Motivating cascade testing for familial hypercholesterolemia: applying the extended parallel process model for clinician communication

Campbell‐Salome, Gemme; Walters, Nicole; Ladd, Ilene; Sheldon, Amanda; Ahmed, Catherine D.; Brangan, Andrew; McMinn, Megan; Rahm, Alanna Kulchak; Schwartz, Marci; Tricou, Eric P.; Fisher, Carla L.; Sturm, Amy C.

doi:10.1093/tbm/ibac018

Cited by 8 publications

(4 citation statements)

References 46 publications

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“…Specifically, patients wanted to receive information that is relevant, understandable, concise, usable, appropriate, sympathetic, and available when needed and through multiple communication modes (i.e., digital technologies, print, and conversations with health care providers) [31]. Furthermore, a similar study to optimize communication with individuals with familial hypercholesterolemia found that messages stressing the health threat to relatives and their susceptibility due to heredity were important motivators for cascade testing [32]. However, a novel finding in our study was the request from probands with no living relatives for messaging showing what genetic testing could do for them.…”

Section: Discussionmentioning

confidence: 99%

Human-Centered Design Study to Inform Traceback Cascade Genetic Testing Programs at Three Integrated Health Systems

Romagnoli¹,

Rahm²,

Jonas³

et al. 2023

Public Health Genomics

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Introduction: A traceback genetic testing program for ovarian cancer has the potential to identify individuals with hereditary breast and ovarian cancer and their relatives. Successful implementation depends on understanding and addressing the experiences, barriers, and preferences of the people served. Methods: We conducted a remote, human-centered design research study of people with ovarian, fallopian tube, or peritoneal cancer (probands) and people with a family history of ovarian cancer (relatives) at three integrated health systems between May and September 2021. Participants completed activities to elicit their preferences about ovarian cancer genetic testing messaging, and to design their ideal experience receiving an invitation to participate in genetic testing. Interview data were analyzed using a rapid thematic analysis approach. Results: We interviewed 70 participants and identified five preferred experiences for a traceback program. Participants strongly prefer discussing genetic testing with their doctor but are comfortable discussing with other clinicians. The most highly preferred experience for both probands and relatives was to discuss with a knowledgeable clinician who can answer questions, followed by directed (sent directly to specific people) or passive (shared in a public area) communication. Repeated contact was acceptable for reminders. Discussion/Conclusion: Participants were open to receiving information about traceback genetic testing and recognized its value. Participants preferred discussing genetic testing with a trusted clinician. Directed communication was preferable to passive communication. Other valued information included how genetic tests help their family and the cost of genetic testing. These findings are informing traceback cascade genetic testing programs at all three sites.

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Section: Discussionmentioning

confidence: 99%

Human-Centered Design Study to Inform Traceback Cascade Genetic Testing Programs at Three Integrated Health Systems

Romagnoli¹,

Rahm²,

Jonas³

et al. 2023

Public Health Genomics

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“…Jones et al [ 64 ] conducted 5 focus groups with 42 participants, guided by the conceptual model of implementation research, that found the use of automated approaches to identify individuals with FH through the EMR and family communication methods including chatbots and direct contact was acceptable, appropriate and feasible methods to detect FH. Through 11 dyadic interviews and 98 survey respondents’, guidance of effective messaging to motivate cascade testing uptake for FH were suggested and include participants prioritizing messages from four key constructs (severity, susceptibility, response efficacy and self-efficacy), and clinicians could use these constructs to communicate to at-risk relatives about the importance of pursuing diagnosis via cascade testing and subsequent medication management approaches [ 65 ]. A forthcoming Campbell et al study reports on the optimization of these implementation strategies, which is currently undergoing peer review.…”

Section: Tailoring Implementation Strategiesmentioning

confidence: 99%

How Can Implementation Science Improve the Care of Familial Hypercholesterolaemia?

