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OBJECTIVE: The purposes of this article are to detail the experience of a single-center academic institution in applying the patient-centered approach to a lung cancer screening program and to examine how this approach can expand to other aspects of follow-up imaging of lung nodules. CONCLUSION: As the practice of patient-centered radiology gains attention, diagnostic radiologists are findings new ways to become more involved in patient care. A lung cancer screening program is one opportunity for radiologists to consult with and educate patients.
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Comunicação , Detecção Precoce de Câncer , Neoplasias Pulmonares/diagnóstico por imagem , Assistência Centrada no Paciente , Relações Médico-Paciente , Tomografia Computadorizada por Raios X , Tomada de Decisões , HumanosRESUMO
BACKGROUND: Communicating results to participants is a fundamental component of community-based participatory research (CBPR). However, in environmental exposure studies this is not always practiced, partly due to ethical concerns of communicating results that have unknown clinical significance. METHODS: Growing Up Healthy was a community-based participatory research study that sought to understand the relationship between environmental exposures to phthalates and early puberty in young girls. After in-depth consultation with a Community Advisory Board, study investigators provided group summary results of phthalate exposures and related health information to the parents of study participants. Parents' comprehension and knowledge of the health information provided was then assessed through questionnaires. RESULTS: After receiving the information from the research team, responders were able to correctly answer comprehension questions about phthalate exposures in their community, were able to identify ways to reduce exposure to phthalates, and indicated plans to do so. Questionnaires revealed that parents wanted more information on phthalates, and that children's environmental health was an important concern. CONCLUSIONS: We conclude that effective communication of exposure results of unknown clinical significance to participants in environmental health studies can be achieved by providing group summary results and actionable health information. Results suggest that there was an improvement in knowledge of environmental health and in risk reduction behaviors in our study population.
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Pesquisa Participativa Baseada na Comunidade , Exposição Ambiental/análise , Comunicação em Saúde , Ácidos Ftálicos/análise , Criança , Saúde da Criança , Exposição Ambiental/efeitos adversos , Saúde Ambiental , Feminino , Humanos , Pais/psicologia , Ácidos Ftálicos/efeitos adversos , Puberdade Precoce/induzido quimicamente , Inquéritos e QuestionáriosRESUMO
As the number of personal exposure studies expands and trends favor greater openness and transparency in the health sciences, ethical issues arise around reporting back individual results for contaminants without clear health guidelines. Past research demonstrates that research participants want their results even when the health implications are not known. The experiences of researchers and institutional review boards (IRBs) in studies that have reported personal chemical exposures can provide insights about ethical and practical approaches while also revealing areas of continued uncertainty. We conducted semi-structured interviews with 17 researchers and nine IRB members from seven personal exposure studies across the United States to investigate their experiences and attitudes about the report-back process. Researchers reported multiple benefits of report-back, including increasing retention and recruitment, advancing environmental health literacy, empowering study participants to take actions to reduce exposures, encouraging shifts in government and industry practices, and helping researchers discover sources of exposure through participant consultation. Researchers also reported challenges, including maintaining ongoing contact with participants, adopting protocols for notification of high exposures to chemicals without health guidelines, developing meaningful report-back materials, and resource limitations. IRB members reported concern for potential harm to participants, such as anxiety about personal results and counterproductive behavior changes. In contrast, researchers who have conducted personal report-back in their studies said that participants did not appear overly alarmed and noted that worry can be a positive outcome to motivate action to reduce harmful exposures. While key concerns raised during the early days of report-back have been substantially resolved for scientists with report-back experience, areas of uncertainty remain. These include ethical tensions surrounding the responsibility of researchers to leverage study results and resources to assist participants in policy or community-level actions to reduce chemical exposures, and how to navigate report-back to vulnerable populations.
