Health Services Research Commons^™

A 2-Hour Diabetes Self-Management Education Program For Patients With Low Socioeconomic Status Improves Short-Term Glycemic Control, Michael G. Jakoby Iv, Melissa Schleder, Vickie Luff, Cynthia Yergler, Albert Botchway, Cheryl Burns

Journal of Patient-Centered Research and Reviews

Diabetes self-management education (DSME) improves glycemic control, but patients with low socioeconomic status face institutional and personal barriers to receiving DSME. A retrospective single cohort study of a 2-hour group DSME program prioritizing accessibility and completion of a tightly focused curriculum was performed to determine if glycemic control improved and whether a longer, more comprehensive, prospective evaluation of the program is indicated. All patients who participated in the program from September 2017 to December 2018 were included in the analysis. The primary study endpoint was change in hemoglobin A1c (HbA1c) from baseline. A total of 58 out of 94 patients …

What Outcomes Matter To Patients After Joint Or Spine Surgery?, Robin R. Whitebird, Leif I. Solberg, Christine K. Norton, Jeanette Y. Ziegenfuss, Stephen E. Asche, Elizabeth S. Grossman

Journal of Patient-Centered Research and Reviews

Purpose: Patient-reported outcome measures (PROMs) are increasingly used in clinical care, but there have been few studies of what patients identify as the most important outcomes.

Methods: Semi-structured interviews were conducted with 65 patients undergoing hip or knee replacement, spinal discectomy/laminotomy, or a spinal fusion. Interviews focused on outcomes patients identified as important, perceived usefulness of standardized PROMs measures, and contextual situations important to their care. Data were analyzed using a directed content analysis approach.

Results: Patients identified desired outcomes that were unique and important to them. Their preferred outcomes focused in the areas of freedom from pain, getting back …

The Inflammatory Bowel Disease Questionnaire In Randomized Controlled Trials Of Treatment For Ulcerative Colitis: Systematic Review And Meta-Analysis, Aaron Yarlas, Stephen Maher, Martha Bayliss, Andrew Lovley, Joseph C. Cappelleri, Andrew G. Bushmakin, Marco D. Dibonaventura

Journal of Patient-Centered Research and Reviews

Purpose: The 32-item Inflammatory Bowel Disease Questionnaire (IBDQ-32) is the most frequently used instrument to capture disease-specific quality of life in randomized clinical trials for ulcerative colitis. This review and meta-analysis provides the first synthesis of evidence regarding the sensitivity of IBDQ-32 total and domain scores to treatment efficacy.

Methods: A systematic literature search and risk-of-bias assessment yielded 14 articles that were included in the primary analysis. Treatments were categorized as efficacious if they met the primary efficacy endpoint (which was not the IBDQ-32); otherwise they were categorized as non-efficacious. A continuous measure of treatment efficacy was calculated for …

Listening To The Patient: A Typology Of Contextual Red Flags In Disease Management Encounters, Amy E. Binns-Calvey, Gunjan Sharma, Naomi Ashley, Brendan Kelly, Frances M. Weaver, Saul J. Weiner

Journal of Patient-Centered Research and Reviews

Purpose: Patients send clues, often unwittingly, when they are grappling with a life challenge that complicates their care. For instance, a patient may lose control of a previously well-managed chronic condition or start missing appointments. When explored, these clues help clinicians uncover the life circumstance impacting the individual’s ability to manage their health and health care. Such clues are termed “contextual red flags.” Effective care requires recognizing them, asking about them, and customizing the care plan where feasible. We sought to develop a typology of contextual red flags by analyzing audio recordings along with the medical records of encounters between …

Surgeons’ Views On Shared Decision-Making, Suraj Kannan, Jayhyun Seo, Kevin R. Riggs, Gail Geller, Emily F. Boss, Zackary D. Berger

Journal of Patient-Centered Research and Reviews

Purpose: Shared decision-making (SDM) has a significant role in surgical encounters, where decisions are influenced by both clinician and patient preferences. Herein, we sought to explore surgeons’ practices and beliefs about SDM.

