Development and Pilot Testing of Evidence-Based Interventions to Improve Adherence after Receiving a Genetic Result.

IF 1.3 4区 医学 Q4 GENETICS & HEREDITY Public Health Genomics Pub Date : 2024-10-17 DOI:10.1159/000541745
Anna May Baker, Jessica Goehringer, Makenzie Woltz, Katrina M Romagnoli, Gemme Campbell-Salome, Amy C Sturm, Adam H Buchanan, Marc S Williams, Alanna Kulchak Rahm
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Abstract

Introduction: Previous research indicates that population genomic screening can benefit individuals who act on the genetic results. However, there remains a significant gap between individuals receiving genetic information and acting on current risk management recommendations, prompting exploration of interventions to close this gap. This study aimed to determine the feasibility and acceptability, and conduct a pilot implementation, of existing evidence-based interventions (EBIs) for adherence to disease management for select genetic conditions among individuals ascertained through a population genomic screening program.

Methods: Surveys of and interviews with individuals who received a genomic screening result were conducted to assess barriers to guideline-recommended care and assess the acceptability of problem solving (PS) and motivational interviewing (MI) EBIs to facilitate adherence to recommendations. A Design Thinking Workshop was conducted with clinicians to co-develop a MI- and PS-based intervention that would fit with current workflows to be piloted. Post-pilot engagement sessions with implementers determined acceptability and feasibility of the MI/PS pilot program for clinical implementation and elicited proposed adaptations for improvement.

Results: PS and MI EBIs were reported to be acceptable and feasible to individuals with a result, and barriers to performing recommended management were identified. The pilot program included outreach by genetic counselors to individuals with a result, review of a checklist of barriers, and delivery of PS or MI as appropriate to facilitate care. The protocol as piloted was deemed acceptable and feasible for clinicians to deliver, with adaptations suggested.

Conclusion: These results will inform an effectiveness trial to address gaps in adherence in patients who have received actionable genomic results.

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开发和试点测试以证据为基础的干预措施,以提高收到基因检测结果后的依从性。
介绍:以往的研究表明,人群基因组筛查可使根据基因结果采取行动的个人受益。然而,在接受基因信息和根据当前风险管理建议采取行动之间仍存在巨大差距,这促使人们探索干预措施来缩小这一差距。本研究旨在确定现有循证干预措施(EBIs)的可行性和可接受性,并在通过人群基因组筛查计划确定的人群中开展试点实施,以促进他们坚持对特定遗传病进行疾病管理:方法: 对收到基因组筛查结果的个人进行了调查和访谈,以评估他们在接受指南建议的治疗时遇到的障碍,并评估问题解决(PS)和动机访谈(MI)EBIs 的可接受性,以促进对建议的遵守。与临床医生共同举办了设计思维研讨会,以共同开发基于 MI 和 PS 的干预措施,并将其与当前的工作流程相结合进行试点。试点后与实施者的接触会议确定了临床实施 MI/PS 试点计划的可接受性和可行性,并提出了改进建议:结果:据报告,PS 和 MI EBI 对于有结果的个人来说是可接受和可行的,同时也发现了执行建议管理的障碍。试点计划包括遗传咨询师对有结果的个人进行外联,审查障碍清单,并酌情提供 PS 或 MI 以促进护理。临床医生认为试点方案可以接受且可行,但建议进行调整:这些结果将为一项有效性试验提供参考,该试验旨在解决已获得可采取行动的基因组结果的患者在坚持治疗方面存在的差距。
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来源期刊
Public Health Genomics
Public Health Genomics 医学-公共卫生、环境卫生与职业卫生
CiteScore
2.90
自引率
0.00%
发文量
14
审稿时长
>12 weeks
期刊介绍: ''Public Health Genomics'' is the leading international journal focusing on the timely translation of genome-based knowledge and technologies into public health, health policies, and healthcare as a whole. This peer-reviewed journal is a bimonthly forum featuring original papers, reviews, short communications, and policy statements. It is supplemented by topic-specific issues providing a comprehensive, holistic and ''all-inclusive'' picture of the chosen subject. Multidisciplinary in scope, it combines theoretical and empirical work from a range of disciplines, notably public health, molecular and medical sciences, the humanities and social sciences. In so doing, it also takes into account rapid scientific advances from fields such as systems biology, microbiomics, epigenomics or information and communication technologies as well as the hight potential of ''big data'' for public health.
期刊最新文献
"The Biggest Struggle:" Navigating Trust and Uncertainty in Genetic Variant Interpretation. "Should I let them know I have this?": Multifaceted genetic discrimination and limited awareness of legal protections amongst individuals with hereditary cancer syndromes. Who's on your genomics research team? Consumer experiences from Australia. Development and Pilot Testing of Evidence-Based Interventions to Improve Adherence after Receiving a Genetic Result. Co-creating the experience of consent for newborn genome sequencing (The Generation Study).
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