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Disruptores Endócrinos/efeitos adversos , Exposição Ambiental , Monitoramento Ambiental/ética , Comitês de Ética em Pesquisa , Pesquisadores , Atitude , Monitoramento Ambiental/métodos , Humanos , Estados UnidosRESUMO
BACKGROUND: Participants in health research studies typically express interest in receiving the results from the studies in which they participate. However, participants' preferences and experiences related to receiving the results are not well understood. In general, the existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations. METHODS: This study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate the results, their satisfaction with the results, and when and how they would like to receive research results from future studies. In all, 70,699 ResearchMatch registrants were notified of the study's topic. Of the 5207 registrants who requested full information about the study, 3381 respondents completed the survey. RESULTS: Approximately 33% of respondents with previous health research participation reported receiving the results. Approximately half of respondents with previous research participation reported no opportunity to request the results. However, almost all respondents said researchers should always or sometimes offer the results to participants. Respondents expressed particular interest in the results related to their (or a loved one's) health, as well as information about studies' purposes and any medical advances based on the results. In general, respondents' most preferred dissemination methods for the results were email and website postings. The least desirable dissemination methods for the results included Twitter, conference calls, and text messages. Across all the results, we compare the responses of respondents with and without previous research participation experience and those who have worked in research organizations versus those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that the results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results' information included in the survey. CONCLUSION: We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants' preferences for receiving the results. The study's findings highlight the potential for inconsistency between respondents' expressed preferences to receive specific types of results via specific methods and researchers' unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants' preferences for receiving research results.
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Atitude Frente a Saúde , Revelação , Disseminação de Informação , Preferência do Paciente , Sujeitos da Pesquisa , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Pesquisa Biomédica , Comunicação , Correio Eletrônico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto JovemRESUMO
Cancers frequently metastasize to the spine, where they can cause severe morbidity, including pain, vertebral collapse, and paralysis. Accurate assessment and timely communication of actionable imaging findings are critical. We developed a scoring mechanism to capture the key imaging features of examinations performed to detect and characterize spinal metastases in patients with cancer. An automated system was developed to relay those findings to the institution's spine oncology team to expedite treatment. This report describes the scoring scheme, the automated results communication platform, and initial clinical experience with the system. The scoring system and communication platform enable prompt, imaging-directed care of patients with spinal metastases.
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Neoplasias da Coluna Vertebral , Humanos , Neoplasias da Coluna Vertebral/diagnóstico por imagem , Neoplasias da Coluna Vertebral/terapia , Coluna Vertebral/diagnóstico por imagem , Diagnóstico por Imagem , Dor , OncologiaRESUMO
After the devastating wildfire that destroyed most of the town of Paradise, California in 2018, volatile organic compounds were found in water distribution pipes. Approximately 11 months after the fire, we collected tap water samples from 136 homes that were still standing and tested for over 100 chemicals. Each participant received a customized report showing the laboratory findings from their sample. Our goal was to communicate individual water results and chemical information rapidly in a way that was understandable, scientifically accurate, and useful to participants. On the basis of this process, we developed a framework to illustrate considerations and priorities that draw from best practices of previous environmental results return research and crisis communication, while also addressing challenges specific to the disaster context. We also conducted a follow-up survey on participants' perceptions of the results return process. In general, participants found the results return communications to be understandable, and they felt less worried about their drinking water quality after receiving the information. Over one-third of the participants reported taking some kind of action around their water usage habits after receiving their results. Communication with participants is a critical element of environmental disaster research, and it is important to have a strategy to communicate results that achieves the goals of timeliness, clarity, and scientific accuracy, ultimately empowering people toward actions that can reduce exposure.
