scholarly journals Decision-Making for Prenatal Genetic Screening: How will Pregnant Women Navigate a Growing Number of Aneuploidy and Carrier Screening Options?

2021 ◽  
Author(s):  
Ruth Farrell ◽  
Madelyn Pierce ◽  
Christina Collart ◽  
Meng Yao ◽  
Marissa Coleridge ◽  
...  
Keyword(s):  
Decision Making ◽  
Genetic Screening ◽  
Healthcare Delivery ◽  
Carrier Screening ◽  
Genetic Screens ◽  
Childhood Onset ◽  
Aneuploidy Screening ◽  
Post Test ◽  
Baseline Knowledge ◽  
Reproductive Healthcare

Abstract Background: Prenatal genetic screens, including carrier screening (CS) and aneuploidy screening (AS), comprise an important component of reproductive healthcare delivery. Clinical practice guidelines emphasize the importance of informed decision-making and patient’s preferences regarding the use of these screens. Yet, it is unclear how to achieve this ideal as prenatal genetic screening options rapidly become more complex and increasingly available to patients. With increased complexity and availability of reproductive testing options, decision-support strategies are critical to prepare patients to consider AS and/or CS.Methods: A self-administered survey evaluated knowledge and decision-making preferences for expanded carrier (CS) and aneuploidy (AS) prenatal screening. The survey was administered to participants before their first prenatal visit to assess baseline decision-making needs and preference at the initiation of prenatal care. Analysis was approached as a descriptive process. Results: Participants had similar familiarity with the concepts associated with AS compared to CS; mean knowledge scores for CS was 0.59 [possible range 0.00 to 1.00] and 0.55 for AS. Participants reported preferences to learn about a range of conditions, including those with severe or mild impact, childhood-onset, and adult-onset. Decision-making preference with respect to learning about the associated disease phenotypes for the contained on AS and CS panel shifted with the complexity of the panel, with a greater preference to learn about conditions post-test compared pre-test education as panels increased from 5-100 conditions. Conclusion: Patients’ baseline knowledge of prenatal genetic screens coupled with evolving decision-making preferences presents challenges for the delivery of prenatal genetic screens. This calls for the development and implementation of innovative approaches to support pregnant patients’ decision-making commensurate with advances in prenatal genomics.

scholarly journals Decision-making for prenatal genetic screening: how will pregnant women navigate a growing number of aneuploidy and carrier screening options?

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Ruth M. Farrell ◽  
Madelyn Pierce ◽  
Christina Collart ◽  
Meng Yao ◽  
Marissa Coleridge ◽  
...  
Keyword(s):  
Decision Making ◽  
Genetic Screening ◽  
Healthcare Delivery ◽  
Carrier Screening ◽  
Genetic Screens ◽  
Childhood Onset ◽  
Aneuploidy Screening ◽  
Post Test ◽  
Baseline Knowledge ◽  
Reproductive Healthcare

Abstract Background Prenatal genetic screens, including carrier screening (CS) and aneuploidy screening (AS), comprise an important component of reproductive healthcare delivery. Clinical practice guidelines emphasize the importance of informed decision-making and patient’s preferences regarding the use of these screens. Yet, it is unclear how to achieve this ideal as prenatal genetic screening options rapidly become more complex and increasingly available to patients. With increased complexity and availability of reproductive testing options, decision-support strategies are critical to prepare patients to consider AS and/or CS. Methods A self-administered survey evaluated knowledge and decision-making preferences for expanded carrier (CS) and aneuploidy (AS) prenatal screening. The survey was administered to participants before their first prenatal visit to assess baseline decision-making needs and preference at the initiation of prenatal care. Analysis was approached as a descriptive process. Results Participants had similar familiarity with the concepts associated with AS compared to CS; mean knowledge scores for CS was 0.59 [possible range 0.00 to 1.00] and 0.55 for AS. Participants reported preferences to learn about a range of conditions, including those with severe or mild impact, childhood-onset, and adult-onset. Decision-making preference with respect to learning about the associated disease phenotypes for the contained on AS and CS panel shifted with the complexity of the panel, with a greater preference to learn about conditions post-test compared pre-test education as panels increased from 5 to 100 conditions. Conclusion Patients’ baseline knowledge of prenatal genetic screens coupled with evolving decision-making preferences presents challenges for the delivery of prenatal genetic screens. This calls for the development and implementation of innovative approaches to support pregnant patients’ decision-making commensurate with advances in prenatal genomics.