Methods: We performed a qualitative study consisting of semi-structured individual interviews with 18 surgeons from private practice and academic surgery practices in Baltimore, Maryland. We purposively sampled participants to maximize diversity of practice type (academic vs private), surgical specialty, gender, and experience level. Interview topics included benefits and challenges to patient involvement in decision-making, communicating uncertainty to patients, and use of decision aids. Interviews were audio-recorded and transcribed. …

Factors Influencing Family Burden In Pediatric Hematology/Oncology Encounters, Hannah R. Abrams, Hayden S. Leeds, Heidi V. Russell, Melody B. Hellsten

Journal of Patient-Centered Research and Reviews

Purpose: Caring for a child with cancer or hematologic disease places unique stress on a family unit. Families’ subjective experience of this care-related burden mediates the relationship between cost and health-related outcomes. While financial costs are well described for families of pediatric hematology/oncology patients, it is unclear how cost and other factors each contribute to families’ overall experience of care-related burden. This study identifies and groups the challenges that families report and describes their association with overall reported burden.

Methods: This mixed-methods analysis of a cross-sectional single-center study was conducted via structured, self-administered questionnaire provided to inpatient and outpatient caregivers …

House Calls Are Reaching The Tipping Point — Now We Need The Workforce, Thomas Cornwell

Journal of Patient-Centered Research and Reviews

Home-based primary care (HBPC) improves the lives of high-cost, frail, homebound patients and their caregivers while reducing costs by keeping patients at home and reducing the use of hospitals and nursing homes. Several forces are behind the resurgence of HBPC, including the rapidly aging population, advancements in portable medical technology, evidence showing the value of HBPC, and improved payments for HBPC. There are 2 million to 4 million patients who could benefit from HBPC, but only 12% are receiving it. The number of these patients is expected to double over the next two decades. This requires a larger and better …

Measuring Patients’ Perceptions Of Health Care Encounters: Examining The Factor Structure Of The Revised Patient Perception Of Patient-Centeredness (Pppc-R) Questionnaire, Bridget L. Ryan, Judith Belle Brown, Paul F. Tremblay, Moira Stewart

Journal of Patient-Centered Research and Reviews

Purpose: Given the ongoing desire to make health care more patient-centered and growing evidence supporting the provision of patient-centered care, it is important to have valid tools for measuring patient-centered care. The patient-centered clinical method (PCCM) is a conceptual framework for providing patient-centered care. A revision to the PCCM framework led to a corresponding need to enhance the Patient Perception of Patient-Centeredness (PPPC) questionnaire. The original PPPC was aligned with the components of the PCCM conceptual framework and developed to measure patient-centeredness from the patient’s perspective. The purpose of this study was to examine the factor structure of a revised …

Celebrating A Quarter-Century Of Public Domain Research: 25th Annual Conference Of The Health Care Systems Research Network, Sarah M. Greene, Carolyn A. Taylor, Suma Vupputuri

Journal of Patient-Centered Research and Reviews

The 25th annual conference of the Health Care Systems Research Network (HCSRN) was held April 10–12 in Portland, Oregon, attracting 420 attendees. The HCSRN, a consortium of 18 community-based research organizations embedded in or affiliated with large health care delivery systems, has hosted annual research conferences since 1994. The primary objective of the conference is to convene researchers, project staff, funders, and other stakeholders to share latest scientific findings and cultivate new partnerships among research teams, patients, and clinicians. Collaboration is the cornerstone of the HCSRN’s success; the conference serves as a catalyst for a variety of collaborative ventures as …

Variation And Change Over Time In Promis-29 Survey Results Among Primary Care Patients With Type 2 Diabetes, Juell Homco, Kristin Rodriguez, David R. Bardach, Elizabeth A. Hahn, Suzanne Morton, Daren Anderson, David Kendrick, Sarah Hudson Scholle

Journal of Patient-Centered Research and Reviews

Purpose: We sought to describe results of patient-reported outcome measures implemented among primary care patients with diabetes and explore factors associated with changes in scores over time.

