Medicine and Health Sciences Commons^™

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 …

Parent And Child Anxiety Evaluated During An Early Period Of The Covid-19 Pandemic: A Mixed-Methods Study, Karla M. Abela, Darlene Acorda, Stanley Cron, Geri Lobiondo-Wood

Journal of Patient-Centered Research and Reviews

Purpose: The objective of this study was to explore parent and child anxiety during the pandemic. Unlike previous pandemics, measures implemented to prevent the transmission of the SARS-CoV-2 virus have been much more limiting.

Methods: An explanatory convergent mixed-methods design was used to describe anxiety of children 9–17 years of age and their parents during August–October 2020. Adult and child versions of State-Trait Anxiety Inventory (STAI) were used to examine levels as measured on STAI’s state-anxiety subscale. Web-based interviews with a subset of patients were conducted qualitatively to analyze anxiety-related themes.

Results: A total of 188 parents …

Responding To Sexual Abuse In Health Care: Development Of A Guide For Patients, Tristan Mcintosh, Heidi Walsh, Meredith Parsons, Erin D. Solomon, Jessica Mozersky, James M. Dubois

Journal of Patient-Centered Research and Reviews

This report details the development of a stakeholder- and evidence-informed online resource guide for patients that provides information to raise awareness about sexual abuse in health care, the value of chaperones, and options for responding to sexual abuse. The guide was developed to reflect lessons learned from 10 years of researching physician wrongdoing (ie, sexual violations, improper prescribing, and unnecessary invasive procedures), a 5-year National Institutes of Health-funded mixed-methods study of 280 cases of egregious wrongdoing in medicine, and an expert working group. Focus groups were conducted with 22 patients from diverse backgrounds to obtain feedback on the acceptability of …

Bridging The Patient Engagement Gap In Research And Quality Improvement Utilizing The Henry Ford Flexible Engagement Model, Heather A. Olden, Sara Santarossa, Dana Murphy, Christine C. Johnson, Karen E. Kippen

Journal of Patient-Centered Research and Reviews

Purpose: This paper was intended to share a flexible engagement model (FEM) for organizing a structure to obtain patient input regarding health care operations and research, provide greater detail on recruitment, retention, and dissemination strategies, and demonstrate successes and potential applications in other health care settings.

Methods: Utilizing a pragmatic approach, the Patient-Engaged Research Center (PERC) at Henry Ford Health System developed the FEM, a 7-step process to introduce interested patients/caregivers to the patient advisor program and to follow up with placements. PERC developed a meeting evaluation to measure participant satisfaction. Retention and dissemination methods to keep participants …

Supply, Demand, And Quality: A Three-Pronged Approach To Blood Product Management In Developing Countries, Kyle L. Gress, Karina Charipova, Ivan Urits, Omar Viswanath, Alan D. Kaye

Journal of Patient-Centered Research and Reviews

While transfusion of blood and blood products is instinctively linked to the provision of emergent care, blood and blood products are also routinely used for the treatment of subacute and chronic conditions. Despite the efforts of the World Health Organization and others, developing countries are faced with a three-part problem when it comes to access to and delivery of transfusions: insufficient supply, excessive demand, and inadequate quality of available supply. Developing countries rely heavily on replacement and remunerated donors rather than voluntary nonremunerated donors due to concerns regarding donation- and transfusion-transmitted infection as well as local and cultural beliefs. While …

Patient Recommendations For Providers To Avoid Stigmatizing Weight In Rural-Based Women With Low Income, Declan Watson, Katherine Hughes, Emma Robinson, Jacqueline Billette, Andrea E. Bombak

Journal of Patient-Centered Research and Reviews

Purpose: Weight stigma has become widespread within health care and disproportionately affects women, who are under greater appearance-based scrutiny than men. It is also well established that rural-based individuals with low incomes suffer greater health disparities compared with urban, higher-income counterparts, yet studies examining recommendations for nonstigmatizing health care among higher-weight women from low-income rural settings are lacking. This study examined the experiences and recommendations of higher-weight, low-income, rural women, with the aim of improving health care for similar populations.

