RESUMO
BACKGROUND: Most pediatric patients and families want clear prognostic information across the illness course. Yet when children with poor-prognosis cancer experience prolonged disease stability, uncertainty can make communication particularly challenging. In this study, we aimed to (i) assess how frequently oncologists communicate about prognosis when high-risk cancer does not progress, and (ii) describe prognostic communication patterns in the context of disease stability. PATIENTS AND METHODS: In this prospective, longitudinal, mixed-methods study, we audio-recorded serial disease re-evaluation conversations between children with poor-prognosis cancer, their families, and their primary oncologists. For this secondary analysis, we conducted content analysis across serial conversations among 16 patient-parent-oncologist triads for whom the patient's disease remained stable over the 24-month study period. RESULTS: Prognostic communication was absent in >50% of recorded conversations. Overall, it comprised only 4% of dialog time, nearly 90% of which was dialog about prognostic uncertainty; discussion of curability occurred infrequently. Three distinct patterns for prognostic communication emerged: (a) "Don't know" statements, avoiding or deferring prognostication; (b) "Worry" statements, preparing families for possible future disease progression; and (c) relief-caveat statements, celebrating disease stability while balancing positivity with caution. CONCLUSIONS: Oncologists seldom talked about prognosis with high-risk patients during periods of disease stability; yet when they did, they used thoughtful and effective strategies to prepare families for possible future disease progression. Further research is needed to better understand if, how, and when patients and families with stable disease who are high risk for future disease progression prefer to receive information about prognosis.
Assuntos
Neoplasias , Relações Médico-Paciente , Criança , Humanos , Prognóstico , Estudos Prospectivos , Comunicação , Neoplasias/terapia , Progressão da DoençaRESUMO
OBJECTIVE: The objective of this scoping review is to map the literature on how usability is considered during the design and/or evaluation of computer-based digital health technologies for family caregivers of persons with chronic progressive conditions. INTRODUCTION: Computer-based digital health technologies offer convenient alternatives for delivering interventions to caregivers of people with chronic progressive conditions. Usability is a critical component of good practice in developing and implementing health and social care technologies; however, we need to determine whether usability is incorporated in the design and/or evaluation of computer-based digital health technologies for caregivers of people with chronic progressive conditions. Within this context, a broad overview of the existing literature on usability in computer-based digital health technologies is needed. INCLUSION CRITERIA: We will include studies published from 2012 to the present that describe usability characteristics of computer-based digital health technologies targeting adult (≥18 years old) family caregivers of people with chronic progressive conditions, regardless of study design or setting. METHODS: We will use the JBI methodology for scoping reviews. We will conduct searches of MEDLINE (Ovid), PsycINFO (Ovid), CINAHL (EBSCOhost), and Web of Science Core Collection to capture eligible studies. After the results are deduplicated, 2 independent reviewers will assess each study for eligibility and extract data from the included studies. Conflicts will be resolved through discussion or with a third reviewer. Data analysis will use a textual narrative synthesis approach. REVIEW REGISTRATION: Open Science Framework osf.io/w4vk5.
Assuntos
Cuidadores , Tecnologia , Adulto , Humanos , Adolescente , Computadores , Projetos de Pesquisa , Apoio Social , Literatura de Revisão como AssuntoRESUMO
AIMS: To assess if marijuana consumption - prevalent among men of reproductive age and becoming widespread due to decriminalization - is associated with changes in semen parameters. Marijuana's active metabolite, tetrahydrocannabinol, can alter signaling pathways within spermatozoa, affecting spermatogenesis and fertility. METHODS: We prospectively evaluated semen analyses (SA) from men presenting for infertility evaluation at one institution from July 2017 to April 2018. Participants completed a reproductive health questionnaire including items regarding marijuana consumption. SA was performed in accordance with World Health Organization (WHO) 5th Edition criteria. SA parameters included volume (ml), concentration (million/ml), motility (%), progressive motility (%), and Tygerberg strict morphology (%). RESULTS: A total of 409 patients completed the questionnaire; 174 (43%) men reported marijuana use (ever-users). Current and past users comprised 71 (17%) and 103 (25%), respectively. Compared with never-users, current and past users had a significantly higher likelihood of abnormal sperm strict morphology (33.1% versus 50.7% and 53.4%, respectively; p < 0.001). However, sperm motility was more likely to be less than WHO reference values in never-users than current and past-users (38.3% versus 21.1% and 27.2%, respectively; p = 0.01). In multivariate logistic regression analyses, current use was associated with increased odds of abnormal strict morphology [odds ratio (OR) 2.15, 95% confidence interval (CI): 1.21-3.79] and semen volume less than WHO reference value (OR 2.76, 95%CI: 1.19-6.42), while odds of less than WHO reference value sperm motility were reduced (OR 0.47, 95%CI: 0.25-0.91). CONCLUSION: Marijuana use is common among men presenting for fertility evaluation, and may have a detrimental effect on semen quality, particularly morphology and volume, but may be protective against abnormal sperm motility. Large, prospective studies of both semen quality and fertility in this growing, at-risk population are warranted.