Journal of Patient-Centered Research and Reviews最新文献

{"title":"Monitoring and Evaluation of Patient Engagement in Health Product Research and Development: Co-Creating a Framework for Community Advisory Boards.","authors":"Sevgi E Fruytier, Lidewij Eva Vat, Rob Camp, François Houÿez, Hilde De Keyser, Denise Dunne, Davide Marchi, Laura McKeaveney, Richard H Pitt, Carina A C M Pittens, Meagan F Vaughn, Elena Zhuravleva, Tjerk Jan Schuitmaker-Warnaar","doi":"10.17294/2330-0698.1859","DOIUrl":"10.17294/2330-0698.1859","url":null,"abstract":"<p><strong>Purpose: </strong>While patient engagement is becoming more customary in developing health products, its monitoring and evaluation to understand processes and enhance impact are challenging. This article describes a patient engagement monitoring and evaluation (PEME) framework, co-created and tailored to the context of community advisory boards (CABs) for rare diseases in Europe. It can be used to stimulate learning and evaluate impacts of engagement activities.</p><p><strong>Methods: </strong>A participatory approach was used in which data collection and analysis were iterative. The process was based on the principles of interactive learning and action and guided by the PEME framework. Data were collected via document analysis, reflection sessions, a questionnaire, and a workshop.</p><p><strong>Results: </strong>The tailored framework consists of a theory of change model with metrics explaining how CABs can reach their objectives. Of 61 identified metrics, 17 metrics for monitoring the patient engagement process and short-term outcomes were selected, and a \"menu\" for evaluating long-term impacts was created. Example metrics include \"Industry representatives' understanding of patients' unmet needs;\" \"Feeling of trust between stakeholders;\" and \"Feeling of preparedness.\" \"Alignment of research programs with patients' needs\" was the highest-ranked metric for long-term impact.</p><p><strong>Conclusions: </strong>Findings suggest that process and short-term outcome metrics could be standardized across CABs, whereas long-term impact metrics may need to be tailored to the collaboration from a proposed menu. Accordingly, we recommend that others adapt and refine the PEME framework as appropriate. The next steps include implementing and testing the evaluation framework to stimulate learning and share impacts.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"9 1","pages":"46-57"},"PeriodicalIF":1.7,"publicationDate":"2022-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8772604/pdf/jpcrr-9.1.46.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39883068","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":"Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome.","authors":"Jessica Ezzell Hunter,&nbsp;Jennifer L Schneider,&nbsp;Alison J Firemark,&nbsp;James V Davis,&nbsp;Sara Gille,&nbsp;Pamala A Pawloski,&nbsp;Su-Ying Liang,&nbsp;Victoria Schlieder,&nbsp;Alanna Kulchak Rahm","doi":"10.17294/2330-0698.1945","DOIUrl":"https://doi.org/10.17294/2330-0698.1945","url":null,"abstract":"<p><strong>Purpose: </strong>Genetic information has health implications for patients and their biological relatives. Death of a patient before sharing a genetic diagnosis with at-risk relatives is a missed opportunity to provide important information that could guide interventions to minimize cancer-related morbidity and mortality in relatives.</p><p><strong>Methods: </strong>We performed semi-structured interviews with individuals diagnosed with Lynch syndrome at 1 of 4 health systems to explore their perspectives on whether health systems should share genetic risk information with relatives following a patient's death. An inductive, open-coding approach was used to analyze audio-recorded content, with software-generated code reports undergoing iterative comparative analysis by a qualitative research team to identify broad themes and representative participant quotes.</p><p><strong>Results: </strong>Among 23 participating interviewees, 19 supported health systems informing relatives about their Lynch syndrome risk while the remaining 4 were conflicted about patient privacy. Most (n=22) wanted their Lynch syndrome diagnosis shared with relatives if they were unable to share and to be informed of their own risk if a diagnosed relative was unable to share. The most common issues noted regarding information-sharing with relatives included patient privacy and privacy laws (n=8), potential anxiety (n=5), and lack of contact information for relatives (n=3). Interviewee perspectives on how health systems could communicate genetic findings generated a consensus: When - a few months after but within a year of the patient's death; How - explanatory letter and follow-up phone call; and Who - a knowledgeable professional.