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Article: Alternate delivery models for genetic counseling: clinical and implementation considerations.

Rahm, Alanna Kulchak

2019 Volume 26, Issue 5 Suppl 2, Page(s) 42–43

Abstract: The demand for genetic counseling services and the need for alternate service delivery models to meet this demand in cancer care is continually growing. Models exist, however, there is little evidence on which models work best for which individuals or ... ...

Abstract	The demand for genetic counseling services and the need for alternate service delivery models to meet this demand in cancer care is continually growing. Models exist, however, there is little evidence on which models work best for which individuals or healthcare systems. Implementation science offers the tools to address this gap and evaluate such models in context for broader impact to integrate these models into cancer care delivery.
MeSH term(s)	Genetic Counseling/methods ; Humans ; Models, Theoretical ; Neoplasms/genetics
Language	English
Publishing date	2019-10-15
Publishing country	Canada
Document type	Journal Article
ZDB-ID	2064475-9
ISSN	1195-9479
ISSN	1195-9479
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Article ; Online: Clinical stakeholders' perceptions of patient engagement in outpatient medication treatment for opioid use disorder: A qualitative study.

Poulsen, Melissa N / Roe, Sophie A / Asdell, Patrick B / Rahm, Alanna Kulchak / Berrettini, Wade

Journal of substance use and addiction treatment

2023 Volume 158, Page(s) 209250

Abstract: Introduction: Medications for opioid use disorder (MOUD) reduce risk of opioid overdose and promote recovery from opioid use disorder, but poor retention in MOUD limits these positive effects. This study explored patient engagement in MOUD from the ... ...

Abstract	Introduction: Medications for opioid use disorder (MOUD) reduce risk of opioid overdose and promote recovery from opioid use disorder, but poor retention in MOUD limits these positive effects. This study explored patient engagement in MOUD from the perspective of clinical stakeholders within an outpatient addiction medicine program to identify program factors influencing patient engagement with treatment. Methods: We conducted a qualitative case study of a multi-clinic outpatient addiction medicine program embedded within an integrated health system that serves a geographically diverse area of Pennsylvania. Collectively, the program's clinics provide MOUD (primarily buprenorphine) to ~2000 patients annually. From January to March 2021, we conducted semi-structured telephone/video interviews with three stakeholder groups involved in delivering MOUD: administrators (n = 4), providers (n = 7), and addiction care coordinators (n = 5). Data analysis utilized the framework method. Results: We identified five themes related to patient engagement. First, participants described health system integration as enhancing quality and offering opportunities for addressing patients' comprehensive health care needs. However, lack of knowledge about addiction and stigma among health system providers was felt to limit patient benefits from this integration, including access to MOUD. Second, participants viewed patient engagement as central to the program's policies, practices, and clinical environment. Adoption of a harm reduction approach and maintenance of a non-stigmatizing clinic environment were described as essential facilitators of engagement. Third, while clinics followed uniform operations, physician leads expressed differing philosophical approaches to treatment, which participants associated with variations in clinical practice and patient engagement. Fourth, participants identified key services that bolstered engagement in MOUD, including psychosocial services, psychiatric care, and telemedicine. Finally, staff well-being emerged as a key consideration for patient engagement. Conclusions: Understanding perceptions of those who administer and deliver care is critical for identifying barriers and facilitators to patient engagement in MOUD. Findings suggest potential opportunities for addiction treatment programs to improve patient engagement and ultimately MOUD retention, including integration with other healthcare services to meet comprehensive healthcare needs; adoption of a harm reduction approach; creation of non-stigmatizing clinical environments; investment in psychosocial services, psychiatric care, and telemedicine; and prioritization of staff wellness.
MeSH term(s)	Humans ; Outpatients ; Patient Participation ; Ambulatory Care ; Opioid-Related Disorders/drug therapy ; Ambulatory Care Facilities
Language	English
Publishing date	2023-12-10
Publishing country	United States
Document type	Journal Article ; Research Support, N.I.H., Extramural
ISSN	2949-8759
ISSN (online)	2949-8759
DOI	10.1016/j.josat.2023.209250
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Article ; Online: Real-time evaluation and adaptation to facilitate rapid recruitment in a large, prospective cohort study.