Methods: Two organizations serving diverse patient populations collected the PROMIS-29 survey at baseline and 3-month follow-up for patients with type 2 diabetes. Bayesian regression analysis was used to examine the relationship between patient characteristics and changes in PROMIS-29 scores. Exploratory analyses assessed relationships between goal-setting and changes in scores.

Results: The study population reported substantially more problems with physical functioning (mean: 42.5 at Site 1 and 38.9 at Site 2) and pain interference …

Team-Based Care And Patient Satisfaction In The Hospital Setting: A Systematic Review, Kristen K. Will, Melissa L. Johnson, Gerri Lamb

Journal of Patient-Centered Research and Reviews

Purpose: Limited research examining the relationship between team-based models of care and patient satisfaction in the hospital setting is available. The purpose of this literature review was to explore this relationship as well as the relationships between team composition, team-based interventions, patient satisfaction, and other outcomes of care when measured as part of the study.

Methods: A systematic appraisal of research studies published through February 2017 was conducted using PubMed, Cochrane Library, CINAHL, Embase, Ovid, gray literature and Google Scholar. Inclusion criteria were 1) experimental (randomized control trials), quasi-experimental, or non-experimental (cross-sectional) study design; 2) team-based care interventions; 3) hospital …

Delineating And Operationalizing The Definition Of Patient-Oriented Research: A Modified E-Delphi Study, Navdeep Kaur, Pierre Pluye

Journal of Patient-Centered Research and Reviews

Purpose: The importance of patient-oriented research (POR) has been recognized by the scientific community and governmental agencies, and its development is exponential across most health-related disciplines. The current Canadian Institutes of Health Research (CIHR) definition of POR is overly broad and hinders the reliable selection of POR-related publications from bibliographic databases. The present study was aimed to adapt CIHR’s definition of POR into an operational definition that can be used by stakeholders for selecting POR publications.

Methods: Eighteen POR experts in Québec, Canada, were invited to participate in a modified e-Delphi study. Two rounds of Delphi surveys were undertaken to …

Acknowledgment Of 2018 Jpcrr Peer Reviewers

Journal of Patient-Centered Research and Reviews

The editors of Journal of Patient-Centered Research and Reviews gratefully acknowledge the contributions of submission reviewers from the previous year. Peer review is an essential component to publishing quality, trustworthy scientific literature.

Patient Self-Management: Tools And Barriers, Dennis J. Baumgardner

Journal of Patient-Centered Research and Reviews

In his issue introduction, the editor-in-chief of the Journal of Patient-Centered Research and Reviews comments on the theme of patient self-management of chronic diseases and the related articles published therein. Illnesses such as cardiovascular disease, diabetes, epilepsy, arthritis, asthma, and obesity often require patients to administer their own medication daily or adhere to strict dietary restrictions. Progress is being made on the process of implementation and evaluation of patient self-management tools in primary care practices. Barriers to self-management tool implementations in clinics, as well as their use by individual patients, must be understood and addressed.

How To Translate Self-Management Support Tools Into Clinical Practice, Matthew J. Simpson, Jeanette M. Daly, Douglas H. Fernald, John M. Westfall, Leann C. Michaels, Barcey T. Levy, David L. Hahn, Lyle J. Fagnan, Donald E. Nease Jr.

Journal of Patient-Centered Research and Reviews

Purpose: Patient self-management is an inevitable part of the work of being a patient, and self-management support (SMS) has become increasingly important in chronic disease management. However, the majority of SMS resources available in the Agency for Healthcare Research and Quality SMS Resource Library were developed without explicit collaboration between clinicians and patients.