scholarly journals Couples’ experiences with expanded carrier screening: evaluation of a university hospital screening offer

2021 ◽  
Author(s):  
Ivy van Dijke ◽  
Phillis Lakeman ◽  
Naoual Sabiri ◽  
Hanna Rusticus ◽  
Cecile P. E. Ottenheim ◽  
...  
Keyword(s):  
High Risk ◽  
Medical Center ◽  
Informed Choice ◽  
Carrier Screening ◽  
University Hospital ◽  
Structured Interviews ◽  
Expanded Carrier Screening ◽  
Post Test ◽  
Future Child ◽  
Clinically Significant

AbstractPreconception carrier screening offers couples the possibility to receive information about the risk of having a child with a recessive disorder. Since 2016, an expanded carrier screening (ECS) test for 50 severe autosomal recessive disorders has been available at Amsterdam Medical Center, a Dutch university hospital. This mixed-methods study evaluated the experiences of couples that participated in the carrier screening offer, including high-risk participants, as well as participants with a general population risk. All participants received genetic counselling, and pre- (n = 132) and post-test (n = 86) questionnaires and semi-structured interviews (n = 16) were administered. The most important reason to have ECS was to spare a future child a life with a severe disorder (47%). The majority of survey respondents made an informed decision (86%), as assessed by the Multidimensional Measure of Informed Choice. Among the 86 respondents, 27 individual carriers and no new carrier couples were identified. Turn-around time of the test results was considered too long and costs were perceived as too high. Overall, mean levels of anxiety were not clinically elevated. High-risk respondents (n = 89) and pregnant respondents (n = 13) experienced higher levels of anxiety before testing, which decreased after receiving the test result. Although not clinically significant, distress was on average higher for carriers compared to non-carriers (p < 0.0001). All respondents would opt for the test again, and 80.2% would recommend it to others. The results suggest that ECS should ideally be offered before pregnancy, to minimise anxiety. This study could inform current and future implementation initiatives of preconception ECS.

The acceptability and safety of video triage for ambulance service patients and clinicians during the COVID-19 pandemic

2021 ◽  
Vol 6 (2) ◽  
pp. 49-58
Author(s):  
Fiona Bell ◽  
Richard Pilbery ◽  
Rob Connell ◽  
Dean Fletcher ◽  
Tracy Leatherland ◽  
...  
Keyword(s):  
Decision Making ◽  
Healthcare Delivery ◽  
Pilot Project ◽  
Service Evaluation ◽  
Ambulance Service ◽  
Telephone Triage ◽  
Video Technology ◽  
Clinician Satisfaction ◽  
Technical Issues

Introduction: In response to anticipated challenges with urgent and emergency healthcare delivery during the early part of the COVID-19 pandemic, Yorkshire Ambulance Service NHS Trust introduced video technology to supplement remote triage and ‘hear and treat’ consultations as a pilot project in the EOC. We conducted a service evaluation with the aim of investigating patient and staff acceptability of video triage, and the safety of the decision-making process.Methods: This service evaluation utilised a mixture of routine and bespoke data collection. We sent postal surveys to patients who were recipients of a video triage, and clinicians who were involved in the video triage pilot logged calls they attempted and undertook.Results: Between 27 March and 25 August 2020, clinicians documented 1073 triage calls. A successful video triage call was achieved in 641 (59.7%) cases. Clinical staff reported that video triage improved clinical assessment and decision making compared to telephone alone, and found the technology accessible for patients. Patients who received a video triage call and responded to the survey (40/201, 19.9%) were also satisfied with the technology and with the care they received. Callers receiving video triage that ended with a disposition of ‘hear and treat’ had a lower rate of re-contacting the service within 24 hours compared to callers that received clinical hub telephone triage alone (16/212, 7.5% vs. 2508/14349, 17.5% respectively).Conclusion: In this single NHS Ambulance Trust evaluation, the use of video triage for low-acuity calls appeared to be safe, with low rates of re-contact and high levels of patient and clinician satisfaction compared to standard telephone triage. However, video triage is not always appropriate for or acceptable to patients and technical issues were not uncommon.

