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1.
Contemp Clin Trials Commun ; 37: 101250, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38312474

RESUMO

Efficient recruitment of eligible participants is a significant challenge for clinical research studies. This challenge was exacerbated during the COVID-19 pandemic when in-person recruitment was not an option. In 2020, the University of Minnesota was tasked, as part of the National Cancer Institute's Serological Sciences Network for COVID-19 (SeroNet), to recruit participants for a longitudinal serosurveillance clinical research study with a goal of characterizing the COVID-19 vaccine-elicited immune response among immunocompromised individuals, which necessitated reliance on non-traditional strategies for participant recruitment. To meet our enrollment target of 300 transplant patients, 300 cancer patients, 100 persons living with HIV, and 200 immunocompetent individuals, we utilized targeted electronic health record (EHR)-based recruitment in addition to traditional recruitment tools, which was an effective combination of recruitment strategies. A significant advantage of patient portal messaging or other digital recruitment strategies such as email communication is timing. We reached 85 % (769 out of 900) of our enrollment target within one year with a 14.3 % response rate to invitations to participate in our study. This achievement is perhaps more salient given the COVID-19 pandemic-related constraints within which we were operating. We demonstrated that the EHR can be leveraged to quickly identify potentially eligible study participants either via EHR communication or mail. We also illustrate how the online portal MyChart can be used to efficiently send targeted recruitment messages.

2.
BMC Med Educ ; 23(1): 805, 2023 Oct 26.
Artigo em Inglês | MEDLINE | ID: mdl-37884936

RESUMO

BACKGROUND: Developing research skills and scholarship are key components of medical education. The COVID-19 pandemic necessitated that all teaching be delivered online. We introduced an approach to small group teaching in the academic year 2020-2021 online which involved students in an active (ongoing) research study to develop their research skills. METHODS: We acquired student feedback to evaluate their perspectives quantitatively on development of research and scholarship skills, teaching content and format, and tutor performance using this teaching approach. In addition, we captured free text responses from both students and tutors on the positives and negatives of our course, and their suggested improvements. We also compared summative assessment marks for the online/active research course (2020-2021) with those obtained from previous (2017-2019) and subsequent (2021-2023) teaching sessions. RESULTS: Students were largely positive about most aspects of the online course utilising an active research study (n = 13). Students agreed that they were able to acquire research skills, particularly related to data analysis, transferable skills, and giving scientific presentations. A one-way ANOVA revealed no significant difference for assessment marks across all five teaching years (two years prior and two years following the online/active research course), indicating that the course achieved the learning outcomes. Students enjoyed the convenience of online teaching and the availability of course resources, but least liked the lack of in-person interaction and laboratory training. Tutors enjoyed the collaborative aspects of online teaching, but least liked the lack of face-to-face interactions with students. CONCLUSIONS: Our study demonstrates that delivering online teaching which involves students in active research engages and motivates them to develop their research and scholarship skills. We recommend that educators consider incorporating a current research study in their undergraduate courses as this can enhance the student learning experience as well as the research project itself.


Assuntos
Educação de Graduação em Medicina , Estudantes de Medicina , Humanos , Currículo , Pandemias , Aprendizagem , Ensino
3.
J Med Internet Res ; 25: e48529, 2023 10 06.
Artigo em Inglês | MEDLINE | ID: mdl-37801343

RESUMO

We examined the gender distribution of authors of retracted articles in 134 medical journals across 10 disciplines, compared it with the gender distribution of authors of all published articles, and found that women were underrepresented among authors of retracted articles, and, in particular, of articles retracted for misconduct.


Assuntos
Pesquisa Biomédica , Publicações Periódicas como Assunto , Má Conduta Científica , Feminino , Humanos , Plágio , Estudos Retrospectivos , Publicações
4.
Front Digit Health ; 5: 1228503, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37744686