</p><p><strong>Conclusions: </strong>Interviews demonstrated strong and consistent perspectives from individuals diagnosed with Lynch syndrome that health systems have a role and responsibility to inform relatives of genetic findings following a patient's death.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"9 4","pages":"282-289"},"PeriodicalIF":1.7,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9584081/pdf/jpcrr-9.4.282.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10669786","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":"Patient Perceptions of Using Clinical Decision Support for Cancer Screening and Prevention: \"I wouldn't have thought about getting screened without it.\"","authors":"Daniel M Saman, Melissa L Harry, Laura A Freitag, Clayton I Allen, Patrick J O'Connor, JoAnn M Sperl-Hillen, Joseph A Bianco, Anjali R Truitt, Heidi L Ekstrom, Thomas E Elliott","doi":"10.17294/2330-0698.1863","DOIUrl":"10.17294/2330-0698.1863","url":null,"abstract":"<p><strong>Purpose: </strong>We sought to gain an understanding of cancer prevention and screening perspectives among patients exposed to a clinical decision support (CDS) tool because they were due or overdue for certain cancer screenings or prevention.</p><p><strong>Methods: </strong>Semi-structured qualitative interviews were conducted with 37 adult patients due or overdue for cancer prevention services in 10 primary care clinics within the same health system. Data were thematically segmented and coded using qualitative content analysis.</p><p><strong>Results: </strong>We identified three themes: 1) The CDS tool had more strengths than weaknesses, with areas for improvement; 2) Many facilitators and barriers to cancer prevention and screening exist; and 3) Discussions and decision-making varied by type of cancer prevention and screening. Almost all participants made positive comments regarding the CDS. Some participants learned new information, reporting the CDS helped them make a decision they otherwise would not have made. Participants who used the tool with their provider had higher self-reported rates of deciding to be screened than those who did not.</p><p><strong>Conclusions: </strong>Learning about patients' perceptions of a CDS tool may increase understanding of how patient-tailored CDS impacts cancer screening and prevention rates. Participants found a personalized CDS tool for cancer screening and prevention in primary care useful and a welcome addition to their visit. However, many providers were not using the tool with eligible patients.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"8 4","pages":"297-306"},"PeriodicalIF":1.7,"publicationDate":"2021-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8530236/pdf/jpcrr-8.4.297.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39580551","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":"Conference Proceedings: Select Abstracts Presented at 2021 Advocate Aurora Health Scientific Day","authors":"","doi":"10.17294/2330-0698.1920","DOIUrl":"https://doi.org/10.17294/2330-0698.1920","url":null,"abstract":"","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":" ","pages":""},"PeriodicalIF":1.7,"publicationDate":"2021-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48986574","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient-Centered Home Cancer Screening Attitudes During COVID-19 Pandemic.","authors":"Christelle El Khoury,&nbsp;Elizabeth Haro,&nbsp;Martha Alves,&nbsp;Marie Claire O'Dwyer,&nbsp;Kate Meixner,&nbsp;Laura Crespo Albiac,&nbsp;J Nicoll Capizzano,&nbsp;Manasi Ramakrishnan,&nbsp;Cullen Salada,&nbsp;Sherri Sheinfeld Gorin,&nbsp;Masahito Jimbo,&nbsp;Ananda Sen,&nbsp;Diane M Harper","doi":"10.17294/2330-0698.1835","DOIUrl":"https://doi.org/10.17294/2330-0698.1835","url":null,"abstract":"<p><p>The COVID-19 pandemic disrupted health care delivery of cancer screenings. The primary aim of our work was to evaluate the degree to which populations were accepting of home-based screenings for colorectal cancer (CRC) and cervical cancer (ie, primary human papillomavirus [HPV] testing). Three groups of adults having distinct health burdens that may affect acceptance of home-based cancer screening were identified through outpatient electronic medical records: those having survived a COVID-19 hospitalization; those having been positive for a non-COVID-19 respiratory illness; or those having type 2 diabetes. A total of 132 respondents (58% female) completed an online survey with hypothetical cases about their acceptance of home-based CRC or cervical cancer screening. Among women respondents, urine and vaginal screening for primary HPV testing was acceptable to 64% and 59%, respectively. Among both men and women, at-home CRC screening with fecal immunochemical test or Cologuard^® was acceptable to 60% of the respondents. When adjusting for education, women with a positive attitude toward home-based urine and vaginal screening were 49 times and 23 times more likely, respectively, to have a positive attitude toward CRC screening. These findings indicate that home-based cancer screens for CRC and primary HPV testing are acceptable to men and women and may allow for greater compliance with screening in the future.