scholarly journals Perceptions of Decision-making in Accessing Reproductive Healthcare Services of Urban Women

2019 ◽  
Vol 14 (1) ◽  
pp. 15-20
Author(s):  
Md Mahbubur Rahman ◽  
Taniza Tabassum ◽  
Md Shafiqur Rahman ◽  
Abu Noman Mohammed Mosleh Uddin ◽  
Mushtaq Ahmad ◽  
...  
Keyword(s):  
Decision Making ◽  
Reproductive Health ◽  
Health Services ◽  
Antenatal Care ◽  
Family Size ◽  
Urban Women ◽  
Healthcare Services ◽  
Reproductive Health Services ◽  
The Family ◽  
Reproductive Healthcare

Introduction:  Women’s healthcare during the reproductive period of life, especially decisions involving her own health is generally one of the least concerns to the common people. Women’s autonomy in decision-making within the family is fairly debatable and determines the health service seeking behaviour. Objective: To find out the perceptions about key persons involved in decision-making for accessing reproductive healthcare services as well as factors that influence those decisions among urban women of Bangladesh. Materials and Methods: The study was conducted by key informant interviewing (KII) of 72 respondents about their perceptions of decision-making in women’s reproductive health services in Dhaka South City Corporation during the period of January 2019 to April 2019. Health professionals of various levels, administrators, family heads were selected as key informants by purposive sampling method. An open-ended semi-structured questionnaire was used for data collection. Result: Among the key informants, more than half were doctors (58.3%). The majority of the respondents were female (72%) and having educational qualification up to graduate level (40.3%). Majority of the informants (73.9%) mentioned ‘both parents’ as key persons in under 18 marriage of their daughters; 57.1% of respondents opined that ‘Factors like social environment, social status, uncertainty to find better groom, dowry etc.’ influences in decision-making. All of the respondents felt antenatal care ‘essential’ and about half of them (50.0%) mentioned the importance of complication detection and treatment during pregnancy. According to the respondents, ‘mother-in-law’ is the key person in women’s decision-making regarding antenatal care (65.3%) and ‘husband’ is the key person regarding selection of the place of delivery and postnatal care (79.2%, 72.2%) respectively. Half of the respondents (50%) expressed the family size determination in an urban area is done mutually by ‘both partners’ while the role of the ‘husband’ is still perceived important (41.7%). Majority expressed that economic condition of the family (63.9%) have an influence in determining family size by the respondents. According to more than half of the respondents (52.8%), both partners take part in decision-making regarding family planning. Conclusion: Although the educated employed women enjoy some degree of autonomy in urban areas of Bangladesh, the decision-making in accessing woman’s reproductive healthcare services is directed by the husband. Involvement of both partners in decision-making is essential for better utilization of reproductive health services. Journal of Armed Forces Medical College Bangladesh Vol.14(1) 2018: 15-20

EFFECTIVENESS OF TEACHING METHODS IN ENHANCING THE KNOWLEDGE REGARDING REPRODUCTIVE HEALTH OF EARLY MARRIED WOMEN OF SLUM

2021 ◽  
pp. 55-57
Author(s):  
Priyanka Tripathi ◽  
Neetu Singh
Keyword(s):  
Reproductive Health ◽  
Teaching Methods ◽  
Married Women ◽  
Health It ◽  
Interview Schedule ◽  
Test Study ◽  
Post Test ◽  
Baseline Knowledge ◽  
Didactic Lecture ◽  
Child Brides