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Desastres , Incêndios , Compostos Orgânicos Voláteis , Incêndios Florestais , Humanos , Qualidade da ÁguaRESUMO
OBJECTIVES: To translate and validate the Communication Skills Attitude Scale in the Polish language (CSAS-P) and its adaptation for use among registered nurses. DESIGN: A cross-sectional descriptive design was used in order to translate and validate the CSAS-P. The following psychometric properties of CSAS-P were evaluated: content validity (content validity index), theoretical relevance (exploratory and confirmative factor analysis), one-dimensionality of subscales (principal component analysis), internal consistency (Cronbach's α), test-retest reliability and discriminant validity. SETTING: Participants were identified and recruited from the Centre for Postgraduate Education for Nurses and Midwives in Warsaw, Poland. PARTICIPANTS: The validation group comprised 2014 registered nurses who were undertaking a spring specialisation exam in 2017. RESULTS: The overall content validity index was >0.80, which was interpreted as indicating validity. The factor structure of CSAS-P differed from the original version, and removing three items from the scale better fit the data. The positive attitude subscale (11 items) and negative attitude subscale (12 items) were characterised by one-dimensionality and high internal consistency (Cronbach's α=0.901 and 0.802, respectively). Test-retest analysis confirmed the stability of the measurement for both subscales and particular items. Nurses with prior participation in communication courses scored significantly higher than those without such education (p<0.05), confirming the discriminant validity of CSAS-P. CONCLUSIONS: The psychometric properties of CSAS-P were comparable to the English language original. Further validation of CSAS-P in other groups of healthcare professionals may increase its applicability. CSAS-P can be used to evaluate attitudes towards learning communication skills among registered nurses.
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Atitude do Pessoal de Saúde , Comunicação , Relações Interprofissionais , Relações Enfermeiro-Paciente , Enfermeiras e Enfermeiros/psicologia , Habilidades Sociais , Adulto , Estudos Transversais , Análise Fatorial , Feminino , Humanos , Masculino , Polônia , Psicometria , Reprodutibilidade dos Testes , TraduçõesRESUMO
AIM: The aim of the study was to review the clinical validation process of out of hours critical biochemistry results by a clinical biochemist and its effect on primary care services. METHODS: A prospective study was conducted of all critical results for primary care patients who were analysed out of hours. The nine-month study period was conducted between June 2013 and February 2014. The data collected include patients' age, clinical details, critical results and the urgency of result communicated. The patients' subsequent attendance rate at the emergency department in the local hospital was reviewed. RESULTS: A total of 311 out of hours critical results were identified in the laboratory. After clinical validation, 110 (35.4%) results were telephoned urgently and 155 (49.8%) results were deferred to the next day. Forty-six (14.8%) results were not telephoned. Following the urgent result communication, 53/110 (48.2%) patients attended the hospital emergency department within 24 h and 17/110 (15.5%) had their repeat blood test by their general practitioner surgery within 48 h. When the result was telephoned during working hours the next day, only 15/155 (9.7%) attended the hospital acute services within 48 h and 16/155 (10.3%) had repeat blood test at their general practitioner surgery. CONCLUSION: In our practice, the clinical validation of out of hours critical results by a clinical biochemist is associated with a reduction in the number of results telephoned when compared against the critical limits list recommended by the Royal College of Pathologists and may focus out of hours clinical activity on more suitable patients.
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Serviços de Informação , Laboratórios , Serviço Hospitalar de Emergência , Humanos , Estudos ProspectivosRESUMO
With the increasing prevalence of PACS over the past decade, face-to-face image review among health care providers has become a rarity. This change has resulted in increasing dependence on fast and accurate communication in radiology. Turnaround time expectations are now conveyed in minutes rather than hours or even days. Ideal modern radiology communication is a closed-loop cycle with multiple interoperable applications contributing to the final product. The cycle starts with physician order entry, now often performed through the electronic medical record, with clinical decision support to ensure that the most effective imaging study is ordered. Radiology reports are now almost all in electronic format. The majority are produced using speech recognition systems. Optimization of this software use can alleviate some, if not all, of the inherent user inefficiencies in this type of reporting. Integrated third-party software applications that provide data mining capability are extremely helpful in both academic and clinical settings. The closed-loop ends with automated communication of imaging results. Software products for this purpose should facilitate use of levels of alert, automated escalation to providers, and recording of audit trails of reports received. The multiple components of reporting should be completely interoperable with each other, as well as with the PACS, the RIS, and the electronic medical record. This integration will maximize radiologist efficiency and minimize the possibility of communication error.