Sarkies

Jones

Pang

et al. 2023

Curr Atheroscler Rep

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Purpose of Review Describe the application of implementation science to improve the detection and management of familial hypercholesterolaemia. Recent Findings Gaps between evidence and practice, such as underutilization of genetic testing, family cascade testing, failure to achieve LDL-cholesterol goals and low levels of knowledge and awareness, have been identified through clinical registry analyses and clinician surveys. Implementation science theories, models and frameworks have been applied to assess barriers and enablers in the literature specific to local contextual factors (e.g. stages of life). The effect of implementation strategies to overcome these factors has been evaluated; for example, automated identification of individuals with FH or training and education to improve statin adherence. Clinical registries were identified as a key infrastructure to monitor, evaluate and sustain improvements in care. Summary The expansion in evidence supporting the care of familial hypercholesterolaemia requires a similar expansion of efforts to translate new knowledge into clinical practice.

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“…How does your family talk about FH?) (21,22). Before interviews, participants were asked to review three family communication strategies and share their feedback on how to (re)design these strategies during the interviews (e.g., How can we improve the family letter?…”

Section: Interviews and Surveysmentioning

confidence: 99%

Designing implementation strategies to improve identification, cascade testing, and management of families with familial hypercholesterolemia: An intervention mapping approach

Jones¹,

Calvo²,

Campbell‐Salome³

et al. 2023

Front. Health Serv.

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IntroductionFamilial hypercholesterolemia (FH) is a common inherited cholesterol disorder that, without early intervention, leads to premature cardiovascular disease. Multilevel strategies that target all components of FH care including identification, cascade testing, and management are needed to address gaps that exist in FH care. We utilized intervention mapping, a systematic implementation science approach, to identify and match strategies to existing barriers and develop programs to improve FH care.MethodsData were collected utilizing two methods: a scoping review of published literature, related to any component of FH care, and a parallel mixed method study using interviews and surveys. The scientific literature was searched using key words including “barriers” or “facilitators” and “familial hypercholesterolemia” from inception to December 1, 2021. The parallel mixed method study recruited individuals and families with FH to participate in either dyadic interviews (N = 11 dyads/22 individuals) or online surveys (N = 98 respondents). Data generated from the scoping review, dyadic interviews, and online surveys were used in the 6-step intervention mapping process. Steps 1–3 included a needs assessment, development of program outcomes and creation of evidence-based implementation strategies. Steps 4–6 included program development, implementation, and evaluation of implementation strategies.ResultsIn steps 1–3, a needs assessment found barriers to FH care included underdiagnosis of the condition which led to suboptimal management due to a myriad of determinants including knowledge gaps, negative attitudes, and risk misperceptions by individuals with FH and clinicians. Literature review highlighted barriers to FH care at the health system level, notably the relative lack of genetic testing resources and infrastructure needed to support FH diagnosis and treatment. Examples of strategies to overcome identified barriers included development of multidisciplinary care teams and educational programs. In steps 4–6, an NHLBI-funded study, the Collaborative Approach to Reach Everyone with FH (CARE-FH), deployed strategies that focused on improving identification of FH in primary care settings. The CARE-FH study is used as an example to describe program development, implementation, and evaluation techniques of implementation strategies.ConclusionThe development and deployment of evidence-based implementation strategies that address barriers to FH care are important next steps to improve identification, cascade testing, and management.

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Motivating cascade testing for familial hypercholesterolemia: applying the extended parallel process model for clinician communication

Cited by 8 publications

References 46 publications

Human-Centered Design Study to Inform Traceback Cascade Genetic Testing Programs at Three Integrated Health Systems

Human-Centered Design Study to Inform Traceback Cascade Genetic Testing Programs at Three Integrated Health Systems

How Can Implementation Science Improve the Care of Familial Hypercholesterolaemia?

Designing implementation strategies to improve identification, cascade testing, and management of families with familial hypercholesterolemia: An intervention mapping approach

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