Methods: In-depth, semi-structured interviews were conducted in a rural region of the Midwestern United States to explore participants’ recommendations for …

A Prospective Study Of Patterns Of Regret In The Year After Hysterectomy, Roopina Sangha, Andrew Bossick, Wan-Ting K. Su, Chad Coleman, Neha Chavali, Ganesa Wegienka

Journal of Patient-Centered Research and Reviews

Purpose: This study sought to identify patterns of self-reported regret after hysterectomy.

Methods: Women undergoing hysterectomy for a benign indication were recruited in the 2 weeks prior to surgery. Women reported demographics and completed validated questionnaires (Decisional Regret Scale, Patient Health Questionnaire-9, Decisional Conflict Scale, and the Comprehensive Score for Financial Toxicity) up to 7 times over the first year postsurgery. Medical records were reviewed for clinical and operative details. Latent class growth mixture models were applied to the repeated regret scores to identify patterns after hysterectomy. Clinical and other participant characteristics were compared across the classes.

Results: Three latent …

A History Of #Bcsm And Insights For Patient-Centered Online Interaction And Engagement, Matthew S. Katz, Alicia C. Staley, Deanna J. Attai

Journal of Patient-Centered Research and Reviews

Purpose: Participation in cancer support groups can provide a sense of community and may better prepare patients for interactions with their health care team. Online interactions may overcome some barriers to in-person support group participation. #BCSM (breast cancer social media), the first cancer support community established on Twitter, was founded in 2011 by two breast cancer survivors. The aims of this study are to describe the growth and changes in this community and to discuss future directions and lessons that may apply to other online support communities.

Methods: Symplur Signals was used to obtain all #BCSM Twitter data from January …

Action Items For Breast Cancer Awareness Month, Deanna J. Attai

Journal of Patient-Centered Research and Reviews

This special issue introduction provides a brief history of Breast Cancer Awareness Month and focuses on patient populations often omitted from annual marketing campaigns. The importance of research is emphasized as a means to improve the outcomes of people with metastatic breast cancer and male breast cancer as well as to address health care inequities related to breast cancer diagnosis and treatment.

Hiv Preexposure Prophylaxis And Treatment As Prevention — Beliefs And Access Barriers In Men Who Have Sex With Men (Msm) And Transgender Women: A Systematic Review, Joshua J. Matacotta, Francisco J. Rosales-Perez, Christian M. Carrillo

Journal of Patient-Centered Research and Reviews

Purpose: While the annual rate of new HIV infections and diagnoses has remained stable for most groups, troubling increases are seen in transgender women and racial/ethnic-minority men who have sex with men (MSM), groups that are disproportionately affected by HIV. The primary purpose of this systematic review is to examine factors that impact attitudes and beliefs about preexposure prophylaxis (PrEP) and treatment as prevention (TasP) and to explore barriers to PrEP uptake in MSM and transgender women.

Methods: Using MeSH terms and relevant keywords, we conducted a systematic review of studies published between 2010 and 2019. We searched 4 literature …

Do Adults Utilizing Intermittent Fasting Improve Lipids More Than Those Following A Restricted-Calorie Diet? A Clin-Iq, Mitchell A. Sanford, Tracy S. Sanford, K. F. Campbell, Dustin Davis, Tammy Tandberg, L. N. Eagle Road

Journal of Patient-Centered Research and Reviews

With approximately 95 million Americans diagnosed with high cholesterol, and many searching for a nonmedicinal treatment, intermittent fasting as a method to improve health has become increasingly popular in the lay public. We conducted a clinical inquiry to determine whether intermittent fasting is superior to a low-calorie diet in improving lipids, searching the Cochrane, EBSCOhost, Embase, MEDLINE, and Scopus databases using the terms intermittent fasting, lipids, and calorie-restricted diet. Studies that included surgical weight loss or medicine-assisted weight loss were excluded. We identified 6 published studies, 5 of which were randomized controlled trials. In reviewing the selected studies, …

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 …

Enhancing Immunization Rates In Two Urban Academic Primary Care Clinics: A Before And After Assessment, Zeeshan Yacoob, Christopher Cook, Fabiana Kotovicz, Jessica J.F. Kram, Marianne Klumph, Marisa Stanley, Paul Hunter, Dennis J. Baumgardner

Journal of Patient-Centered Research and Reviews

Purpose: Immunization rates in many cities in the United States remain suboptimal compared to Healthy People 2020 Goals and are lower than national averages. This study aimed to determine whether a lecture-based educational intervention targeted at nurses and medical assistants would improve vaccination rates.