RESUMO

Introduction: In-person dermatology clinical research studies often face recruitment and participation challenges due to travel-, time-, and cost-associated barriers. Studies incorporating virtual/asynchronous formats can potentially enhance research subject participation and satisfaction, but few mobile health tools are available to enable remote study conduct. We developed SkinTracker, a patient-facing mobile app and researcher-facing web platform, that enables longitudinal collection of skin photos, patient reported outcomes, and biometric health and environmental data. Methods: Eight design thinking sessions including dermatologists, clinical research staff, software engineers, and graphic designers were held to create the components of SkinTracker. Following iterative prototyping, SkinTracker was piloted across six adult and four pediatric subjects with atopic dermatitis (AD) of varying severity levels to test and provide feedback on SkinTracker for six months. Results: The SkinTracker app enables collection of informed consent for study participation, baseline medical history, standardized skin photographs, patient-reported outcomes (e.g., Patient Oriented Eczema Measure (POEM), Pruritus Numerical Rating Scale (NRS), Dermatology Life Quality Index (DLQI)), medication use, adverse events, voice diary to document qualitative experiences, chat function for communication with research team, environmental and biometric data such as exercise and sleep metrics through integration with an Apple Watch. The researcher web portal allows for management and visualization of subject enrollment, skin photographs for examination and severity scoring, survey completion, and other patient modules. The pilot study requested that subjects complete surveys and photographs on a weekly to monthly basis via the SkinTracker app. Afterwards, participants rated their experience in a 7-item user experience survey covering app function, design, and desire for participation in future studies using SkinTracker. Almost all subjects agreed or strongly agreed that SkinTracker enabled more convenient participation in skin research studies compared to an in-person format. Discussion: To our knowledge, SkinTracker is one of the first integrated app- and web-based platforms allowing collection and management of data commonly obtained in clinical research studies. SkinTracker enables detailed, frequent capture of data that may better reflect the fluctuating course of conditions such as AD, and can be modularly customized for different skin conditions to improve dermatologic research participation and patient access.

5.
BMC Pulm Med ; 23(1): 285, 2023 Aug 04.
Artigo em Inglês | MEDLINE | ID: mdl-37537547

RESUMO

BACKGROUND: Key to the success of any prospective cohort study is the effective recruitment and retention of participants, but the specific factors that influence younger adults of the Millennial generation to participate in research are not well-understood. The objective of this qualitative study was to identify factors that motivated participation and engagement in longitudinal research studies focused on respiratory health among a diverse group of young adults. METHODS: We conducted qualitative, semi-structured interviews with 50 younger adult participants (aged 25-35 years) regarding factors influencing their participation in longitudinal research studies. Thematic analysis was used to develop, organize, and tabulate the frequency of key themes. In exploratory analyses, we examined for patterns in the distribution of key themes across racial, ethnic, or socioeconomic groups. RESULTS: Participants identified several key themes that affected their willingness to participate in longitudinal studies. These included the health-related benefits generated by research (both to the individual and to society at-large), factors related to the institution and study team conducting the research, concerns regarding unethical and/or unrepresentative study design, and barriers to participation in research. Certain factors may be more impactful to underrepresented groups, including concerns regarding data privacy and confidentiality. CONCLUSIONS: In this diverse group of younger adults, we identified specific factors that motivated participation and predicted high engagement in longitudinal research studies focused on respiratory health. Implementing and integrating these factors into study protocols may improve recruitment and retention, including among participants who are historically underrepresented in research.


Assuntos
Projetos de Pesquisa , Adulto Jovem , Humanos , Estudos Prospectivos , Estudos Longitudinais , Pesquisa Qualitativa
6.
J Am Med Inform Assoc ; 30(12): 2028-2035, 2023 11 17.
Artigo em Inglês | MEDLINE | ID: mdl-37595575

RESUMO

OBJECTIVE: Patient portals are increasingly used to recruit patients in research studies, but communication response rates remain low without tactics such as financial incentives or manual outreach. We evaluated a new method of study enrollment by embedding a study information sheet and HIPAA authorization form (HAF) into the patient portal preCheck-in (where patients report basic information like allergies). MATERIALS AND METHODS: Eligible patients who enrolled received an after-visit patient-reported outcomes survey through the patient portal. No additional recruitment/messaging efforts were made. RESULTS: A total of 386 of 843 patients completed preCheck-in, 308 of whom signed the HAF and enrolled in the study (37% enrollment rate). Of 93 patients who were eligible to receive the after-visit survey, 45 completed it (48% completion rate). CONCLUSION: Enrollment and survey completion rates were higher than what is typically seen with recruitment by patient portal messaging, suggesting that preCheck-in recruitment can enhance research study recruitment and warrants further investigation.