Honushefsky, Ashley / Wagner, Eric S / Sheridan, Kathleen / Spickard, Kathleen M / LeMasters, William R / Walter, Carroll N / Beaver, Taryn / Lennon, Anne Marie / Papadopoulos, Nickolas / Rahm, Alanna Kulchak / Buchanan, Adam H

BMC health services research

2024 Volume 24, Issue 1, Page(s) 336

Abstract: Background: Recruiting large cohorts efficiently can speed the translation of findings into care across a range of scientific disciplines and medical specialties. Recruitment can be hampered by factors such as financial barriers, logistical concerns, ... ...

Abstract	Background: Recruiting large cohorts efficiently can speed the translation of findings into care across a range of scientific disciplines and medical specialties. Recruitment can be hampered by factors such as financial barriers, logistical concerns, and lack of resources for patients and clinicians. These and other challenges can lead to underrepresentation in groups such as rural residents and racial and ethnic minorities. Here we discuss the implementation of various recruitment strategies for enrolling participants into a large, prospective cohort study, assessing the need for adaptations and making them in real-time, while maintaining high adherence to the protocol and high participant satisfaction. Methods: While conducting a large, prospective trial of a multi-cancer early detection blood test at Geisinger, an integrated health system in central Pennsylvania, we monitored recruitment progress, adherence to the protocol, and participants' satisfaction. Tracking mechanisms such as paper records, electronic health records, research databases, dashboards, and electronic files were utilized to measure each outcome. We then reviewed study procedures and timelines to list the implementation strategies that were used to address barriers to recruitment, protocol adherence and participant satisfaction. Results: Adaptations to methods that contributed to achieving the enrollment goal included offering multiple recruitment options, adopting group consenting, improving visit convenience, increasing the use of electronic capture and the tracking of data and source documents, staffing optimization via leveraging resources external to the study team when appropriate, and integrating the disclosure of study results into routine clinical care without adding unfunded work for clinicians. We maintained high protocol adherence and positive participant experience as exhibited by a very low rate of protocol deviations and participant complaints. Conclusion: Recruiting rapidly for large studies - and thereby facilitating clinical translation - requires a nimble, creative approach that marshals available resources and changes course according to data. Planning a rigorous assessment of a study's implementation outcomes prior to study recruitment can further ground study adaptations and facilitate translation into practice. This can be accomplished by proactively and continuously assessing and revising implementation strategies.
MeSH term(s)	Humans ; Pennsylvania ; Prospective Studies ; Neoplasms ; Early Detection of Cancer ; Hematologic Tests
Language	English
Publishing date	2024-03-13
Publishing country	England
Document type	Clinical Trial ; Journal Article
ZDB-ID	2050434-2
ISSN	1472-6963 ; 1472-6963
ISSN (online)	1472-6963
ISSN	1472-6963
DOI	10.1186/s12913-024-10750-5
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Article ; Online: Balancing External Validity and Concern for Psychosocial Harms in Translational Genetic Research.

Mozersky, Jessica / Meyer, Michelle N / Rahm, Alanna Kulchak / O'Dell, Sean M / Buchanan, Adam

Ethics & human research

2021 Volume 43, Issue 2, Page(s) 43–48

MeSH term(s)	Disclosure ; Genetic Research ; Humans ; Research Subjects/psychology ; Translational Research, Biomedical/ethics ; Validation Studies as Topic
Language	English
Publishing date	2021-03-08
Publishing country	United States
Document type	Journal Article
ISSN	2578-2363
ISSN (online)	2578-2363
DOI	10.1002/eahr.500086
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Article: A mainstreaming oncogenomics model: improving the identification of Lynch syndrome.

O'Shea, Rosie / Crook, Ashley / Jacobs, Chris / Kentwell, Maira / Gleeson, Margaret / Tucker, Katherine M / Hampel, Heather / Rahm, Alanna Kulchak / Taylor, Natalie / Lewis, Sarah / Rankin, Nicole M

Frontiers in oncology

2023 Volume 13, Page(s) 1140135

Abstract: Introduction: "Mainstreaming" is a proposed strategy to integrate genomic testing into oncology. The aim of this paper is to develop a mainstreaming oncogenomics model by identifying health system interventions and implementation strategies for ... ...