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"8 4","pages":"340-346"},"PeriodicalIF":1.7,"publicationDate":"2021-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8530243/pdf/jpcrr-8.4.340.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39580485","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":"Communication Skills Training: A Means to Promote Time-Efficient Patient-Centered Communication in Clinical Practice.","authors":"Else Dalsgaard Iversen,&nbsp;Maiken Wolderslund,&nbsp;Poul-Erik Kofoed,&nbsp;Pål Gulbrandsen,&nbsp;Helle Poulsen,&nbsp;Søren Cold,&nbsp;Jette Ammentorp","doi":"10.17294/2330-0698.1782","DOIUrl":"https://doi.org/10.17294/2330-0698.1782","url":null,"abstract":"<p><strong>Purpose: </strong>We hypothesized that health care providers would behave in a more patient-centered manner after the implementation of communication skills training, without causing the consultation to last longer.</p><p><strong>Methods: </strong>This study was part of the large-scale implementation of a communication skills training program called \"Clear-Cut Communication With Patients\" at Lillebaelt Hospital in Denmark. Audio recordings from real-life consultations were collected in a pre-post design, with health care providers' participation in communication skills training as the intervention. The training was based on the Calgary-Cambridge Guide, and audio recordings were rated using the Observation Scheme-12.</p><p><strong>Results: </strong>Health care providers improved their communication behavior in favor of being more patient-centered. Results were tested using a mixed-effect model and showed significant differences between pre- and postintervention assessments, with a coefficient of 1.3 (95% Cl: 0.35-2.3; P=0.01) for the overall score. The consultations did not last longer after the training.</p><p><strong>Conclusions: </strong>Health care providers improved their communication in patient consultations after the implementation of a large-scale patient-centered communication skills training program based on the Calgary-Cambridge Guide. This did not affect the length of the consultations.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"8 4","pages":"307-314"},"PeriodicalIF":1.7,"publicationDate":"2021-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8530232/pdf/jpcrr-8.4.307.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39580552","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":"Impact of COVID-19 on Screening Rates for Colorectal, Breast, and Cervical Cancer: Practice Feedback From a Quality Improvement Project in Primary Care.","authors":"Laura A Schad, Laura A Brady, Laurene M Tumiel-Berhalter, Alexandrea Bentham, Karen Vitale, Amanda Norton, Gary Noronha, Carlos Swanger, Christopher P Morley","doi":"10.17294/2330-0698.1856","DOIUrl":"10.17294/2330-0698.1856","url":null,"abstract":"<p><strong>Purpose: </strong>Three New York State practice-based research networks provided quality improvement strategies to improve screening rates for breast, cervical, and colorectal (BCC) cancers in safety-net primary care, over 7 years. In the final year (Y7), the United States experienced the COVID-19 pandemic. The impact of the COVID-19 pandemic on BCC cancer screening rates was assessed qualitatively.</p><p><strong>Methods: </strong>A total of 12 primary care practices participated in Y7 of the quality improvement project. BCC cancer screening rates at year beginning and end were assessed. Practice staff were asked about how COVID-19 impacted screening. Average pre/postintervention screening rates and qualitative thematic analysis regarding how COVID-19 impacted cancer screening were ascertained.</p><p><strong>Results: </strong>In Y7, there was an increase in breast cancer and a decrease in colorectal and cervical cancer screening rates compared to the previous project year. Many practices were able to continue pre-COVID-19 cancer screening processes. Overall, practices reported loss of staff, changes in data entry, and a shift from preventive screening to care of sick patients. Telehealth was vital for practices to continue serving patients but had a less positive impact on patients with financial/technological disadvantages. BCC cancer screenings were impacted at various levels.</p><p><strong>Conclusions: </strong>The COVID-19 pandemic negatively impacted primary care practice cancer screening; however, some practices were able to mitigate effects by shifting focus to processes supporting screening outside of in-person office visits.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"8 4","pages":"347-353"},"PeriodicalIF":1.7,"publicationDate":"2021-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8530237/pdf/jpcrr-8.4.347.