Background: The incidences of child marriage are more associated with the socio economical factors. Though it is more prevalent in rural area but the migrants are coming from the villages to the cities and tend to live in the slums which are cheaper, lack basic amenities, unhygienic and prone to numerous ill health. Child brides face serious reproductive health outcomes due to low knowledge of reproductive matter. Hence, by providing the information regarding menstruation, family planning and RTI/ STI and reproductive right the risks of reproductive health may be reduced. Objective: To know the effectiveness of the teaching methods to improve the knowledge of reproductive health. Material And Method: Longitudinal, non-experimental pre and post test study was conducted among 115 young women of slum who were married before 18 years. Purposive random sampling was applied to select the study subjects. Interview schedule was used to collect the data for the study. The information of reproductive health was provided by didactic lecture, participatory and individual methods. Paired 't' test was used to evaluate the effectiveness of the teaching methods. The overall baseline knowledge regarding reproductive health Result: of the participants was encreased by the intervention. It was observed that there is a signicant value change (p=<0.001) in knowledge of reproductive health. It can be Conclusion: concluded that the if the scientic information will be provided to the women it will enhance the knowledge as well as the healthy practices of reproductive health of women.

PP35 The acceptability and safety of video triage for ambulance service patients and clinicians during the covid-19 pandemic: a service evaluation

2021 ◽  
Vol 38 (9) ◽  
pp. A15.1-A15
Author(s):  
Fiona Bell ◽  
Richard Pilbery ◽  
Rob Connell ◽  
Dean Fletcher ◽  
Tracy Leatherland ◽  
...  
Keyword(s):  
Decision Making ◽  
Healthcare Delivery ◽  
Pilot Project ◽  
Service Evaluation ◽  
Ambulance Service ◽  
Telephone Triage ◽  
Emergency Operations ◽  
Clinical Support ◽  
Clinician Satisfaction ◽  
Technical Issues

IntroductionIn response to anticipated challenges with urgent and emergency healthcare delivery during the early part of the COVID-19 pandemic, Yorkshire Ambulance Service NHS Trust (YAS) introduced video call technology to supplement remote triage and ‘hear and treat’ consultations as a pilot project in the Emergency Operations Centre (EOC). We aimed to investigate patient and staff acceptability of video triage, and the safety of the decision-making process.MethodsThis service evaluation utilised a mixture of routine 999 call and bespoke data collection from participating clinicians who logged calls they both attempted and undertook. We sent postal surveys to a group of patients who were recipients of a video triage.ResultsBetween 27th March 2020 and 25th August 2020 clinicians documented 1073 video triage calls. A successful video triage call was achieved in 641 (59.7%) of cases. Clinical staff reported that video triage improved clinical assessment and decision making compared to telephone alone, and found the technology accessible for patients. Patients who received a video triage call and responded to the survey (40/201, 19.9%) viewed the technology, the ambulance staff and the care planning favourably.Callers receiving video triage that ended with a disposition of ‘hear and treat’, had a lower rate of re-contacting the service within 24 hours compared to callers that received clinical support desk telephone triage alone (16/212, 7.5% vs 2508/14349, 17.5% respectively.)ConclusionIn this single NHS Ambulance Trust evaluation, the use of video triage for low acuity calls appeared to be safe, with low rates of recontact and high levels of patient and clinician satisfaction compared to standard telephone triage. However, video triage is not always appropriate or acceptable to patients and technical issues were not uncommon.