Methods: We conducted a quality improvement study in two urban academic family medicine clinics serving a predominantly Medicaid patient population as well as a sizable proportion of refugees. The intervention consisted of 3 lectures that were delivered to clinic nurses and medical assistants. Vaccinations in 1689 patients — 872 in the 3-month preintervention period, 817 in …

A Letter To My Departed Niece, * Anonymous *

Journal of Patient-Centered Research and Reviews

The following piece was written in the weeks following the death of the author’s niece. It is an attempt to explore how we as a society handle health crises differently for medical versus mental health diagnoses.

Medically Tailored Meals As A Prescription For Treatment Of Food-Insecure Type 2 Diabetics, Leslie J. Rabaut

Journal of Patient-Centered Research and Reviews

Type 2 diabetes mellitus is an immense burden to the health of our population and to our current health care system, and the weight of this burden is only projected to multiply in coming years. A nutritious diet is an indispensable aspect of diabetes treatment, and the lack of access to food engenders poor disease-state control, which correlates with increased health care utilization. Interventions aimed at improving access to food through medically tailored meals (MTMs) have demonstrated effectiveness in improving the health of food-insecure type 2 diabetic patients and reducing health care costs. Further studies are necessary to increase the …

Suffering In Silence: Is Gastroparesis Underdiagnosed?, Dennis J. Baumgardner

Journal of Patient-Centered Research and Reviews

In this introduction to Volume 6, Issue 2, the editor-in-chief of the Journal of Patient-Centered Research and Reviews offers additional comment to the clinical review of diabetic gastroparesis authored by Farmer and colleagues (p. 148), regarding the problem of undiagnosed disease. Increased awareness of this entity and appropriate questioning regarding symptoms of diabetic gastroparesis in the primary care setting may prevent the “suffering in silence” experienced by many patients with this complication.

Defining Patient-Oriented Research For The Average Person (And Potential Research Partner), Dennis J. Baumgardner

Journal of Patient-Centered Research and Reviews

In this introduction to the first issue of 2019, the editor-in-chief of Journal of Patient-Centered Research and Reviews offers additional context to the findings of Kaur and Pluye (p. 7), who methodically formalized an operational definition of patient-oriented research for the purposes of searching bibliographic databases. A possible succinct, lay definition of patient-oriented research for the average “person on the street” is proposed.

Patient Perceptions Of Planned Organ Removal During Hysterectomy, Zeinab Kassem, Chad M. Coleman, Andrew S. Bossick, Wan-Ting Su, Roopina Sangha, Ganesa Wegienka

Journal of Patient-Centered Research and Reviews

Purpose: Previous reports indicate many women may not have a firm grasp on likely outcomes of different hysterectomy procedures. This study aimed to assess women’s self-reported expectations of how they think their anatomy will change after hysterectomy.

Methods: Women scheduled for hysterectomy at a tertiary care hospital, for non-oncological reasons, reported their planned procedure type and the organs they understood would be removed 2 weeks prior to surgery. Patient reports and electronic medical records were reviewed, and kappa statistics (κ) were calculated to assess agreement for all women and within subgroups.

Results: Most of the 456 study participants (mean age: …

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 …

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 …

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, …

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.

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. …

Using Clinical Decision Support Within The Electronic Health Record To Reduce Incorrect Prescribing For Acute Sinusitis, Regina Ginzburg, Justin J. Conway, Eve Waltermaurer, Wendy Song, Samantha P. Jellinek-Cohen

Journal of Patient-Centered Research and Reviews

Purpose: Acute sinusitis has viral etiology in more than 90% of cases, but antibiotics are prescribed for more than 80% of adults in the United States. While applications of computer-assisted guidelines have been found effective in reducing inaccurate prescribing for acute respiratory infections, there is a paucity of research focused specifically on the utilization of electronic best practice alerts (BPA) in improving treatment for acute sinusitis.