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39580486","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":"Increasing Breast, Cervical, and Colorectal Cancer Screenings: A Qualitative Assessment of Barriers and Promoters in Safety-Net Practices.","authors":"Laura A Brady, Laurene M Tumiel-Berhalter, Laura A Schad, Alexandrea Bentham, Karen Vitale, Amanda Norton, Gary Noronha, Carlos Swanger, Christopher P Morley","doi":"10.17294/2330-0698.1857","DOIUrl":"10.17294/2330-0698.1857","url":null,"abstract":"<p><strong>Purpose: </strong>Breast, cervical, and colorectal cancer screening rates are suboptimal in underserved populations. A 7-year quality improvement (QI) project implemented academic detailing and practice facilitation in safety-net primary care practices to increase cancer screening rates. This manuscript assesses barriers and promoters.</p><p><strong>Methods: </strong>Primary care practices providing care to underserved patients were recruited in New York cities Buffalo, Rochester, and Syracuse. Enrollment totaled 31 practices, with 12 practices participating throughout. Annually, each practice received 6 months of practice facilitation support for development and implementation of evidence-based interventions to increase screening rates for the three cancer types. At the end of each practice facilitation period, focus groups and key informant interviews were conducted with participating personnel. Content analysis was performed annually to identify barriers and promoters. A comprehensive final analysis was performed at project end.</p><p><strong>Results: </strong>Barriers included system-level (inconsistent communication with specialists, electronic health record system transitions, ownership changes) and practice-level challenges (staff turnover, inconsistent data entry, QI fatigue) that compound patient-level challenges of transportation, cost, and health literacy. Cyclical barriers like staff turnover returned despite attempts to resolve them, while successful implementation was promoted by reducing patients' structural barriers, adapting interventions to existing practice priorities, and enacting officewide policies. During the QI project, practices became aware of the impact of social determinants of health on patients' screening decisions.</p><p><strong>Conclusions: </strong>The project's longitudinal design enabled identification of key barriers that reduced accuracy of practices' screening rates and increased risk of patients falling through the cracks. Identified promoters can help sustain interventions to increase screenings.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"8 4","pages":"323-330"},"PeriodicalIF":1.7,"publicationDate":"2021-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8530240/pdf/jpcrr-8.4.323.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39580554","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":"Patient and Clinician Characteristics That Predict Breast Cancer Screening Behavior in 40-49-Year-Old Women.","authors":"Sarina Schrager,&nbsp;Claudia Evaristo,&nbsp;Terry Little,&nbsp;Lori DuBenske,&nbsp;Elizabeth S Burnside","doi":"10.17294/2330-0698.1814","DOIUrl":"https://doi.org/10.17294/2330-0698.1814","url":null,"abstract":"<p><p>Guidelines recommend that clinicians practice shared decision-making (SDM) with women in their 40s to discuss breast cancer screening. Traditionally, SDM includes discussion of values and preferences to help determine a decision that is congruent with what the patient desires. We analyzed 54 women's breast cancer screening decisions after a SDM conversation with their clinician. We looked at both patient and clinician characteristics that predicted whether or not a woman would get a screening mammogram. Women with a family history of breast cancer or who had a previous abnormal mammogram had higher rates of screening. Screening rates also varied widely between clinicians, raising the question of whether clinician attitudes impacted the SDM conversation.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"8 4","pages":"331-335"},"PeriodicalIF":1.7,"publicationDate":"2021-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8530238/pdf/jpcrr-8.4.331.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39580555","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":"Refining a Postpandemic Approach to Cancer Screening.","authors":"Michael A Thompson","doi":"10.17294/2330-0698.1913","DOIUrl":"10.17294/2330-0698.1913","url":null,"abstract":"","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"8 4","pages":"295-296"},"PeriodicalIF":1.7,"publicationDate":"2021-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8530233/pdf/jpcrr-8.4.295.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39580549","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}