Innovating Healthcare through Remote Monitoring

2017 ◽  
pp. 247-268
Author(s):  
Faustina Acheampong ◽  
Vivian Vimarlund
Keyword(s):  
Decision Making ◽  
Business Model ◽  
Remote Monitoring ◽  
Clinical Decision Making ◽  
Healthcare Delivery ◽  
Work Processes ◽  
Home Based ◽  
Patient Health ◽  
The Government ◽  
Remote Patient

Information technology has been suggested to improve patient health outcomes and reduce healthcare cost. This study explored the business model and effects of collaborative innovation between caregivers and patients on healthcare delivery through remote patient monitoring by interviewing caregivers and surveying atrial fibrillation patients. Findings indicate that remote monitoring enhanced early detection of potential risks and quality of clinical decision-making with patients feeling more empowered and involved in their own care. The remote monitoring system which consisted of a home-based ECG and a web-based service and was offered free to patients, brought together caregivers, patients, service provider and the government as actors. The introduction of remote monitoring increased the workload of caregivers and facilitation of timely diagnostics and decision-making were not realized. IT is an enabler of innovation in healthcare, but it must be integrated into work processes with a viable business model to realize potential benefits and sustain it.

The Administrative Policy Quandary in Canada's Health Service Organizations

2018 ◽  
pp. 334-353
Author(s):  
Grace I. Paterson ◽  
Jacqueline M. MacDonald ◽  
Naomi Nonnekes Mensink
Keyword(s):  
Decision Making ◽  
Health Policy ◽  
Health Service ◽  
Policy Development ◽  
Healthcare Delivery ◽  
Service Organizations ◽  
Administrative Policy ◽  
Canadian Health ◽  
Integrated Policy ◽  
Health Service Organizations

This chapter examines the process for administrative health service policy development with respect to information sharing and decision-making as well as the relationship of policy to decision making. The challenges experienced by health service managers are identified. The administrative health policy experience in Nova Scotia is described. There is a need for integrated policy at multiple levels (public, clinical, and administrative). The quandary is that while working to share health information systems, most Canadian health service organizations continue to individually develop administrative health policy, expending more resources on policy writing than on translation/education, monitoring, or evaluation. By exploring the importance and nature of administrative policy as a foundation for quality improvement in healthcare delivery, a case is made for greater use of health informatics tools and processes.

scholarly journals Integrating Diverse Disciplines to Enhance Interprofessional Competency in Healthcare Delivery

Healthcare ◽  
2019 ◽  
Vol 7 (2) ◽  
pp. 75 ◽  
Author(s):  
Tiffany Champagne-Langabeer ◽  
Lee Revere ◽  
Mariya Tankimovich ◽  
Erica Yu ◽  
Robert Spears ◽  
...  
Keyword(s):  
Public Health ◽  
Interprofessional Education ◽  
Role Models ◽  
Healthcare Delivery ◽  
Standardized Patients ◽  
Patient Centered ◽  
Faculty Role ◽  
Interprofessional Teamwork ◽  
Post Test ◽  
Clinical Simulations

Interprofessional education (IPE) typically involves clinical simulation exercises with students from medical and nursing schools. Yet, healthcare requires patient-centered teams that include diverse disciplines. Students from public health and informatics are rarely incorporated into IPE, signaling a gap in current educational practices. In this study, we integrated students from administrative and non-clinical disciplines into traditional clinical simulations and measured the effect on communication and teamwork. From July 2017–July 2018, 408 students from five schools (medicine, nursing, dentistry, public health, and informatics) participated in one of eight three-hour IPE clinical simulations with Standardized Patients and electronic health record technologies. Data were gathered using a pre-test–post-test interventional Interprofessional Collaborative Competency Attainment Survey (ICCAS) and through qualitative evaluations from Standardized Patients. Of the total 408 students, 386 (94.6%) had matched pre- and post-test results from the surveys. There was a 15.9% improvement in collaboration overall between the pre- and post-tests. ICCAS competencies showed improvements in teamwork, communication, collaboration, and conflict management, with an average change from 5.26 to 6.10 (t = 35.16; p < 0.001). We found by creating new clinical simulations with additional roles for non-clinical professionals, student learners were able to observe and learn interprofessional teamwork from each other and from faculty role models.

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