Methods: Translation of SMS tools derived from the library into primary care practices occurred utilizing boot camp translation in four different practice-based research networks (PBRNs). The typical model of boot camp translation was adapted for the purpose of the Implementing Networks’ Self-management Tools Through Engaging Patients and …

Adapting Boot Camp Translation Methods To Engage Clinician/Patient Research Teams Within Practice-Based Research Networks, Lyle J. Fagnan, Matthew J. Simpson, Jeanette M. Daly, Leann C. Michaels, David L. Hahn, Barcey T. Levy, Douglas H. Fernald, John M. Westfall, Donald E. Nease Jr.

Journal of Patient-Centered Research and Reviews

Purpose: Boot camp translation is a proven process to engage community members and health professionals in translating and disseminating evidence-based “best practices” models for health prevention and chronic illness care. Primary care practice improvement studies, particularly involving patient-driven change, as seen with self-management support (SMS), require engaged practice teams that include patients. Models of engagement such as boot camp translation may be effective.

Methods: Four geographically dispersed practice-based research networks (PBRNs) from the Meta-LARC consortium engaged 16 practices to form SMS implementation teams involving a clinician, care manager, and 2 patients in each team. Our study adapted the boot camp …

Impact Of A Boot Camp Translation Intervention On Self-Management Support In Primary Care, Donald E. Nease Jr., Jeanette M. Daly, L. Miriam Dickinson, Douglas H. Fernald, David L. Hahn, Barcey T. Levy, Leann C. Michaels, Matthew J. Simpson, John M. Westfall, Lyle J. Fagnan

Journal of Patient-Centered Research and Reviews

Purpose: Self-management support (SMS) is a pillar of the well-established chronic care model and a key component of improving outcomes for patients with chronic illnesses. The Implementing Networks’ Self-management Tools Through Engaging Patients and Practices (INSTTEPP) trial sought to determine whether a boot camp translation process could assist small to medium-sized primary care practices with care managers implement SMS tools.

Methods: INSTTEPP used a stepped-wedge design across 16 practices from 4 practice-based research networks over 12 months. Each network completed a 2-month boot camp translation for creating SMS tools with 16 participants (2 patients, a clinician, and a care manager …

Practice-Based Research Networks Ceding To A Single Institutional Review Board, Jeanette M. Daly, Tabria Weiner Harrod, Kate Judge, Leann C. Michaels, Barcey T. Levy, David L. Hahn, Lyle J. Fagnan, Donald E. Nease Jr.

Journal of Patient-Centered Research and Reviews

Historically, a single research project involving numerous practice-based research networks (PBRNs) required multiple institutional review boards (IRBs) to be involved in approval of the project. However, to avoid redundancies, federal IRB regulations now allow cooperative research projects that involve more than one institution to use reasonable methods of cooperative IRB review and to cede authority for review and oversight of the project to a single lead IRB. Through ceding, a lead IRB has the authority for review and oversight of the project delegated by all participating sites’ IRBs and becomes the IRB of record for the ceded sites. In the …

Implementing Community-Created Self-Management Support Tools In Primary Care Practices: Multimethod Analysis From The Insttepp Study, Douglas H. Fernald, Matthew J. Simpson, Donald E. Nease Jr., David L. Hahn, Amanda E. Hoffmann, Leann C. Michaels, Lyle J. Fagnan, Jeanette M. Daly, Barcey T. Levy

Journal of Patient-Centered Research and Reviews

Purpose: With one-half of Americans projected to be living with at least one chronic condition before 2020, enhancing patient self-management support (SMS) may improve health-related behaviors and clinical outcomes. Routine SMS implementation in primary care settings is difficult. Little is known about the practice conditions required for successful implementation of SMS tools.