Assuntos
Portais do Paciente , Estados Unidos , Humanos , Inquéritos e Questionários , Health Insurance Portability and Accountability Act , Motivação , Medidas de Resultados Relatados pelo Paciente
7.
Prim Health Care Res Dev ; 24: e46, 2023 07 12.
Artigo em Inglês | MEDLINE | ID: mdl-37435653

RESUMO

BACKGROUND: Clinical research provides evidence to underpin and inform advancements in the quality of care, services and treatments. Primary care research enables the general patient population access and opportunities to engage in research studies. Nurses play an integral role in supporting the delivery of primary care research, but there is limited understanding of nurses' experiences of this role and how they can be supported to facilitate the delivery of research. AIM: To explore the experiences of nurses delivering research studies in primary care settings. METHODS: We identified studies published between 2002 and June 2021 from key electronic databases. A two-level inclusion/exclusion and arbitration process was conducted based on study selection criteria. Data extraction and quality appraisal were performed simultaneously. Data were analysed in the form of a narrative synthesis. FINDINGS: The key themes identified included: (1) what nurses value about primary care research and their motivations for study engagement, (2) the role of nurses in research, (3) working with research teams, (4) study training, (5) eligibility screening, data collection and study documentation, (6) nurse/participant dynamic, (7) gatekeeping, (8) relationships with colleagues and impact on recruitment, (9) time constraints and workload demands, and (10) health and safety. CONCLUSIONS: Nurses are integral to the delivery of research studies in primary care settings. The review highlights the importance of good communication by study teams, timely and study-specific training, and support from colleagues to enable nurses to effectively deliver research in primary care.


Assuntos
Comunicação , Enfermeiras e Enfermeiros , Humanos , Coleta de Dados , Bases de Dados Factuais , Atenção Primária à Saúde
8.
Diabetes Ther ; 14(8): 1345-1356, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37289357

RESUMO

INTRODUCTION: There are few reports on the experiences and perceptions of people living with the rare diseases of insulin resistance syndrome or lipodystrophy. This study was designed to identify treatment experiences and perceptions of disease-related burdens among affected people, as well as their needs and priorities. We discussed how to meet identified needs and expectations, in addition to the types of therapeutic drugs and support required. METHODS: Qualitative data regarding participants' experiences and perceptions of the diseases were collected through individual interviews, advisory board meetings, and individual follow-up activities. Verbatim transcripts from recorded participants' statements were qualitatively analysed. RESULTS: Four women aged 30-41 years participated in the study, two with insulin resistance syndrome and two with lipoatrophic diabetes. The diseases not only took a heavy physical toll on these women, but they and their families were also affected psychologically, with some experiencing stigmatisation. There was a lack of information for participants about their disease and little public awareness of the disease. The needs identified include initiatives to promote an accurate understanding of these diseases, information booklets, consultation service for those affected by the diseases, less burdensome treatment options, and opportunities for peer communication. CONCLUSION: People living with insulin resistance syndrome or lipoatrophic diabetes have significant physical/psychological burdens and unmet needs. The following are highly desirable to alleviate the burdens: promoting proper understanding of the diseases; establishing a framework for dissemination of disease and treatment information to those living with the diseases; development of therapeutic drugs for these diseases; educational materials that raise public awareness; and opportunities for peer communication. TRIAL REGISTRATION: UMIN Clinical Trials Registry (UMIN000043693). A Japanese translation is available for this article.

9.
J Med Internet Res ; 25: e44587, 2023 05 22.
Artigo em Inglês | MEDLINE | ID: mdl-37213177

RESUMO

BACKGROUND: The increasing use of social media opens new opportunities for recruiting patients for research studies. However, systematic evaluations indicate that the success of social media recruitment in terms of cost-effectiveness and representativeness depends on the type of study and its purpose. OBJECTIVE: This study aims to explore the practical benefits and challenges of recruiting study participants with social media in the context of clinical and nonclinical studies and provide a summary of expert advice on how to conduct social media-based recruitment. METHODS: We conducted semistructured interviews with 6 patients with hepatitis B who use social media and 30 experts from the following disciplines: (1) social media researchers or social scientists, (2) practical experts for social media recruitment, (3) legal experts, (4) ethics committee members, and (5) clinical researchers. The interview transcripts were analyzed using thematic analysis. RESULTS: We found diverging expert opinions regarding the challenges and benefits of social media recruitment for research studies in four domains: (1) resources needed, (2) representativeness, (3) web-based community building, and (4) privacy considerations. Moreover, the interviewed experts provided practical advice on how to promote a research study via social media. CONCLUSIONS: Even though recruitment strategies should always be sensitive to individual study contexts, a multiplatform approach (recruiting via several different social media platforms) with mixed-methods recruitment (web-based and offline recruitment channels) is the most beneficial recruitment strategy for many research studies. The different recruitment methods complement each other and may contribute to improving the reach of the study, the recruitment accrual, and the representativeness of the sample. However, it is important to assess the context- and project-specific appropriateness and usefulness of social media recruitment before designing the recruitment strategy.