Abstract	Introduction: "Mainstreaming" is a proposed strategy to integrate genomic testing into oncology. The aim of this paper is to develop a mainstreaming oncogenomics model by identifying health system interventions and implementation strategies for mainstreaming Lynch syndrome genomic testing. Methods: A rigorous theoretical approach inclusive of conducting a systematic review and qualitative and quantitative studies was undertaken using the Consolidated Framework for Implementation Research. Theory-informed implementation data were mapped to the Genomic Medicine Integrative Research framework to generate potential strategies. Results: The systematic review identified a lack of theory-guided health system interventions and evaluation for Lynch syndrome and other mainstreaming programs. The qualitative study phase included 22 participants from 12 health organizations. The quantitative Lynch syndrome survey included 198 responses: 26% and 66% from genetic and oncology health professionals, respectively. Studies identified the relative advantage and clinical utility of mainstreaming to improve genetic test access and to streamline care, and adaptation of current processes was recognized for results delivery and follow-up. Barriers identified included funding, infrastructure and resources, and the need for process and role delineation. The interventions to overcome barriers were as follows: embedded mainstream genetic counselors, electronic medical record genetic test ordering, results tracking, and mainstreaming education resources. Implementation evidence was connected through the Genomic Medicine Integrative Research framework resulting in a mainstreaming oncogenomics model. Discussion: The proposed mainstreaming oncogenomics model acts as a complex intervention. It features an adaptable suite of implementation strategies to inform Lynch syndrome and other hereditary cancer service delivery. Implementation and evaluation of the model are required in future research.
Language	English
Publishing date	2023-05-26
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2649216-7
ISSN	2234-943X
ISSN	2234-943X
DOI	10.3389/fonc.2023.1140135
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Article: Alternate Service Delivery Models in Cancer Genetic Counseling: A Mini-Review.

Buchanan, Adam Hudson / Rahm, Alanna Kulchak / Williams, Janet L

Frontiers in oncology

2016 Volume 6, Page(s) 120

Abstract: Demand for cancer genetic counseling has grown rapidly in recent years as germline genomic information has become increasingly incorporated into cancer care, and the field has entered the public consciousness through high-profile celebrity publications. ... ...

Abstract	Demand for cancer genetic counseling has grown rapidly in recent years as germline genomic information has become increasingly incorporated into cancer care, and the field has entered the public consciousness through high-profile celebrity publications. Increased demand and existing variability in the availability of trained cancer genetics clinicians place a priority on developing and evaluating alternate service delivery models for genetic counseling. This mini-review summarizes the state of science regarding service delivery models, such as telephone counseling, telegenetics, and group counseling. Research on comparative effectiveness of these models in traditional individual, in-person genetic counseling has been promising for improving access to care in a manner acceptable to patients. Yet, it has not fully evaluated the short- and long-term patient- and system-level outcomes that will help answer the question of whether these models achieve the same beneficial psychosocial and behavioral outcomes as traditional cancer genetic counseling. We propose a research agenda focused on comparative effectiveness of available service delivery models and how to match models to patients and practice settings. Only through this rigorous research can clinicians and systems find the optimal balance of clinical quality, ready and secure access to care, and financial sustainability. Such research will be integral to achieving the promise of genomic medicine in oncology.
Language	English
Publishing date	2016-05-13
Publishing country	Switzerland
Document type	Journal Article ; Review
ZDB-ID	2649216-7
ISSN	2234-943X
ISSN	2234-943X
DOI	10.3389/fonc.2016.00120
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Article ; Online: Implementing universal cancer screening programs can help sustain genomic medicine programs.

Rahm, Alanna Kulchak / Bellcross, Cecelia / Cragun, Deborah / Duquette, Debra / Hampel, Heather / Heald, Brandie

Personalized medicine

2019 Volume 17, Issue 1, Page(s) 9–13

MeSH term(s)	Early Detection of Cancer ; Evidence-Based Medicine ; Genetic Predisposition to Disease ; Genomics/methods ; Humans ; Neoplasms/diagnosis ; Neoplasms/genetics ; Universal Health Care
Language	English
Publishing date	2019-12-04
Publishing country	England
Document type	Editorial ; Research Support, N.I.H., Extramural
ZDB-ID	2299146-3
ISSN	1744-828X ; 1741-0541
ISSN (online)	1744-828X
ISSN	1741-0541
DOI	10.2217/pme-2019-0126
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Article: "Go ahead and screen" - advice to healthcare systems for routine lynch syndrome screening from interviews with newly diagnosed colorectal cancer patients.