Methods: Four primary care practice-based research networks (PBRNs) recruited 16 practices to participate in a boot camp translation process to adapt patient-centered SMS tools. Boot camp translation sessions were held over a 2-month period with 2 patients, a clinician, and a care manager from each practice. Qualitative case …

Patient Barriers For Weight Management Among African American Women, Owen Bowie, Jennifer Kusch, George L. Morris Iii, Tracy Flood, Jessica Gill, Renee E. Walker, Ron A. Cisler, Jennifer T. Fink

Journal of Patient-Centered Research and Reviews

Purpose: The primary aim of this study was to assess the perceptions of local African American women who are overweight or obese using semi-structured focus groups to identify barriers to weight management and factors that support strategy success. The secondary aim of this study was to determine recommendations for patient-centered weight management interventions established specifically for African American women in the Milwaukee-area community.

Methods: Three semi-structured focus groups to explore barriers to weight management were performed among women patients. Participants (N = 41) were recruited via email, postal mail, and phone as available from an academic medical center in Milwaukee, …

Mobile Health Technology Knowledge And Practices Among Patients Of Safety-Net Health Systems In Washington State And Washington, Dc, Sharon S. Laing, Muhammad Alsayid, Carlota Ocampo, Stacey Baugh

Journal of Patient-Centered Research and Reviews

Purpose: Mobile health technology (mHealth) can reduce health disparities, but research on the health behaviors of low-income patients is needed. This study evaluates mHealth knowledge and practices of low-resource safety-net patients.

Methods: We administered a 47-item questionnaire to 164 low-income patients accessing services at community health centers in the state of Washington and Washington, DC. Predictor variables included demographic factors: age, race, ethnicity, income. Outcome variables were smartphone knowledge (smartphones as a wellness tool), medical app knowledge (availability of medical-based apps), smartphone practices (ever used smartphones for wellness), health apps practices (ever used health-based apps), and medical apps practices (ever …

Improving Health And Well-Being: Connecting Research And Practice. The 24th Annual Conference Of The Health Care Systems Research Network, Karen L. Margolis, Nico Pronk, Jane E. Duncan, Sarah M. Greene

Journal of Patient-Centered Research and Reviews

The 24th annual conference of the Health Care Systems Research Network (HCSRN, formerly the HMO Research Network), held April 11–13, 2018, in Minneapolis, Minnesota, attracted 357 attendees. The HCSRN is a consortium of 18 community-based research organizations embedded in or affiliated with large health care delivery systems. Its annual research conference, held since 1994, is a unique venue that brings diverse stakeholders (eg, research teams, clinicians, patients, funders) together to explore a range of health research topics and scientific findings, with a unifying goal of connecting applied research to real-world care delivery for the betterment of individual and community health. …

Multiracial Patient Experiences With Racial Microaggressions In Health Care Settings, Cyndy R. Snyder, Prince Z. Wang, Anjali R. Truitt

Journal of Patient-Centered Research and Reviews

Purpose: Illuminating patients’ experiences of microaggressions in health care settings can help practitioners develop care that is more culturally responsive. While much of the literature on health care disparities focuses on minority groups generally, we sought to identify and to describe the ways in which racial microaggressions manifest for multiracial individuals and families specifically.

Methods: Using a combination of interviews and focus groups, we conducted 15 interviews and 3 focus groups. Eligible participants self-identified as more than one race and/or they self-identified as part of an interracial family, and they and/or someone they considered to be part of their family …

Racial Disparity Among Women Diagnosed With Invasive Breast Cancer In A Large Integrated Health System, Maharaj Singh, Santhi D. Konduri, George C. Bobustuc, Amin B. Kassam, Richard A. Rovin

Journal of Patient-Centered Research and Reviews

Purpose: Reasons for the well-described disparity in outcomes between African American (AA) and non-Hispanic white (NHW) women with invasive breast cancer are unclear, making it difficult to identify solutions. This study examined the effects of demographics, biomarkers, tumor characteristics, cancer stage, morphology, and treatment variables on overall and cancer-free survival in these patient populations.

