scholarly journals Health practitioners’ perceptions of the barriers and enablers to the implementation of reproductive genetic carrier screening: A systematic review

2021 ◽  
Author(s):  
Stephanie Best ◽  
Janet Long ◽  
Tahlia Theodorou ◽  
Sarah Hatem ◽  
Rebecca Lake ◽  
...  
Keyword(s):  
Systematic Review ◽  
Carrier Screening ◽  
Barriers And Enablers ◽  
Health Practitioners ◽  
Genetic Carrier Screening

scholarly journals The Core Outcome DEvelopment for Carrier Screening (CODECS) study: protocol for development of a core outcome set

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Ebony Richardson ◽  
Alison McEwen ◽  
Toby Newton-John ◽  
Karine Manera ◽  
Chris Jacobs
Keyword(s):  
Systematic Review ◽  
Genetic Testing ◽  
Core Outcome Set ◽  
Carrier Screening ◽  
Core Outcome ◽  
The Core ◽  
Key Stakeholders ◽  
Outcome Set ◽  
Methods Of Measurement ◽  
Genetic Carrier Screening

Abstract Background Reproductive genetic carrier screening is a type of genetic testing available to those planning a pregnancy, or during their first trimester, to understand their risk of having a child with a severe genetic condition. There is a lack of consensus for ‘what to measure’ in studies on this intervention, leading to heterogeneity in choice of outcomes and methods of measurement. Such outcome heterogeneity has implications for the quality and comparability of these studies and has led to a lack of robust research evidence in the literature to inform policy and decision-making around the offer of this screening. As reproductive genetic carrier screening becomes increasingly accessible within the general population, it is timely to investigate the outcomes of this intervention. Objectives The development of a core outcome set is an established methodology to address issues with outcome heterogeneity in research. We aim to develop a core outcome set for reproductive genetic carrier screening to clarify and standardise outcomes for research and practice. Methods In accordance with guidance from the COMET (Core Outcome Measures in Effectiveness Trials) Initiative, this study will consist of five steps: (i) a systematic review of quantitative studies, using narrative synthesis to identify previously reported outcomes, their definitions, and methods of measurement; (ii) a systematic review of qualitative studies using content analysis to identify excerpts related to patient experience and perspectives that can be interpreted as outcomes; (iii) semi-structured focus groups and interviews with patients who have undertaken reproductive genetic carrier screening to identify outcomes of importance to them; (iv) Delphi survey of key stakeholders, including patients, clinicians, and researchers, to refine and prioritise the list of outcomes generated from the previous steps; and (v) a virtual consensus meeting with a purposive sample of key stakeholders to finalise the core outcome set for reporting. Discussion This protocol outlines the core outcome set development process and its novel application in the setting of genetic testing. This core outcome set will support the standardisation of outcome reporting in reproductive carrier screening research and contribute to an evolving literature on outcomes to evaluate genetic testing and genetic counselling as health interventions. COMET core outcome set registration http://www.comet-initiative.org/Studies/Details/1381.

scholarly journals The Core Outcome Development for Carrier Screening (CODECS) Study: Protocol for Development of a Core Outcome Set

2020 ◽  
Author(s):  
Ebony Joanne Richardson ◽  
Alison McEwen ◽  
Toby Newton-John ◽  
Karine Manera ◽  
Chris Jacobs
Keyword(s):  
Systematic Review ◽  
Genetic Testing ◽  
Core Outcome Set ◽  
Carrier Screening ◽  
Core Outcome ◽  
The Core ◽  
Key Stakeholders ◽  
Outcome Set ◽  
Methods Of Measurement ◽  
Genetic Carrier Screening