Assuntos
Mídias Sociais , Humanos , Seleção de Pacientes , Privacidade , Pesquisa Qualitativa
10.
J Clin Med ; 12(5)2023 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-36902866

RESUMO

Hemophilia A is a rare congenital bleeding disorder caused by a deficiency of functionally active coagulation factor VIII (FVIII). Most patients with the severe form of the disease require FVIII replacement therapies, which are often associated with the development of neutralizing antibodies against FVIII. Why some patients develop neutralizing antibodies while others do not is not fully understood. Previously, we could demonstrate that the analysis of FVIII-induced gene expression signatures in peripheral blood mononuclear cells (PBMC) obtained from patients exposed to FVIII replacement therapies provides novel insights into underlying immune mechanisms regulating the development of different populations of FVIII-specific antibodies. The aim of the study described in this manuscript was the development of training and qualification test procedures to enable local operators in different European and US clinical Hemophilia Treatment Centers (HTC) to produce reliable and valid data for antigen-induced gene expression signatures in PBMC obtained from small blood volumes. For this purpose, we used the model antigen Cytomegalovirus (CMV) phosphoprotein (pp) 65. We trained and qualified 39 local HTC operators from 15 clinical sites in Europe and the US, of whom 31 operators passed the qualification at first attempt, and eight operators passed at the second attempt.

11.
Arch Phys Med Rehabil ; 104(3): 410-417, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36167119

RESUMO

OBJECTIVE: To determine how many systematic reviews (SRs) of the literature in rehabilitation assess the certainty of evidence (CoE) and how many apply the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system to do this. DATA SOURCES: For this meta-research study, we searched PubMed and Cochrane Database of Systematic Reviews databases for SRs on rehabilitation published in 2020. STUDY SELECTION AND DATA EXTRACTION: Two reviewers independently selected the SRs and extracted the data. Reporting characteristics and appropriate use of the GRADE system were assessed. DATA SYNTHESIS: The search retrieved 827 records: 29% (239/827) SRs evaluated CoE, 68% (163/239) of which applied the GRADE system. GRADE was used by SRs of randomized controlled trials (RCTs, 88%; 144/163), non-randomized intervention studies (NRIS, 2%; 3/163), and both RCT and NRIS (10%; 16/163). In the latter case, a separate GRADE assessment according to the study design was not provided in 75% (12/16). The reasons for GRADE judgment were reported in 82% (134/163) of SRs. CONCLUSIONS: One-third of SRs in rehabilitation assessed CoE with the GRADE system. GRADE assessment was presented transparently by most SRs. Journal editors and funders should encourage the uptake of the GRADE system when considering SRs in rehabilitation for publication. The authors should pre-define GRADE assessment in a registered and/or published protocol.


Assuntos
Projetos de Pesquisa , Humanos , Revisões Sistemáticas como Assunto
12.
Artigo em Chinês | WPRIM (Pacífico Ocidental) | ID: wpr-990263