Methods: This observational cohort study examined prescribing behavior for sinusitis at a single Federally Qualified Health Center 1 year prior and during the first year of implementation of a BPA in the electronic health …

Identifying What Matters To Hysterectomy Patients: Postsurgery Perceptions, Beliefs, And Experiences, Andrew S. Bossick, Roopina Sangha, Heather Olden, Gwen L. Alexander, Ganesa Wegienka

Journal of Patient-Centered Research and Reviews

Purpose: Hysterectomy is the most common nonobstetrical surgery for women in the United States. Few investigations comparing hysterectomy surgical approaches include patient-centered outcomes.

Methods: The study was performed at Henry Ford Health System (Detroit, MI) between February 2015 and May 2015. A total of 1,038 eligible women — those 18 to 65 years of age and who had an electronic medical record-documented Current Procedural Terminology (CPT^®) code or an International Statistical Classification of Diseases, Ninth Edition (ICD-9) code of hysterectomy between December 2012 and December 2014 — were selected and recruited. A question guide was developed to investigate …

The Needs Of Women Treated For Ovarian Cancer: Results From A #Gyncsm Twitter Chat, Teresa Hagan Thomas, Karin Nauth-Shelley, Michael A. Thompson, Deanna J. Attai, Matthew S. Katz, David Graham, Dee Sparacio, Christina Lizaso, Audun Utengen, Don S. Dizon

Journal of Patient-Centered Research and Reviews

Purpose: Ovarian cancer is the most fatal of all gynecologic cancers, with a high relapse rate regardless of stage. Women treated for ovarian cancer, therefore, likely have supportive care needs that extend well beyond the time frame of first-line therapy. Unfortunately, there is minimal data describing these needs. The purpose of this qualitative study is to understand the supportive care needs of women with ovarian care at the end of treatment.

Methods: To better understand the issues faced by women with ovarian cancer, we conducted a public Twitter chat in collaboration with gynecologic cancer social media (#gyncsm). Both quantitative and …

Facilitating Factors And Barriers To Weight Management In Women: Physician Perspectives, Renee E. Walker, Jennifer Kusch, Jennifer T. Fink, David A. Nelson, George Morris Iii, Jessica Skalla, Ron A. Cisler

Journal of Patient-Centered Research and Reviews

Purpose: The complexity of addressing overweight and obesity in women has been an ongoing public health and health care challenge. While the mechanism for addressing overweight and obesity in women remains unclear, it has been speculated that disparities in overweight and obesity by race and gender contribute to the complexity. The purpose of the present study was to examine perceptions of primary care physicians when discussing weight management with their patients.

Methods: We conducted focus group discussions exploring facilitators and barriers to discussing weight management and weight loss among women patients. Participants included 18 family medicine and internal medicine physicians …

Six-Year Experience Of Influenza Vaccination As A Condition Of Employment For A Large Regional Health Care System, John R. Brill, Mark Hermanoff, Angela Tonozzi, Mary Jo Capodice, Jennifer Farrar, Zarina Dawoodbhai

Journal of Patient-Centered Research and Reviews

Background: Influenza remains a significant contributor to morbidity and mortality in the United States. Health care workers (HCW) can be both victims and vectors of influenza. Influenza vaccination of HCW is protective for both caregivers and patients, but voluntary programs generally fail to achieve rates recommended by the Centers for Disease Control and Prevention. Despite a complex, multifaceted influenza program initiated in 1996 that included significant education and promotion as well as free on-site vaccination, annual Aurora Health Care caregiver immunization rates remained in the mid-70s until adoption of a “condition of employment” strategy in 2011.

Purpose: Discuss the annual …

Life Expectancy At Birth In Milwaukee County: A Zip Code-Level Analysis, Erica S. Lecounte, Geoffrey R. Swain

Journal of Patient-Centered Research and Reviews

Purpose: Life expectancy at birth is used as a barometer of the health and well-being of a population. Life expectancies vary widely across Wisconsin counties. While much of the analysis of life expectancy in Wisconsin has focused on counties, there may be important differences in life expectancy within counties by zip code.

Methods: To calculate life expectancy, death count data and population estimates were entered into an abridged life table using the Chiang methodology. Data were linked with measures from the American Community Survey to examine the relationship between life expectancy and zip code characteristics.

Results: Life expectancy varies greatly …