Schneider, Jennifer L / Firemark, Alison J / Gille, Sara / Davis, James / Pawloski, Pamala A / Liang, Su-Ying / Epstein, Mara M / Lowery, Jan / Lu, Christine Y / Sharaf, Ravi N / Burnett-Hartman, Andrea N / Schlieder, Victoria / Salvati, Zachary M / Cragun, Deborah / Rahm, Alanna Kulchak / Hunter, Jessica Ezzell

Hereditary cancer in clinical practice

2023 Volume 21, Issue 1, Page(s) 24

Abstract: Background: Lynch syndrome (LS) is the most common cause of inherited colorectal cancer (CRC). Universal tumor screening (UTS) of newly diagnosed CRC cases is recommended to aid in diagnosis of LS and reduce cancer-related morbidity and mortality. ... ...

Abstract	Background: Lynch syndrome (LS) is the most common cause of inherited colorectal cancer (CRC). Universal tumor screening (UTS) of newly diagnosed CRC cases is recommended to aid in diagnosis of LS and reduce cancer-related morbidity and mortality. However, not all health systems have adopted UTS processes and implementation may be inconsistent due to system and patient-level complexities. Methods: To identify barriers, facilitators, and suggestions for improvements of the UTS process from the patient perspective, we conducted in-depth, semi-structured interviews with patients recently diagnosed with CRC, but not screened for or aware of LS. Patients were recruited from eight regionally diverse US health systems. Interviews were conducted by telephone, 60-minutes, audio-recorded, and transcribed. An inductive, constant comparative analysis approach was employed. RESULTS: We completed 75 interviews across the eight systems. Most participants were white (79%), about half (52%) were men, and the mean age was 60 years. Most self-reported either no (60%) or minimal (40%) prior awareness of LS. Overall, 96% of patients stated UTS should be a routine standard of care for CRC tumors, consistently citing four primary motivations for wanting to know their LS status and engage in the process for LS identification: "knowledge is power"; "family knowledge"; "prevention and detection"; and "treatment and surveillance." Common concerns pertaining to the process of screening for and identifying LS included: creating anticipatory worry for patients, the potential cost and the accuracy of the genetic test, and possibly having one's health insurance coverage impacted by the LS diagnosis. Patients suggested health systems communicate LS results in-person or by phone from a trained expert in LS; offer proactive verbal and written education about LS, the screening steps, and any follow-up surveillance recommendations; and support patients in communicating their LS screening to any of their blood relatives. Conclusion: Our qualitative findings demonstrate patients with CRC have a strong desire for healthcare systems to regularly implement and offer UTS. Patients offer key insights for health systems to guide future implementation and optimization of UTS and other LS screening programs and maximize diagnosis of individuals with LS and improve cancer-related surveillance and outcomes. Trial registration: Not available: not a clinical trial.
Language	English
Publishing date	2023-11-17
Publishing country	Poland
Document type	Journal Article
ZDB-ID	2252512-9
ISSN	1897-4287 ; 1731-2302
ISSN (online)	1897-4287
ISSN	1731-2302
DOI	10.1186/s13053-023-00270-4
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Article ; Online: A picture is worth a thousand words: advancing the use of visualization tools in implementation science through process mapping and matrix heat mapping.

Salvati, Zachary M / Rahm, Alanna Kulchak / Williams, Marc S / Ladd, Ilene / Schlieder, Victoria / Atondo, Jamie / Schneider, Jennifer L / Epstein, Mara M / Lu, Christine Y / Pawloski, Pamala A / Sharaf, Ravi N / Liang, Su-Ying / Burnett-Hartman, Andrea N / Hunter, Jessica Ezzell / Burton-Akright, Jasmine / Cragun, Deborah

Implementation science communications

2023 Volume 4, Issue 1, Page(s) 43

Abstract: Background: Identifying key determinants is crucial for improving program implementation and achieving long-term sustainment within healthcare organizations. Organizational-level complexity and heterogeneity across multiple stakeholders can complicate ... ...

