Journal of Patient-Centered Research and Reviews最新文献

{"title":"Beyond the Status of Health: A Collection of Stories Representing Diverse Maternal Mental Health Perspectives.","authors":"Sara Santarossa, Ruth A Blake, Heather Buchanan, Mercedes Price, Rachael Guzzardo, Craig Guzzardo, LaKenya M Johnson, Jacobeth M Morshall, Andrea Bate, Wayne Bate, Riziki Bakari, Leah Copeland, Dana Murphy, Ashley Redding, Amy Loree","doi":"10.17294/2330-0698.2107","DOIUrl":"https://doi.org/10.17294/2330-0698.2107","url":null,"abstract":"","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"12 1","pages":"35-49"},"PeriodicalIF":1.6,"publicationDate":"2025-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11789818/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143189716","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":"Legacy of the VOICES Project: Pausing for, Listening to, and Sharing Patient Narratives.","authors":"Ryan N Heine, Gheri Terry, Aditya H Gaur","doi":"10.17294/2330-0698.2088","DOIUrl":"10.17294/2330-0698.2088","url":null,"abstract":"","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"12 1","pages":"32-34"},"PeriodicalIF":1.6,"publicationDate":"2025-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11789817/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143189728","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":"\"Ups and Downs, Joys and Sorrows\" - Assessment and Clinical Relevance of Patient Priorities in an Interdisciplinary Parkinson's Disease Clinic.","authors":"Esme D Trahairv, Allison M Allen, Sneha Mantri","doi":"10.17294/2330-0698.2078","DOIUrl":"https://doi.org/10.17294/2330-0698.2078","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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 identified through grounded theory analysis, and associations with quantitative health measures were tested with correlation analyses.</p><p><strong>Results: </strong>Common themes included participant health (eg, PD-related goals and comorbidities), non-illness identities (eg, family or community role), and the psychosocial impact of PD (eg, losing independence and uncertainty). Positive sentiments (n=73), such as motivation and optimism, were more common than negative sentiments (n=45), such as loss and fear. There was moderate concordance between worsened mental health and uncertainty (rho=0.206, p=0.02) and inverse concordance between worsened mobility and gratitude (rho=-0.174, p=0.04).</p><p><strong>Conclusions: </strong>The range of priorities that PWP want to share with their care team is more diverse than that of common provider assumptions, is correlated with clinical outcomes such as mental health and mobility, and may not be captured by existing QOL assessment tools. An open-ended, qualitative prompt should be incorporated into routine specialist care for PWP as a valuable QOL indicator.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"11 3","pages":"186-196"},"PeriodicalIF":1.6,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11493310/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502494","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":"Molecular Tumor Testing on Colorectal Adenocarcinoma Specimens in a Large Community-Based Healthcare System.","authors":"David H Kruchko, Sareena Ali, Mahbubul Hasan, Madeline Sesselmann, Imad Almanaseer, Eli D Ehrenpreis","doi":"10.17294/2330-0698.2074","DOIUrl":"https://doi.org/10.17294/2330-0698.2074","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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. Secondary endpoints included tumor location within the colon (ie, the right or left side), year of CRC diagnosis, and location of the pathologist within the Advocate Aurora Health (AAH) system. The data were collected from 2016 to 2020.</p><p><strong>Results: </strong>A total of 2469 CRC cases, reviewed by 47 pathologists practicing in five separate hospitals, were identified within the AAH system for the selected five-year time period. IHC testing was performed in 1666 of these specimens (67.5%). There was no statistical difference between CRC sidedness and IHC testing performed (p = 0.9). There were no discernible features or trends for the ordering of IHC testing among different pathologists.</p><p><strong>Conclusions: </strong>Molecular tumor testing for CRC specimens in this large community-based healthcare setting was inconsistent and below the ideal adherence rate of 100%. Secondary findings offered neither explanation nor trends in likelihood to send samples for IHC testing. Education would be beneficial for pathologists and all physicians who care for patients with CRC in community-based health care settings.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"11 3","pages":"215-221"},"PeriodicalIF":1.6,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11493306/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502509","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":"Assessing the Climate Readiness of Physician Education Leaders in Graduate Medical Education.","authors":"Deborah Simpson, Anne Getzin, Aaron A Levy, Victoria Gillet","doi":"10.17294/2330-0698.2112","DOIUrl":"https://doi.org/10.17294/2330-0698.2112","url":null,"abstract":"<p><p>Climate change affects patient health through an array of exposures, including increasing heatwaves, extreme weather events, poor air quality, and expanding vector-borne illnesses. Physicians are at the forefront of addressing the health consequences of these exposures with patients, and environmental sustainability has become a priority for health care organizations. Accordingly, climate change and health is becoming a critical area for graduate medical education (GME). As GME leaders design and drive education in residency and fellowship programs, understanding those leaders' baseline knowledge on this topic and its alignment with their organizations' priorities is an essential step in the development of climate and health education programs. A search of existing climate and health knowledge assessments revealed an array of tools, yet most had limited applicability for physicians. We systematically created a brief GME climate and health baseline assessment requiring less than 10 minutes of users' time. The assessment was administered anonymously via an online survey tool to GME leaders at three sponsoring institutions across three states within our health care system. Responses from 115 of 155 individuals (74% response rate) yielded an average 62% correct (standard deviation = 16%) and a score range of 10% to 90%. This baseline assessment identifies GME leaders' knowledge gaps about climate change and its impacts on health, the role of health care organizations in producing planet-warming pollution accelerating climate change, and the prioritization of these issues within our organization.