Abstract Background: Reproductive genetic carrier screening is a type of genetic testing available to those planning a pregnancy, or during their first trimester, to understand their risk of having a child with a severe genetic condition. There is a lack of consensus for ‘what to measure’ in studies on this intervention, leading to heterogeneity in choice of outcomes and methods of measurement. Such outcome heterogeneity has implications for the quality and comparability of these studies and has led to a lack of robust research evidence in the literature to inform policy and decision-making around the offer of this screening. As reproductive genetic carrier screening becomes increasingly accessible within the general population, it is timely to investigate the outcomes of this intervention. Objectives: The development of a core outcome set is an established methodology to address issues with outcome heterogeneity in research. We aim to develop a core outcome set for reproductive genetic carrier screening to clarify and standardise outcomes for research and practice.Methods: In accordance with guidance from the COMET (Core Outcome Measures in Effectiveness Trials) Initiative, this study will consist of five steps: i) A systematic review of quantitative studies, using narrative synthesis to identify previously reported outcomes, their definitions, and methods of measurement ii) A systematic review of qualitative studies using content analysis to identify excerpts related to patient experience and perspectives that can be interpreted as outcomes iii) Semi-structured focus groups and interviews with patients who have undertaken reproductive genetic carrier screening to identify outcomes of importance to them iv) Delphi survey of key stakeholders, including patients, clinicians, and researchers, to refine and prioritise the list of outcomes generated from the previous steps v) A virtual consensus meeting with a purposive sample of key stakeholders to finalise the core outcome set for reporting.Discussion: This protocol outlines the core outcome set development process and its novel application in the setting of genetic testing. This core outcome set will support the standardisation of outcome reporting in reproductive carrier screening research and contribute to an evolving literature on outcomes to evaluate genetic testing and genetic counselling as health interventions. COMET core outcome set registration: http://www.comet-initiative.org/Studies/Details/1381

Counseling for personal health implications identified during reproductive genetic carrier screening

2021 ◽  
Author(s):  
Samantha Gbur ◽  
Logan Mauney ◽  
Kathryn J. Gray ◽  
Louise Wilkins‐Haug ◽  
Stephanie Guseh
Keyword(s):  
Carrier Screening ◽  
Personal Health ◽  
Health Implications ◽  
Genetic Carrier Screening

scholarly journals Barriers and enablers of health system adoption of kangaroo mother care: a systematic review of caregiver perspectives

2017 ◽  
Vol 17 (1) ◽  
Author(s):  
Emily R. Smith ◽  
Ilana Bergelson ◽  
Stacie Constantian ◽  
Bina Valsangkar ◽  
Grace J. Chan
Keyword(s):  
Systematic Review ◽  
Health System ◽  
Kangaroo Mother Care ◽  
Barriers And Enablers

Barriers and Enablers to Older Indigenous People Engaging in Physical Activity—A Qualitative Systematic Review

2021 ◽  
pp. 1-13
Author(s):  
Margaret J.R. Gidgup ◽  
Marion Kickett ◽  
Tammy Weselman ◽  
Keith Hill ◽  
Julieann Coombes ◽  
...  
Keyword(s):  
Physical Activity ◽  
Systematic Review ◽  
Indigenous Peoples ◽  
Indigenous Communities ◽  
Cultural Safety ◽  
Barriers And Enablers ◽  
Qualitative Systematic Review ◽  
Physical Activity Programs ◽  
Key Barrier ◽  
Appraisal Tool

The objective of this qualitative systematic review was to synthesize all evidence to understand the barriers and enablers to older Indigenous peoples (aged 40 years and older) engaging in physical activity. Four databases were searched. Study quality was assessed from an Indigenous perspective, using an Aboriginal and Torres Strait Islander quality appraisal tool. Data were analyzed using thematic synthesis. There were 4,246 articles screened with 23 articles and one report included from over 30 Indigenous communities across four countries. Cultural Safety and Security was a key enabler, including developing physical activity programs which are led by Indigenous communities and preference Indigenous values. Colonization was a key barrier that created mistrust and uncertainty. Social Determinants of Health, including cost, were supported by successful programs, but if not addressed, were demotivators of engagement. Older Indigenous peoples identified barriers and enablers that can direct the development of sustainable, culturally appropriate physical activity programs.

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