Methods: We retrospectively reviewed data for 6231 patients diagnosed with invasive breast cancer throughout an integrated health system from January 2006 through March 2015. Included for analysis were 5023 NHW and 413 AA women. All category and continuous variables in the study were described in the …

'No Pink Ribbons': How Women's Lived Experiences With Breast Atypia Inform Decisions Involving Risk-Reducing Medications, Sarah L. Goff, Reva Kleppel, Grace Makari-Judson

Journal of Patient-Centered Research and Reviews

Purpose: Atypical hyperplasia (AH) is associated with a nearly 4-fold elevation of lifetime risk for breast cancer, and lobular carcinoma in situ (LCIS) is associated with a 7- to 8-fold risk. Women with AH/LCIS make numerous decisions in the course of treatment, including whether to take a risk-reducing medication, an option relatively few women pursue. We explored women’s decision-making processes through patient narratives in an effort to inform decision supports for AH/LCIS.

Methods: We conducted in-depth interviews with 20 English-speaking women with AH/LCIS and no subsequent diagnosis of invasive breast cancer who had enrolled in the Rays of Hope Center …

Use Of Urine Antigen Testing For Blastomyces In An Integrated Health System, Dennis J. Baumgardner

Journal of Patient-Centered Research and Reviews

Purpose: Blastomycosis, an endemic fungal infection, mimics many other diseases. We explored the use of Blastomyces urine antigen (BuAg), reportedly the most sensitive noninvasive test, in clinical practice and compared it to other noninvasive tests.

Methods: A total of 836 BuAg tests performed on unique patients (first test only) at one large integrated health system from June 2013 to May 2016 were retrospectively reviewed to examine test characteristics and demographic features. Of these, 100 cases from 2015, a year containing a large local blastomycosis outbreak, were randomly selected for detailed analysis.

Results: Demographics for the BuAg-tested population: mean age 54.9 …

Uncertainty And Competing Priorities In Shared Clinical Decision-Making, Dennis J. Baumgardner

Journal of Patient-Centered Research and Reviews

In this issue introduction, the editor-in-chief of Journal of Patient-Centered Research and Reviews observes that a connecting thread among the articles published therein is an element of uncertainty among patients and clinicians. Competing priorities for the patient also may be present. Several approaches to overcoming these prevalent conflicts to delivery of better health care have been proposed, the most important of which may be clinicians embracing a will to practice shared decision-making.

Challenges Of Refugee Health Care: Perspectives Of Medical Interpreters, Case Managers, And Pharmacists, Fabiana Kotovicz, Anne Getzin, Thy Vo

Journal of Patient-Centered Research and Reviews

Purpose: Our objective was to identify perceived challenges in the provision of health care for refugees from the perspective of medical interpreters, case managers, and pharmacists working with refugee patients in Milwaukee, Wisconsin.

Methods: Two 60-minute focus groups were performed exploring challenges in refugee health care using a literature-based semi-structured protocol. Focus groups were transcribed and de-identified prior to independent analysis by two of the investigators. Using a memoing-process qualitative approach, major concepts, cross-cutting themes, and subthemes were established and ultimately developed a narrative. The project protocol was approved as not human subject research by the local institutional review board. …

Imagine A World …, David A. Nelson

Journal of Patient-Centered Research and Reviews

The author and issue editor introduces the second half of Journal of Patient-Centered Research and Reviews’ two-part series on health disparities and inequities in the United States. The chasm between an ideal health care system and the current reality may appear vast, and closing it insurmountable at times, but acknowledging and working to address the many health conditions that disproportionately affect specific patient populations is one step health providers and researchers can take toward closing the gap.

The Path To Health Equity Through Multidisciplinary Collaboration, Cynthia Haq

Journal of Patient-Centered Research and Reviews

The author, a guest editor for this special issue of the Journal of Patient-Centered Research and Reviews dedicated to health disparities and inequities, comments on recent studies demonstrating poorer health outcomes among various patient populations in the United States despite its having higher spending per capita than any other nation. Noting that health inequities are defined as avoidable differences, the author encourages health professionals to work to narrow these gaps.