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"11 3","pages":"231-236"},"PeriodicalIF":1.6,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11493311/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502495","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":"\"It Is What It Is\" - The Lived Experience of Women With Breast Cancer Undergoing Axillary Lymph Node Dissection.","authors":"Eva Vikhe Patil, Anna Forsberg, Carina Wennerholm, Jenny Drott","doi":"10.17294/2330-0698.2072","DOIUrl":"https://doi.org/10.17294/2330-0698.2072","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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 using a phenomenological hermeneutical method. This narrative method enabled the researchers to reinterpret the worlds of the women with BC, as reflected in the data.</p><p><strong>Results: </strong>The naïve understanding, ie, the meaning of the text as a whole, revealed that the participants were in a process of accepting and adapting to their life after ALND involving adjuvant chemotherapy and/or hormonal therapy. Thus, six main themes emerged in the thematic structural analysis illustrating the meaning of acceptance and adaptation when suffering from BC and undergoing a treatment trajectory, ie, establishing coherence, adjusting to treatment, safeguarding social belonging, re-defining oneself, feeling vulnerable, and accepting one's circumstances.</p><p><strong>Conclusions: </strong>If healthcare professionals provided structure and consistency, the women's treatment and lived experiences made sense; the women experienced more certainty, freedom, and meaningful social interactions. Uncertainty occurred when the women became lost in their own sense-making process, leading to low self-efficacy. There is a need for a paradigm shift in surgical care from viewing women with BC as anatomical constructions in need of repair to deeply understanding that they are persons with an illness who require ongoing self-management support.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"11 3","pages":"222-230"},"PeriodicalIF":1.6,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11493309/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502493","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":"Determining the Prognostic Value of Complete Blood Count Subgroup Parameters in <i>Staphylococcus aureus</i> Bacteremia.","authors":"Emily L Matthews, Thomas J Dilworth","doi":"10.17294/2330-0698.2073","DOIUrl":"https://doi.org/10.17294/2330-0698.2073","url":null,"abstract":"<p><strong>Purpose: </strong>Serum cytokine alterations are associated with increased <i>Staphylococcus aureus</i> bacteremia (SAB) mortality. Unfortunately, clinical use of these cytokines is uncommon due to limited availability and high cost. Complete blood count (CBC) with differential reflects the host immune response, and CBC subgroup parameters may have prognostic value in SAB. We sought to determine the association between CBC subgroup parameters on the day of index blood culture and 30-day all-cause mortality in SAB patients.</p><p><strong>Methods: </strong>We conducted a retrospective study of adult SAB patients with infectious diseases consultation to evaluate the discriminatory capacity of CBC subgroup parameters in predicting SAB mortality. Clinical and microbiological data were collected, including severity of illness and CBC subgroup parameters, on the day of index blood culture. The primary outcome was 30-day all-cause mortality. A multivariable logistic regression model was used to determine the association between patient-level variables and mortality.</p><p><strong>Results: </strong>A total of 119 patients were included. The overall 30-day all-cause mortality rate was 10.1%. The median neutrophil-to-lymphocyte count ratio (NLCR) among survivors was 13.6 vs 23.2 among non-survivors (p = .007). Median lymphocyte count among survivors was 0.9 x 103 cells/μL vs 0.6 x 103 cells/μL among non-survivors (p = .031). Median platelet count was higher among survivors than non-survivors (239 x 103 cells/μL vs 171 x 103 cells/μL, respectively; p = .018). All other CBC subgroup parameters were similar between the two groups. Known SAB mortality predictors, including age, were also associated with increased mortality. Lower lymphocyte count was independently associated with increased mortality (adjusted odds ratio [aOR] 0.236, 95% confidence interval [CI] 0.064-0.872), as was higher PITT bacteremia score (aOR 2.439, 95% CI 1.565-3.803).</p><p><strong>Conclusions: </strong>CBC subgroup parameters may have prognostic value in SAB. Additional study is warranted to further ascertain the prognostic value of these readily available laboratory values.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"11 3","pages":"197-203"},"PeriodicalIF":1.6,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11493308/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502496","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":"Factors Influencing Self-Wound Care Adoption in Singaporean Communities: A Cross-Sectional Survey.","authors":"Ling Jia Goh, Xiaoli Zhu","doi":"10.17294/2330-0698.2084","DOIUrl":"https://doi.org/10.17294/2330-0698.2084","url":null,"abstract":"<p><strong>Purpose: </strong>Managing wounds often requires frequent clinic visits, posing a burden on both patients and the healthcare system. Shared wound care, which encourages patients to manage dressings at home, has emerged as a potential solution. This study investigates factors influencing self-wound care adoption in Singapore.