Journal of Patient-Centered Research and Reviews最新文献

{"title":"\"Healing Can Be a Very Jagged Line\": Reflections on Life as a COVID-19 Long Hauler.","authors":"Leah M Hecht,&nbsp;Rhonda Adams,&nbsp;Danielle Dutkiewicz,&nbsp;Debbie Radloff,&nbsp;Mallory N Wales,&nbsp;Jeffory Whitmer,&nbsp;Dana Murphy,&nbsp;Sara Santarossa","doi":"10.17294/2330-0698.2000","DOIUrl":"https://doi.org/10.17294/2330-0698.2000","url":null,"abstract":"<p><p>\"Long COVID\" - a term referring to COVID-19-associated symptoms and conditions (ie, sequelae) that remain or emerge after resolution of a SARS-CoV-2 infection - is a multifaceted condition about which little is known. As part of formalized patient-engaged research at a large Midwestern health system, patient stakeholders with long COVID (N=5) wrote stories based on their lived experience, as this was their preferred format for detailing their experience with the condition. These patient stakeholders reviewed one another's stories, identified relevant quotes, and provided opportunities for elaboration. Independently, a trained researcher extracted quotes from the stories, identified themes, and wove the quotes together to share the independent, yet similar, stories. Emergent themes were that of uncertainty about the symptomatology of long COVID and its effects on patients' mental health, physical functioning, family unit, self-identity, and future outlook. Further patient-engaged research on understanding the lived experience of long COVID may serve to advance knowledge and treatment. Health care providers caring for those with long COVID can benefit from listening and validating the stories of individuals suffering from this condition.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"10 2","pages":"77-81"},"PeriodicalIF":1.7,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117531/pdf/jpcrr-10.2.77.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9387743","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the Possible Phenomenon of Viral Interference Between the Novel Coronavirus and Common Respiratory Viruses.","authors":"Spencer Deleveaux,&nbsp;Alexandria Clarke-Kregor,&nbsp;Xavier Fonseca-Fuentes,&nbsp;Essam Mekhaiel","doi":"10.17294/2330-0698.1995","DOIUrl":"https://doi.org/10.17294/2330-0698.1995","url":null,"abstract":"<p><p>At the peak of the 2021 wave of the SARS-CoV-2 alpha variant in North America, there was concern for a superimposed wave of viral respiratory infections. There was, however, an apparent shift in the usual epidemiology of these pathogens, especially during the traditional influenza season from approximately October 2020 to March 2021. This article seeks to briefly describe the epidemiology of notable respiratory pathogens during the first wave of the COVID-19 pandemic and to focus on one possible factor for the trends observed. There are many contributory elements to the observed viral trends, but in particular, we present a synopsis of the data supporting the phenomenon of viral interference in relation to the clinically relevant early variants of SARS-CoV-2 (ancestral lineage, alpha, delta, omicron). Viral interference has been implicated in previous pandemics and is currently not well characterized in the setting of the COVID-19 pandemic. It is important to understand this dynamic and its effect on the predominant variants of COVID-19 thus far so that we may appropriately consider its possible influence in patient pathology going forward.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"10 2","pages":"91-97"},"PeriodicalIF":1.7,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117529/pdf/jpcrr-10.2.91.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9387749","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patients and Families as Partners in Patient-Oriented Research: How Should They Be Compensated?","authors":"Monika Novak-Pavlic,&nbsp;Jan Willem Gorter,&nbsp;Michelle P Phoenix,&nbsp;Samantha K Micsinszki,&nbsp;Kinga Pozniak,&nbsp;Lin Li,&nbsp;Linda Nguyen,&nbsp;Alice K Soper,&nbsp;Elaine Yuen Ling Kwok,&nbsp;Jael N Bootsma,&nbsp;Francine Buchanan,&nbsp;Hanae Davis,&nbsp;Sandra Abdel Malek,&nbsp;Karen M van Meeteren,&nbsp;Peter L Rosenbaum","doi":"10.17294/2330-0698.1975","DOIUrl":"https://doi.org/10.17294/2330-0698.1975","url":null,"abstract":"<p><p>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 family partners and report how existing resources can be leveraged to compensate patient and family partners fairly and appropriately. We also present some of our first-hand experiences with patient and family compensation and offer suggestions for research leaders, agencies, and organizations so that the health care stakeholders can collectively move toward more equitable recognition of patient and family partners in research.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"10 2","pages":"82-90"},"PeriodicalIF":1.7,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117530/pdf/jpcrr-10.2.82.