Diffuse Large B-Cell Lymphoma Within A Large Community Health System, Michael J. Williams, Sol D. Atienza, Renee H. Aranda, Kayleigh B. Flint, Sherjeel Sana, Stephen C. Medlin, Zartash Gul, Federico A. Sanchez, Michael A. Thompson

Journal of Patient-Centered Research and Reviews

Purpose: The impact of central nervous system (CNS) prophylaxis in diffuse large B-cell lymphoma (DLBCL) is contentious. The CNS International Prognostic Index (IPI) calculator offers prognostic guidance in identifying those patients who may be at highest risk of disease progression or relapse to the CNS. However, it is unclear whether this tool has guided clinician decision-making in a real-world setting. Studies have suggested that CNS prophylaxis may not offer clinically significant benefit in terms of preventing CNS disease progression. Given this, we investigated the utilization of CNS prophylaxis within our own population and documentation of the CNS-IPI score.

Methods: We …

Implementation Of A Patient Decision Aid For Atrial Fibrillation Ablation Improves Patient Procedural Knowledge But Does Not Impact Perceived Involvement With The Shared Decision-Making Process, Nicholas Sommers, Jason C. Rubenstein, Abdur Rahman Ahmad, James Oujiri, Ridhima Kapoor, Graham Adsit, Marcie Berger

Journal of Patient-Centered Research and Reviews

Purpose: Shared decision-making (SDM) is a method for a patient and physician to cooperatively consider a diagnostic or therapeutic option, ultimately empowering the patient to make an informed decision. Atrial fibrillation (AF) ablation is a procedure that would benefit from SDM given the risk of serious adverse events, the high rate of arrhythmia recurrence, and alternative treatment options. Implementing a patient decision aid (PDA) may help facilitate AF ablation SDM by succinctly conveying important information to patients.

Methods: Patients scheduled for initial AF catheter ablation were randomized to a virtual SDM visit utilizing a PDA, which covered procedural risks and …

Bringing Virtual Reality To Mainstream Pediatric Care, Wayne Kuang, Eric J. Yang, Roland Truong, Benjamin K.P. Woo

Journal of Patient-Centered Research and Reviews

Virtual reality (VR) stands as an innovative technology transforming our interactions with the digital world. Its integration into health care has proven advantageous for both patients and health care providers across multiple levels and modalities. Given that VR is becoming increasingly accessible and prevalent, health care providers should explore incorporating the technology into their practices, particularly within the pediatric population, which is becoming progressively more accustomed to the technology. This topic synopsis provides a broad discussion of the current literature, exploring current and probable future applications of VR in pediatric patient care, particularly in improving the hospital experience, facilitating education …

Cruising Speed: Our Journal's 10-Year Voyage, Dennis J. Baumgardner, Joe Grundle

Journal of Patient-Centered Research and Reviews

In this invited editorial, two long-tenured editors for the Journal of Patient-Centered Research and Reviews recount the publication’s many impactful contributions to the medical literature over its first 10 years.

Factors Associated With Increased Health Care Utilization For Patients With Dementia With Lewy Bodies: A Narrative Review, Kathryn A. Wyman-Chick, Matthew J. Barrett, Michael J. Miller, Jennifer L. Kuntz, Ella A. Chrenka, Rebecca C. Rossom

Journal of Patient-Centered Research and Reviews

Numerous studies have demonstrated that dementia is associated with increased utilization of health care services, which in turn results in increased costs of care. Dementia with Lewy bodies (DLB) is associated with greater costs of care relative to other forms of dementia due to higher rates of hospitalization and nursing home placement directly related to neuropsychiatric symptoms, parkinsonism, increased susceptibility to delirium, and elevated rates of caregiver burden. There is a critical need for researchers to identify potentially modifiable factors contributing to increased costs of care and poor clinical outcomes for patients with DLB, which may include comorbidities, polypharmacy/contraindicated medications, …

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 …

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, …

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, …

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 …

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 …

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 …

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.

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 …

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 …

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 …

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 …