RESUMO

Objective:To explore the effect of quality improvement based on action research study to reduce unplanned interruption during continuous renal replacement therapy.Methods:From June 2020 to December 2021, 175 patients who were treated CRRT in SICU of Beijing Chaoyang Hospital Affiliated to Capital Medical University were selected as research objects. The objects were divided into control group, observation group 1 and observation group 2 according to the time of admission. Routine nursing was used in the control group (55 cases), the first cycle of plan-action-observation-reflection according to the problems of unplanned interruption was used in the observation group 1(62 cases), the quality improvement was carried out on the basis of the first cycle, and then formulated the second cycle used in the observation group 2(58 cases). The incidence of unplanned interruption of CRRT, the duration of hemofiltration line and the ability of nurses to prevent unplanned interruption of CRRT were compared before and after implementation.Results:The baseline data of CRRT patients in the three groups were comparable ( P>0.05). After cycle quality improvement, the alarm frequencies of unplanned interruption in the observation group 1 and 2 was (8.87 ± 2.66) times and (8.07 ± 2.80) times respectively, which was significant lower than the (12.04 ± 4.23) times in the control group ( t = 3.17 and 3.97, both P<0.01). The cases of coagulation filter≥Ⅱ in the observation group 1 and 2 were 25 cases and 20 cases, which were significant lower than the 32 cases in the control group ( χ2 = 3.72, 6.38, both P<0.05). The duration of blood purification line use was (15.04 ± 7.51) h and (18.16 ± 7.67) h in the observation group 1 and 2, which were significant better than the (11.75 ± 6.84) h in the control group ( t = 3.29 and 6.41, both P<0.01). The ability of nurse to prevent unplanned interruption of CRRT in the control group, the observation group 1 and 2 were (72.62 ± 6.03), (84.77 ± 5.59) and (89.64 ± 4.54), the difference was sigaificant ( F = 146.97, P<0.001). Conclusions:The application of action research study in CRRT quality improvement could reduce the occurrence of unplanned interruption of CRRT and related complications, prolong the use time of hemofiltration line, improve the therapeutic effect of CRRT, improve the quality of nursing, and is worthy of clinical promotion.

13.
Front Aging Neurosci ; 15: 1328333, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38274984

RESUMO

The prevalence of Alzheimer's disease (AD) and related dementias (ADRD) is increasing. African Americans are twice as likely to develop dementia than other ethnic populations. Traditional cognitive screening solutions lack the sensitivity to independently identify individuals at risk for cognitive decline. The DCTclock is a 3-min AI-enabled adaptation of the well-established clock drawing test. The DCTclock can estimate dementia risk for both general cognitive impairment and the presence of AD pathology. Here we performed a retrospective analysis to assess the performance of the DCTclock to estimate future conversion to ADRD in African American participants from the Rush Alzheimer's Disease Research Center Minority Aging Research Study (MARS) and African American Clinical Core (AACORE). We assessed baseline DCTclock scores in 646 participants (baseline median age = 78.0 ± 6.4, median years of education = 14.0 ± 3.2, 78% female) and found significantly lower baseline DCTclock scores in those who received a dementia diagnosis within 3 years. We also found that 16.4% of participants with a baseline DCTclock score less than 60 were significantly more likely to develop dementia in 5 years vs. those with the highest DCTclock scores (75-100). This research demonstrates the DCTclock's ability to estimate the 5-year risk of developing dementia in an African American population. Early detection of elevated dementia risk using the DCTclock could provide patients, caregivers, and clinicians opportunities to plan and intervene early to improve cognitive health trajectories. Early detection of dementia risk can also enhance participant selection in clinical trials while reducing screening costs.

14.
ATS Sch ; 3(3): 468-484, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36312813

RESUMO

Background: Despite a recent rise in publications describing extracorporeal membrane oxygenation (ECMO) education, the scope and quality of ECMO educational research and curricular assessments have not previously been evaluated. Objective: The purposes of this study are 1) to categorize published ECMO educational scholarship according to Bloom's educational domains, learner groups, and content delivery methods; 2) to assess ECMO educational scholarship quality; and 3) to identify areas of focus for future curricular development and educational research. Methods: A multidisciplinary research team conducted a scoping review of ECMO literature published between January 2009 and October 2021 using established frameworks. The Medical Education Research Study Quality Instrument (MERSQI) was applied to assess quality. Results: A total of 1,028 references were retrieved; 36 were selected for review. ECMO education studies frequently targeted the cognitive domain (78%), with 17% of studies targeting the psychomotor domain alone and 33% of studies targeting combinations of the cognitive, psychomotor, and affective domains. Thirty-three studies qualified for MERSQI scoring, with a median score of 11 (interquartile range, 4; possible range, 5-18). Simulation-based training was used in 97%, with 50% of studies targeting physicians and one other discipline. Conclusion: ECMO education frequently incorporates simulation and spans all domains of Bloom's taxonomy. Overall, MERSQI scores for ECMO education studies are similar to those for other simulation-based medical education studies. However, developing assessment tools with multisource validity evidence and conducting multienvironment studies would strengthen future work. The creation of a collaborative ECMO educational network would increase standardization and reproducibility in ECMO training, ultimately improving patient outcomes.