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9381853","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Comparison of Parental In-Person Visitation and Webcam Usage Patterns at a Single-Center Neonatal Intensive Care Unit.","authors":"Shrea Goswami,&nbsp;Emily Mudd,&nbsp;John Chuo,&nbsp;Anirudha Das","doi":"10.17294/2330-0698.1960","DOIUrl":"https://doi.org/10.17294/2330-0698.1960","url":null,"abstract":"Purpose Barriers to parents visiting the neonatal intensive care unit (NICU) in person for infant bonding include socioeconomic status, distance from NICU, and having children at home. Use of NICU bedside webcam can increase access to parent-infant interaction. This study aimed to describe the pattern of webcam logins by parents, relationship of logins to in-person visitation, and maternal factors affecting usage. Methods In this retrospective cohort study, data pertaining to parental webcam logins and in-person visitation, maternal screening for depression, anxiety, and stress, and family sociodemographics were collected from medical records. Relationships between chart variables and webcam or in-person visitation were measured using Pearson's correlation coefficient and Mann-Whitney U test, as applicable. Login data were obtained from weeks 2 through 5 of NICU stay of the infant, while depression, anxiety, and stress scores were obtained in the second week as standard procedure by a dedicated NICU social worker. Results A total of 59 mother-baby dyads were included. Percentage of days visited and webcam logins decreased from week 2 to week 5. A higher rate of webcam login was documented for all parents on days they did not visit in person. Parents who lived ≥15 miles away (P=0.004) and those with government insurance (P=0.01) visited in person significantly less, although webcam logins showed no difference between groups. One negative correlation was found between percentage of in-person visits and DASS-21 depression score (P=0.03), but no such correlation was seen with webcam logins. Conclusions Parents utilized NICU webcams to connect with their infants when unable to be at the bedside. Webcam use reduced visitation disparities known to be exacerbated by insurance status, home-to-hospital distance, and psychological distress.","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"10 1","pages":"31-37"},"PeriodicalIF":1.7,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9851393/pdf/jpcrr-10.1.31.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10586698","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding Quality of Life in Patients With Acute Leukemia, a Global Survey.","authors":"Zack Pemberton-Whiteley,&nbsp;Samantha Nier,&nbsp;Jan Geissler,&nbsp;Sophie Wintrich,&nbsp;Bregje Verhoeven,&nbsp;Rita O Christensen,&nbsp;Sam Salek,&nbsp;Esther Natalie Oliva,&nbsp;Tatyana Ionova,&nbsp;Jennie Bradley","doi":"10.17294/2330-0698.1951","DOIUrl":"https://doi.org/10.17294/2330-0698.1951","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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 relationships between HM-PRO scores and the other factors.</p><p><strong>Results: </strong>Of 552 respondents from 42 countries, 332 had acute myeloid leukemia, 139 had acute lymphoblastic leukemia, and 81 had acute promyelocytic leukemia (survey data collected in 2019). Younger age, female gender, and lower income were all significantly negatively associated with QoL. Weak or moderate correlations were observed between overall support, management, and impact of treatment and diagnosis of acute leukemia. Feeling isolated and having reduced ability to carry out physical or enjoyable activities were the most important individual factors, while the best predictors for QoL impact were age, gender, and income (model r²=0.16, complete case n=449).</p><p><strong>Conclusions: </strong>Findings indicated key factors, particularly age, gender, and socioeconomic state, that clinicians responsible for the care of patients with acute leukemia should be aware of when designing support strategies. The importance of social functioning in relation to patient QoL also should be included in considerations.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"10 1","pages":"21-30"},"PeriodicalIF":1.7,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9851391/pdf/jpcrr-10.1.21.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10586240","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Parent and Child Anxiety Evaluated During an Early Period of the COVID-19 Pandemic: A Mixed-Methods Study.","authors":"Karla M Abela, Darlene Acorda, Stanley Cron, Geri LoBiondo-Wood","doi":"10.17294/2330-0698.1950","DOIUrl":"10.17294/2330-0698.1950","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>A total of 188 parents and 140 children responded to the questionnaires. Mean overall anxiety scores for parents (49.17 [standard deviation: 12.247]) and children (35.43 [standard deviation: 7.894]) were higher than published norms. Parent and child anxiety were positively correlated (r=0.36; P=0.01). From interviews with 11 parents and 11 children; 4 major themes and 10 subthemes describing physical and emotional outcomes resulting from limited social contact, work and family role strain, and uncertainty about COVID-19 were identified.</p><p><strong>Conclusions: </strong>Parents and children reported elevated anxiety levels during the COVID-19 pandemic. Findings of this study can guide the development of strategies that mitigate the negative impact of isolation, role strain, and uncertainty related to future public health crises.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"9 4","pages":"272-281"},"PeriodicalIF":1.6,"publicationDate":"2022-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9584086/pdf/jpcrr-9.4.272.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10275669","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Heart to Heart, Mom to Mom.","authors":"Karis L Tekwani","doi":"10.17294/2330-0698.1949","DOIUrl":"https://doi.org/10.17294/2330-0698.1949","url":null,"abstract":"","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"9 3","pages":"191-192"},"PeriodicalIF":1.7,"publicationDate":"2022-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9302907/pdf/jpcrr-9.3.191.