Abstract	Background: Identifying key determinants is crucial for improving program implementation and achieving long-term sustainment within healthcare organizations. Organizational-level complexity and heterogeneity across multiple stakeholders can complicate our understanding of program implementation. We describe two data visualization methods used to operationalize implementation success and to consolidate and select implementation factors for further analysis. Methods: We used a combination of process mapping and matrix heat mapping to systematically synthesize and visualize qualitative data from 66 stakeholder interviews across nine healthcare organizations, to characterize universal tumor screening programs of all newly diagnosed colorectal and endometrial cancers and understand the influence of contextual factors on implementation. We constructed visual representations of protocols to compare processes and score process optimization components. We also used color-coded matrices to systematically code, summarize, and consolidate contextual data using factors from the Consolidated Framework for Implementation Research (CFIR). Combined scores were visualized in a final data matrix heat map. Results: Nineteen process maps were created to visually represent each protocol. Process maps identified the following gaps and inefficiencies: inconsistent execution of the protocol, no routine reflex testing, inconsistent referrals after a positive screen, no evidence of data tracking, and a lack of quality assurance measures. These barriers in patient care helped us define five process optimization components and used these to quantify program optimization on a scale from 0 (no program) to 5 (optimized), representing the degree to which a program is implemented and optimally maintained. Combined scores within the final data matrix heat map revealed patterns of contextual factors across optimized programs, non-optimized programs, and organizations with no program. Conclusions: Process mapping provided an efficient method to visually compare processes including patient flow, provider interactions, and process gaps and inefficiencies across sites, thereby measuring implementation success via optimization scores. Matrix heat mapping proved useful for data visualization and consolidation, resulting in a summary matrix for cross-site comparisons and selection of relevant CFIR factors. Combining these tools enabled a systematic and transparent approach to understanding complex organizational heterogeneity prior to formal coincidence analysis, introducing a stepwise approach to data consolidation and factor selection.
Language	English
Publishing date	2023-04-25
Publishing country	England
Document type	Journal Article
ISSN	2662-2211
ISSN (online)	2662-2211
DOI	10.1186/s43058-023-00424-4
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Article: Understanding the Patient Experience of Receiving Clinically Actionable Genetic Results from the MyCode Community Health Initiative, a Population-Based Genomic Screening Initiative.

Baker, Anna / Tolwinski, Kasia / Atondo, Jamie / Davis, F Daniel / Goehringer, Jessica / Jones, Laney K / Pisieczko, Cassandra J / Sturm, Amy C / Williams, Janet L / Williams, Marc S / Rahm, Alanna Kulchak / Buchanan, Adam H

Journal of personalized medicine

2022 Volume 12, Issue 9

Abstract: Understanding unselected individuals' experiences receiving genetic results through population genomic screening is critical to advancing clinical utility and improving population health. We conducted qualitative interviews with individuals who received ... ...

Abstract	Understanding unselected individuals' experiences receiving genetic results through population genomic screening is critical to advancing clinical utility and improving population health. We conducted qualitative interviews with individuals who received clinically actionable genetic results via the MyCode© Genomic Screening and Counseling program. We purposively sampled cohorts to seek diversity in result-related disease risk (e.g., cancer or cardiovascular) and in personal or family history of related diseases. Transcripts were analyzed using a two-step inductive coding process of broad thematic analysis followed by in-depth coding of each theme. Four thematic domains identified across all cohorts were examined: process assessment, psychosocial response, behavioral change due to the genetic result, and family communication. Coding of 63 interviews among 60 participants revealed that participants were satisfied with the results disclosure process, initially experienced a range of positive, neutral, and negative psychological reactions to results, adjusted positively to results over time, undertook clinically indicated actions in response to results, and communicated results with relatives to whom they felt emotionally close. Our findings of generally favorable responses to receiving clinically actionable genetic results via a genomic screening program may assuage fear of patient distress in such programs and guide additional biobanks, genomic screening programs, and research studies.
Language	English
Publishing date	2022-09-15
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2662248-8
ISSN	2075-4426
ISSN	2075-4426
DOI	10.3390/jpm12091511
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