15.
BMC Psychiatry ; 22(1): 565, 2022 08 22.
Artigo em Inglês | MEDLINE | ID: mdl-35996121

RESUMO

BACKGROUND: Early Intervention Services (EIS) aim to reduce relapse rates and achieve better treatment and functional outcomes for first episode psychosis (FEP) patients. Existing models of services in Greece are still treatment as usual (TAU), however a reform of mental health services is underway and initial steps have been taken to shift standard care towards EIS. The purpose of the study is to address therapeutic gaps by exploring service engagement and relapse rates in the current standard care model for psychosis. METHODS: We examined follow-up and relapse rates one year after initial treatment contact in the first longitudinal FEP study conducted in Greece. 225 patients were enrolled between 2015-2020. Sociodemographic, clinical and functional characteristics were assessed in association with follow-up and relapse rates. RESULTS: Within a TAU follow-up setting, one year attrition rates were high. Only 87 patients (38,7%) retained contact with services after one year and within this time frame, 19 of them (21,8%) experienced a severe relapse requiring rehospitalization. Demographic, clinical and functional contributors failed to predict service engagement and relapse rates, with the exception of treatment adherence. CONCLUSION: Both follow-up and one-year rehospitalization rates in our FEP sample, highlight the need for the implementation of early intervention services, that will aim at engagement maximization and relapse prevention. These indexes also provide a benchmark against which future early intervention services for psychosis in Greece will have to demonstrate superior efficacy.


Assuntos
Serviços de Saúde Mental , Transtornos Psicóticos , Intervenção Médica Precoce , Grécia , Humanos , Transtornos Psicóticos/psicologia , Transtornos Psicóticos/terapia , Recidiva
16.
Oncol Nurs Forum ; 49(4): 277-278, 2022 06 17.
Artigo em Inglês | MEDLINE | ID: mdl-35788742

RESUMO

Collecting race and ethnicity data without adding SDOH measures may lead to racial existentialism, focusing on race and/or ethnicity as the source of health problems.


Assuntos
Pesquisa em Enfermagem , Determinantes Sociais da Saúde , Etnicidade , Humanos , Oncologia , Enfermagem Oncológica
17.
Stud Health Technol Inform ; 294: 440-444, 2022 May 25.
Artigo em Inglês | MEDLINE | ID: mdl-35612118

RESUMO

Clinical Trial Recruitment Support Systems can booster patient inclusion of clinical trials by automatically analyzing eligibility criteria based on electronic health records. However, missing interoperability has hindered introduction of those systems on a broader scale. Therefore, our aim was to develop a recruitment support system based on FHIR R4 and evaluate its usage and features in a cardiology department. Clinical conditions, anamnesis, examinations, allergies, medication, laboratory data and echocardiography results were imported as FHIR resources. Clinical trial information, eligibility criteria and recruitment status were recorded using the appropriate FHIR resources without extensions. Eligibility criteria linked by the logical operation "OR" were represented by using multiple FHIR Group resources for enrollment. The system was able to identify 52 of 55 patients included in four clinical trials. In conclusion, use of FHIR for defining eligibility criteria of clinical trials may facilitate interoperability and allow automatic screening for eligible patients at multiple sites of different healthcare providers in the future. Upcoming changes in FHIR should allow easier description of "OR"-linked eligibility criteria.


Assuntos
Cardiologia , Ensaios Clínicos como Assunto , Registros Eletrônicos de Saúde , Seleção de Pacientes , Atenção à Saúde , Nível Sete de Saúde , Humanos
18.
Head Neck Pathol ; 16(4): 1043-1054, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35622296