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40675671","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Can Variables From the Electronic Health Record Identify Delirium at Bedside?","authors":"Ariba Khan,&nbsp;Kayla Heslin,&nbsp;Michelle Simpson,&nbsp;Michael L Malone","doi":"10.17294/2330-0698.1890","DOIUrl":"https://doi.org/10.17294/2330-0698.1890","url":null,"abstract":"<p><p>Delirium, a common and serious disorder in older hospitalized patients, remains underrecognized. While several delirium predictive models have been developed, only a handful have focused on electronic health record (EHR) data. This prospective cohort study of older inpatients (≥65 years old) aimed to determine if variables within our health system's EHR could be used to identify delirium among hospitalized patients at the bedside. Trained researchers screened daily for delirium using the 3-minute diagnostic Confusion Assessment Method (3D-CAM). Patient demographic and clinical variables were extracted from the EHR. Among 408 participants, mean age was 75 years, 60.8% were female, and 82.6% were Black. Overall rate of delirium was 16.7%. Patients with delirium were older and more likely to have an infection diagnosis, prior dementia, higher Charlson comorbidity severity of illness score, lower Braden Scale score, and higher Morse Fall Scale score in the EHR (P<0.01 for all). On multivariable analysis, a prior diagnosis of dementia (odds ratio: 5.0, 95% CI: 2.5-10.3) and a Braden score of <18 (odds ratio: 2.8, 95% CI: 1.5-5.1) remained significantly associated with delirium among hospitalized patients. Further research in the development of an automated delirium prediction model is needed.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"9 3","pages":"174-180"},"PeriodicalIF":1.7,"publicationDate":"2022-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9302913/pdf/jpcrr-9.3.174.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40675674","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Is Home Blood Pressure Monitoring Effective at Controlling Hypertension in African American Patients? A Clin-IQ.","authors":"Rebecca Nye,&nbsp;Wilhelm Lehmann,&nbsp;Deborah Simpson","doi":"10.17294/2330-0698.1944","DOIUrl":"https://doi.org/10.17294/2330-0698.1944","url":null,"abstract":"<p><p>African Americans are disproportionately affected by hypertension, a modifiable contributor to multiple chronic diseases and premature death. Primary care physicians play an important role in hypertension control. Home blood pressure monitoring (HBPM) is an evidence-based method for confirming diagnosis and monitoring hypertension over time. Some studies have found that HBPM may lead to clinically relevant reductions in blood pressure when combined with additional interventions, but few studies have focused specifically on African American populations. Evidence of effectiveness could increase clinical recommendation of HBPM. This clinical inquiry examined whether HBPM improves blood pressure control in African Americans with uncontrolled hypertension. Reviewed studies included 4 randomized controlled trials and 2 comparative research studies. Because these studies often were coupled with various co-interventions, ascertaining the independent effects of HBPM was difficult. When examining reviews of HBPM without a co-intervention and conducted independent of race, HBPM alone was insufficient to achieve long-term changes in hypertension control. More research focused on African Americans, with use of control groups, is needed to determine the true role for HBPM in controlling hypertension in this at-risk patient population.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"9 3","pages":"185-190"},"PeriodicalIF":1.7,"publicationDate":"2022-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9302914/pdf/jpcrr-9.3.185.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40676592","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Asking the Question 'What Matters to You?' in a London Intensive Care Unit.","authors":"Harriet Pittaway,&nbsp;Laura White,&nbsp;Karen Turner,&nbsp;Angelique McGillivary","doi":"10.17294/2330-0698.1922","DOIUrl":"https://doi.org/10.17294/2330-0698.1922","url":null,"abstract":"<p><strong>Purpose: </strong>At the heart of the paradigm shift in approach to patient care from paternalism toward shared decision-making lies the international \"What Matters To You?\" (WMTY) movement. However, WMTY principles are not frequently applied to the critical care setting. The aim of this quality improvement project work was to design and integrate a tool for all patients admitted to the intensive care unit (ICU) that helped answer WMTY.</p><p><strong>Methods: </strong>Using Plan-Do-Study-Act (PDSA) methodology across 8 cycles, a multidisciplinary team designed and integrated a bedside poster into the ICU. Quantitative and qualitative data were collected via a bedside audit process on a regular basis during each of the study phases comprising PDSA cycles.</p><p><strong>Results: </strong>Project results confirmed that the introduction of this poster/tool, alongside resource- and staff engagement-focused interventions, enabled the ICU to offer more than 50% of patients a WMTY conversation, as compared to zero at the start of the project. Consistently, 100% of staff surveyed (n=46 over all cycles) felt the posters were a useful addition to the ICU and confirmed they learned something new about their patients that they didn't know already.</p><p><strong>Conclusions: </strong>This novel poster design successfully summarized patients' responses to the question \"What matters to you?\" for ICU staff and would be transferable to other ICUs.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"9 3","pages":"166-173"},"PeriodicalIF":1.7,"publicationDate":"2022-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9302912/pdf/jpcrr-9.3.166.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40675670","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}