</p><p><strong>Methods: </strong>A cross-sectional survey involving 328 participants from six primary healthcare centers was conducted. The survey examined demographics, wound characteristics, and perceptions towards shared wound care using a locally validated questionnaire. Parametric tests and logistic regression were used to analyze the data.</p><p><strong>Results: </strong>Unlike older participants, younger adults valued time saved through self-care and found clinic visits inconvenient. Participants in the younger age group, those in fixed-schedule employment, and students were more likely to opt for the self-wound care program and adopt self-wound care. Strong social support (p=0.034) and wound location on the head, neck, or face were the most significant factors (p=0.023) favoring self-care. Interestingly, participants with no formal education were significantly more likely to embrace self-wound care (p=0.006 to 0.012).</p><p><strong>Conclusions: </strong>Using individual attributes to select participants for self-wound care adoption may be more effective than relying on educational level. Strong social networks and encouragement from family and community can play a crucial role in promoting self-care practices. However, the generalizability of the findings may be limited, as the study was conducted solely within a Singaporean primary healthcare setting. All the same, while wound care practices may vary across countries, the foundational concepts of wound care are universal in the world. Insights about self-wound care can therefore be valuable and informative on a global scale, not just within Singapore.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"11 3","pages":"204-214"},"PeriodicalIF":1.6,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11493307/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502508","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' Experience of Specialty Care Coordination: Survey Development and Validation.","authors":"Varsha G Vimalananda, Mark Meterko, Kailyn E Sitter, Shirley Qian, Jolie B Wormwood, B Graeme Fincke","doi":"10.17294/2330-0698.2027","DOIUrl":"10.17294/2330-0698.2027","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>We developed a draft survey based on literature review, patient interviews, adaptation of existing measures, and development of new items. Survey responses were collected via mail and online in two waves, August 2019-November 2019 and September 2020-May 2021, among patients (N=939) receiving medical specialty care and primary care in the Veterans Affairs health system. Exploratory and confirmatory factor analysis were used to assess scale structure. Multiple linear regression was used to examine the relationship of the final coordination scales to patients' overall experience of specialty care coordination.</p><p><strong>Results: </strong>A 38-item measure representing 10 factors that assess the patient's experience of coordination in specialty care among the patient, PCP, and specialist was finalized. Scales demonstrated good internal consistency reliability and, together, explained 59% of the variance in overall coordination. Analyses revealed an unexpected construct describing organization of care between patient and specialist that accounted for patient goals and preferences; this 10-item scale was named Patient-Centered Care Coordination.</p><p><strong>Conclusions: </strong>The final survey, Coordination of Specialty Care - Patient, or CSC-Patient for short, is a reliable instrument that can be used alone or with its companions (CSC-PCP, CSC-Specialist) to provide a detailed assessment of specialty care coordination and identify targets for coordination improvement.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"10 4","pages":"219-230"},"PeriodicalIF":1.7,"publicationDate":"2023-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10688916/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138477946","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":"Survey of Pediatric Critical Care Fellows on Postresuscitation Debriefing.","authors":"Nicole K Sather, Lauren E Zinns, Gillian Brennan, Lily Guo, Nadia Khan, Vinod Havalad","doi":"10.17294/2330-0698.2036","DOIUrl":"10.17294/2330-0698.2036","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>A total of 102 responses (out of a possible N of 536) were gathered from current PCCM fellows. All fellows (100%) reported participation in a medical resuscitation. Only 21% stated that debriefings occurred after every resuscitation event, and 44% did not follow a structured protocol for debriefing. While 66% reported feeling very or somewhat comfortable leading the debriefing, 19% felt either somewhat uncomfortable or very uncomfortable. A vast majority (92%) of participating fellows believed that debriefing would be helpful in improving team member performance during future resuscitations, and 92% expressed interest in learning more about debriefing.</p><p><strong>Conclusions: </strong>The majority of PCCM fellows do not receive formal training on how to lead a debriefing. Given that 74% of fellows in our study did not feel very comfortable leading a debriefing but almost universally expressed that this practice is useful for provider well-being and performance, there is a clear need for increased incorporation of debriefing training into PCCM curricula across the United States.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"10 4","pages":"247-254"},"PeriodicalIF":1.7,"publicationDate":"2023-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10688913/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138477948","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}