RESUMO

BACKGROUND: Salivary gland tumours (SGT) are a relatively rare group of neoplasms with a wide range of histopathological appearance and clinical features. To date, most of the epidemiological studies on salivary gland tumours are limited for a variety of reason including being out of date, extrapolated from either a single centre or country studies, or investigating either major or minor glands only. METHODS: This study aimed to mitigate these shortcomings by analysing epidemiological data including demographic, anatomical location and histological diagnoses of SGT from multiple centres across the world. The analysed data included age, gender, location and histological diagnosis from fifteen centres covering the majority of the world health organisation (WHO) geographical regions between 2006 and 2019. RESULTS: A total of 5739 cases were analysed including 65% benign and 35% malignant tumours. A slight female predilection (54%) and peak incidence between the fourth and seventh decade for both benign and malignant tumours was observed. The majority (68%) of the SGT presented in major and 32% in the minor glands. The parotid gland was the most common location (70%) for benign and minor glands (47%) for malignant tumours. Pleomorphic adenoma (70%), and Warthin's tumour (17%), were the most common benign tumours whereas mucoepidermoid carcinoma (26%) and adenoid cystic carcinoma (17%) were the most frequent malignant tumours. CONCLUSIONS: This multicentre investigation presents the largest cohort study to date analysing salivary gland tumour data from tertiary centres scattered across the globe. These findings should serve as a baseline for future studies evaluating the epidemiological landscape of these tumours.


Assuntos
Neoplasias das Glândulas Salivares , Feminino , Humanos , Estudos de Coortes , Neoplasias das Glândulas Salivares/epidemiologia
19.
Health Expect ; 25(4): 1319-1331, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35411697

RESUMO

INTRODUCTION: The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. This study sought to determine priority issues facing men with PCa, barriers and enablers to accessing care and whether health professionals (HPs) and men would support the inclusion of a patient-reported outcome (PRO) comparator tool. METHODS: We conducted four online focus groups with HPs recruited from healthcare services in Victoria, followed by seven online codesign workshops with men with PCa, recruited through the Victorian Prostate Cancer Outcomes Registry, Prostate Cancer Foundation Australia and the Cancer Council Victoria. Men were eligible to participate if they had lived experience of PCa and access to the internet. We analysed focus groups thematically. Workshops were analysed using descriptive-content analysis. RESULTS: HPs (n = 39) highlighted that men had shifting priorities over time, but noted the importance of providing information to men in lay terms to assist in treatment decision-making and side-effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO comparator tool received mixed support from HPs, with 41% (n = 16) supportive, 49% (n = 19) unsure and 10% (n = 4) not supportive. Men involved in workshops (n = 28) identified informational needs to assist in treatment decision-making and side-effect management as the top priority throughout care. Men described support groups and practice nurses as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool in a portal. CONCLUSIONS: Our findings suggest that a patient support portal should provide information in lay terms that address the shifting priorities of men with PCa. Men with PCa would welcome the development of a portal to centralize support information and a PRO comparator tool to prompt health-seeking behaviour. Future research will implement these findings in the development of a portal, and pilot and evaluate the portal within a population-based sample. PATIENT OR PUBLIC CONTRIBUTION: This project adopted a codesign approach including both men with PCa and HPs involved in PCa care. Men with PCa also formed part of the study's steering committee and consumer advisory groups. HPs were consulted in a serious of online focus groups. Subsequently, men with PCa and their support persons participated in workshops. Men with PCa were also involved in the preparation of this manuscript.


Assuntos
Pessoal de Saúde , Neoplasias da Próstata , Grupos Focais , Pesquisa sobre Serviços de Saúde , Humanos , Masculino , Neoplasias da Próstata/psicologia , Neoplasias da Próstata/terapia , Vitória
20.
J Health Care Chaplain ; 28(2): 162-178, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-32715945

RESUMO

This article presents a recently completed research project on pastors providing spiritual care within the Swedish Armed Forces. This descriptive study provides unique contextual insights of experiences from military chaplains. The purpose of the study was to describe experiences and lessons learned (wisdom) from pastors providing military spiritual care within the Swedish Armed Forces. Twelve military chaplains, ordained and employed by the Church of Sweden, were individually interviewed on different locations during the early winter of 2020. The interview data were analyzed with an inductive approach. The content was initially coded by many codes, which were subsequently organized in meaningful ways to develop overarching clusters which could serve to host the codes. The hermeneutical principle for the development of these clusters was that the codes could be understood in reference to the clusters and vice versa. The cultivation of the clusters was followed by the development of a pastoral theological model for military spiritual care within a Swedish context.


Assuntos
Militares , Assistência Religiosa , Terapias Espirituais , Clero , Humanos , Pesquisa Qualitativa , Suécia
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